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Reality

As usual, it’s been forever since I last sat down to write.  As the kids get older, their schedules make life even busier, and it’s harder to be able to take the time I need to process my thoughts.  The last time I posted we were just starting to add a second seizure medication to help try and stop the weekly/sometimes daily seizures Lindsay was experiencing.  So far the combination of medicines has kept her seizure free for months!  The neurologist told us at her last appointment that if she remains seizure free for about six more months, we would look at cutting back on one of the prescriptions.  Of course, I hate to mess with what is working, but I will have to trust that we will do what is best when the time comes.

Carter said that another kid at school started to “mock” him and ask who his hero was. When he quickly explained what his shirt meant and who it was for, the child said, “That’s cool!” 😁

September 18th each year is Pitt Hopkins Awareness Day. It is a day that fellow parents of children with this syndrome use various methods of spreading awareness about this rare disease to so many in the world who may never otherwise hear of it.  I will be completely honest in admitting that before Lindsay came along and required us to pay attention I probably would have just “scrolled” on by another post about “another” awareness day, not because I did not care, but because I had no idea what help I could offer.  As with so many things until you are affected personally by something, you simply don’t have the capacity to fully understand it.

The theme that was chosen to spread more awareness this year is #pittreality, meaning we aren’t just going to show all of the fun pictures of our kiddos with their happy smiles and cute clothes.   Yes, we will still show those, but, we also wanted to show the not-so-cute side of dealing with a lifelong diagnosis.  I beg you to understand that in no way is showing a bit more of our reality a call for a “pity party,” on our behalf!  (I’m not really a fan of those, anyway, and prefer to have them by myself if I do need to have one! 😉)

I think one of the most frustrating parts of a diagnosis that is so rare is no one has ever heard of it.  And by no one, I mean most doctors and all insurance companies.  For whatever reason, we were fortunate enough to have the state’s Medicaid program as a secondary insurance for several years as a way to absorb costs that our primary insurance would refuse.  (And there are many!)  When I applied on Lindsay’s behalf several years ago, it was almost too easy.  I just assumed that when I gave the information online about her disabilities, she qualified out of medical necessity.  During that time, she was able to receive some of the therapies she needed that our insurance would not cover, as well as numerous doctor’s visits, EEGs, a wheelchair, and a hospital stay.  Unfortunately, even though that program said they had everyone reapply each year, we were never asked to do so until after having had it a few years.  I spent the better part of a year gathering and submitting documents that showed every possible detail about our lives, working with a lawyer from the Tennessee Justice Center, and fighting for Lindsay to be able to keep this additional insurance.  In the meantime, I learned from her neurologist that if she were living in any other state, she would likely automatically qualify for the state’s program simply because of the scope of her disabilities.  In Tennessee, having access to this insurance  is solely based on income, regardless of your disabilities, until you are 18.  After spending  more hours than I can count trying every possible way to keep her covered, she finally was dropped from that program this summer.  It is so, so frustrating to feel as if you are trying to get something you don’t “deserve,” when all you are trying to do is give your child what she needs to thrive.  It’s hard to say what’s more difficult to understand: the fact that our primary insurance refuses to cover so much of what she needs, or why parents’ income has anything to do with what a completely dependent child needs.  Even if you make millions of dollars, it would be virtually impossible to continue to cover what our Pitt Hopkins’ children will need as they grow.  For now our only hope in Tennessee is the implementation of the Katie Beckett Waiver.  We are the only state that has not had a program such as this, which is designed to help families like ours be able to offset some of the astronomical medical costs with which we are faced.  This waiver is for those who do not qualify for the state’s Medicaid program but, I believe will be limited to three thousand or so individuals and will require an application process.

Another reality we face is something as simple as a dental visit.  Fortunately, we have a wonderful children’s dentist who also specializes in working with children who have special needs.  Unfortunately, when you have a child who is not able to follow instructions or sit still in the chair, something as simple as getting a cavity filled requires a  hospital visit.  We will experience this in January, as they will have to put Lindsay to sleep in order to fill a cavity and to be able to get an x-ray of her mouth. (You might go ahead and start praying for us now! 😉)

There are the daily parts of our reality such as making sure we have the right cups, something to thicken Lindsay’s milk with, enough medicine, playing her favorite videos for the ten thousandth time, and carrying her forty plus pounds up and down the stairs, that are almost automatic at this point.  If we leave the house to do anything, we have to think ahead.  Is that restaurant easily accessible? Does that store have a Caroline’s Cart, or am I going to have to push her in her wheelchair, while also pushing a cart?  Is there something Lindsay can do there? Does that building have an elevator? Is there somewhere I can change her?

When I was thinking about the day-to-day things that are “normal” for us now, I thought I might ask Carter and Cason some of their thoughts on what it is like to be a sibling of someone with special needs.  I told them to feel free to say whatever they wanted, even if they thought it might hurt my feelings.  I really wanted honesty and to know exactly how they see our reality as well.  (Be careful what you wish for!)  While I have their permission to share their thoughts, I will keep who said what anonymous. 😊  I specifically asked them to share the positives and negatives with me.

“I like always having someone to laugh with or to cheer you up.”

“I like making her laugh!  It feels good when she does!”

“It was kinda neat getting to skip some of the lines when we went to Disney!”

“I love seeing her work and finally learning to do something!”

“Her toys are fun.  It’s fun to push her in her bike or her wheelchair.”

“I like doing the triathlon with her,”

“We can’t really go on vacations, because it’s hard to find something we all can do.”

“It’s frustrating when she gets in one of her moods and cries nonstop.”

“I feel like when she’s throwing a fit or needs help and I come to ask you a question, you don’t have time to answer me.”

“I wish we didn’t have to have her shows on all of the time.  It’s hard to concentrate.”

“I get frustrated that she can’t get the insurance she needs, but others who have more common disabilities can get it. It’s not fair that she can’t get what she needs, but others can.”

“I didn’t like when she had seizures and was in the hospital. ”

“I just feel bad for her, because she can’t do anything about it.  It’s not fun.”

“I was so scared when I heard she fell out of her wheelchair.” (She somehow got her seat belt unbuckled the other day, and fell face first on the pavement at school.)

“It’s kinda funny when people stare at her.  I just stare right back at them.”

“”I wish people knew she’s not like everybody else, but she should be treated like everybody else.”

“Don’t just think she can’t do something”

“I like when people take the time to talk to her or engage her, instead of being, “fake,” and pretending to be nice only because she has a disability.”

“I like when friends from school make her little notes.”

“She’s…like… an inspiration to me, because she does a lot harder stuff than I do.”

Right after her wheelchair fall.
She’s pretty tough!

I agree with everything they said, but some of it was certainly hard to hear! I  am beyond proud of these boys, though, because they have never once made me feel as though I am slighting them in any way.  They see that I try to be at all of the things that are important to them, even if it might take me a little longer and more planning to make it happen.  (And I might feel like their personal Uber driver!) My prayer for them is that they will continue to love their sister with an extra dose of patience and understanding.  I hope they see us doing our best for all three of them. The things they are learning along the way can only be taught through life experience, and they have had more than their share!

Last Sunday at church we had a guest speaker who happened to have cerebral palsy.  As I listened to his story about his journey through college and his eventual graduation, I couldn’t help but make comparisons between his experiences and the ones we have had so far and will continue to have.  I know this will sound bizarre, but part of me was a little envious that though he is physically limited, he was perfectly able to give his testimony.  Cognitively, he is as smart as can be.  I sat there thinking, “At least he can tell others his story.”  I was in tears for most of the time that he and his family shared what he had written.  When he said that he knows his first steps will be in heaven, I lost it.  I KNOW Lindsay will walk, and talk and be able to dance in heaven.  I know she will.  But, the reality is– I want her to do all of those things here.  I want her to be able to tell us her story.  I realized, though, that her story is different.  God is using her just exactly the way He intends, in order to bring His glory.  While I may never understand it, I don’t have to.  Lindsay tells her story every day, when she squeals in happiness to let us know she loves what she is doing.  She tells her story when she reaches up for a hug when her dad gets home or rests her head on her brothers’ shoulders.  She tells it by being innocent and full of joy, whether it be humming along to her “shows,” or splashing for hours at the pool.  She is best example of how to slow down and enjoy the simplest of things.  She looks up and smiles all of the the time, as if she understands something we don’t. I think she has her own sweet praise and worship with her angels every day!

At the end of our lesson on Sunday, they shared a favorite scripture of Seth’s, and it might be my new favorite.  “But our citizenship is in heaven.  And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.” (Philippians 3:20-21)  Lindsay’s body will made whole! So will yours and mine!  Every bit of what we face here on Earth will be worth the reward that is waiting for us.  (I think Lindsay already has a glimpse of what awaits her. ☺️)

Until next time…

Laura

Holding on and Letting Go

So much life has happened since we last “talked,” and I’ve honestly been too overwhelmed to stop long enough and recognize it all.  If you write it all down, that somehow makes it more real.  By now we know that I like to “keep it real,” and that doesn’t always mean it’s pretty!😬

Shortly after Lindsay turned six at the end of August, my mother-in-law, and my children’s “Gran,” passed away unexpectedly. I think we all believed that when she went to the hospital it would be a fairly quick stay, after all she had been through and survived just a couple of years ago.  When the reality started setting in that she was ready to go, I think I can speak for all of us in saying that she was the only one ready.  We simply weren’t ready to tell our kids, to accept it ourselves, and we weren’t prepared for how different life would be afterwards.  I lost my first grandparent when I was in sixth grade (the same age as my boys), and I still remember what a profound effect that had on me.  The same morning that Gran passed away, I got a call from Lindsay’s school that she wasn’t feeling well.  She pretty much acted miserable for the next few days, and I am convinced that she sensed what was going on in her own little Lindsay way! I still love to dress her in the sweet little clothes Gran had just gotten for her birthday!

We know all too well that the world keeps spinning, even when we feel as though it should stop and mourn with us.  One of my favorite memories during those first hard days was the boys’ determination to run their next cross country race in honor of Gran. They both ran their hearts out and finished together with their best times ever!  They have done really well in their first year of middle school, and Lindsay has seemed happy in kindergarten.  I know Gran would be so proud of them!

One day a few months ago when I was watching Lindsay work with her physical therapist, I noticed how she would become frightened if she thought Mrs. Carol might let go of her while she was practicing standing.  I immediately thought of the years that she had no reaction at all to the possibility of falling.  One of the things that comes along with her syndrome is that almost everything has to be learned.  Even fear.  Whereas we have reactions that are just innate, children with Pitt Hopkins most often do not.  While it might sound odd that I would be relieved that she felt fear, it meant that she had finally made the connection of that particular cause and effect relationship.  As it often does, though, my mind got to wandering and thinking about how we all struggle with learning when to “hold on” and when to “let go.” Sometimes we have a choice, and sometimes the choice is made for us.

Getting fitted for some new braces

I began thinking of all of the things I have a hard time just letting go.  Someone hurting one of my children or family members, Lindsay having to struggle daily to do the most simple of tasks, fear of the unknown, and wishing just one day could be “easy,” are chief among my list of things that I wish I could simply release.  For whatever reason, it feels safer to keep holding on to what feels familiar.

One thing Pitt Hopkins Syndrome has taught me OVER and OVER again is that I am not in control.  I never was, but I at least liked to pretend sometimes! 😉 Even with something as unpredictable as a rare disease, I like to compartmentalize things and make them more manageable for me.  Just when I think I have everything as “figured out” as I can have it, something new always seems to present itself.  This past December,  that something was the beginning of seizures for Lindsay.  We knew based on the information we’ve learned about this syndrome that seizures might be likely some day,  but we were certainly hoping to be able to avoid them altogether.  We managed to get Lindsay into the neurologist the following day after she had her first seizures at school and that same evening at home.  We were able to have an EEG done while we were there, and she had a small seizure that was recorded.  We thought we had a simple enough “fix,” when they determined what type of seizure she was having, and we immediately began medication.

Lindsay did well on the new medication for almost a month or so, before she began having seizures again.  I’ve lost track at this point, but we have increased her dosage quite a few times.  She seems to do well for a bit, and then she will start having multiple seizures again.  The most terrified I have been as a parent, other than when we received her initial diagnosis, came on Valentine’s Day.  As I dropped her off for school, I noticed that she suddenly slumped over her chair while going into the building.  I quickly parked and ran over to her and her teacher, and she was in the middle of a seizure.  It took her a few minutes to come back to being herself, and we determined she was probably going to be okay.  Fast forward until about an hour after she had been at school, and I received a phone call from the secretary.  She told me that Lindsay’s seizures were lasting longer, and the nurse had already administered her emergency medicine.  I knew this meant that this time her seizure had lasted for at least five minutes.  They had already called the ambulance, and Chip and I rushed to the school.  I don’t even remember how I got into the building.   As soon as I saw her in the clinic, she looked completely unconscious.  I just lost it in front of everyone.  It took a few minutes for them to assure me that she was asleep because of  the medicine, but she appeared okay, otherwise.

Lindsay started to come back to her “normal,” on the way to the hospital, and I answered the same questions about a thousand times between the paramedics, emergency room staff, and eventually the doctors and nurses that treated her while in the hospital.  She had another EEG, this time overnight.  Since it did not “catch” any seizure activity, we moved ahead to changing the dosage of her medicine again and got to go home.

What I am slowly coming to realize is that just when I think we have a new normal figured out, things change again.  Exactly one week after our ambulance ride, I looked in the rear view mirror on the way to school and noticed something was not quite right.  I pulled over on the side of the road, jumped out, and observed that Lindsay was having a different kind of seizure than what I had seen before.  I started videoing it in order to have proof for the doctor and to keep up with how long it lasted.  Talk about feeling completely helpless!  It is so hard to watch your child not be able to control her movements and to not be able to do anything except watch and wait.  Once it was safe to do so, I turned around and went straight back home. I sat in the garage with her, until she woke up about ten minutes later. While I sat there, I had tears of anger and frustration.  Are we ever going to have “normal” day again?

Not long after her scary seizure in the van.
Checking on his sister!

After yet another medicine dosage change, we had a good few days and thought we were finally on the right track.  Then came Tuesday and Wednesday nights, where she had at least four seizures during the night.  It probably goes without saying, but I feel as if I have a constant knot in my stomach almost all day long now.  When we actually do get to sleep, it seems to get interrupted every other hour or so by a seizure.  When I take her to school,  I’m constantly looking at my phone, waiting on the dreaded phone call.  I decided to call Lindsay’s doctor again to see if there were any other options at this point. In the meantime, (and ironically while finally working on this post) I got a call from school that she’d had another seizure there.  (Thursdays aren’t my favorite days lately.)   Now, we have added an additional medicine and hope we might finally see some relief.

Sneaking selfies in church!

In the midst of all of this chaos, I know I am not alone.  Some days, having a nonverbal child who just so happens to now have scary seizures can feel like the loneliest place in the world.  Worrying because you’re aware that everyone at school is probably now afraid to work with her isn’t the best feeling. I’d be lying if I said that I handle it well even some of the time. I’ve spent so much time lately begging God to just make the seizures stop. Please just make this one part of her life easy.  What I do know is that when I’m wide awake in the middle of the night, He is, too. When I’m sick at my stomach with worry, He’s there, too.  I’ve learned that when I’m completely out of control and have no choice but to “let go,” He’s still completely in control. He wants us to hold on only to Him.

My “Type A” self has had to realize that maybe the laundry doesn’t all get folded and put away immediately, and the house doesn’t have to be perfect.   It’s okay if my kids aren’t involved in every possible extracurricular activity.  I’m allowed to just say, “no,” sometimes.  I am a work in progress of learning to not be so hard on myself and letting myself just sit and do nothing for a few minutes sometimes.  Every minute of every day does not have to be filled with something!  Most importantly, when it feels like everything I once clung to so tightly isn’t quite as important anymore, I see more clearly the things that really matter.  Lindsay is pure joy, and she radiates that joy wherever she goes!  She has a better attitude than I do, and I learn so much from her and her brothers every day. They teach me to hold on to what matters.

Until next time….

Laura

Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge him, and he will make straight your paths.  (Proverbs 3:5-6)

The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid?  (Psalm 27:1)

My soul clings to You; Your right hand upholds me. (Psalm 63:8)

Life Changes

Well, I think this has been the longest time I have gone between posts! So much has happened in between December and now, and I am finally ready to play “catch up!” 😉 (I’m starting this writing on the night before Lindsay’s first day of kindergarten, so I might be a bit emotional, as well!)

“Buela” and Lindsay. One of their favorite things to do is sing praise songs together. Every time they do, Lindsay will look up, as if she sees something we don’t. I’m pretty sure she’s entertaining angels.

 

In December, right before Christmas, my parents took our family and my brother’s family on a Disney Cruise!  It really was the best time, and it is hard to say who enjoyed it the most!  If you know Disney, you know they think of everythingand this was no exception! What’s not to love about being waited on hand and foot for a few days?!  Lindsay enjoyed every minute of it, too, and I might have loved dressing her up in all the Disney outfits! 😉  Unfortunately, the boys think cruising ought to be a yearly tradition.  I have sad news for them, unless they are planning on getting jobs in the near future!

I turned forty in January, and all of my boys made sure to make me feel as old as possible, by decorating the house with “caution” signs, and getting me a cane that squeaks. I still vividly remember my mom turning forty, so I’m not really sure how it happened to me so soon! 😉

In March, we celebrated birthdays,  and we celebrated a life well-lived .  On March 7, my grandmother, “Granny,” passed away unexpectedly.  She was ninety years old, but I think a part of me thought she would outlive us all!  I’ll share some of what I wrote to be read at her funeral, but first I want to remember the last time we saw her.  We went to a restaurant to celebrate my sister-in-law’s birthday after church,  on the Sunday before she died.   It was a pretty perfect day.  My boys and my nephew had the best time playing outside at the restaurant, and I noticed Granny just soaking it all in.  She stayed at the table and entertained Lindsay, and we took her home afterwards.   After she got in the front seat of our van, I noticed she was breathing strangely.  I first thought she was laughing, but soon discovered  she was trying to catch her breath.  She seemed to be okay after awhile, and even joked around about wondering if she were going to outlive her dog, or vice versa.  (By the way, he’s now living with us, and we call him “Great Uncle Beau.” )😂😂  I helped Granny up the stairs of my parents’ house and made sure she got in okay.  Most importantly, I put her “take-home” box of banana pudding in the refrigerator for her to enjoy later.  😉😉

Fast forward two days, and I got a phone call from my mom late in the evening letting me know that she thought she’d “lost” Granny.  A lot happened in between that call and when she peacefully went to heaven, but the following is some of what I wrote for her funeral:

“Always be kinder than you feel.” Those words are written on a huge print in my house, but if you know my Granny-these are the words she lived by.  She had a gift for ALWAYS being kinder than she felt.  She had a way of making you feel as though you were the most special, important person in the room.  Most importantly, she was devoted to prayer.  That was her answer for everything.

Granny LOVED our children.  When I had Carter and Cason, she would come over to rock them, help feed them, iron clothes, vacuum my house-just whatever needed to be done.  She loved to watch them as they’ve gotten older.  She would get so “tickled”  at some of the things they’d say and do. She had a special connection with Lindsay Ruth.  I feel certain that when we learned of Lindsay’s diagnosis, Granny prayed more than anyone. Every Sunday at church, she would just sit and grin at her and her sweet brothers.  I know she still is.  Granny taught us all how to choose joy, no matter the circumstance.

When Mom called me Tuesday night, she said, “Laura, I think I might have lost Granny.” It didn’t register at first–I thought, “It’s late. Isn’t she usually asleep by now?  Where did you lose her? Where have you looked? She couldn’t have gotten very far.”  After all, she had seemed fine earlier in the day.  Now that I know what she meant, I realize it’s not true at all.  We didn’t lose her.  She’s not lost.  She’s exactly where she’s always longed to be. She’s rejoicing in heaven!

     When Carter and Cason turned eleven on March 20, I think I still expected Granny to call and do her famous rendition of Happy Birthday!  I am forever grateful, though, that they got to know her, and that she got to know and love Lindsay.  Every time I would update this blog, Granny would have my mom print it out, so her “old eyes” could read it  with her huge magnifying glass!

As we know all too well, life goes on.  The boys “graduated” onto middle school in May, and Lindsay finished preschool.  We spent much of our summer at the pool, which is quite possibly Lindsay’s favorite place!  There, she can get out of her chair and just be a kid.  She absolutely loves being in the water and splashing for hours.  Each year as she gets a little older and grows a little more, she obviously gets a few more stares in her direction. I observed something very interesting at the pool this summer, though.  While some children would just glance at her, look away, and go on with whatever they were playing, some would automatically sit down beside her and try to engage her.  Mostly, I would just sit to the side and watch the interaction, only speaking up if I felt it necessary.  Sometimes I might explain to them that they can talk to her, but she would not be able to answer them.  On one occasion, a little girl asked me if it would be okay for her and her friend to splash Lindsay, because they noticed how much she likes it! I was just fascinated by how it comes naturally to some children to be inclusive, and that most really don’t care so much about what makes them different.

On the other hand, as she is getting older and getting more “stares,” I see how much it bothers her brothers.  I’ve sort of had to learn to develop a tough “shell,” in order to not break down  when I notice others, noticing her.  A few times this summer, kids would just come right out and ask, “What’s wrong with her?” “Why can’t she walk/talk?” I usually explain that she is still learning, and that’s how she was made, but the boys sort of freeze if someone asks them.  When  we were putting Lindsay back in her wheelchair one day, a girl who was around the boys’ age asked Carter what was wrong with her, and why couldn’t she just stand up.  I waited to see if he would answer, but saw the shocked look on his face and decided I should probably step in.  I gave a short explanation to the girl, but Carter just couldn’t seem to let it go.  He kept saying how rude it was for her to ask, etc.  I explained to him that instead of looking at it that way, he could use it as an opportunity to educate others. Unfortunately, that won’t be the last time someone asks, and folks don’t always have the kindest way with words.  😕  Later that evening, Carter said, “I should have told that girl that nothing is wrong with Lindsay.  She just wishes she had a sister that cute!” He’s also started saying that Lindsay has, “special abilities,” rather than “special needs.” I agree.

One of our last days of going to the pool this summer, a lady approached me and told me that she and her children had been watching me and the boys with Lindsay all last summer.  She noticed how sweet they were with her and how they just did whatever needed to be done.  She then told me that she had lost a baby after 8 weeks, some time ago, and has since adopted several children.  She had sensed that God was calling her to adopt a child with special needs for quite some time.  (The child she lost had been born with a very rare syndrome, as well.) She said after seeing us at the pool one day last year, she called her husband and told him that she was ready to begin the adoption process again.   She and her kids had watched how much my boys love Lindsay, and they just felt that they could give that love to a special child.  You can imagine the looks on our faces as she was relaying all of this to us.  She then introduced us to her newly adopted daughter, who happens to have Down Syndrome.  I mean, I didn’t even know what to say to her.  To think that we were just carrying on with what we think is “normal,” and we had no clue what God was doing.  We didn’t do anything.  We were just at the right place at the right times.  Don’t think for a second that He can’t take your everyday, “messy, normal,” life and do something beyond your comprehension with it.  I’m telling you, my girl may not walk or talk, but God is using her story to reach many we may never even meet.

Probably my favorite thing about this summer was the “Tri My Best Triathlon,” that Lindsay participated in, with Carter and Cason as her kid buddies and Miss Kaeleigh, as her adult buddy.  Cason saw a pamphlet advertising the event at Lindsay’s therapy clinic and brought it home to read.  He kept saying that he and Carter should  do the race with Lindsay, and I thought it would be a great opportunity for all three of them.  It really was the neatest thing I’ve witnessed in as long as I can remember!  Every participant had a buddy or two to assist them in completing the swim, bike, and run events.  For Lindsay, the swim portion meant that Carter tied a raft around his waist, and pulled her in it, while Cason swam behind helping guide.  The biking portion consisted of both boys taking turns pushing her in an adaptive tricycle.  Finally, the running portion included the boys both running around the track, while pushing Lindsay in her wheelchair.  The best part of the day, and the part I still get tears over every time, is when the three of them were about to cross the finish line.  The boys had discussed prior to the race that they wanted to get Lindsay out, and assist her in actually walking across the finish line instead of pushing the wheelchair across.  I have watched the video of the finish countless times, and every time  I notice something different.  While they were still running the track, the D.J. was playing the song, “We are Family.” As soon as they got Lindsay out to finish, the song, “All By Myself,” started playing.  Oh my.  I think time stood still for just a moment, while I watched my boys help Lindsay out of her chair.  Carter made sure she stood up, and Cason got down on his knees, and literally took each of her ankles in his hands to “walk” them past the finish.  Right as she crossed the line, Lindsay looked up and gave the biggest grin!  It was as if she were so proud of what she’d just done, and I’m pretty sure it was the highlight of a lot of our lives.

Miss Kaeleigh and Lindsay

The last leg of race, running to, “We are Family!”
Getting ready to cross the finish line!
“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. “ II Corinthians 12:9-10.

A song I’ve been hearing frequently on the radio is called, “Life Changes.” It talks about how quickly things change, and how we can wake up one day and nothing is the same.  We’ve had so many  changes over the last year, and I know that will only continue.  The biggest one I’m currently experiencing is that Lindsay is turning six and has already started kindergarten.  When I went to take her in for her kindergarten assessment, it was almost comical.  Carter and I were sitting in the hall, listening to her giggle her way through her meeting with her teachers.  I looked around and noticed all of the other mothers that were anxiously waiting while their children were “performing” for their teachers.  This time around kindergarten is much different than when I took my two boys six years ago.  Most parents are hoping their children know all of their sight words and are already reading.   I’m just hoping my daughter is loved and that the other children will be kind to her.  Of course, I’ll be thrilled if she gains some new skills toward independence, but I’ll take “loved” and “accepted.”

We’re only a few days into kindergarten, but I can just tell that Lindsay is so happy!  I wrote a little book that I went and read to her class about her in order to answer any questions they might have. My favorite question from a little boy  after I had finished reading was, “Can she run?”  Maybe not now, but there will come a day when everything that holds her back here on earth will disappear. I can only imagine!🙌🏻

I’m obviously going through a pretty huge adjustment period, but I know I’ll eventually get used to this new “normal.”  I have been delivering groceries on the side for almost a year now, so hopefully, I’ll get to do that some more.  It’s a fun job that allows me to do a little something for myself and meet new people!  When you are so used to taking care of someone every second of the day, it feels really strange to all of a sudden not have every minute occupied!  Thank you for continuing with us on this journey, as we learn and grow through so many of our life changes.  And, Happy 6th birthday to the most beautiful little girl in the world!

I might have gone overboard on the unicorn theme!

I recently purchased this necklace for several reasons…Another Pitt Hopkins’ mom has created a t-shirt/accessory line, where the proceeds go directly to fund research for our kiddos. They only had 10 of these necklaces made, which include the logo for Pitt Hopkins. I wear it everywhere! To see some of her designs, or to have something unique made, her website is http://rareitees.org 😊

 

Until next time,

Laura

It’s a ‘Wonder’ Full Life

I’ll go ahead and give fair warning…if you don’t care for “raw” and “real,” you may want to stop reading now! 😉When I decided a few years ago to share some of our journey, I realized that transparent is the only way I know how to be.  Somehow it’s just easier to be painfully honest in writing since it doesn’t require us to see each other’s “ugly cries,” if we don’t want to. 😊 I’ve had some things on my mind lately and thought I might actually blog about them at some point, but something kept telling me I might want to see the movie, “Wonder,” first.  Boy, am I glad I did!  It addressed so many of the things I’ve been thinking on and possibly worrying about a little too much.

Pitt Hopkins Awareness Day

I’ll admit, I broke my rule with the boys about having to finish reading a book first, before seeing the movie.  I had also promised them we would see “Wonder” over Thanksgiving break, and we didn’t get as far into the book as we had planned before the break was almost over.  For those who haven’t seen it yet, I promise I won’t give too much away!  If you’ve seen the previews, though, you probably have a pretty good idea of the story.

Before we get to the movie, I should explain what has been on my mind so much lately.  The reality is hitting me that Lindsay will start kindergarten next year.  She’s been in preschool for almost three years now, but we are about to enter a whole new world.  Since she is in a county that believes in complete “inclusion” in the classroom, that means she will be in a typical kindergarten class.  Back in my teaching days, I would have thought this was ideal.  Now that we are talking about my child, it’s a new ballgame.  Of course, I want her to be included, and I think having “typically developing” peers is essential.  What I worry about, though, is Lindsay being the child that everyone whispers about and no one wants to get to know. I can’t even type that without the tears beginning.  I wonder things like, what will she be doing when everyone else is learning to read and write? How distracting will it be to her classmates when she starts “singing” in her sweet little voice, at the top of her lungs? What will she do when all of the other kids are running and playing games at P.E.? Will everyone stare at her in the cafeteria, when she has to have help feeding herself? The list goes on and on. I’ve had many parents tell me that all of the kids will love her, and they will just get “used” to having a child with disabilities in their classroom.  That sounds wonderful and all, but when your child is the one everyone must get “used” to,  it’s beyond painful.

Watching her favorite shows!

I’ve never been a crier in movies, but that changed about a few minutes into watching “Wonder.”  Of course, I felt for the little boy, “Auggie,” when he realized that because of his severe facial deformities, people often wouldn’t look at him, or would do the oh-so-familiar, look quickly and then look away. Even worse, people would just come right out and ask him what happened to his face.  (Sort of like the lady yesterday, who looked at Lindsay and asked, “What’s wrong with her?”  Once I’d had a few minutes to digest what she said, I really wish I had answered, “What do you mean?” It’s hard enough when children ask these questions, but can we please agree that as adults, that is never an okay question to ask?) I hurt for the boy in the movie, that he was fully aware and had to endure the stares and comments.  Then, I became overwhelmed with thoughts of gratitude, first, that Lindsay most likely won’t know if others are talking about her.  A few seconds later that gratitude turned into heartbreak, that she most likely won’t realize others are staring and/or talking about her.

Teaching Lindsay to arm wrestle!
I thinks she likes herself!
Sweet little “Poppy” at therapy.

I am not the first parent to have a child with disabilities, nor am I the first parent to worry every day over all of the unknowns.  All I can do, though, is speak from my experiences.  When I watched this movie with my boys, I thought it certainly should be required viewing for every school-aged child and his or her parents.  I honestly think that for the most part, we tend to maybe avoid eye contact with those who may be seen as different because we don’t know what to do.  The naïve part of me wants to believe that, because I simply cannot justify that anyone would purposely choose to either avoid or make fun of someone because of something that makes them unique.  I think so many things in the movie were huge eye openers, not only for me, but also for my boys, as they realized more than ever how important it is to choose to be kind.

I met my lifelong friend for lunch the other day, and she said something I hadn’t ever really considered before that might have caused a few tears for both of us.  I’m sure I mentioned something about wishing Lindsay could talk, etc., and she said, “I really think you are her voice.”  I think she might be right.  Until she is able to effectively communicate one day, (and I believe that she will) I am her voice.  So as hard as it is to watch her slowly achieve “inchstones,” (I know most people have milestones, but we have “inchstones,” over here😉) that’s exactly what I will be.  As much as I wish weeks weren’t filled with therapies to learn to be able to use one finger to push a button, learn to put one foot in front of the other to take a single step, communication devices to tell us what she wants, and school assessments that are too painful to look at, I will keep doing it.  As long as she needs me to explain to others why she’s riding in a “princess carriage” to get from place to place, I will keep explaining.  If she needs me to continue to ask people to move out of the way so we can get somewhere in her carriage, I will gladly do that, too!😬

“Boys…You probably shouldn’t leave your math lying around if you don’t want me to eat it!”

I asked both Carter and Cason what the most important thing was that they learned from “Wonder.”  Cason immediately said he liked the quote, “When given the choice between being right or being kind, choose kind.”  Yes, please.  Always.  Carter said he learned to not be afraid to be yourself.  I couldn’t agree more. I learned so many things, but it stuck with me how much the issues with Auggie affected his sister.  Since he had been born with so many problems, she sort of learned to suppress her feelings and to just keep things to herself.  Of course, as I watched, I thought of the boys and how our day-to-day must affect them.  Almost immediately, though, I realized just how proud of them I am, too.  I learn so much about how I want to be by watching how they treat their sister, when they don’t even know I’m looking.  They just “get” it.  When Carter felt so bad because Lindsay hadn’t ever been trick-or-treating and created that experience for her, it blew me away.  He set up houses for her to visit, carried her to each house, and gave her his best candy.  When Cason tells her how cute she is, wants to know exactly what she worked on in therapy or what she did at school that day, I cannot help but be grateful.  When Carter could choose to write a poem about anyone for school and he chose his sister, he demonstrated the fact that he is not afraid to express how he feels about her in front of his friends.  Just recently, the sweet lady who sits behind us at church told me, “Every Sunday I watch each of them take care of her and her little needs.  They do things they wouldn’t necessarily have to do, but it’s things that make her moment better.  The boys don’t do it to be seen, just comes naturally.  They have no idea they are being observed.” Thank you, God, for making their ten year old hearts so tender. And thank you, Lindsay, for being the exact teacher they need.☺️

“Trick-or-Treating!”
Carter’s poem he wrote for school.😭
Who needs to walk, when you can be carried?☺️

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In my perfect world, we would all do things not to be seen, but because it is the right thing to do.  We would be so used to “choosing kind,” that it would be second nature to us. We would be like the Publix I was in the other day that had two employees with Down Syndrome, feeling acknowledged and valued, as they happily bagged groceries and carried on conversations with each person who came through their lines. Disabilities would be invisible.

Dress up days for school might be my favorite!

If there’s one thing that gives me comfort in this life we’re living, it’s that as unfair, exhausting, and frustrating as it may feel sometimes, there is One who knows just how I feel. He watched as his Son was ridiculed, spat on, denied, belittled, and ultimately sacrificed, for me. For you.  I can’t begin to fathom that.

(Isaiah 53:3-5) We despised him and rejected him; he endured suffering and pain.  No one would even look at him-we ignored him as if he were nothing.  “But he endured the suffering that should have been ours, the pain that we should have borne.  All the while we thought this suffering was sent by God.  But because of our sins he was wounded, beaten because of the evil we did.  We are healed by the punishment he suffered, made whole by the blows he received.”

What a “Wonder” full life we are living, as our pain pales in comparison to the pain our Heavenly Father chose to endure.  Our trials don’t even begin to compare to what He suffered for us, simply because of His Amazing love.  And so as Lindsay continues to teach us, we are hopefully able to help others in some small way through what we’re learning.

Until next time…

Laura

 

On Turning Five, and Other Random Thoughts!

The birthday girl!
“Helping” at physical therapy!
My favorite girl!

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.

4th grade graduates!
Visiting Lindsay’s old room for the last time!
Our second home this summer!

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.

Getting ready for a communication device evaluation!
#teamwork

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!!

1st day of her new school!

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.

Trying out some wheelchair basketball!
Long day!

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!? ☺️

What good is cake, if you can’t wear it?!
Watching her shows!
Mean mom…even turns the pool into physical therapy!
Love!
Mrs. Carol has worked with Lindsay since she was an infant.
Wearing his “Loving Lindsay” shirt to school!
I can always count on Cason to help me take Lindsay for a walk!

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

Keepin’ It Real…Part 2

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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!

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So glad to have “Gran” back home!

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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!;-) )

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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.

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He might have snuck out of class to see her!

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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.)

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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.

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Poor little eye…
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No thanks, I don’t actually want to make a choice today!

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.”

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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.

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Playing the “No laugh challenge!”
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I’m never going to argue with a 10 year old brother, who wants to dry his sister’s hair!

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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!”

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I think she knows she’s cute! 😉

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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.”

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I think I’m gonna like it here!
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Bed head!

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Until next time…

Laura

 

 

 

Use Your Words…

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

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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!

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After a few frustrating days of her being sick, and us not really knowing what was wrong-she was finally feeling some better!

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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.) 🙂

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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.

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Apologies are hard to come by sometimes, but he knows his words matter.

 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?

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It’s very rare to have all five of us in the same picture!
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Pretty a”Dory”ble!

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 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.

First debate
First debate

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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.

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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.

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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.

Trying out her new gait trainer for the first time!
Trying out her new gait trainer for the first time!

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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.

 

 

 

 

 

 

FOUR!!!

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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!

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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 ?!)

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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.

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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!)

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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!”

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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

This Little Light of Mine

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Lindsay got to go to her first movie: Finding Dory! We loved the message so much, that her birthday in a few weeks will be all about it!

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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.

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Matthew 5:16 “Let your light shine before others, that they may see your good deeds and glorify your Father in heaven.”
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Okay, mom-you can go ahead and leave!!

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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.

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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.

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Practicing in the gait trainer at therapy.
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Swinging on all fours!

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!

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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.

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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.

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Playing with her cousin’s bear!

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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?

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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

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I had no idea…

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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.

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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! 😉

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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.

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It’s all about how you look at things!

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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.

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We go to the dr. to eat the roll of paper.

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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.

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Until next time…

Laura