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.
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?
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.
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….
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)