When I decided to share our/Lindsay’s story so publicly, I had to contemplate whether or not I was ready to commit to being so vulnerable- especially to (some) complete strangers. After thinking and praying about it for awhile, I felt that if sharing my thoughts and feelings about what we deal with on a daily basis might help even one person become aware of what a lot of families of children with special needs endure, then sharing would be worth it. It is much easier for me to write than to express my feelings aloud. And, let’s be honest; this is often my therapy.
A few weeks ago I decided I was finally ready to do a little research on Pitt Hopkins Syndrome, which is the “fancy” name for Lindsay’s condition. If you have been following since the beginning of this blog, you may remember that I mentioned only being able to handle so much information once we had a diagnosis. The way I looked at it, the geneticist telling me the basics of Lindsay possibly not being able to walk, talk, or live independently was ENOUGH. I’m sure partly because I wanted to protect myself from even more hurt, I just could not read anymore information for nearly a year. Ironically, the day I finally joined a few parent support groups on Facebook and read more about the syndrome, I learned that the very next day was Pitt Hopkins Awareness Day. Some of you may have seen one or two of the videos I shared that explained a bit more about how rare Lindsay’s syndrome is. When I showed my boys that around only 500 people in the world have Pitt Hopkins, Carter’s first reaction was, “Wow, Lindsay sure is LUCKY!” Umm…not exactly how I would describe it, but whatever! For me, while it is wonderful to have other parents who get it to learn from and be able to share experiences with, I also have to find a balance with how much time and energy I can devote to doing so. I am slowly learning that you have to do what works for you, and that no two people handle things identically. (That’s not just true of dealing with lifelong “syndromes,” but most anything !)
Now, I have entitled this entry “Keepin’ It Real,” for a reason. While we have sort of settled into and accepted a life that is much different than we pictured, I don’t want anyone to assume every day is just wonderful. I think Chip and I, and our family members, all take turns having bad days. I have days where I don’t want to have to think about where I should park the car in order to be able to easily put Lindsay in a shopping cart. There are days when I wish therapies, special chairs, adaptive toys, etc., weren’t necessary. I wish I didn’t have to avoid going certain places because I know there is nothing Lindsay can do there. I have a lot of days that I just want to have a conversation with my girl. I want to hear those cute little words that preschoolers say, like when my boys used to say, “lellow” instead of “yellow.” Some days , I just want to be a “regular” mom, not the mom that people “pity” or “admire” because I’m supposedly so “strong.” I so want to wake up from one of the dreams I have of Lindsay walking and talking, and I want them to be REAL.
I can still vividly remember part of a prayer that my friend prayed when Chip and I got married fourteen years ago. He said, “You will give them trials, Lord, to refine them…”. (Thanks, David!! ;-)) I also remember secretly thinking, “About those trials, Lord, it’s totally okay if you don’t give us any!” Ha! Wasn’t that cute? The truth is, though, if everything always goes well, how would we ever know how dependent we are upon Him? When things are going well, we start to get a false sense that we have it all together. We become focused on us, rather than Him. It is when we are presented with challenges that we have the choice to cling to Him, or turn away from
We go through days of feeling as if we have somehow “failed.” Failed at having the “typical” family. Failed at giving our families a healthy little girl. After all, she is the only granddaughter on both sides. Then there are the feelings of guilt that creep in, for ever feeling that way at all. Though we know nothing we did or didn’t do “caused” what Lindsay has, I’d be lying to say we don’t let that nagging little devil sneak up on us sometimes. That’s the thing about feelings, though, they can be tricky. If we let how we feel determine how we act, we could be setting ourselves up for disaster. I love what Lysa Terkeurst says about feelings: “Feelings are indicators, not dictators. They can indicate where your heart is in the moment, but that doesn’t mean they have the right to boss you around.” I think that is so true in many instances. Even when my boys are having one of their little disagreements, they will often immediately react strictly out of anger, fear, frustration, or maybe even jealousy. I would imagine we as adults do that on occasion, as well. 😉
I just know that I want to do better. I want my feelings to get out of the way sometimes. I don’t want how I feel to determine how I act a lot of times. I want to treat people-all people– well. Not just the people that believe the same things that I do. I want to be like the little boy at a bouncy place we went to the other day. He was just a toddler, but he noticed that Lindsay was just sitting there inside the bounce house by herself, chewing on her necklace. While other kids were running around, jumping, and just being kids, he squatted down and looked in her eyes. He noticed her. He didn’t say anything, but he just sat right down and tried to engage her. How different would our world be if we all did that? Rather than bashing someone because they believe differently than you do, or ignoring them because they look different, maybe just have a conversation. Rather than hiding behind the screen on social media and berating people who have different opinions spiritually or politically, what if we respectfully listened to and learned from one another? (Okay, so maybe I got off a little on my “soapbox,” but remember the title?!!)
On the days where I desperately want to feel sorry for myself- feel sorry for Lindsay, I want to do what Romans 12:9 says and “Cling to what is good.” We are so incredibly blessed to have these three children, when there were plenty of times we thought one might not even be possible. I truly do stay entertained every single day! How can I not, when I am reading at bedtime and look down to see Carter completely decked out in his astronaut costume, helmet and all? If anyone could/should feel sorry for herself, it would be my girl. She’s too busy clapping for herself and learning to stand little by little. And, I’m busy oversharing pictures and videos of her doing it! (I should probably share less of my kiddos, but they are what give me such joy! I can’t help it!) I don’t want to spend my life worrying about the future and focusing on what I don’t have or what doesn’t seem fair. I want to soak up every single moment, because that is truly all we’ve got.
Because I am human, I’m certain that I will experience many more days where I just don’t even want to know the word “disabilities.” But on those days, my prayer is that I will remember everything that I do
have. I hope that I “cling to what is good,” and I hope to teach all three of my children to do so as well. Even though this is not the position I would have ever chosen for myself, God chose me for a purpose. Whether I understand it or not, I will do my best to fulfill that purpose.
So, like my mother has always said, “If you don’t want to know what Laura thinks, don’t ask her!” Sometimes, I might just tell you anyway! (I just like to look at it as being transparent!) Seriously, though, thank you for being my virtual “therapists!” Thank you for “listening,” even when I don’t make much sense. And, thank you for indulging me as I continue to overshare my kiddos! 🙂
Until next time…
“This is the day the LORD has made; let us rejoice and be glad in it.” (Psalm 118:24)