What we can handle…


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If I had a nickel for every time I’ve heard the phrase, “God only gives us what we can handle,” I could take us all back to Disney World again!  And again.  Now, don’t get me wrong; I’ve probably even said it to someone before dealing with what I do now. I hear it said so many times when people are going through hard times.  The thing is, I sure wish it were true.  If it were, my life would be full of sunshine and beaches, no laundry, and possibly pedicures every few weeks!  That’s about what I can handle, on my own. This concept is not original to me by any means. I didn’t come up with it, but I do think about it a lot.  People certainly mean no harm when offering this sentiment to those who are hurting, but I think it puts us in a dangerous place of thinking we have some supernatural power and don’t necessarily need His power.

I don’t think for one minute that God looks at someone and says, “She’s strong. She can handle that devastating diagnosis.”  Or, “He’s got it together, he can handle losing a child while battling cancer himself.” Does he look at someone and decide they have just what it takes to handle a lifetime of being a caretaker? I don’t think he singles out a child and decides they would be just right for life in a wheelchair.  The bottom line is that we can handle nothing without Him.  While I don’t believe He “picks” people to handle tremendous hardships because they are so “strong,” I do believe that He cultivates the qualities in us to equip us as we deal with them along the way. He also places people along our path who demonstrate his goodness when we might feel as if nothing “good” happens anymore. Unfortunately, because of sin, we live in a fallen world, and bad things happen to “good” people.  Sometimes, good things even happen those we might consider to be “bad” people.  Until we meet in heaven, that is not going to change. These thoughts have been swirling around in my head for awhile now, and just yesterday, I ran across a quote that puts it perfectly: “God doesn’t give us what we can handle, God helps us handle what we are given.”

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Lindsay’s live-in physical therapists

Now that I’ve let you inside my head for a little bit, (it’s a scary place to be 😉 ) I do have some examples of ways we have been blessed along  the beginning of our journey with Lindsay.  The funny thing is, some of these did not become obvious to me until after the fact.  Sometimes, it was months before I saw how God helped me “handle” even small details that I was too busy or involved to notice at the time.

I’ve talked to my mom on several occasions about the time that we were doing some extensive blood testing per Lindsay’s neurologist’s orders.  Because she was having so much done, he decided to break down the bloodwork into two different days.  (For those who understand more about medical terms than I do, she was having a micro-array of her blood done in order to see if we could find a cause for all of her delays. ) Probably about a week before we came in for the second half of testing, she had already undergone a lot of “pokes” to get the first half done.  The doctor told us we could come in whenever we wanted to finish the second part. (This testing was to be done in a separate part of the hospital, unrelated to the neurology department.)  The day we came in to do so, the nurses got everything set up as we were about to begin.  All of the sudden, the doctor appeared in the area of the hospital we were in and sort of “intercepted” us.  He came in the little room in his “street” clothes, closed the door, and told us we would not be completing the second round of testing.  He had just gotten the results from the week before, and he said he believed the cause of her issues to be something with her 18th chromosome.  Any further testing would be done with the blood we had already taken, essentially saving us more “pokes” and lots of dollars.   What we later realized to be a “God-thing,” was the fact that the doctor wasn’t even working in the hospital that day.  Furthermore, he had no idea we would be there on that particular day.  We never figured out how he discovered we were there, or how he was able to arrive with the information we needed to keep us from proceeding with extra testing.  At the time, we were preoccupied with this new information and worried about what it all meant.  When he left the room, he instructed the nurses to take everything from that day out of the computer as if we had never been there.  In the midst of hearing some hard news, I feel God put us all in exactly the places we needed to be to receive a little unexpected blessing that day.  We may not have realized it at the time, but we do now.

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Almost daily, He gives me little encouragements, in the form of two blond-haired 8 year old boys. While I try to shield them from all of the “grown-up” discussions we might have, I’ll occasionally let them overhear on purpose.  It’s a constant battle in my head between wanting to let them be kids and wanting them to know real life, hard “stuff.” One such example came recently, when I was (and still am) beyond disgusted with an insurance company. I’ll spare you all of the gory details, but, I was loudly voicing my frustration with their choice not to cover some things Lindsay needs. To the boys, it’s black and white.  She needs this = she gets this.  To insurance, it’s more along the lines of- if there is any possible way we can hide the exclusions in the tiniest fine print and avoid paying = success. Anyway, after much discussion about the “injustices” we were feeling, I heard Cason sweetly telling Lindsay, “Oh, you’re gonna talk, Lindsay.  And you’re gonna prove them all wrong!”  Guess who gives him such confidence? (Hint: It’s not me!!) I only wish one of them could talk to all of the fine folks I have talked to at the insurance company! One of these individuals happened to call me on the way home from school one day, so the boys got to hear my end of the conversation.  I kept my cool until I heard the word “unfortunately,” one too many times.  At some point, I remember starting to cry (which I hate) and telling the lady that it doesn’t matter how I feel about their decision, or how unfortunate she feels it is; what matters is my child is not getting what she needs!!!  (Don’t make me go all Mama Bear on you!) A few nights later as I was in the boys’ room to read, I could hear Carter sloooowly scooting down the hall. I was just about to tell him to hurry up, when he came in the room with Lindsay.  He had put her on a blanket and pulled her down the hall so she could “talk” to him in his room!  Some days, it is as if these boys know just what I need to get over my little pity parties that I occasionally throw for myself.(I usually don’t invite anybody. 😉 )

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Carter and Lindsay having a little discussion!

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While still dealing with appealing our insurance company, we talked with several people who encouraged us to pursue other avenues in order to help Lindsay.  I don’t think it was an accident that they gave us these suggestions, and that their suggestions were successful! About a week after exploring one of these opportunities and filling out the necessary paperwork, we learned that a lot of what she needs/will need in the future due to her disabilities,  she will be able to receive!! Every teacher/therapist that I have talked to said they have never seen the process happen so fast!!  Such a huge answer to prayer!🙌🏻

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This past Friday, I picked Lindsay up early from school, since it is so close to my bible class.  I was going to the boys’ school to help with their Valentine parties , so I figured she wouldn’t mind coming along. When I got to her school, I ran into her teacher in the hallway, who couldn’t wait to tell me about her day.  She told me that her physical therapist had gotten her to stay on all fours all by herself for some time!  I realize this might not sound like anything special to you, but it’s HUGE for Lindsay! She does NOT like to be in this position, and usually won’t even do it if you are helping her. Ms. Lisa had tears telling me about it and said that the whole gym was cheering for her! Then, as I was walking into the boys’ school pushing Lindsay, a lady was smiling and waving at me.  I was quickly trying to figure out who she was/if I knew her.  I just smiled at her and pretended to know her when she said, “I’m Carol.  I work with Lindsay! I just worked with her this morning; let me tell you about what she did!” I finally put together that she is the “Mrs. Carol” I always hear about who is Lindsay’s school physical therapist!  She told me how proud she was of her and how much she enjoys working with her.  Another unexpected blessing I needed came when I was least looking for it.

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This is her, “I am supposed to be napping, but I’m not!” face.

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I can give example after example of ways God has quietly guided us as we try our best to “handle” what we have been given.  Some of these blessings are huge, and some might seem so small. Some I share with everyone, and some I keep closer to home.  Things I used to think were coincidences are no more. I don’t think I would have ever realized some of the things I notice now had I not been given the opportunity to parent Lindsay.  I’ve mentioned before that one of the most difficult aspects of her struggles for me is not being able to hear her words.  There are days where she is so excited, waving her hands, “singing,” and I am just dying to know what she is trying to say.  The days where it’s obvious she doesn’t feel great, I wish it weren’t so hard for me to figure out the source of her frustration. But every single  day, I have hope that one day she WILL tell me all of the things she’s been trying to say!

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Telling me all about Sunday School!
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What taking all 3 to the grocery store looks like on a “snow day.”

So, as great as it sounds, I don’t believe God thinks I can handle more than you can.  He does not write these stories of difficulty into my life or yours.  He hurts when we hurt. Those of you who have children know that feeling. We all have lived, or will live through pain, heartbreak, tragedy, etc. The good news is that if we ask, He will walk with us every step of the way as He ‘helps us handle what we are given.’ And I absolutely believe He will shower us with unexpected blessings along the way!

Matthew 7:7-8-Ask and it will be given to you; seek and you will find, knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.

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Psalm 46:1- God is our refuge and strength, an ever-present help in trouble.

Hebrews 4:16- Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

Until next time…

Laura

 

Lately…

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Now that we have made it through Thanksgiving, Christmas, and  are ready to begin a new year, I guess a little update is in order!  (I mean, I’m sure you were just dying for one, right?! ;-)) Anyway, we are slowly coming back down to reality after a trip to Disney World with Chip’s family and celebrating Christmas!  Next week  we are going to have a hard time when school and therapy get started back in full force!  Until then, I am soaking up every minute with all of us at home.  It is so, so nice to not have to be anywhere “on time,” and to take life at a slower pace for just a little while.

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As I mentioned, we just returned (at 2:30 in the morning) on Christmas Eve, from a four day trip to Disney World, thanks to Chip’s parents, (“Gran and Poppa.”) I mainly want to document some about the trip so that I will actually be able to look back and remember one day.  I will be honest in saying that Chip and I probably would have otherwise never made this trip, had it not been for his parents’ idea to go and actually making it happen.  We would discuss it off and on, and we always decided we probably wouldn’t enjoy the crowds, long lines, pushing Lindsay around, etc. You just can’t say no, though, when the opportunity presents itself!  Boy, are we glad we got to experience it, now!  The rest of our family drove down together, but we decided back this summer that if we could make it work for the five of us to fly; we would love to do so. The boys have always begged to fly somewhere, so we figured this would probably be their only chance for a long time!  Also, the idea of such a long drive with the three of them did not excite us.  The fun part was planning all of this without the kids knowing!  We all kept it a surprise until two weeks before the trip!  My mother-in-law, sisters-in-law, and I would just about die discussing it behind their backs and almost exploded before we could tell them! My sister-in-law created a scavenger hunt for the kids that ended up with the words, “We are going to Disney,” spelled out in the clues! Even once they put all of the clues together, I think it took quite awhile for it to sink in with all of them!

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We headed to the airport early on the Saturday after school let out for winter break, and barely boarded the plane before it was time to leave!  Oops.  Seriously, it was completely a “God-thing” that we were able to go through the fast line that morning at security.  Nobody had to remove shoes, fold up the stroller, etc.  Had it not been for that, we would have been in what looked to be at least an hour-long line. I’m sure all of the people who were already on the plane just rolled their eyes as we wagged all of our “stuff,” as well as our three kids on board!  I was so nervous about how Lindsay would do since she had to sit in her own seat, but she was absolutely perfect the entire ride!  She did not make a peep!  She was so fascinated by the flight attendants- particularly the one who kept calling her a little “peppermint!” (She was decked out in red and white from head to toe, with her Minnie Mouse dress, red and white leg warmers, and red sparkly shoes.) Because, why not?!! Chip and I sat on different rows, so we sort of mouthed to each other that we would just be the last ones to get off of the plane in order to not delay the people who were overly anxious to do so!  (It turned out to be a great thing, because the flight attendants helped us get everything, and even loaded us up with snacks and drinks to go!)

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I know many of you have been to Disney with your kiddos, but we just could not get over how easy they make the whole process! Seriously, from the time you land until you come back home, the whole experience is amazing!  If you are unsure about something, there is an employee about every five steps to help you! Even the security guards who check your bags are pleasant! (I know quite a few employees around here who could take a note or two! 😉

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Isn’t she lovely?!!
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Even Donald needs a pat on the head sometimes!
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I caught Cason holding Lindsay’s hand one night as we were watching the fireworks.

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We met up with the rest of our family later in the day, went to dinner, and started early the next morning going to the parks.  For three days, the boys rode everything they could with their big cousins, Parker and Sadler, and had the time of their lives.  Since the weather stayed in the 70s and 80s, it was hard to believe we were a few days away from Christmas!  We were able to get a “disability pass” for Lindsay, so that she could ride some of the smaller rides without having to physically wait in line for them.  I think what she enjoyed the most was watching all of the lights and fireworks at night!  I think we all made the most out of every second of the trip, and I am so glad we got the chance to go!

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Cason was so tired that he sat up in the middle of the night and said, “I wanna ride THAT ride!”
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The boys showing Lindsay her video from Santa!

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On our final day, the rest of Chip’s family left in the morning to begin the long drive back, while we stayed at the hotel until late afternoon when it was time to go back to the airport.  It was almost funny that the boys were swimming two days before Christmas!  I’ll say that our trip back wasn’t quite as smooth as the one on the way down, due to crazy weather all over the place!  We had several delays in Orlando and several more in Atlanta, so we had lots of “fun” airport time.  Fortunately, Lindsay slept, and the boys made an adventure out of the airports! They fell asleep as soon as we got on the plane in Atlanta, and had no idea that we had even gone anywhere when we woke them up back in Nashville!

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“Don’t cry because it’s over, Smile because it happened!” ~Dr. Seuss

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Now that we’ve been back home for a little over a week and celebrated Christmas, I’ve finally taken the time to reflect on life a little bit. On Friday, when I was getting on the treadmill to watch the VOLS play, I decided to put Lindsay in her stander to give her a little exercise, too.  Usually, when I am strapping her in, I have to get a strong grip on her to keep her from falling until she is secured.  Not this time!!! I realized that she was just easily standing there, without any help from me! Once I strapped her in, she stood straight and tall for over an hour!  She has come a long way this year, because she generally doesn’t appreciate having to stand for that long.  And she will let you hear about it!  A few days before our trip, as some of you saw on Facebook :-), we got great news from her neurologist!  Her EEG showed no signs of seizures, and she does not have to go back to him for a year! Even better news to this momma was when her doctor walked in the door, smiled, and said, “This looks like an entirely different child! She’s so much stronger.  The next time I see her, she will be walking!” (He’s not known for smiling or his warm and fuzzy personality! ;-)) He even told me he wanted to take her home, but I informed him that I would have to “hunt him down” if he did that. 😉

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Probably the best picture of all time. My dad was “watching” Lindsay one day while I picked the boys up from school!

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One of the things I have read about  Pitt Hopkins kiddos is that they all seem to love music.  I’ve certainly noticed that with Lindsay, so I try to play as much music as possible.  She’s really started to “dance” along with it. Some of you may have seen the video of her dancing along to “Good, Good Father,” by Chris Tomlin the other night. A fellow “Special Needs” momma sent me a message after she saw it, and I wanted to share an excerpt with you.  I’ll try not to cry again. 🙂

     “I don’t doubt that they’ve told you some terrifying things about what Lindsay’s cognitive potential may be.  When I watch this video, it is so so SO clear to me in Lindsay’s face and her eyes that she’s not just dancing and having fun–she GETS it. She understands those words, likely in a way most adults don’t. It’s funny to me that doctors say things about how kiddos like ours deal with intellectual disability, etc., but I see time and time again that their understanding of God blows most ‘typical’ kids out of the water. They comprehend the spiritual on an amazingly deep level. That light in Lindsay’s eyes as she responds to those comforting words is such evidence that she gets it–all the things that truly matter, in this life and in eternity.”

She went on to tell me about a dream she had where Lindsay was speaking perfectly articulate words, and how she couldn’t help but wonder if maybe it was a tiny glimpse from God of what her future might hold. You should know that I read this in the middle of the night, so I didn’t do a whole lot of sleeping after that.  (I didn’t mind a bit!) Now, I have those dreams a lot, and so do other members of my family.  I cannot tell you what it does for my heart to hear that my precious girl has even found her way into the dreams of others.

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Cheering on the VOLS!!!

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I’ve written before about seasons of life. Recently, things have been pretty “sweet.” They’ve also been difficult, as the scope of Lindsay’s disabilities become more apparent.  All I know is that our Good, Good Father is in control of it ALL.  He doesn’t just “hang” around for the good times.

 We have a special privilege that few people enjoy in that we get to watch our girl achieve things in “slow-motion.” As much as that can be frustrating sometimes, I’ll often remind myself that I’m now getting to witness so many of the things that my boys did without me giving it much thought.  It is as if God is gently reminding me, “Slow down. NOTICE HER!” I got a plaque for Christmas from my aunt that has one of my favorite sayings on it: “Life isn’t about waiting for the storm to pass, but learning to dance in the rain.”  So, in my family, we’re going to dance!

**Thank you, to so many of you who never cease praying on our and Lindsay’s behalf.  She is going to do amazing things!

~I wanted to share some of the lyrics of “Good, Good Father”

“Oh, I’ve heard a thousand stories of what they think you’re like/ But I’ve heard the tender whisper of love in the dead of night/ And you tell me that you’re pleased/ And that I’m never alone

You’re a Good, Good Father/ It’s who you are, it’s who you are/ And I’m loved by you/ It’s who I am, it’s who I am

Oh, and I’ve seen many searching for answers far and wide/ But I know we’re all searching for answers only you provide/ Cause you know just what we need before we say a word

Until next time…

Laura

Grateful

“Give thanks to the Lord, for he is good; his love endures forever.” (Psalm 118:1)

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My grandma, who is known for NEVER smiling in a picture, can’t help herself when holding Lindsay!

I noticed last week that it has been a year since I started sharing Lindsay’s story on this blog!  And, since we are all getting ready to celebrate Thanksgiving, I wanted to document some things for which I am grateful.  I’m quite positive the things I appreciate now are different from even a year ago.  Time, perspective, and God’s grace will do that to a girl. While of course I am thankful for many obvious things, such as my husband and children, my parents and in-laws, health, and the many freedoms I enjoy, I hope to share some things that might not be so obvious.

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Messes

What?!  As a person who loves some organization, things in their place and clean, I am learning to see beyond the mess. In a lot of ways. Of course, my kiddos make literal messes that can drive me crazy, but their mess equals fun most of the time.  If there is one thing they all three know how to do, it is have a good time.  So, while I might step on more Legos than my feet can stand and pick up more “stuff” in random places, I know that they have fun.  Isn’t that part of childhood? I’m glad that my home is a safe place for them to do that!  I’m grateful that they feel comfortable doing the things they love here. (I guess I should say grass stains, too!  I don’t love trying to remove them from khaki pants almost every day, but they are the sign of a good day at school for my boys!  Forget what they actually learned, they are most thrilled when they’ve had a good game of football with their friends at recess.)

I’m also grateful for figurative messes.  One thing I keep learning over and over is that out of the hugest messes often come the biggest blessings.  Think of any major disaster that happens-almost always, people step up to help and show that there is still plenty of good left in the world. When we cannot possibly see any good coming out of a situation that seems unredeemable, God has a way of redeeming it anyway! A year ago, I was thinking almost daily, “What good can come of this? What good can come from my little girl struggling through every single milestone, possibly not reaching some at all? How on earth do we parent her? What is this stupid syndrome, anyway? And, why does she have to have it?” But today, I am grateful. Am I happy that she has this “rare” condition that proves more unique by the day? Nope.  But, I can be grateful for what I have learned, whether I like how I had to learn it or not.

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Nope, not napping. But, I am taking my pants off!

“Little” things

When I say little things, I mean things such as the days where Lindsay actually takes a nap.  I love it when it looks like she is trying to whisper, “Hi” when I get her up in the mornings.  I’m thankful that now she will raise her arms from her elbows when you reach down to pick her up. (Do you know how much we have longed for her to just reach out her arms and acknowledge that she knows who we are?) We want her to want us to hold her.  I’m grateful for the way the boys just take over sometimes when they can tell I have about lost all my patience.  I’ll catch them patting on Lindsay’s back, trying to read her a book, etc.  They have no idea how much that means to me. I’m grateful for the way the boys stick up for one another.  They may argue over the silliest things some days, but you had better believe that if one of them is in trouble-the other one jumps in to “help.” I sometimes have to remind them that if I need help parenting, I will let them know!  Honestly, though, I secretly love that they are there for each other. I hope they always will be.

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I’m thankful that if Lindsay is not feeling well or is tired, almost always a bath will make her happy!  I’m thankful that as she has a lot fewer instances of getting so sick with a cold that she scares me.  I’m thankful that her pediatrician also goes to our church, so I can bug him with a concern whenever I have one. 😉

I’m certainly grateful that when I get out of bed in the morning, I can just get up, put one foot in front of the other, and walk to wherever I need to go. (If you’re like me, you probably just do that on autopilot.) Now that I have a child for whom that is not (yet) possible, I appreciate it. Oh, do I appreciate it. Likewise, I am thankful that I can drink whatever I want. Unlike Lindsay, I don’t have to have my milk thickened every single time I drink in order to keep from aspirating.  (Hopefully one day, she’ll get to experience something else besides milk with cereal in it to drink! 🙂

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Ms. Lisa

Y’all. This lady is one of my heroes.  She is Lindsay’s preschool teacher, and she is fantastic! I know that God worked everything out just perfectly so that Lindsay could be blessed by this lady.  If ever anyone were living out her calling, Ms. Lisa is.  I do not know how she does her job every day without losing her mind, but she does.  She will tell me stories as if Lindsay is truly having a conversation with her, and I LOVE IT!!!  Last week, I laughed so hard when she told me that Lindsay said she did not care for the turkey and dressing they had at school; that it needed more seasoning!  If a child is having trouble sleeping, she will lie down on the floor beside them to help them sleep. (Most often, though, Lindsay tells her she is not interested in nap time!) She carries the children who cannot walk, changes diapers, gets on their level and looks into their eyes, and makes every single one of them feel loved! One day, as kids were hanging all over her, I told her I bet she goes home and just wants to be by herself!  She said, “No, I go home and wonder if this child is still sick, or if that child ever took a nap.  I mostly wonder how my kids are doing.” How can I not be grateful for someone like that?

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Humor

I’ve mentioned this many times before, but I would not make it without finding something funny every single day.  Luckily, these people I live with make that easy!  The best part is that most of the time, they are not even trying to be funny.  I could write a book of all of the random, hilarious things Carter says.  Put him and Cason together, and I am entertained almost constantly.  For whatever reason, their newest favorite things to do include spontaneously dancing to whatever music is on (regardless of where we are) and rolling down the window in the van to ask questions of whoever may be walking down the sidewalk!? Carter likes to place “bets” with me that he can sleep all night in some bizarre outfit, like his pajama pants around his neck and his shirt tied around his waist. Tonight, I heard him breathing really loudly and jumping up and down in the shower, and I went in to discover that he was (on purpose) in freezing cold water.  I don’t even know what to say!

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Carter left this on our photographer’s “window” after getting our Christmas cards done.

Christmas

I love this time of year, and I love that my boys still believe (despite some of their friends’ best efforts!)  They convinced me to go ahead and decorate this past weekend, and of course, that meant that our “Elf” had to make an appearance.  It is worth every second to hear the sweet conversations they have with each other!  I’m also especially thankful that they know the real reason we celebrate.

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My church family

I am most grateful that the congregation where my family attends is a grace-filled place.  Nobody is pretending to have it all together, and certainly nobody claims to be perfect.  I love my ladies’ bible class on Fridays, where we’ve all lived a lot of hard life.  The deal is, though, we feel comfortable sharing the hard things without fear of judgment. Instead, we experience a time where we listen and learn from one another, and most importantly, pray. I also love the opportunities to serve, especially for my children.  I feel there is not much more important that they can learn.

One of the things that my church does well is accommodate Lindsay and her needs.  I know it is not like that everywhere, but I am so grateful that she is recognized there!  She has been in the same class with toddlers since she began attending, but she is getting ready to move up with peers her own age.  Our wonderful children’s minister, Julie, has met with me and asked me exactly what she needs, including adaptive seating, and she is making it happen! I feel so fortunate to have such compassionate people loving on my girl there! 

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Grace

I mentioned my church as a place where grace is what we do. What’s greater than that, really? Receiving something that we absolutely do not deserve is a hard concept to grasp.  If you have children, you probably give grace without much thought when they mess up.  God does that with all of us, doesn’t He? And the great thing is, it is not up to us to decide who receives His grace and who doesn’t.  I am so, so thankful that.

 

“As you go through this day, look for tiny treasures strategically placed along the way. I lovingly go before you and plant little pleasures to brighten your day. Look carefully for them, and pluck them one by one. When you reach the end of the day, you will have gathered a lovely bouquet. Offer it up to me with a grateful heart. Receive My Peace as you lie down to sleep, with thankful thoughts playing a lullaby in your mind.” (Excerpt from Jesus Calling, by Sarah Young)

My bet is, in whatever season of life you find yourself, you have plenty for which to be grateful.

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Until next time…

Laura

Keepin’ it real…

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So, Carter is obsessed with space. OBSESSED. It was completely his idea to put his helmet on Lindsay, make a black and white picture, and write the Neil Armstrong quote on it! I don’t know what I’d do without him!!
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I cannot get enough of Lindsay’s school picture proof! HILARIOUS.

When I decided to share our/Lindsay’s story so publicly, I had to contemplate whether or not I was ready to commit to being so vulnerable- especially to (some) complete strangers.   After thinking and praying about it for awhile, I felt that if sharing my thoughts and feelings about what we deal with on a daily basis might help even one person  become aware of what a lot of families of children with special needs endure, then sharing would be worth it. It is much easier for me to write than to express my feelings aloud. And, let’s be honest; this is often my therapy.

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A few weeks ago I decided I was finally ready to do a little research on Pitt Hopkins Syndrome, which is the “fancy” name for Lindsay’s condition.  If you have been following since the beginning of this blog, you may remember that I mentioned only being able to handle so much information once we had a diagnosis.  The way I looked at it, the geneticist telling me the basics of Lindsay possibly not being able to walk, talk, or live independently was ENOUGH.  I’m sure partly because I wanted to protect myself from even more hurt, I just could not read anymore information for nearly a year.  Ironically, the day I finally joined a few parent support groups on Facebook and read more about the syndrome, I learned that the very next day was Pitt Hopkins Awareness Day.  Some of you may have seen one or two of the videos I shared that explained a bit more about how rare Lindsay’s syndrome is.  When I showed my boys that around only 500 people in the world have Pitt Hopkins, Carter’s first reaction was, “Wow, Lindsay sure is LUCKY!”  Umm…not exactly how I would describe it, but whatever! For me, while it is wonderful to have other parents who get it to learn from and be able to share experiences with, I also have to find a balance with how much time and energy I can devote to doing so.  I am slowly learning that you have to do what works for you, and that no two people handle things identically. (That’s not just true of dealing with lifelong “syndromes,” but most anything !)

Now, I have entitled this entry “Keepin’ It Real,” for a reason.  While we have sort of settled into and accepted a life that is much different than we pictured, I don’t want anyone to assume every day is just wonderful.  I think Chip and I, and our family members, all take turns having bad days. I have days where I don’t want to have to think about where I should park the car in order to be able to easily put Lindsay in a shopping cart. There are days when I wish therapies, special chairs, adaptive toys, etc.,  weren’t necessary. I wish I didn’t have to avoid going certain places because I know there is nothing Lindsay can do there. I have a lot of days that I just want to have a conversation with my girl. I want to hear those cute little words that preschoolers say, like when my boys used to say, “lellow” instead of “yellow.” Some days , I just want to be a “regular” mom, not the mom that people “pity” or “admire” because I’m supposedly so “strong.” I so want to wake up from one of the dreams I have of Lindsay walking and talking, and I want them to be REAL.

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Some days, you just don’t want to stand!!!

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I can still vividly remember part of a prayer that my friend prayed when Chip and I got married fourteen years ago.  He said, “You will give them trials, Lord, to refine them…”.  (Thanks, David!! ;-)) I also remember secretly thinking, “About those trials, Lord, it’s totally okay if you don’t give us any!” Ha! Wasn’t that cute? The truth is, though, if everything always goes well, how would we ever know how dependent we are upon Him? When things are going well, we start to get a false sense that we have it all together. We become focused on us, rather than Him. It is when we are presented with challenges that we have the choice to cling to Him, or turn away from
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We go through days of feeling as if we have somehow “failed.” Failed at having the “typical” family. Failed at giving our families a healthy little girl. After all, she is the only  granddaughter on both sides. Then there are the feelings of guilt that creep in, for ever feeling that way at all. Though we know nothing we did or didn’t do “caused” what Lindsay has, I’d be lying to say we don’t let that nagging little devil sneak up on us sometimes.  That’s the thing about feelings, though, they can be tricky.  If we let how we feel determine how we act, we could be setting ourselves up for disaster.  I love what Lysa Terkeurst says about feelings: “Feelings are indicators, not dictators. They can indicate where your heart is in the moment, but that doesn’t mean they have the right to boss you around.” I think that is so true in many instances. Even when my boys are having one of their little disagreements, they will often immediately react strictly out of anger, fear, frustration, or maybe even jealousy.  I would imagine we as adults do that on occasion, as well. 😉

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A very special lady sent this to me. A perfect reminder that we are “braver than we believe!”

I just know that I want to do better. I want my feelings to get out of the way sometimes. I don’t want how I feel to determine how I act a lot of times.  I want to treat people-all people– well. Not just the people that believe the same things that I do. I want to be like the little boy at a bouncy place we went to the other day.  He was just a toddler, but he noticed that Lindsay was just sitting there inside the bounce house by herself, chewing on her necklace.  While other kids were running around, jumping, and just being kids, he squatted down and looked in her eyes. He noticed her.  He didn’t say anything, but he just sat right down and tried to engage her. How different would our world be if we all did that? Rather than bashing someone because they believe differently than you do, or ignoring them because they look different, maybe just have a conversation. Rather than hiding behind the screen on social media and berating people who have different opinions spiritually or politically, what if we respectfully listened to and learned from one another? (Okay, so maybe I got off a little on my “soapbox,” but remember the title?!!)

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On the days where I desperately want to feel sorry for myself- feel sorry for Lindsay, I want to do what Romans 12:9 says and “Cling to what is good.”  We are so incredibly blessed to have these three children, when there were plenty of times we thought one might not even be possible.  I truly do stay entertained every single day!  How can I not, when I am reading at bedtime and look down to see Carter completely decked out in his astronaut costume, helmet and all? If anyone could/should feel sorry for herself, it would be my girl.  She’s too busy clapping for herself and learning to stand little by little.  And, I’m busy oversharing pictures and videos of her doing it! (I should probably share less of my kiddos, but they are what give me such joy! I can’t help it!) I don’t want to spend my life worrying about the future and focusing on what I don’t have or what doesn’t seem fair. I want to soak up every single moment, because that is truly all we’ve got.

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Because I am human, I’m certain that I will experience many more days where I just don’t even want to know the word “disabilities.”  But on those days, my prayer is that I will remember everything that I do have. I hope that I “cling to what is good,” and I hope to teach all three of my children to do so as well. Even though this is not the position I would have ever chosen for myself, God chose me for a purpose.  Whether I understand it or not, I will do my best to fulfill that purpose.

So, like my mother has always said, “If you don’t want to know what Laura thinks, don’t ask her!”  Sometimes, I might just tell you anyway! (I just like to look at it as being transparent!) Seriously, though, thank you for being my virtual “therapists!” Thank you for “listening,” even when I don’t make much sense. And, thank you for indulging me as I continue to overshare my kiddos! 🙂

Until next time…

Laura

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Best picture of all time.

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“This is the day the LORD has made; let us rejoice and be glad in it.” (Psalm 118:24)

 

Some things I wonder…

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Her sweet teacher, Ms. Lisa
Her sweet teacher, Ms. Lisa

Before I share what’s on my mind lately, I wanted to update those of you who are following Lindsay and don’t already know how things have gone since my last post.  First, she did start preschool the day after her third birthday, and it has been wonderful! We feel very fortunate to have such loving ladies loving our girl.  She seems very happy; and I am sure if she could talk, she would say the same! Her sweet teacher, Ms. Lisa, is kind enough to send me texts with pictures and videos letting me know what Lindsay is working on and how she is doing from day to day.  (She did have to be out this past week due to sickness, but we hope by Monday she’ll be back to her normal, happy self!)  She has continued going to physical therapy and speech at Pediatric Therapies on Tuesdays and physical therapy only on Thursdays.

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Now, back to our regularly scheduled program… ;-). I do a lot of thinking/wondering, partly because I have difficulty sleeping and mostly because I am just curious by nature. So I thought, “Why not share some of my random thoughts with you?” We’re friends, right?! 🙂 Obviously, most questions are rhetorical, some are deeper than others, and some are just funny. (At least to me. Just play along! ) And, I just cannot be serious all of the time.  It’s part of how I cope and survive!

Something that keeps coming up lately in my head is wondering why, if doctors/scientists can create new hands/feet/body parts for people, can they not create a chromosome 18(q) and give it to my girl? And furthermore, how does one tiny piece of missing chromosome have such an impact on so many functions of the body? Man, I still hope and pray for the day that all of the children who have missing chromosomes could just get what they’re missing. Too much to ask?

This next one is kind of a big deal to me. Why do some people not get sarcasm? I mean, it’s my first language. (I warned you not everything will be so serious!) I come from a long line of sarcastic people, so it fortunately/unfortunately just comes naturally to me!  Now, I’m not referring to being “mean,” but more of a “dry” sense of humor.  People who just get it are my kind of people!  Nothing’s much more awkward than when you’ve said something that is meant to be funny/sarcastic, and the other person thinks you are completely serious.  Ninety percent of the time, I’m not! Let’s all lighten up a little! 🙂

Can someone please explain to me how children who come from the SAME parents can be so very different? My brother and I have always been almost as different as can be, but I notice differences even more in my own children.  My boys, who are twins, could not be any more different.  Other than obvious physical differences, their personalities are completely opposite.  Carter is our “clown,” always doing or saying something to make us laugh.  On the other hand, he is very sensitive and serious about the things he values.  Cason, however, is more of the “rule follower,” and definitely is a people pleaser.  Like his mother, unfortunately, he fits a LOT of stubborn into his forty-something pounds!  (As soon as he figures out that I’ve had much more practice than he has, we should be okay!)

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As unique as my boys are in their personalities and interests, they share a common admiration for Lindsay.  Not a day goes by that they don’t try to do something to make her laugh!  As they are getting older and realizing some of her present limitations, they have become more aware of others in the world around them who may have extra difficulties as well. That cannot be anything but a blessing.  Last night as Lindsay was MAD and crying about not feeling good, Cason sweetly said, “Lindsay, when you’re mad, I’m mad. When you’re sad, I’m sad. And, when you’re happy, I’m happy!” One day on the way to church, Carter said, “You know, I think everyone has special needs.  It’s like we all have something that doesn’t fit inside our bodies.”  Such empathy and wisdom from some eight year olds.

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I found this in the hall outside of Cason’s classroom. Hit me right in the gut.

Not everyone will understand my next question, but, where have all the manners gone?  I don’t know if it’s just a southern thing, but we were raised to say, “Yes Ma’am,” “No Sir,” “Please,” and “Thank You!” I don’t think I can recall the last time I was in a store that the person working there actually said, “Thank you!”  Maybe it shouldn’t be such a big deal, but is it really that hard?  When I taught third graders, I would work all year with them on using their manners. It is possibly just my preference, but a “Yeah,” “No,” or “Huh?,” is just never going to sound as nice.  Manners go a long way!

That reminds me of my next question.  When I am at the grocery store with Lindsay and have filled up my cart with groceries, why does it make any sense for the employee to then put all my groceries in another cart after scanning them?  It would be different if said employee were planning to actually help take my cart out to the car, but they have absolutely no plans to do so! So I find myself every. single. time. nicely asking the lady/gentleman if it would be okay to put the groceries back in the cart that is carrying my daughter.  (This is only after a few times of my pushing TWO carts out to the car and deciding it wasn’t so much fun.)

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On the more serious side, I so often wonder what Lindsay is thinking? Of all of the “she may nevers” we heard from the doctor when she was explaining her diagnosis to us, the one about her possibly not ever talking affected me the most.  I want her to talk to me. I want her to tell me what she likes and what she doesn’t.  I want her to say my name, her daddy’s name, her brothers’ names.  I want her to tell me what she wants to do today or what she would like to eat.  I want her to tell me what she likes to wear. For now though, she tells me what she wants through her smiles, laughs, squeals, and babbling.  (For the past week, she has been strongly vocalizing that she does not feel well and has an ear infection. :-()

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Waiting on the dr. Not feeling great at all.
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Pretty sure “Buela” sang every song she knew twice while we waited!
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If we could just bring a roll of that paper home with us!

Okay, reading that one aloud to Chip made me have tears, so we need to lighten up a little!  I cannot be alone in wondering why on earth it is so painful to actually unload a dishwasher or put away folded laundry? If you really think about it, neither job takes a whole lot of time to actually do; however, I JUST CANNOT!!! I wash clothes every day because, well, I have a lot of people in my house who wear a lot of clothes every day.  Washing and folding them is not the problem.  Luckily, I am a genius, and I am teaching the boys how to do it “my way” a little at a time. 😉 (By the time I teach them how to iron and unload dishes without breaking them, they will hopefully have happy wives some day. Of course they will not need to date until at least age 40, so I’ve got time.)

Another important question I feel we need to discuss is why we hate taking naps as children, but it might possibly be my favorite thing as an adult?!  I was at least fortunate enough that my boys took some form of a nap up until kindergarten.  It was fantastic!  These days, however, they will not even consider the idea.  Even if they have had a sleepover or just stayed up way too late and certainly could benefit from one, they will NOT nap.  On the off chance that they do, I can go ahead and call the doctor.  They are most definitely sick!!  Lindsay is another story altogether.  Her sleep patterns have always been unexplainable.  She may not nap for days and then take a four hour nap one day.  I’ve been known to get up in the middle of the night and just find her sitting up in her bed happy and playing.  From what I have learned, apparently a lot of children with chromosomal abnormalities also have sleep issues.  Good times.  Can somebody please put me in “time-out” so I can have a nap?

So, while some of my questions are serious and some less-so, I appreciate your letting me ask them “out loud.” The biggest question of all, is why God would send His perfect son as a sacrifice for me, a sinner? Why does He love us all so much when we openly disobey and disappoint Him daily? Why does He love me enough to let me wrestle with my feelings of disappointment, uncertainty in His plan, and outright anger sometimes?  All I know is He loves me, He loves us all, infinitely more than I can even love my own children. I cannot even imagine that, but it is true.  I also know that I will get to ask Him all of these questions face to face one day, and I promise I will use my manners!

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” (John 3:16)

Until next time…

Laura

 

 

 

A New Chapter

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Well, it has been a long time!  We’ve truly spent the summer “Savoring the Day(s),” as my sweet friend Sara encouraged us all to do a few years ago, in the midst of her battle with cancer.  I never, ever forget that advice and encouragement from her to all of us.  We spent our summer swimming as much as possible, taking Lindsay to therapy, going to the library, bouncing at jump places, and just enjoying a little bit of freedom! Now that Carter and Cason are back in school, we are getting used to a  “new normal” once again.

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I’ve been trying to mentally prepare myself for the fact that in a few days, my baby girl turns 3! I am a wee bit of a mess lately thinking about it and all that is about to change. I remember her birth day clearly.  I was so nervous on the way to the hospital, because I was worried about the boys and how everything would be different for their little world.  I was even sad about being away from them for the few nights that I would be in the hospital.  They had just started kindergarten, and it was very important for me to make sure they had what they needed, clothes were ironed, lunches were made, etc. I’m sure I drove Chip crazy with my lists and instructions!  Lindsay was born before the boys even started their school day that Thursday, and everything went well.  She did end up spending one day in the NICU due to some apnea issues, but, otherwise, everything seemed to be fine. I think back to that time often and marvel at all that we have dealt with since then.  Here we are, 3 years later, with a precious gift that has brought us more pure joy and more tears than I ever thought possible.

I’m in a bit of denial that things are changing so much, but I know that it is just another part of life.  A little over a week ago, we had Lindsay’s IEP meeting with the school system to go over the results of all of the assessments they performed on her several weeks ago. I prayed a lot about it,  and requested that many of you do the same.  I felt such peace during the meeting, even though all of the things they told me about her abilities were excruciating to hear.  I know what she can and cannot do at this point, but it is another heartbreak altogether when you have to listen to different therapists, the school psychologist, and special education teacher read their findings.  I just never imagined myself in this position.  Who does, really?

We agreed on the goals that were listed for Lindsay for this year, and I made my requests known that I would like for her to only go three days a week.  Fortunately, our insurance will at least help pay for some of physical therapy, so we want her to continue where she has been going the other two days of the week in addition to the therapy she will receive at school. Also, we just learned for sure today that she will still be able to continue with speech therapy, thanks to our wonderful physical therapist’s research and persistence!  Praise God!!!

We just got home from therapy a little bit ago, and I am having a hard time.  Since Lindsay will not be able to continue with occupational therapy except for at school due to our insurance, we had to say goodbye to our O.T., Mrs. Hilary, today.  I’m crying even as I type this!  While initially we were not excited at all about having to go to so many therapies for our girl, we have come to love these  ladies like they are part of our family. I don’t know if I can even adequately explain what these ladies do and what they mean to us, but I will give it a try. (And, I know that I will embarrass them to death, but surely they’ll forgive me!)

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Mrs. Carol is the first therapist we met early on when Lindsay’s neurologist suggested we get her physical therapy. At this point we still had no idea what was causing all of her delays, so Mrs. Carol instantly became such a great resource for us.  She has always been positive, proactive, resourceful, and just a great friend.  She has walked through so many things with numerous families over the years, and I don’t think much surprises her anymore.  She will stay up nights researching new ideas and resources for her families.  She goes above and beyond her “job description” to make sure she provides the absolute best care possible.  She has listened to me go through all of my stages of grief, and been there as I have occasionally “revisited” a few!  I feel certain that we have discussed every possible topic during our many hours together,  and will probably cover many more!

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I mentioned Mrs. Hilary earlier, but not enough!  She has been invaluable to us as Lindsay’s Occupational Therapist these last couple of years.  She definitely has a servant’s heart, and is one of the most compassionate people I know.  She too, has listened to me work through my feelings on more than one occasion, and she has always looked for creative ways to help Lindsay.  It is obvious that what she does is her calling; it is certainly not just a “job.”  She is always thinking, coming up with innovative ideas to try, and most importantly, always listening to whatever our concerns may be.  She is deeply spiritual, and that is evident in everything she does. (I’ve tried to talk her in to just working for our school system, but I think to no avail!)

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Mrs. Hilary and Mrs. Elizabeth
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Carter “helping” Mrs. Elizabeth. Not at all.

Mrs. Elizabeth has worked with Lindsay on speech and feeding, and thankfully, we are going to get to continue with her!  We found out just last week that this might be a possibility, and we are so excited that everything worked out for us to be able to do so!  We have so much in common, as Elizabeth also has twin boys and a little three year-old daughter.  We have probably laughed more than we should have, certainly have shared a few tears, and also figured out how to solve most world problems. 😉  One thing I love most about Elizabeth and will never forget is the way she responded the day after we learned just how severe Lindsay’s diagnosis is.  I handed her all of the information the geneticist had given us, and she just said,  “Do you know how many children have come in here that doctors said would never walk or talk?” She went on to tell me of some of the success stories she has seen and that doctors have to give the worst case scenario.  She never even batted an eyelash.  She probably doesn’t even remember any of that conversation, but I do. We have had some of the most hilarious conversations, and if you ever get ahold of either of our texts to each other-we’ll both deny they belong to us!

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Finally, Mrs. Liz is Lindsay’s developmental teacher, who has been coming to our house almost every Friday for nearly two years.  She looks at all of the goals set by Lindsay’s therapists, and she works with her on a variety of things each week.  She has become like an extra grandmother for Lindsay.  It is evident how much she loves Lindsay and how much she does for her that is not even required of her.  She has even been to work with Lindsay when ,technically, she was supposed to be on “vacation.” She has a granddaughter who has many special needs of her own, so she has been in our shoes when it comes to the uncertainty and fear that accompanies “scary” diagnoses. Mrs. Liz has always seen the best in Lindsay and believes in her continuing to exceed the expectations of doctors.  Everyone needs a Mrs. Liz!

“I thank my God every time I remember you.” (Philippians 1:3)

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So, as hard of a time as I am going to have with it, Lindsay will start preschool on Monday.  We move on from some of what has been a “safety net” for us to a completely new territory.  I know every parent experiences anxiousness and probably some sadness when each of their children goes to “school” for the first time, but this time just seems extra difficult.  While I am excited about her school and the teacher she will have, I am afraid of a lot of the unknowns.  When she is at therapy, I get to see what she is doing. I know if she is happy.  I have to learn to “let go” a little (or a lot) and trust that her teachers have her best interest in mind.  What concerns me the most is the fact that she cannot tell me if she has had a good day or not.  Will they know when she needs something  or learn all of her little “Lindsay-isms?” Can I go hide out and look in the window to see what she is doing? 😉

On the other hand, I will  get to have (a little) time to do some things I haven’t been able to do for awhile now.  My life has pretty much been devoted to her every need for three years now.  I will finally go back to the ladies’ bible class I used to attend on Fridays.  I may actually get my house cleaned, or I may not!  But, oh, how I will miss my favorite girl!  She is nothing but pure joy!  She has taught me so much about being happy no matter what.  Though she has many difficulties, some crazy sleep schedules, and needs more than most children, I love every little part of her.

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Aunt Jennelle and her favorite girl!
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They might need sleep, but I sure don’t!

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Saturday, we will have friends and family come to celebrate our girl’s birthday.  I will enjoy every minute of it, and I’m sure we will continue celebrating on Sunday, which is her actual birthday. On Monday, the new chapter begins.  I will begrudgingly put “Standard School Attire” on my girl instead of the smocked outfits and dresses I love so much!  She will ride to school with us as I drop the boys off, and then we will be on our way to Glendale.  I will try my hardest to make it back to the parking lot before I break down. I know this will be good for her-good for us, but that doesn’t make it any easier.  I am prayerful that she will thrive in her new environment, and that God will continue to show off as he grows her into the young lady He has known since long before she was born.

 

“I keep my eyes always on the Lord. With Him at my right hand, I will not be shaken.” (Psalm 16:8)

Until next time…

Laura

Progress Report

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They love their daddy!

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It’s been awhile!  We had to do the whole get through the end of school/get adjusted to a new summer routine thing, which makes life a lot busier! As much as I miss a more structured schedule, I LOVE having the boys home with me for the summer to just enjoy swimming, reading what we want, and later bedtimes!  (Why, though, do my children insist on waking up at the exact same time as they would for school all summer long?  It also never fails that as soon as it is time for school to resume, they will suddenly sleep past 7 a. m.)

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Cason, Carter, Lindsay, and Charlie
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Waiting at karate

 

We have certainly had plenty of highs and lows lately, so I thought I’d give a bit of a “Progress Report” on several things. My biggest problem recently has been my wallet getting stolen. I know it happens to a lot of people, but oh, how frustrating it is!  I have had a bad habit of not carrying any type of purse since shortly after having Lindsay.  I would just put my wallet into her stroller or diaper bag when I needed it, and sometimes I would just carry it in my hands while carrying her. (Genius, I know.) A few weeks ago, the boys had a dentist appointment right down the road to have sealants put on their teeth.  I was told it would just take a few minutes, so  I thought I would take Lindsay with us, too. She is usually pretty easy to manage, and it would be a short trip.  For whatever reason she was not happy, so I spent all of our time there walking around the waiting room and looking out windows.  I remember setting down my wallet in one of the chairs because it was too difficult to hold both her and the wallet.  I honestly never thought about it again until I tried to go to the grocery store later that afternoon, and I realized I must have left it there.  I wasn’t worried at all because I thought, “It’s a pediatric dentist office; someone will have turned it in.” WRONG!!  “Someone” will go try and use both of your debit cards to make over a thousand dollars worth of purchases!  Anyway, it’s been a lot of fun trying to recoup everything, filing a police report, talking numerous times to Amazon, both banks, figuring out what to do about Lindsay’s Social Security card so that no one tries to take over a two year-old’s identity, etc. Throw in a day of broken air conditioning and today’s adventure of one of the boys overflowing the commode while I was on the treadmill without bothering to mention it to me until I discovered a hallway and garage full of water, and I’m about DONE with the crazy. Seriously!

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We have been juggling Lindsay’s therapy days with the boys getting to hang out with their grandparents some and come along with me some.  I think it’s great for them to see what Lindsay does each week, and it allows them to know the world does not actually revolve around them! If we are “friends” on Facebook, you might have seen some really exciting progress that my sweet girl is making!  She has been working hard on standing and has even stood while holding the boys’ hands quite a few times as well as on her own for a few seconds at a time if she knows something is behind her!! Praise God!! She has absolutely loved going to the pool, where she can just sit and splash as long as you will let her.

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Swinging with Mrs. Hilary
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Oh, just STANDING!!!

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Loving on Mrs. Carol

Speaking of progress, we are in the middle of transitioning into preschool in the fall for her.  For those of you who may not know how this all works, we have been involved with Tennessee Early Intervention  System for almost two years.  After going through all of the initial hurdles to get in the program, they will evaluate and determine what services your child needs in order to help her succeed. They will then pay whatever your insurance does not as far as therapies, things such as braces for your child’s feet, and for a developmental teacher to come to your home once a week if needed.  The day before your child turns three, she exits this program and must either continue with private therapies out of pocket, or begin attending a private or public preschool in order to receive what she needs.  Since we are not millionaires, it looks like Lindsay will be attending a Metro preschool beginning the day after her third birthday, which is August 23.

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Showing her stuff at “Arena Day”

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In order for all of that to happen, at least three meetings take place to determine where she will go and what services she needs.  The first meeting is mostly informational, where the Special Education Department explains the process and lets you know what all information they need in order to continue.  The second meeting, which was yesterday, is what they call “Arena Day,” since she basically sits in the middle of a circle of people and “performs.”  Of course I was so nervous about this day in particular, because I knew she would have a lot of strangers around her assessing her in every area. Even though I can see so much progress in her as well as those who are in contact with her day-to-day, these people have never met her and don’t know just how far she has come.  That’s scary!  I did not actually watch much of her assessment as I was answering question after question about what she is “not able” to do, what she “does sometimes when needed,” and what she “always does when needed.” I will admit, some of the questions were absurd even for a “typically” developing almost three year old!  Some had me thinking, “Umm…my eight year olds don’t even do that!” Thanks to many of your prayers, we survived!  Lindsay was in a great mood except for when they tried to get her to stand!

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The boys “helping out” at therapy!

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The third meeting will be Lindsay’s IEP meeting on August 12.  (Go ahead and be praying for that if you don’t mind!)  Just for those who are not in education, IEP stands for Individualized Education Plan.  We will all meet again on this day and discuss the results of her assessment and then make a plan for the goals we want her to meet this year in preschool. A lot of times the parents and the school system might not see eye to eye on exactly what is best for the child, so that is what I am most concerned about in relation to this meeting.  Metro’s preschool program is five days a week, all day long.  I am not excited about that at all, as she is my last child! Of course I also worry about the fact that she cannot tell me what her day was like, or if she’s happy.  When I’m with her, I KNOW! I know her life will be full of school, and I am not in a rush to send her every day.  I imagine that will be one of the areas I may have to push back on and see if she could start out going three or four days at first.

I will confess that when I taught, I dreaded IEP meetings for a different reason.  I would always get stressed about missing my “precious” planning time, as there was always so much to do in that hour!(Have I mentioned I am Type A?!)  Also a lot of times in the schools where I taught, no parent would show up for the child in order to help make decisions.  Now that I am on the “other side” of that table, I see things through a bit of a different lens.  We are talking about MY child, and that makes a world of difference.

I have visited one preschool that I would love for Lindsay to be able to attend. Back in May when I went to observe, within five minutes I just knew I loved that teacher and that she would love my girl. She spoke some reassuring words to me, and I just cried right there in front of the classroom full of kiddos and her assistants.  Sometimes, you just know.

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She CAN have two year old fits occasionally! And her mom CAN take pictures of them!

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So, we are trying to enjoy summer while preparing for all that is to come. As has been that case all along this journey with Lindsay, I learn new things every day.  I’ve mentioned before that a lot of the things that used to be big deals just really aren’t in the big picture of life.  I’m learning over and over again that when I put my hope in people, I will get disappointed time after time. I’ve learned that no two people experience things the exact same way.  Even if you are in similar circumstances, each person experiences things differently.  I’ve learned not to say, “I know exactly how you feel.” I don’t. The best thing we can do is just be there for others and really listen.  Offer encouragement, but let people feel how they feel.  There is only ONE who will never disappoint, who will always respond, who will always make me feel loved.  I hope you know Him, too.

 

*I spent a lot of these past few weeks worrying over all that Lindsay can’t do.  Then, I decided to make a list of what she can do!  Thank you again for following along on this journey, for encouraging us, and most importantly, praying with us for this miracle girl!

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Lindsay can…

-make me laugh and cry-sometimes at the same time

-brighten up any room she is in

-smile more than anyone I know

-talk…You might not understand her; but I can, and HE can

-sit and play for hours

-stand with assistance

-get across the room by scooting, rolling, or both

-play with her brothers

-laugh when things are funny to her

-put both feet in her mouth!

-bend her body completely in half (She might be a yoga instructor one day!)

-survive on crazy sleep schedules

-make anyone she meets fall in love with her

*That doesn’t begin to cover what our girl can do, but she is just getting started!

Until next time…

 “Trust in the Lord with all your heart and lean not on your own understanding.” Proverbs 3:5

“Be strong and courageous. Do not be afraid, for the Lord your God will be with you wherever you go.” Joshua 1:9

On being a mother…

I remember when I first got brave enough to venture outside of my house by myself after my boys were born.  Everywhere we went well-meaning people would say things like, “Oh, you’ve really got your hands full,” or “I don’t know how you do it!” To me the answer was simple; I didn’t know any differently. In fact, I think I would look at those with one child and almost wonder where the other one was! I think in whatever the situation we mothers are placed, we just adapt and do the best we know how. It is the same now as I wade through this journey with Lindsay.  I don’t know what I am doing; by God’s grace and with His guidance, I just do it. That is what mothers do. We go to any lengths necessary  to make sure our children are loved, happy, and secure.  It might look different for each  mother and child, but we are all in this together.

I’ve been thinking a lot recently about the awesome responsibility we have as mothers, and I decided I wanted to hear from a variety of mothers about their philosophies, thoughts, and dreams for their children.  I asked some of my favorite moms to weigh in on a few questions in hopes that we all might learn something from one another.  I have asked mothers of children with special needs, teachers, mothers who have lost children, therapists, and, of course, my own mother, grandmother, and mother-in-law.

The four questions I posed were:

1. What is the best part about being a mother?

2. What surprised you the most?

3. What advice would you share?

4. What do you wish for your children?

I hope you enjoy reading their responses as much as I have.

 

My favorite thing about being a mother is knowing that I can model unconditional love!  I hope that my kids always know that God loves me unconditionally, and my love will always be that way, too! My kids know that I am their biggest fan!

My plan is NOT always the best plan. Surprise, right? God’s plans are always better.

Be your child’s advocate. They will have enough of the world telling them what they can’t do or won’t be, or is impossible to achieve. Advocate for your child; they will be who God makes them to be!

I wish for them to love God with their whole heart, entire soul, complete mind, and with all their strength. What else matters but that?  –Julie Tuley

 

The best part about being a mother is the laughter. Watching them laugh reminds me that I should laugh more often. I love the throw your head back and laugh uncontrollably. I love falling to the ground and rolling around because some things are just that funny! I love the laughter.

The most surprising thing to me about motherhood is how hard it is! Sometimes I feel like my mother should have warned me. But then again, there is nothing that can prepare you for motherhood besides getting in the rink and fighting the good fight.

My advice would be to enjoy the journey. When it’s easy, enjoy it! When it’s hard, enjoy it.

My wish for my children is that they are defenders of goodness. I hope that they are understanding, kind, loving, patient, selfless, quick to forgive and slow to judge. – Cylynn Sheffield

 

 

What I love most about being a mother was loving, caring, teaching them. It was fun watching them grow and taking pride in their accomplishments. I was joyful to see them become followers of Christ.

I was surprised by many things. They have rewarding careers and marriages. They are good parents and grandparents, making me a happy great grandmother.

I would tell young mothers to take more time to treasure each precious moment. They grow up so quickly.

My wish for all of my children is to continue to live the Godly lives they are living now. Ruth Hale

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My sweet Granny Ruth, and Lindsay Ruth!

 

 

The best part of being a mother is knowing that I am part of this circle of life. My heart is so “swelled up!” Motherhood is such a beautiful gift, and I thank God for that.

The things that have surprised me the most are that I always had more room in my heart to love and care for another little soul, and it was no longer all about me!

The best advice I would give is to wear your title proudly. Treat each child as you would want to be treated. Laugh a lot, and slow down and enjoy every day. Always look for the good in every situation. Make sure God is in your life every day.

I wish for my children patience, good health, and most of all, love.-Lela Peebles

 

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Gran and her favorite granddaughter!

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The best part of being a mother is the blessing that comes from loving these little (and eventually, big) people so much.  Yes, there’s pain, but there is so much joy in watching them grow.  You can’t know how much you are capable of loving until you become a parent.  There is also a little-known best part.  You can’t know how dependent you are on the Lord until you become a parent.  Realizing that I can’t make it without Him is a lesson He has taught me. 

What has surprised me most?  How hard it is!  I had this picture of the kind of mother I would be:  always loving, never yelling, always wise.  I knew the techniques I was going to use, and how I was going to teach my children.  It didn’t go the way I imagined!  Motherhood is hard.  A mother is tired, feels guilty about what she’s not doing, and her judgment gets cloudy when her child doesn’t respond just the way the parenting books say they will.  Being a mom humbled me.  

 I’m much better at offering advice about what NOT to do as a parent!  Here are some things I’m glad I did.  We didn’t make faith just an “at church” thing.  We read Bible stories at home and talked about what God did for us.  I tried to follow my children’s natural talents and interests and support those areas, not forcing what I thought they should do.  I tried very hard not to succumb to the pressure around me.  Contrary to popular belief, TN state law does NOT say your child has to play soccer at age 3! Make your kids do chores! Then be ready to live with it if the chores are not done perfectly, or their room are a mess. Be willing to say you’re sorry when you mess up. Know going in: you will mess up.  It’s tough, but try not to judge other parents.  You don’t know what they’re dealing with.  As soon as you say, “My child would never…” beware.  Your child probably just did.  

 I want my children to love Jesus.  I want to see them in heaven.  There is not one other thing that matters to me.  Would I like to see them thrive?  Of course.  Do I want to see them happily married with wonderful children of their own?  Absolutely.  I pray they will have good friends and a marriage that honors God one day.  If they’re happy, that’s icing on the cake.  Bottom line: a relationship with the Lord is all that matters.  Now if I could just remember that day to day! -Michelle Lasley

 

 

My favorite part of being a mom is being able to nurture, teach, and watching what each of my children become.  Most important, loving them forever…

What surprised me the most was that God gives you a tiny baby to love, nurture, teach values to, and raise. At any given moment your child will surprise you with something you have been teaching them all of their life–like manners! Using the terms, “Yes, sir,” or “Very nice to meet you,” when you least expect it.  You hear, “Oh, what a nice young man you have raised,” and, “It is nice to hear children use manners,” and you think to yourself of the little boy who just pulled his sister’s hair. You say to yourself, “Manners, nice young man…” You want to believe this, and when you hear it from a total stranger, you smile and say, “He was listening!”

Love, love, love your child no matter what ability he or she may or may not have. LOVE your child. Every child has a special gift, and God gave you that special gift to teach and learn from. Sometimes, as a parent, you may have to take a step back, be quiet, and just observe what that gift may be teaching you.

I wish the same thing for all children…to be loved, to feel special, and to know that they are important. I wish for happiness, health, to be safe, and to make a contribution to the world in which we live. Know what is right and wrong, and always make the right choice. Help others, and become the best person they can be. -Liz Zook

 

 

My favorite part about being a mother is seeing myself and my husband so prominently in our children.  The resemblance in both appearance and actions are uncanny!

 What surprised me most about being a mother is the instant bond I felt with each of my children the moment they were born; and even before they were born.

 I think having teenagers has taught me that you have to ask questions…  LOTS of questions.  Even if you’re not entirely sure you want to know the answer, ask…  That is a piece of advice I’d share.

 What I wish for my children is security.  Security in their relationships, job endeavors, and faith.  And also happiness.  Happiness with who they are and not having regrets about things they wish they’d done but didn’t.  Mary Kay Wigginton

 

 

I think the best part of being a mom is the gift it gives us.  It feels like Christmas morning every morning (or most) or when you see them in the bed asleep!  The love you have for your children is like no other love!
  What has surprised me the most is how difficult of a job it is!  It is a lot easier to go to work than to be a mom at home for sure!
  Having patience is the best advice I can share with others! 
I wish for my children to have a love for Jesus and to be wonderful husbands/wives and parents to their children.  -Elizabeth Livingston
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Mrs. Elizabeth loving on Lindsay at speech!
 
The best part of being a mother is to see my kids grow into responsible young adults and to watch them develop their talents and discover their gifts. The bonus is that we continue to enjoy spending time together. (With a 25, 21 and 16 year old).
 
 It has surprised me that my husband and I enjoy each new phase of their development more than the last. It gets better each year!
Advice I would share would be:  first, to never say never !  🙂  Humor is a wonderful parenting tool.  And to invest time when they are young, to develop their character and cultivate their heart rather than focusing on their happiness. I have told my children that 1) life is good, 2) Life is not fair, and, that 3) Life is worth it.
I wish for my children to know, love and serve Jesus, to be others oriented, to find spouses that they can truly love, be committed to and to have fun with, riding the highs and lows of life together and for them to have a passion and to pursue that passion. Hilary Boucher
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Mrs. Hilary, one of Lindsay’s many “moms!”
The one thing about becoming a mother that stands out to me is that now I can better understand God’s love for me.  Until I had a child, I could not comprehend the unconditional love that God has for His children; especially me. Once I became a mother I knew there was nothing that could stop me from loving my children, as there is nothing that can separate me from God’s love. Many times my children did things that did not please me, and yet I forgave willingly and unconditionally because they were mine. God does that for us also. Many times I fall short, and yet God continues to forgive me.
It surprised me what I would do to fight for my children. When T.J. came along and was so sick, it surprised me what I would do to fight for him and get him the help he needed. There is always a fight in a mother to do what you believe to be best for your children. I think back at how hard I fought to get T.J. in the hospital to find out what was wrong with him. I never dreamed we would be dealing with life-threatening disease and also a lifelong mental disability. And I have continued the fight throughout my life for him as well as for Matthew, and also my grandson, Andrew, now that my daughter, Carol, is no longer here. It surprises me that the pain of reality never goes away. I am so very thankful to God, even for T.J. ‘s disabilities, and yet it still hurts me. However, I have learned so much from T.J. about God. He wants us to be childlike and innocent, just as T.J. is.
The advice I would give young mothers is to stay close to God. Model for your children, starting at a very young age, how to pray about everything. Share with them how much God has done for you. Deuteronomy 6 is the passage by which I would live. Make Jesus the focus of everyday life. By doing this, I think it is easier not to make your children an idol. Also, it is very hard to give up control as your children get older, but God expects you not to idolize them. If you make God your focus always, then your children will not be your god. Remember that ultimately your children belong to God, and He has just blessed you with the responsibility to raise them in the nurture and admonition of the Lord. So, love God more than you love your spouse, your children, your possessions, your life.
I wish for my children to love God more than life itself. My prayer every day is that God will teach me how to love Him with all my heart, my soul, my mind, and my strength. I ask that He helps me model this for my children, grandchildren, and everyone that I am in contact with, so they can follow my example. I pray for me, as well as my children, to “Seek first His kingdom and His righteousness and all these things will be given to you as well.” (Matthew 6:33)  After God chose to take my daughter, Carol, home first, I now realize more than ever the importance of just putting God first in everything. The world is not our home, and we can’t live like it is.  Heaven is what we need to be longing for, not and easier or better way here on this earth.  -Susan Hale

Psalm 127:3 tells us that children are a gift from the Lord; they are a reward from him.  So what I love most about being a mother is being gifted from the Lord with children, that He chose me to have a son and daughter, that He deemed me worthy of this calling, that it was a part of His plan from the beginning, and that He charged me with the privilege of raising them in the nurture and admonition of the Lord.  Unworthy me, whose name is written on the palm of His hand, was given the two most precious gifts imaginable,(until the grandchildren were born) making our family complete.   When Laura was born, I cried tears of joy because God had granted me with all that I had ever wanted:   a good husband, a beautiful son, and an equally beautiful daughter.

Most surprising is the depth of love possible, the unconditional love, the love that would allow me to lay my life down for my children and the realization of how much God loves me, for without my children, I am not sure that I could have ever known the deep, abiding love that God has for me.  Secondary to this love is the incredible uniqueness of each child from those things which they have “caught” from my husband and me to those things which they have created themselves. 

Deuteronomy 6:5-7  “And you must love the Lord your God with all your heart, all your soul, and all your strength….Repeat them again and again to your children. Talk about them when you are at home and when you are on the road, when you are going to bed and when you are getting up.”

Talk to your children day in and day out about God, His Son, and the Spirit as companions so that they will grow up with a personal relationship of Him and a constant reminder and knowledge of His presence and love. Use every opportunity to do so, in nature, with relationship building, with character shaping, with work and play.  Keep laughing, have fun, be forgiving, realize that they will make mistakes (sometimes big ones), hold them responsible but council them lovingly through it,  don’t be judgmental, love God, love one another, treat each other as you want them to treat you, and serve the world.  Above all, model Jesus in front of your children in every walk of life.

I want my children to stay faithful, to love their spouses, to grow their children in the nurture and admonition of the Lord, to be compassionate, generous, loving, and to love the Lord, love each other and serve the world. -Cheryl Lindsay

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Two of my favorite ladies! Otherwise known as “Buela” and the “Princess!”

Aren’t those great?!

 

I suppose if I am going to ask these questions of others, I should answer them myself!

I love so many things about being a mother! I love the relationships I have with each child. I love that I can mess up terribly one day, and they love me anyway! I love watching the people they are becoming and watching as their interests grow and change. I LOVE how my boys adore their sister.  I don’t think they have a grasp yet of the scope of her “disabilities,” but they don’t care. They get down on the floor with her every day and play with her, laugh with her, teach her, and learn from her.

Among many of the surprises of motherhood is my discovering how vastly different each child can be! From everything to how I have to discipline, to what they like and dislike, they are so very different! I am surprised at how excited I get when they accomplish a goal, whether it be passing the swim test, reading a certain book, riding a bike, or even Lindsay holding her fork and taking a bite correctly!

Probably most surprising to me is just how funny they can be!  I know God uses humor to help me survive the worst days!  Just the other night Carter said, “The next time we go to the store, can we get some more space books? I want as much knowledge about space in my brain as I can get. Some stuff that used to be in there came out so I could fit more space stuff.” One of his favorite things to say is, “I am awesome. Tell your friends!”

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As hilarious as Carter can be, Cason amazes me with his sensitivity and intuitiveness.  I have told this story before to some people close to me, but I will never forget it.  One day several years ago when I was driving the boys home,  Cason spoke up and said, “Mom, where will we stay when you are in the hospital?” Startled, I asked, “Why would I be in the hospital?” He said, “You know, when you have a baby girl.” Now, I had been longing for another baby and had just started undergoing treatments to make that a possibility, but neither of the boys knew that!  Later I would learn I was indeed, pregnant. Months later, we learned it was a baby girl!  When we found out, Cason just nonchalantly said, “I told you.” He says things from time to time about when Lindsay learns to do this or that, and I believe him.

If I were to give any advice, it would be to trust your instincts. God gave them to you for a reason. Also, find out what works for your family, and don’t feel guilty if it doesn’t look like someone else’s. Learn to forgive yourself!

What I used to wish for my children and what I wish now is a little different. I want my children to make a difference for His Kingdom. I want them in Heaven, and everything else is secondary. I pray that He uses their lives and that they accept whatever call he places on their hearts.

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Lindsay’s first sleepover! (Her parents had an appointment with Kenny Chesney!)

 

   Now,  I could not possibly write a post about mothers without telling you a little about my own.  Many of you know her, but you don’t really know her. She is the hardest working person I know.  When we were growing up, there were several times when my dad was out of a job.  My mom taught all day long and then went to work at night at Castner Knott. Can those of  you who are teachers even imagine? She has always survived on less than normal sleep just to keep up with all that she does.  She has led countless mission trips in Central America, taught thousands of students English, Spanish, and Latin. She helped me for five months overnight when my boys were born, sometimes getting only an hour of sleep before going in to teach the next day! She has just always figured out a way to do whatever needs to be done. She is fiercely loyal to her friends, family, and students.  Most of all, she has modeled the love of Christ to our family in her self-sacrificial love for us.

Finally, I cannot neglect to mention those of you who are waiting and wanting more than anything to become a mother.  I have been in your shoes.  I know the pain of crying in the shower alone month after month in disappointment, when everyone you know seems to be having a baby.  All I can say to you is never give up, trust in God, and know that you are not alone. There is ALWAYS hope!

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 *A special “Thank you” to the wonderful ladies that help me “mother” my kiddos every day; Lindsay’s therapists and Carter and Cason’s teachers!  Teachers spend more waking hours with our kids than we do, so it is nice to be able to trust that they are in great hands!

Until next time…

My favorite girl
My favorite girl
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This girl works so hard and is so happy!

Laura

Children are the best teachers!

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(If you’ve ever been to the Destin area, you know this is going over the bridge that means, “Almost there!”)

  We just returned from a little vacation for a few days down on the Gulf Coast.  I was looking forward to this little escape for many reasons, one of which was I knew I would have some time to actually think and possibly even write! Forgive me if this is more of a ‘vacation journal,’ but I promise I do have a ‘deep thought’ or two.  😉

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Just a normal car ride with these two crazies! And being the awesome parents that we are, we make them eat on the go! (I mean, who has time for stops when you’re going to the beach?!)

We are usually completely last minute planners when we are taking a trip to Florida since we never know how busy Chip’s work will be.  This year our “last minute-ness” worked out well because since the boys were out of school for an eternity due to snow/ice, they ended up having to do some make-up days when we had originally thought about leaving. So I booked our condo on a Monday, and we left on Saturday!  In the meantime, the boys decided to go ahead and turn 8 years old on me and request that I make cake pops that look like ice cream cones to take all of their friends at school. (Just a suggestion: Don’t wait until the night before to make 40+ cake pops when you really should be packing/finding book character costumes for the next day/feeding the people that live at your house, etc.) Anyway, the cake pops got done, Lindsay’s teacher and her boss came Friday morning, I went and took lunch and the treats to school to celebrate the boys’ birthday, and I got everyone plus the van packed by Friday night. I had visions of maybe taking a long nap on the drive down, but, of course, the headphones to the TV in the van weren’t working, I had to feed everyone a few times, and we got started on reading Harry Potter.  The directions we were using take you through numerous little towns in Alabama and Florida, but we did not anticipate the awesome “detour” we got to experience!  We kept seeing signs that said “Road Closed Ahead,” but we thought that surely there would be other signs telling us what detour to take.  WRONG.  So we just followed a few cars in front of us hoping they knew what they were doing!  About this time, the boys started to sense that we were “lost,” and they proceeded to ask about a hundred times, “Dad, are you sure you know where you’re going? But how do you know where you’re going?”  “Are we lost?”  I finally sort of ‘snapped’ at them and said, “Guys, that’s really not helping anything is it?” Sweet Cason, in his high-pitched voice said, “But, I’m just nervous.” Ouch!  I understood.  I remember while growing up, I always looked to my dad to ease my concerns or fears about something.  It could be something as silly as asking him if he thought UT was going  to come back and win a game.  If he told me they would, I believed him.  No questions. If I was concerned about something bigger, he always had a calm way of reassuring me that everything would be okay.  I thought about that as the boys were looking to their dad for reassurance, and then I realized how much we probably all question our Heavenly Father over things we fear or simply don’t understand.  I know personally I’ve done that a lot recently when I’m thinking ahead to decisions that need to be made on Lindsay’s behalf or whether or not I’m doing what He wants for me. “Do you know where we’re going? Are you sure? How do you know we’re not lost?”  What I am coming to realize, though, is that just like my own earthly father, my Heavenly Father knows just how to comfort me. No questions.

After a little stretch of pouring rain, we finally made our way to Florida.  Shortly after we got there, Carter was talking to Cason, and said, “I prayed for two things and God answered them both.  I prayed that it would stop raining and that we would get here safely.  And we did.” Cason said, “I prayed that too, because I was nervous.”  Trying not to cry, I just said something like, “That’s awesome!”  When I pray with the boys at night, I always remind them that they can talk to Him any time day or night.  (Then I secretly wonder if they ever do!)  I also try to remind them a lot to praise Him and not always just ask for things as if He is a genie in a bottle granting their every wish. I think they may be getting it!

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I so enjoyed getting to just wake up every morning rather than setting an alarm to start the day.  Carter knows I love running/walking outside when we are at the beach, so he asked if he could go with me.  Normally I like to go by myself so I can go my own pace, but I wasn’t about to miss an opportunity to just do something one-on-one with him.  Instead of just running at a steady pace, we got to have several “races” along the way. He made me stop a few places as we ran and forced me to slow down and notice things I would have otherwise missed.  (Including running through sprinklers, purchasing “boogie boards” at a local shop, and, of course, having his picture made by a sign with his name on it!) I would not trade those mornings with him for anything. 096037 We spent our days on the beach and at the pool, soaking up every minute of the sun that we could!  The boys stayed in the water and built all kinds of things in the sand until their eyes and skin were a little too pink!  Lindsay just enjoyed sitting on her blanket playing with toys and watching her brothers.  I remember a time or two thinking that, “It just doesn’t get much better than this!”  Would I rather Lindsay be running up to the ocean or jumping in the pool with her brothers? Absolutely.  But, I am learning to appreciate the simple things, just as she does.  She can be content in almost any situation.  Couldn’t we all use some of that?

Philippians 4:11 (NIV)”…for I have learned to be content in whatever the circumstances.”

153149155050022047098069 Cason’s teacher has been reading his class excerpts from the book, Kid President’s Guide to Being Awesome, so he asked for it several times since he was enjoying it so much.  He got it on Valentine’s Day and has been reading it to us ever since.  He loves to “remind” us of some of Kid President’s rules when he thinks it is necessary! (Or when it might benefit him!) Rule #1: “Put Down Your Phone.” (He especially enjoys using this one when I make the boys plug up their iPads for the night.) Rule #26: “Two Words: Share. Just kidding. That’s just one word. But seriously. Share.” (Cason looooves to apply this rule when he would like for Carter to share something of his that he has no interest in sharing.) One night at dinner on our trip, Cason recited this rule numerous times when he wanted whatever color of crayon Carter had at the moment. 😉 My personal favorite rule by Kid President might be Rule #30: “Listen more than you talk.” When Cason shared this particular rule with us one evening, Carter said, “How are you supposed to do that?”  I imagine he isn’t the only one who feels that way sometimes! What I do know about this one rule in particular is that some of the wisest people I know practice it well.

James 1:19 (NIV) “My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak, and slow to become angry.”

160174103051 Oh, how we all needed this trip! Yes, it is a lot of work to basically “take the show on the road” when you travel with kids, but it was so worth it!  It was so nice not being on a set schedule with school, homework, therapies, karate, etc.  We were able to just enjoy being together and watching the kids make memories.  I even took Lindsay to the edge of the ocean to let her tiny little feet feel the sand and waves. Who knows? Maybe next year she will stand on her own in those waves just like her big brothers!  Regardless, I have learned far more from these children God has given me than I could ever teach them.

Until next time,

Laura

Matthew 21:16 (NIV) “Do you hear what these children are saying?” they asked him.  “Yes,” replied Jesus, “have you never read, ‘”From the lips of children and infants you, Lord, have called forth your praise’?”  

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Notice the words the boys used in Scrabble. I’m just so proud. 😉
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Possibly one of my favorite pictures ever.

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Roller Coaster Ride

 

Rocking with Mrs. Hilary!
Rocking with Mrs. Hilary!

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“I tell all my parents it will be like a roller coaster ride.  You will have ups and downs.”  This is what the sweet genetic counselor told us once she had delivered Lindsay’s diagnosis back in October.  I’m pretty sure I wanted to knock her in the teeth (or something like that!) My smart aleck self thought, “Oh, well, I am so glad you tell all your parents that!  But we are talking about MY child. When you are done, you get to go back to your little office and go on with life.  Ours has now been turned upside down. It feels as if we have already been on one long roller coaster ride ever since Lindsay was born.  With every test we would nervously await the results, and then be almost giddy when they would turn out positive.  I don’t know how much more of this ride I can take!” Of course I just cried, muttered something like, “I don’t want to raise a fifty-something year old,” and halfway listened to whatever else she had to say.

Discussing something very important!
Discussing something very important!

It is though; life is very much like a ride that takes us up, down, and sideways sometimes.  I have thought about that notion a lot lately. I just finished a book, Bittersweet,  by Shauna Niequist, that was recommended by a lady who is in the midst of her own roller coaster ride. (Shout-out to Katy! ) The premise of her book is much like the idea of this ‘up-and-down’ of life.  It is the idea that life will have times of sweetness and times that may be bitter.  Niequist says of her title:

“Bittersweet is the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul.”

I think about that a lot when I feel really stuck down in the ‘pit.’ I then try to imagine that surely something good must be on the horizon.  Some days it is as simple as Lindsay clapping for herself when she sees her reflection in her mirror or just the way she looks at me.  Other days it might be laughing until I cry at Carter’s sleepwalking stunts or when Cason tells me he “grew a beard” while waiting for one of us to do something!

We have had a rough past few weeks after everyone in the house got the stomach “bug,” except for me. (After all, who else would take care of everyone?) 😉 As soon as one seemed to be well, the whole process would start over with another one. (At least two of them were courteous enough to have it at the same time!) Then after everyone finally seemed to be better, Lindsay had almost a solid week where NOTHING made her happy.  If you know her at all, you know this is completely out of character for her.  I got so frustrated several times because I could not figure out what to do for her, and, of course, she could not tell me.  I was just longing for everything to be back to ‘normal’ again.

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Mrs. Elizabeth and Lindsay playing the piano!
Lindsay's developmental teacher, Mrs. Liz and PT, Mrs. Carol
Lindsay’s developmental teacher, Mrs. Liz and PT, Mrs. Carol

 

Once we figured out (or think we figured out) the source of her unhappiness, she has been back to her joyful self!  She smiles as soon as she wakes up, whenever you pick her up, riding in the car, playing with her toys, etc. And oh, after a few hard weeks, how much sweeter it is!

I love how in her book, Niequist invites us to say thank you and celebrate when life is sweet and say thank you and grow when life is bitter. I firmly believe if we would practice this, the sweet times would become so much sweeter!

When we go through things in life that aren’t as easy as they ‘should’ be, don’t we always appreciate them so much more when they finally do happen?  For me I know that I might possibly have been the most excited person on Earth when I found out I was going to have twins and then again when I learned we would be having a girl! As I mentioned previously, it took a long time for us to experience that joy at all, so you had better believe we were going to celebrate every single second! When you have sat back and celebrated with friends who were having babies so easily while secretly dying inside to just experience a little of that joy, it is beyond sweet to finally know it for yourself! You can fill in the blanks of what that ‘thing’ is for you that you have wanted so desperately.  Who knows? You might still be waiting.

“You don’t know what the story is about when you’re in the middle of it.  You think you do, but you don’t. You make up all kinds of possible story lines: this is about growing up. Or this is about living without fear. You can guess all you want, but you don’t know.  All you can do is keep walking.”

I love that quote from Bittersweet. Isn’t it true? Sometimes all you can do is keep riding that roller coaster, even when it is uncertain or scary.  I am forced to face uncertainty and fear frequently whenever I have to do a six month “review” on Lindsay’s progress or think ahead to the fall when she will have to go to preschool in order to continue receiving her therapies. I hate not knowing what to expect or having to answer “no” to so many of her milestone questions. It’s a feeling of, “Let’s highlight all of the things she can’t do.”  But then, as sure as the roller coaster goes down, it comes back up again as she learns to do something new like willingly bearing weight on her feet when before she would just collapse!

Last week Mom and I took Lindsay to have a hearing test and a kidney ultrasound done, as there can often be issues with these areas as it relates to Pitt-Hopkins.  We think her hearing is fine, although it can be difficult to discern when she is not yet capable of following directions. She will be checked again in a few months to see if she might respond to some more sounds.  After the hearing test was an hour-long ultrasound! Of course, once again it brought a roller coaster of emotions.  We had expected it to take a few minutes.  As the technician kept looking while we held Lindsay’s hands and feet still, I just about lost it. Then one look at that sweet, precious little girl’s face, and I realized she was completely HAPPY! I am still amazed at how much she can teach me!

So what I am learning is this; we are ALL on a roller coaster, as much as I hate to admit it. We are not on the same one. Each is unique. But I also know that we will not always be ‘stuck’ going the same direction.  Shauna Niequist puts it beautifully as she says, “I don’t know where you are these days, what’s broken down and what’s beautiful in your life this season. I don’t know if it’s a season of sweetness or one of sadness. But I’m learning that neither last forever…It won’t be sweet forever. But it won’t be bitter forever either.”

Whatever you are going through-whether it be the loss of a loved one, a cancer diagnosis, a miscarriage, a broken marriage, or a child with “disabilities,” know that you are not alone.  As much as life is a roller coaster, God is on the ride with you. He will never let you go.

God is our refuge and strength, an ever-present help in trouble.” (Psalm 46:1)

The lyrics to the song, “Never Once,” by Matt Redman have been sort of an “anthem” for me when driving to and from many doctor’s appointments.

Never once did we ever walk alone/ Never once did You leave us on our own/ You are faithful, God you are faithful.

Until next time…

Laura

 

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Sometimes, you've just got to take your clothes off!
Sometimes, you’ve just got to take your clothes off!
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If you’re happy and you know it…

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"Fearfully and wonderfully made!"
“Fearfully and wonderfully made!”