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.
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.”
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…