It’s been a weird month in regards to Corrigan’s stability and it doesn’t feel like we are close to coming out of the other side of the situation yet either. We have been down to Baltimore twice in the last 30 days and both trips produced concerning labs. His liver numbers are not good, and have been elevated for more than a year now and after communicating with another doctor in Texas have made some changes to try and push those numbers back in the right direction.
His ammonia labs have been terrible, but he was not presenting in any way as hyperammonemic and was observed by his metabolic doctor, so the labs were assumed to be incorrect (plasma ammonia labs are finnicky). We repeated some of his labs locally last week, at an outpatient facility, in hopes of saving us travel expenses back down state again, but they took more than five days to report an ammonia of 111 (dangerous!), and actually they didn’t even report it after that many days, I had to call them and find out myself. We quickly took him to the ER for confirmation of those outpatient labs, only to learn that his ammonia was beautiful and we had nothing to worry about.
His team does not believe that his elevated ammonias were as high as the lab returned, however when his 24 hour labs came back, they saw some other elevations that could mean that while those ammonia results were not likely as high as reported, the levels were probably a “little” high for Corrigan. Some adjustments were made, protein lowered a smidge, calories increased, more fluids and careful observation kept him out of the hospital but increased my anxiety because we were working with these “unknown” levels due to the fact that the hospital labs downstate just can’t seem to get it right. It is so frustrating. For everyone, really.
The last week or so though, Corrigan has been struggling with his temper again and his echolalia has increased dramatically. He has seemed a little more agitated than usual, has slipped back into a more insulated-type play and is barely eating by mouth again. Mark and I believe that at least one of those elevated labs might have been correct after all and his brain took a “hit” in the last month. It takes time to shake off the effects of even a slightly elevated ammonia and while I have confirmation from our local hospital (the only place I trust, btw) that his ammonia is now under control, I can’t help but think that people were not proactive enough when things looked bad on paper.
On top of that medical stuff, Corrigan’s school testing came back and the only word I can use to describe the results is dismal. Especially his speech levels, which came back in the 1 year 11 month range. His IEP meeting was good and the school team is ready to tackle the things needed to help Corrigan next year, but all of this stuff has combined to really knock me on my butt emotionally.
Now I know this rare disease life is not about me, not in the grand scheme of things, but I am Corrigan’s mom and nurse and the primary adult in his life. When I am in an emotionally bad place, it is not good for Corrigan, no matter how hard I try to mask it. And honestly, I haven’t been dong a great job of masking it. I’ve been snappy and wound tighter than the strings on my violin. Corrigan’s repeated phrases, screamed at me from the back seat of the car yesterday had my hands shaking as I turned up the radio a bit to drown it all out.
I feel like I have let him down somehow in these past weeks. That I should have done more to make sure he was stable. Maybe I should have ignored the suggestion to wait it out at home and taken him to the hospital sooner. He seemed okay though and that is why this damn disease sucks so much. The danger is so invisible and the symptoms can change from one event to another.
I was in the store yesterday morning and my mood was foul. The day before was Corrigan’s birthday and he was stressed and uncommunicative most of the day. He didn’t seem to find his usual joy in his birthday cake, or the singing, and was extra weepy in the evening. The only gift he enjoyed was the bubble toy that Grandma brought over and I found myself irritated that he was perseverating on the bubbles, manically swiping them and repeating the same squeals and words for easily an hour, crushed a bit by the fact that Corrigan was not all that different this year, at his 5th birthday party, than he was last year at his 4th.
Across the aisle, while looking around the store and waiting for PreK pickup time to arrive, I heard what sounded like a young man loudly describing something to his companion. He was extra loud and it only took a few seconds to realize that he was developmentally delayed. In the past, because I am so curious as to what Corrigan might be like as a developmentally delayed adult, I would actively seek out the chance to observe, but yesterday my heart couldn’t take it. I moved quickly to another part of the store.
He followed me though, obviously not on purpose, but as they moved around the store, it felt as if they were. I did look up a few times, and noticed his frazzled companion. He didn’t call her “mom” but I assume she might have been. She was older than me, likely early 50’s, and she looked exhausted. As the young man talked and talked (and he spoke quite well, I might add!) her shoulders got lower and lower. Her body language shouted, “Please, can I just shop in silence for once?” and as much as I wanted to run over and give her a hug, I wanted to flee just as badly.
So I left.
Last night, after another rough evening with Corrigan, Mark and I were assessing the day. I confessed to my incredibly fatalist thoughts, and cried a little telling him about the young man and his mother. How was I going to do this twenty years from now? Thirty? Forty?
It was a “woe is me” moment that I am not proud of. This surely isn’t the life I envisioned in my twenties, and I am not just talking about rare disease either. These have been difficult years aside from the medical stuff and I have pretty much swallowed my emotions down with copious amounts of french fries and sweet tea. The other day I straight up asked my Mother in Law how to not be so sad anymore and she told me to pray.
Oh, I’ve prayed. and prayed. and prayed. and prayed.
I’m still toxic though.
This morning I needed to drop off some donated clothes at the thrift store and decided to look around for a few minutes before it was time to get Cor. My head down, scanning a rack of shirts, I was stunned to hear the same voice I heard yesterday. That same young man, only this time with a bright and happy woman he called “Mary”, walked right past me to the back of the store.
What are the odds?
My mood was much better today, having vowed to count my blessings and knock off this weak, beleaguered crap, and I sent Mark a text that I felt like God was telling me something. I mean, I live in a small town, but not so small that I should run into that same man twice in a year, let alone twice in two days.
I walked back to where he was shopping and he was delightedly talking about a small figurine of the Eiffel Tower. His companion was listening carefully, she answered him with a normal tone- not one of those fake tones people use with the disabled, and he seemed far less excitable today than yesterday.
He came over to me at one point and asked me what he thought the figurine was for. “Do you think it is a paperweight?” he asked me. We talked a bit about paperweights, and a neat speckled egg he had found. He told me about a board game he saw in the front of the store, and how it made him so mad that people would donate a game that had missing pieces ( I hear ya, dude!) and he was delightful.
I think his companion had everything to do with his demeanor today. She was bright, happy and interactive, whereas yesterday the woman with him was tired, and looked beaten down. He was far more excitable yesterday, and far more loud in his communication, perhaps he wasn’t getting the feedback he was receiving this morning and that helps him? I don’t know. I have no idea why I was meant to see him two days in a row, but I don’t think it was simply a coincidence either. I do know that I want to be more like the woman he was with this morning- bright and interactive, rather than exhausted and sad.
I have so much more time left on this planet (I hope!) and I don’t want to spend it cycling through these weird moods that come and go, sapping my energy and stealing the fight that I need for my boy, you know? I need to be happy and healthy so that I can live another 40+ years for Corrigan and also for myself. This might not be the life I planned for, but it is the one that I have, and I need to get a grip. Pronto.
So what is the answer? Counseling? I am the worst at talking to strangers anymore, let alone about all of my feeeeelingggs. Plus, I cry like an idiot when I talk about things like that. Medication? This is a touchy topic in my house. Maybe I need a vitamin. Exercise? The thought of exercise makes me mean, but the thought of a heart attack, or diabetes, doesn’t make me happy either. Will it help my mood? Respite care? We don’t qualify. I’ve tried. Plus, I am scared. A stranger in my house? With my child that cannot speak or defend himself? Tube feeding? Life saving medicine administered precisely on time? Maybe I just need to win the lotto. Gotta play to win. Church? I need to find my place again. Corrigan makes church so hard though, and while Mark and I take Connor and switch out Sunday’s so that one can stay behind with Corrigan, I just want to do things as a family. I am so tired of getting us all ready, and then end up sitting in the car all Sunday morning because Corrigan has lost his mind over a crayon hitting the church classroom floor.
I imagine all of the above is the correct answer, I need someone with more experience with this stuff to advise.
(ETA: as soon as I hit “publish” THIS post popped up in my feed. Epic timing, I’d say. God’s timing always is…and this prayer, so good.)
Dear Lord, we just ask today that you would go before us. I pray for every weary parent. I pray that you will be our strength. Lord, life can be hard, but you are so good. You know our needs before we ask. You love us and our children. You want the best for us. Because you are sovereign, we know that everything that touches our lives must first pass through your hands. You don’t cause the hurt and the pain and the suffering, but you are there helping us through it. You are there taking what the enemy meant for harm and using it for our good. You are there giving us your super-natural strength and manifesting your power in our weakness. We give you our cares and worries and burdens. We give you our “to do list.” We give you our fatigue. We give you everything in this day and we ask that you go before us, Lord. Please, make the rough roads smooth. Please, make a way where there seems to be no way. Be our source of strength, energy and love today. Shine through us Lord and be our light in the darkness. Help us find the joy in the day and may we have thankful hearts for all the blessings we do have. In the name of Jesus we pray. Amen