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

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