Well, it’s been so long since I’ve updated Lindsay’s blog, that I forgot my password to even get on the site!  Of course we’ve had no shortage of “busy-ness” in our lives, and despite all of the negatives associated with social media, it at least allows me to keep some sort of photo album!  In the last several months, we have “graduated” 4th graders from the school they’ve attended since kindergarten, spent countless hours getting the house we lived in for 16 years ready to sell, squeezed every last drop out of summer fun, attended physical therapy, occupational therapy, and speech with Miss Lindsay, gone to IEP meetings for the school Lindsay has been in for two years as well as at her new school, sold the old house, all three kiddos have started new schools, and we just celebrated Lindsay’s 5th birthday!  Needless to say, we have had a lot going on, and some pretty huge changes.

In whatever the season of life I find myself, I notice that I almost always go through a little period of “mourning” the season that has just ended.  For example, I get a little sad each year when school ends for the summer. I go through the same thing when it starts again in the fall.  I guess it’s the same for any major life change.  I get comfortable in whatever our little routine is at the time, and then I am sad to see it go.  It was especially difficult at the end of the last school year, because I knew all three kids would be changing schools.  We’ve spent the last five years at the boys’ school, and the last two years at Lindsay’s.  Not only was I hesitant about how they would do in a new environment, trying to make new friends, and just adjusting to all of the differences, I was apprehensive for how I would handle it all as well.  At Lindsay’s previous school, her teachers and therapists knew her well.  They knew what made her laugh, what made her upset, when she just didn’t want to do something versus when she didn’t feel well, etc.  When you have a nonverbal child, someone knowing and loving her is everything.

As many of you may know, IEP meetings for children with special needs are never the most fun experience. So having two within a matter of months was not exactly ideal. I felt pretty good when I left the first one at Lindsay’s previous school at the end of the year. I thought we would just have a short meeting with the new school system for the second IEP and possibly change a thing or two. What I did not take into account is how difficult it would be to basically “introduce” Lindsay to a whole new set of teachers and therapists.  I remember leaving the meeting early in the summer and bursting into tears once I got in the car. (I might have also cried a time or two in the meeting! 😬) It wasn’t that the team of people weren’t incredibly kind and knowledgeable, but I left thinking to myself, “Can Lindsay do ANYTHING?”  When you are asked numerous questions such as, “How does she get your attention if she needs help?”  “Which hand is more dominant when she is making a choice?” “Does she have any words?”  The list goes on and on, but, when most of your answers are, “I don’t know,” and, “She really doesn’t,” it makes for a very long and emotional day.  And somewhere in the midst of all of those emotions, it’s easy to feel like a failure.  I remember thinking, “Why don’t I know the answers to some of those questions?”  “Should I be doing more of this or that?”  I was also imagining the looks on the teacher’s and therapists’ faces after we left. I’m sure they were wondering if I knew anything at all.

If you’ve been following the blog for awhile, you might know that I have mentioned that as Lindsay gets older, it will be more obvious to others that she is not developing typically.  For the first several years, it may not have been so noticeable to those who didn’t really know her. There’s always that awkward silence now when someone asks me how old she is.  Do I follow up with, “But, she has special needs?”  Sometimes I might, and sometimes I just really don’t feel like it.  I mean…she’s five, right?  That’s all they asked.  If someone asks me how old the boys are, I don’t usually answer with their age and another “fun” fact about them.  Some of you may have seen that she also has a wheelchair for transport now, (which we like to call her carriage👍🏼) and I would be lying to say it doesn’t sting a little each time we get extra stares in our direction.  When I took the boys into their new school on the first day a few weeks ago, I was already feeling all kinds of emotions.  As I was walking back out to the car and pushing Lindsay in her chair, I heard a little girl ask her mother, “Why does she gots that?”  I sped up, because I honestly didn’t want to hear her mom’s answer.  On the day of Lindsay’s school Open House, I couldn’t help but notice all of the other children following the directions and making a little craft with their parents.  I kept looking around, hoping she wasn’t the only one in a chair or the only one with special needs.  I also noticed how a lot of adults either don’t make eye contact at all, or don’t really have anything to say to the mom pushing the wheelchair! (By the way, after I was telling some of my family about the things people say about Lindsay/the wheelchair, my father-in-law came up with a great response.  He said the next time someone asks why she has one I should answer with, “It came with her!”)  I just love that answer, and I might have to use it!!

Now, please don’t hear me as having a “pity party” for myself.  I just know that before we were met with the challenges we face on a daily basis, I’m sure I was the one who avoided uncomfortable situations.  I probably felt that things like this only happen to other people.  I imagine everyone who faces pain, loss, difficulty, etc., once felt that way, too.  When you suddenly become the “other people,” though, your perspective on a lot of things begins to change. Until you experience being “the other,” it’s difficult to understand.   One thing in particular that weighs on my mind lately is anytime I see a person holding a sign wanting help on the side of the road.  Instead of doing as I have often done, looking the other way and making my judgment-I start to think about Lindsay. What if that were her?  We are often so quick to say, “Well, they could just get a job.” Could they? Can she one day? I just don’t know.  I do know that she has every advantage, because she just happened to be born to parents who will go to the ends of the earth to get her what she needs.  Not everyone has that. Some are stuck in a cycle they are not equipped, either mentally or physically, to escape.  Having her has challenged the way I view everything, such as how quickly I can form an opinion on how someone else “could” or “should” do something. She’s made me want to be a little more patient, a little more forgiving, a lot more loving, and a little less harsh, when I am not in another person’s shoes.  I KNOW that regardless of whether I wanted to learn these things the way I’ve had to, I desperately needed to learn them.

I also know that God doesn’t love like I do. He doesn’t pick and choose.  He loves us all. Even the “others.” Especially the “others.” 🙂  He doesn’t love the “typically developing” child more than He loves Lindsay.  He doesn’t love the people of my country more than He loves those born in any other country. He doesn’t love the person with a large bank account more than the one living paycheck to paycheck.  He doesn’t love the parents of the child whose life was spared more than the parents who lost a child. He doesn’t even love the Christian more than He loves the one who doesn’t believe in Him.  He loves and pursues us ALL.

I don’t need to look any further than my own children to get a glimpse of how God loves. It’s unconditional. The boys think Lindsay’s wheelchair is the coolest thing ever and have already come up with all kinds of games they can play in it. They fight over who gets to push her around in it, and both wanted to push her to their classrooms the first day of school.  The three of them can make each other laugh, even on the worst days. In Carter’s “All About Me” presentation for school, he chose to talk about Lindsay and Pitt Hopkins Syndrome, on one of his slides.   Cason tells her all the time that she is the cutest girl in the whole world.  (And, he reminds me, “I’m not just saying that because she’s my sister!”)

Lindsay turned 5 on August 23, and we celebrated her on Saturday with “The Five Little Ducks” theme! (It’s her absolute favorite video to watch on her iPad every day.) I think she loved being the center of attention, and I am thankful for how much she is loved. She LOVES music, clapping for herself, being in the water and working on her tan 😂, her brothers, her iPad, and tearing up paper or anything else that might be important! (She’s been known to “taste test” some of her brothers’ homework!) As her mother, all I want for her as she grows is to be treated like any other child is treated.  She deserves that. She’s changed a lot of hearts and lives in her 5 years, without saying a word. How many of us can say that!? ☺️

John 15:12 This is my commandment, that you love one another as I have loved you. (ESV)

Matthew 7:12 So whatever you wish that others would do to you, do so to them. (ESV)

 

Until next time…

Laura

Over a year ago, I wrote a post entitled, “Keepin’ It Real.”  Welcome to part 2!  I know I have been absent from writing for a longer period of time than usual, but a lot of life has happened in between.  It’s hard to know where to even start!

First of all, my mother-in-law spent eighty plus days in the hospital.  It’s hard to even believe that is true at this point, but it made for some very long days, weeks, and months, for everyone in the family.  Around Christmas time, especially, it was hard to remember what “normal” for us even felt like anymore.  We just couldn’t believe that the year before, we were all experiencing Disney-and here we were wondering if that would even be possible again. Praise be to God that she is now home and continuing to improve a little each day!

In the midst of “Gran” being so sick, I think everyone in my family got sick more times than I can count. It just felt as if we couldn’t come up for air. I also spent much of the winter packing, getting rid of “stuff,” and packing some more for our family to move. (NEVER doing that again!!!) Then, as soon as we did move, we ALL got sick again! (And you moms know- even if you get sick, you still get to take care of everyone else!;-) )

Throughout all of this time, I had days where I just fell completely apart.  Cried about the smallest thing.  Worried about things I usually wouldn’t.  I would get so overwhelmed at everything going on, that I couldn’t seem to accomplish anything. I know that on more than one occasion, I literally talked aloud to God, asking if we could just have a little break.

Recently my mom gave me a book that someone recommended to her, after hearing some of my “story.”  I don’t get a whole lot of time to do much other than be a parent, but I knocked most of this book out in a few days’ time.  The title, No More Faking Fine, got my attention pretty quickly.  I’ll be honest, I thought that “faking it,” must be what my mom thinks I do; thus the reason for giving it to me! Esther Fleece does a wonderful job in the book of explaining how much we miss, both in relationship with God, and others, when we pretend things are always going well. (I only underlined almost everything in the book!)  I think we all may “fake fine” to a degree. I know I have certainly done so at times in order to simply survive the day.  I’m sure you can relate, when someone asks an innocent, “How are you?”  We usually have a quick response, such as, “I’m good, and how are you?”  (A lot of times I’m thinking, they probably really don’t want to hear about the fact that one of my kids is sick, I really could use a nap, and I have no idea how I’m going to get everything done that needs to be.)

In a previous post, I talked about how I grieved deeply for about a week when we first got Lindsay’s diagnosis a little over two years ago.  Sort of as if I were a robot, I decided that my grieving period was up at the end of that time.  I thought that I needed to get it all out, and then move on with my life.  While it’s true that I cannot stay in a constant state of sadness in order to be able to function with daily life, it was foolish of me to think my grieving was over after a week.  Far from it.  I’ve heard several parents of special needs’ kiddos speak of coping with a lifelong disability as similar to opening a door, looking  inside for a few minutes, and then closing it back before seeing too much. While in our heads, we know that there a lot of unknowns about the future, it is almost impossible to try to digest too much at one time. At the same time, as Lindsay gets a little older each day,  I get sad for different things.  Sometimes they are completely unexpected, like  the other day when she had been playing in her room for a little while.  When I went to check on her, I noticed she had a little gash above her eye.  It was already beginning to close, and I noticed a little blood that had dried in her hair.  She was as happy as could be while I cleaned her up, but I got so upset wondering what had happened.  I knew she was fine, but the fact that she couldn’t tell me what happened just overwhelmed me.  I wondered if she had cried when it happened, and no one heard her. I started worrying about how many things might happen that I will never know about.  I was not only sad, but angry, that my child does not have the ability to do something so simple.  It still hurts to see kids her age and much younger, be able to run, slide, and play with age appropriate toys.  It’s hard to have to park in a “handicap” spot and get stares from people wondering why you are carrying your four year old into church, or the grocery store.  So while I accepted over two years ago that this syndrome would change the way we go about daily life, the grief still comes in unexpected waves.

One of the things that reading Faking Fine did for me, is it gave me permission to feel the way I feel.  Much of the book focuses on “lament” as a language that God wants us to express to Him. We can often get caught in the trap of thinking that we should just be stronger, if we want to be a good “Christian.”  I love the way Ms. Fleece describes her own grieving process, as she relays how her counselor explained to her the very necessary steps of confronting every bit of hurt we have experienced, in the effort to heal.  “Lament, he said, is simply expressing honest emotions to God when life is not going as planned.  Whether we’re hurt, frustrated, confused, betrayed, overwhelmed, sad, or disappointed, lament is the language God has given us to talk to Him right in the middle of life’s messes.  It’s real talk with God when you’re hurting, when all you can do is cry out for His help.  It’s a prayer that says, God, I’m hurting-will You meet me here? And as such, it is a prayer to which God always responds.”

The book goes on to say that God doesn’t just want our “happy.” He wants us to be honest with Him.  He wants us to cry out to Him, ask questions of Him, and realize that He hears it all, without judgment.   Probably the most profound quote to me was when Fleece talks about the fact that God is present with us in our laments, and that knowledge has to be enough sometimes.  She says, “Sometimes we need to love God more than the happy ending we are hoping for.” What that says to me is that even though I may express my deepest desires and hurts to Him, He may not provide a “quick-fix.”  Instead, I must learn to find happiness within the hurt.   Building my relationship with Him is superior to getting all of the answers I want.

In my experience, there is so much happy in the midst of so much hurt.  I see it every day, when my boys voluntarily carry Lindsay to their room to play, offer to dry her hair, fix her iPad just the way she likes it, or sing along with the same silly songs she listens to every day.   Listening to the boys pray at night always gives me a perspective I wouldn’t otherwise have.  One night after life had been particularly crazy, and we were all getting over sickness, Carter ended his prayer with, “Thank you for our good life.  Thank you. Thank you.”  I remember thinking, “Boy, I’m glad he thinks this is the good life!”

Finally, this quote from Grey’s Anatomy a few weeks ago caught my attention enough that I had to rewind it several times: “You don’t get to call what is normal.  When you have a child, you might not get to have what you ask for. You get what you are given. And it might be wonderful. And it might be painful. And it might be both.”

Until next time…

Laura

 

 

 

Proverbs 16:24–Gracious words are like a honeycomb, sweetness to the soul and health to the body.

I’ll admit it..I’m a slacker!  😉 If you know me, you know that’s not entirely true- but with writing, I certainly have been lately.  It is almost impossible to find a few minutes here and there to capture my thoughts.  (If you’re a parent, you can relate!  Your kids just know if you might have found a second to yourself!)  After a while, though, I have so many thoughts swirling around in my head, that I just have to let some of them out!

I don’t know if I’m alone in this, but I tend to “compartmentalize” my thoughts.  It’s probably just a survival skill, but it’s how I operate.  For example, if it’s as simple as a “to-do” list for the day, I have to break it down into one thing at a time.  If I don’t, I just get overwhelmed and shut down completely.  If we are talking about something much more difficult, such as processing the magnitude of Lindsay’s syndrome and what she needs/will need in the future, I have to think day-to-day.  (I’ve tried the whole ‘worry about every little thing that might happen in the future’, and it never works out too well.) 🙂

I know that I have said it repeatedly, but I think my biggest frustration with Pitt Hopkins, is how much it affects speech. I think of how frustrating it is to always wonder what Lindsay would say to me in any given situation. Sure, I can tell if she’s happy, upset, or tired. Those are pretty easy to determine. I wonder little things, like does she ever get bored? What was her favorite part of the day? Does she want to play in her room, or would she rather go outside? Simple things, but they’re all a guessing game for me. I would love for her to just be able to tell me about her day. Of course, I ask her all of these things, but I usually just answer for her.

 With nonverbal children, or even with typically developing children, we often hear the phrase, “Use your words,” in order to try to get them to  verbally express their needs. This is usually in an attempt to steer them away from expressing their frustrations physically, or through fussing or crying.  It’s no surprise that in the season of life I find myself, then, that words are so important.  Words are powerful.  They can lift someone up, or be used as a weapon.  While we’ve all heard (and probably used) the old saying, “Sticks and stones can break my bones, but words will never hurt me,” it’s simply not true.  I can still clearly remember unkind things that were said to me as a child, as if they were yesterday.  Most of us probably can.  We might even still believe them. We can be given a hundred compliments and one criticism, and what is the one thing we remember?

 We work every single day to get Lindsay to imitate sounds, by singing songs, trying to get her to repeat things, and letting her watch little videos.  We’re just anxious for one word.  Any word.  I’ve often even joked about how funny it would be if she said certain  words as her first. I can see so much personality in her, and I can’t wait until we can help her let it all out, using either her words or the help of a communication device.

The other night as I was putting Lindsay in her bed, Carter came out of nowhere and asked, “Mom, if you had one wish-what would it be?”  I told him that it would probably be that Lindsay could walk.  (At the time, I was simply thinking it would be great if she could get in her bed by herself.)  He just looked at me and said, “I like her just the way she is.” It was almost as if I had offended him in some way.  I told him that I like her just how she is, too, but sometimes it would be nice if she could walk.  He said, “Maybe for a little bit, but then I’d want her to go back to the way she is.”  He’s only nine, but his words in those few seconds humbled me, and changed my whole day.

A few weeks ago, my boys participated in their first debate with their school’s debate team.  When they were handing out awards at the end of the day, one thing really stuck out to me.  The lady handing out the awards told the children that greater than winning any award, was the importance of learning how much their words matter. They are learning now that the words they use, and how they use them, mean more than winning any debate. Not long after, Carter told me about a boy asking him if he’d ever said a curse word. He told me that he responded, “No, and I don’t ever PLAN to!”  While I’m so thankful he’s still innocent, I hope he will always think about the words he chooses to use.

Lately, words have broken my heart.  In this never-ending political season, I’ve seen more hateful words than I care to see for the rest of my life.  I think the part that bothers me the most, is that I’ve witnessed so many Christians act as though they have a “license” to use their words to destroy people.  It is okay to disagree.  I just can’t understand how it is ever okay to belittle, call people names, and question their hearts. It reminds me of my teaching days, when I would have a student that talked nonstop!  I remember a time or two, having to remind them that we did not need to hear every single thought that came to their mind!! 😉  I constantly have to remind myself, as well, that words cannot be taken back once they are spoken. One of the few things we can control in this life, is what we allow to come out of our mouths.  I think of the argument my boys often like to use to justify their hurt or anger over what the other one has said or done to them.  “He made me” say this, or do that, is typically their response when questioned about why they reacted in a certain way.  I spend a lot of time revisiting the fact that no one can make them do anything.  It is a choice. We always have a choice. After it is all said and done, is the risk of losing a relationship(s) worth a few “angry words?”  The same people we may tear down with our words today, might be sitting in the seat next to us at church tomorrow.  They may even be sitting at our dinner table.

I ache for my little girl, and so many others like her, to be able to speak any words at all.  I’ll even catch myself sometimes having an entire car ride with her, in total silence.  Then, I’ll feel guilty that I could have used that time to talk to her.  I could have sung to her.  I could have prayed over her.  I could have used my words to be a blessing.

I will spend every day of the life I am given on this earth, trying to help Lindsay use her words.  I believe with ongoing research and advances in technology, this will be possible one way or another. I also want to choose my words well.  In Cason’s class last year, they had a motto that stated, “Build each other up; don’t tear each other down.”  We have been given a powerful gift, that so many would love to have.  Let’s use our words as a blessing.

Until next time…

Laura

 

Ephesians 4:29–Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear.

Matthew 15:18–But what comes out of the mouth proceeds from the heart, and this defiles a person.

Proverbs 12:18–There is one whose rash words are like sword thrusts, but the tongue of the wise brings healing.

Proverbs 15:1–A soft answer turns away wrath, but a harsh word stirs up anger.

Colossians 3:8–But now you must put them all away: anger, wrath, malice, slander, and obscene talk from your mouth.

Proverbs 21:23–Whoever keeps his mouth and his tongue keeps himself out of trouble.

Colossians 4:6–Let your speech always be gracious, seasoned with salt, so that you may know how you ought to answer each person.

Proverbs 17:27–Whoever restrains his words has knowledge, and he who has a cool spirit is a man of understanding.

Proverbs 11:12–Whoever belittles his neighbor lacks sense, but a man of understanding remains silent.

Matthew 7:12–So whatever you wish that others would do to you, do also to them, for this is the Law and the Prophets.

 

 

 

 

 

 

Happy fourth birthday to my favorite girl!  We spent this past weekend celebrating Lindsay, and I think she has enjoyed every minute.  I’ve sung “Happy Birthday” to her countless times, and she laughs every time! Today, on her actual birthday, she gets to go to physical therapy and speech, followed by a haircut.  This will just be a short and sweet post, celebrating the girl that brings us all so much joy!

We had Lindsay’s party on Saturday, and I really think she enjoyed being the center of attention!  This is the first year where she seemed to enjoy playing with her toys, and, of course, eating the paper as Cason helped her open her gifts! 😉  Her precious teacher even took the time out of her weekend to come to her party. (Have I mentioned before how much we love her ?!)

I’m not exactly sure why, but every year when we sing to Lindsay, I make it through about two words before the tears come.  Just hearing the chorus of family and friends singing to her, brings back a flood of emotions all at once.  I am reminded of how precious life is. I acknowledge just how far she has come, at her own pace. I look around and take in all of the people that are rooting for her.  These people have celebrated every milestone with us, they have hurt for us, cried with us, and most importantly, prayed for us. One of the best parts is watching my boys get more excited to celebrate Lindsay than they do for their own birthdays.  Cason really takes seriously helping me plan and decorate.  He is proud of his sister, and he loves to stand beside her.  Carter loves to point out everything to Lindsay, and he tells me exactly what she loves to play with the most.  On Saturday, when everyone was singing to her, he held up her hands at the end as if she had just won a marathon.  He was so excited for her, and it reminded me that she will always have people to cheer her on, through big or small accomplishments.

We chose a “Finding Dory” theme for Lindsay’s party for several reasons.  One, it was the first movie we were brave enough to take Lindsay to see!  Secondly, I loved the fact that Dory had a “disability” of her own.  She had “short-term memory loss”, and spent much of the movie trying to remember places she had been, while looking for her parents.  I loved that she had friends with her along the way, doing whatever it took to help her.  The motto of the movie was: “Just keep swimming!”  We have sort of adopted that idea into our family, as we continue to take things one day at a time.  The boys even changed the words for Lindsay, to “Just keep scooting!” 😉  (She does a little “army” crawl across the floor to get to wherever she wants to be, so the boys started chanting that one day as she scooted!)

While I was already feeling a little emotional at her party, my mom came up to me and showed me a couple of verses she had looked up earlier that morning.  She told me she had been praying on the way to the party for God to show her what she needed to see that day.  A minute or two after she had prayed these words, she was behind a car on the road that had two verses listed on a sticker.  Curious, she looked up the verses, and read the words from Mark 2:11-12. “I tell you, get up, take your mat and go home.” He got up, took his mat and walked out in full view of them all. This amazed everyone and they praised God, saying, “We have never seen anything like this!”

These verses immediately gave me hope that one day, Lindsay will, too, “take up her mat,” and walk.  (You can tell me differently, and doctors can tell me differently, but I won’t believe you! ;-))

Thank you, for supporting us,  praying for us, holding our arms up in victory when we need to celebrate, and for loving us, and loving Lindsay.

Happy fourth birthday to the best thing that has happened to our family.  To God be the glory.

Until next time…

Laura

Clearly, we have been enjoying our summer, because writing has certainly been on the back burner!  Just when I get used to a new “routine,” it’s time to move on to another one. Somehow, this summer has gone by faster than any I can remember, and I don’t like it! I really do SAVOR these days, thanks to sweet Sara. 🙂 We have spent the summer going swimming, going to camps, therapy a couple of days a week, reading, seeing movies, VBS, and actually enjoying some down time.

The boys went to church camp for the first time this year, where the theme was, “Glow in the Dark.” They learned about shining their light in this world, and learned their key verse in Matthew 5:16.  They’ve been singing all of the songs they learned since then, and they were excited to get to sing some of them again at VBS!  Of course, now I’ve been singing the songs as well, and learning some of the moves! I love how excited they get and how many ways they can think of to be a light to others in this world. The theme of being a light has really stuck with me, too.

I’ll go ahead and confess that in my stage of life, I find it is very easy to get “down” about a lot of things going on in the world and in my own home.  If I look for them, I can find a lot of little things that I wish were different.  I can go through periods of feeling “cheated” out of the life I thought I wanted, envious of others who seem to have it so much “easier” than I do, or just worn out from all I have to do in a day to get us from place to place. It’s so, so easy to let those things consume me sometimes.  But, if there is one thing I am learning over and over again, in this life the only thing I can control is my response and my reactions to any situation.

I also find that God often intervenes in my lowest moments.  When it looks as if Lindsay’s progress is painfully slow, all of a sudden she’ll really show out at therapy!  She’ll stay on the treadmill (in a harness) and actually try to take some steps, when she used to just lock her legs and refuse.  We’re in the process of ordering her a gait trainer, (walker) because she is showing some signs of making forward progress in the one she uses in therapy.  These things are so encouraging to me, because even though they may take forever-they show progress! Some days, one or both of my boys will have just the right thing to say, or do something so ridiculous to snap me out of my “funk!” So, even though it might be easy to find everything that is “wrong” or “unfair” about the world, it’s so much more beneficial to find all of the things that make life sweet!

At the pool the other day, I was sitting on the edge watching Lindsay as she sat in the water.  She could sit that way for hours, just enjoying splashing and watching others run in and out of the water.  I noticed a group of boys and their mothers all playing together, and I thought I recognized a few of the mothers.  I finally realized that at least two of the boys have gone to the same school as Carter and Cason.  I’m not sure how many there were, but each boy in the group had something in common- they all had Down Syndrome.  I continued to watch them as they were having the best time playing, and for some reason just could not stop the tears. (Thank goodness for huge sunglasses!)  At first, I was crying just because I was thrilled that these boys had each other.  Then, I cried as I looked at each mother-acknowledging that they had all once been in the place I have been.  They probably have all been through some of the same grieving processes that I know.  This may not be the life they would have chosen years ago, but still one that they find so much sweetness in every day.  While I was on a roll, I then had tears for the fact that my little girl, though she doesn’t understand it now, was sitting and playing alone.  Because her syndrome is as rare as it is, it’s not likely to look around the pool (or around the state) and find someone in her same shoes.  About that time my mom came over, and I told her why I was crying.  I had just finished saying that I worried about who would play with Lindsay one day, when a little girl stooped down beside her and tried to engage her.  She was trying to show Lindsay her Barbie doll, and I knew immediately why she had come.

That’s how it happens, isn’t it? You can be in tears of sorrow one minute, and the next be in tears of joy!  All because one little girl chose to show her light, even though she had no idea how profound it was to me. Just the day before that, we took my kids and my nephew to a trampoline place.  I found a few spots I could safely put Lindsay to let her play, which is not easy to do in a place surrounded with trampolines!  At one point, my nephew (also 3) noticed Lindsay sitting and watching.  He told me he was going to go and get his bear, and asked me if I thought she would like to play with it.  I told him that I bet she would love it, so he was extra proud to run and get it.  After she had played with the bear for awhile, he asked me, “Does she like it?” It was so simple, but that three year old recognized a way to be helpful, and he just did it.

Often, like so many others, I’ll look on social media to sort of “escape” reality for a little bit.  Lately, I’ve found that instead of pictures of cute kids and what everyone ate for dinner, 😉 there are more and more things for which I have to push the “hide” button! I have made a choice that the world is hard enough, hateful enough, without my help!  With all of the negativity that is constantly streaming on TV and social media, I want no part of it.  I can’t think of one time where sharing or “liking” hateful “memes,” videos, opinions, etc., brought about any good.  In fact, I would suspect it does the opposite.  I saw a quote from Lysa TerKeurst that said, “Let’s not hash, bash, or trash on the Internet. Remember, the Internet never forgets.” I just know that I have enough troubles to keep me occupied, and I never want my kids to be able to look back one day and see that I contributed to making someone feel “less than,” or that I thought my feelings or opinions on any topic were superior to those who have reasons for feeling differently.  I want to be a light, and I don’t ever want to use my little corner of the world to do or say something that interferes with that.  As my nine year old said the other day, “Why would anyone spend time being hateful, when they could spend that time helping others?” That certainly solidified my decision to choose being a light over the need to be “right.” If I won’t allow my children to go out of their way to say things with the purpose of proving their point, in order to be hateful toward any particular group of people, I certainly cannot be an adult doing the same! Of course, we all have opinions, and reasons for them, but I feel they shouldn’t be at the expense of others.  I think of it like this: if I am the only exposure to Christianity someone ever has, I cannot imagine that the impression I give them is that I am no different than the rest of the world.  If they see me playing along, putting down others with whom I may disagree in the same manor children on a playground would do, how can I expect to show them Jesus?

I want to follow the examples of the”little lights” I’ve seen.  I want to look for more ways to be just like the little girl at the pool, my nephew, my own boys, and of course, my Lindsay.  She is a little light everywhere she goes and to everyone she meets!  I hope that when I am tempted to jump into the negativity that is so prevalent, I instead look for ways to be helpful. I can be encouraging to someone by writing them a note, offering to listen without judgment, helping  teachers when they have more than enough to do, and opening my eyes wider to see what God is showing me. One person at a time, I believe there is so much light to share- in a world where we have more than enough darkness. Sharing a few pictures of my kiddos reminds me of all of the light in my world. 🙂

I’ll close with the chorus of the “newer” version of “This Little Light,” the boys have been learning…

This little light of mine

I’m gonna let it shine

And in the darkest night

I’ll be the brightest light

No covering up, no shutting it down

No blowing it out

I’m gonna let it shine all around

This little light of mine

I’m gonna let it shine

Until next time…
Laura

 

 

 

 

When I was growing up, my mom would often say, “I can’t wait until you have kids of your own one day!” Usually, it was in reference to something I’d said or done that she couldn’t wait for me to experience from the other side. 😉 I just know I had all these grand ideas of how I would do things, how I wouldn’t do things, things I would and wouldn’t say, and how I would always be prepared with just the right answers for my children.  (I think we all probably know where this is going…then I actually had kids!) 🙂

First of all, when you have multiple kids that happen to be born on the same day, it’s a good day when everyone has been bathed and fed! (We used to keep these little charts for the first month or so of the boys’ lives, just to keep up with who had been fed, changed, etc.  I can’t promise that there weren’t days where one boy was mistaken for the other one, and fed twice!) By God’s grace, we survived those days and barely remember them now. One thing I do remember though, is the feeling I had every single morning when I woke up bright and early. I used to describe it as almost feeling like Christmas morning! I just couldn’t wait to see them, feed them, and dress them! They were the answer to countless prayers over many years, and I have been thankful every day since.

Another thing my mom would always say is, “You’ll  understand when you have your own kids!”  Boy, was she right.  I’m not sure, but I think she meant one day I would understand how much you can love someone, unconditionally.  I think she was talking about the times that you’re so proud of them, you feel like your heart could burst.  I’m pretty sure she also meant that when someone or something hurts your children, you hurt more than they do. That you want to just be able to “fix” things that go wrong, but can’t.  She must’ve known that I would understand how it feels to lie awake at night, wondering if I said or did the right thing in whatever the most recent difficult situation. Surely, she was referring to the times that you are so tired you can barely keep your eyes open, but your kids need help with something or just have something they want to share.  I bet she wanted to tell me how difficult it is when you know that your child knows the right thing to do, but for whatever reason- they pick the wrong choice. She knew that even when you could not imagine loving another child as much as your first child(ren), you absolutely will.  She would’ve told me that you feel so conflicted when you want to be several places at once, making sure each child feels important.  I know she wanted to tell me how hard it is when you have to let your children learn the hard way sometimes.  She knew that each day, you have to let go a little more. I’m sure those are just a few of the many things my mom was referring to when she told me that one day I would understand. After all, we haven’t even reached the teenage years! 😉

I don’t think when we had those conversations, my mom envisioned that one of the things I ‘had no idea’ about was what it would be like to raise a child with “special needs.” But, here we are! In my opinion, it’s very much the same and also very different than raising “typically developing” kids.  It’s the same in that you love them as easily and unconditionally. It’s different in that you wonder if everyone else feels the same way. It’s the same in that you want them to reach their highest possible potential.  It’s a little different when you might have to adjust your expectations, or at least be reasonable with them. It’s the same wanting them to be independent.  It’s different when “independent” may not be entirely possible. Same is that you make sure each child has what he/she needs for school each day. Different is that this means cups with thickened milk, diapers, foot braces, and chewy necklaces instead of books and homework.   And, it is absolutely the same that you want people to treat your children well.  There’s nothing different at all about that.

I get just as excited for Lindsay to hold herself up on all fours as I do for Carter or Cason to meet one of their reading goals.  I laugh just as hard when she’s destroyed her hair in thirty seconds after I’ve spent ten minutes fixing it, as I do when the boys say something hilarious.  I ache for her when she’s having a rough week and can’t tell me why, just as I do when one of the boys is having a bad week and can tell me why.

I had no idea until I became a mother how many times I would change my mind, how many words I would eat, and how many ways I would be humbled by something one of my children said or did. I didn’t know that not only would I have to be their biggest advocate, but that I would also need to learn when to let things go.  I had no clue how special it would be when Lindsay’s teacher practiced with her and had her “hand” me a Mother’s Day gift that she “made.” I didn’t know how much an unsolicited hug from my non-hugging son could make my day.  I am surprised by how much fun it is when my other one decides we should just stop what we’re doing and dance.  I didn’t know that it is possible to find joy no matter what, and that I can choose to find it every single day. Even on the days or weeks where it seems as if all I do is go back and forth from school to school to pick up a sick child and  have about a hundred things I need to get done, I am just thankful that they need me.  And, although I still cannot fathom how much our Heavenly Father loves us, the complex feelings I have for my children give me a tiny glimpse.

Being the mother to three unique, strong-willed individuals is rewarding, fun, hard, scary, exhausting, humbling, funny, frustrating, challenging, unexpected, and wonderful.  Sometimes, all at the same time.  I love every bit of it. That, I know.

 

Until next time…

Laura

Romans 5:2-5 “Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Well, I’ve just been sitting around lately, bored and wondering what to do with my time.  😉 Seriously,  I wish!!  It’s more like, I haven’t had a spare minute to even think about writing.  Or when I do, it’s at night when all my eyes really want to do is close! It seems “Mom duty” has been needing a lot more attention lately, so I’ve just been trying to survive.

The initial title of my post was, “Hard,” but another “H” word kept sneaking in, so I changed it.  (It’ll come up later-don’t worry!) Lately, for a week or two at a time, life has simply been hard.  I don’t know another way to put it.  I think we’ve established before that I really do try to stay as positive as possible, and clearly, the devil picked up on that.  We had the good majority of a week where Lindsay had a stomach “bug,” and it was terrible. Not that any are lots of fun, but throw in a child who is both nonverbal and not particularly mobile, and that leaves a very frustrated momma and little girl. At one point, I literally got all of the boys’ clothes/lunches ready for school the next day and was sure I was headed to the emergency room with Lindsay.  As much as she had gotten sick, I just knew she had to be dehydrated.  Of course it was after hours, so I called and spoke to the on-call nurse to relay my concerns.  She asked all of the obvious questions to try and determine if Lindsay was dehydrated and in need of possible IV fluids.  After speaking to the doctor, they decided we would first try a few doses of an anti-nausea medicine, which slowly started to work over the next few days.  (As a side note, can I just say how much I love the questions from the nurse such as, “Is she still able to get up and go to the bathroom when she needs to?  Can she still walk to the kitchen to get a cup of water and drink a few sips?” Of course, I would like to respond, “Oh yes, she also does back handsprings down the hall, while telling me what she’d like to drink.”  Now, I know the sweet nurse doesn’t know Lindsay or her abilities, but it doesn’t make it any more fun to explain that she’s actually nonverbal and cannot get out of her bed without being carried.) Once we finally got her to feeling better, she made it a few days in school before they were out again for spring break.  So, we had a few “normal” days before we had another solid week of hard.  For reasons I still do not know, Lindsay was UNHAPPY for an entire week.  I don’t mean a little fussing here and there; I mean anytime she was awake, she was crying. I’ve often said that one of the things that makes dealing with all of her issues a little more bearable is the fact that she is such a happy girl!  Her overall disposition has just always been so sweet.  So, for her to be obviously miserable, it was excruciating.  I even left her physical therapy early one day and marched her into the doctor’s office, just knowing he would find an ear infection or something.  NOTHING.  He determined that she was just throwing tantrums, and that it was a “typical” behavior.  While I agreed that she was, in fact, doing that to some degree, I know something was bothering her.  She would just arch her back in pain,  and scream. Exactly a week from when she started being so upset, the boys were having some friends come to a bouncy place to celebrate their birthday.  I decided not to bring Lindsay along, because it would have been next to impossible to carry her around for two hours.  And given her awesome temperament lately, I didn’t want to chance dealing with that as well!  She stayed with my dad during the party, and he said she was happy almost the whole time.  I was sure that it would all change when we got home, but she was still happy!  It was almost like a switch had been flipped, and she was back to her “old” self.

Sometimes, I let the hard stuff almost consume me.  I get wrapped up not only in my own, personal difficulties, but I feel so deeply for others who are dealing with their own.  It gets overwhelming hearing and reading about those coping with “ugly” diagnoses, dealing with losses, struggling with infertility, losing relationships, etc. This world is just hard.

Romans 12:12 “Rejoice in hope, be patient in tribulation, be constant in prayer.”

One day when I was just overcome with frustration because I couldn’t do anything to make Lindsay happy, I just lost it.  Cried like a baby.  I gave myself a good ten minutes or so in the shower, where I knew no one was listening.  Then I just started praying for “moments.” I prayed that if Lindsay was going to be upset all of the time now, that I would just cling to the little moments when/if she was happy.  If this was going to be her new “normal,” I asked that I would  learn to be grateful for the tiniest things.  (The truth is, I was so worried that she was going to be unhappy from now on, and nobody would want to be around her.  I think that was one of the scariest things to me. ) And, as much as I just wanted to throw my hands up and give up in the middle of some of her fits, that wasn’t really an option. You know, because I’m the mom.

In the middle of the hard, I had hope for better things to come.  (I told you there was another “H” word!) Sometimes, I might just hope for a few quiet minutes. Other times, I have great hope that Lindsay will overcome many of her obstacles.  I will NEVER, as long as I live, stop hoping that she will walk, talk, and be able to learn how to do some things independently.  I posted a little video on Facebook one day showing her playing one of the apps we added on her iPad  at speech therapy a few months ago.  One day, it all started “clicking” with her, and it was obvious that she was understanding a little cause/effect.  I stated at the time that it might not seem like a big deal, but that it is huge for us!  You see, something that small gives me bigtime hope for things to come!  We had Lindsay’s annual IEP meeting at school a little over a week ago, and I commented to everyone in the room that one sensitive area for me is when someone may innocently ask me what Lindsay understands. Maybe because I don’t really want to know, or maybe because it’s scary, but I try not to really think about that specifically too much.  I get tears every single time someone asks me, but Lindsay’s school physical therapist gave me a great response for the next time: She said, “Ask them, how much time do you have?!” She might be one of my new favorite people.  ;-)Lindsay’s teacher and all three of the therapists quickly jumped in to give me evidence of her understanding in the classroom, and I left with more hope than I’ve had in awhile.

Romans 15:13 “May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.”

Last Friday, I did a rare thing for me, and I left the kids home with Chip in order to go to a women’s event at my church with my friend, Laura. (Because our moms both had excellent taste in names. 😉 ) We heard speaker and author, Annie F. Downs, talk and preview her new book, Looking for Lovely.  I loved so many of the things Annie spoke about, as she encouraged us to look for ‘lovely’ things in the midst of so many hard things we encounter in this life.  Some things are simple. Some are profound.  One of my favorite quotes that I underlined in her book says, “If you aren’t experiencing pain, you aren’t experiencing beauty. Darkness makes us appreciate the beauty of the light. If you aren’t allowing yourself to feel the hurt, sadness, loneliness, and disappointment this fallen world has to offer, you probably aren’t feeling the fullness of the joy and beauty the redeemed moments have to offer.” She’s referring to her tendency to be a “quitter” and to not really want to stick around and see uncomfortable or painful things through to the end.  It speaks to me in a little bit of a different way.  What I am learning to be true is that even in the middle of the very hard times, in your lowest of lows, you learn to appreciate the beauty of the smallest things. I am desperate for anything for which to be hopeful during these times.

In my case, a lot of what keeps me going, is laughing at the things the boys do and say most every day. One night, Carter said the sweetest prayer followed by, “Lindsay, let’s talk about your future.  You could be a very successful underwear model.” Another night, he said, “When I grow up and get a job, I’m going to bring everything I need to my office-including a mug that says, ‘I love Wednesdays!'” When Cason was trying to ask him a question one afternoon as he was drinking water, he said, “Cason, a man drinking out of two straws is serious. He doesn’t want to talk.” A few weeks ago, for book character day at school, Cason chose to be Dobby, (a vertically-challenged house-elf from the Harry Potter series) and he said, “It’s like I’m the perfect size!” As if my kids weren’t entertaining enough, I have texting with my mom!

 

 

Even when life feels overwhelming, when we have to look a bit harder to find hope, we have it in Jesus.  He is the way to two of my favorite “H” words: Healing and Heaven. Oh, how I long for both!

 

*I heard this song by Lauren Daigle recently, and it has played over and over in my head.  This is the first verse and chorus.

Letting go of every single dream

I lay each one down at your feet

Every moment of my wandering

Never changes what you see

I’ve tried to win this war I confess

My hands are weary I need your rest

Mighty Warrior, King of the fight

No matter what I face, You’re by my side

Chorus:

When you don’t move the mountains I’m needing you to move

When you don’t part the waters I wish I could walk through

When you don’t give the answers as I cry out to you

I will trust, I will trust, I will trust in you!

Until next time…

Laura

 

 

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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.”

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.

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. 😉 )

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!🙌🏻

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.

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!

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.

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

 

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.

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!

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!)

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! 😉

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!

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!

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. 😉

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.

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

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

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.

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.

“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.

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! 🙂

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?

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!

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.

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! 

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.

Until next time…

Laura