I feel like I have so much to write about our road with this disease and I guess part of me just has to continue to surrender to this all. I'm starting with this post. I feel utterly lost and so uncertain at times when it comes to Mac's diagnosis. I worry about his future. I'm sad because my son will be limited. I don't want him to be limited. HE doesn't want to be limited. It sucks! Yes, I know it could be worse. Please don't be confused by my honesty about my feelings on this (and future) posts, I am very aware and thankful for all of the blessings we have been given.
I have joined several "parents of rare disease" and "parents of kids with neurological disease" and "PMC" type groups on Facebook in hopes of finding support and information. The "parents of…" groups leave me not wanting to share and feeling guilty for my emotions about our diagnosis. They are amazing warrior parents, but some of those parents (and kids) are living a hell far worse than mine and I think what do I have to complain about compared to that! The "PMC" groups are filled with very nice people who are happy to share their experience and knowledge of this rare beast. They have had this their whole lives and tell me over and over how debilitating it can be and when I ask questions related to Mac's worst symptoms that they are "normal" for the disease. I get sympathy because they obviously sense the level of anxiety I'm conveying with my questions… and he's so young to be having such severe symptoms already… and I'm warned that things could get much worse. Please don't get worse!
His good days are great. He's a typical 3 year old boy with very few symptoms that probably only his Daddy and I would pick up on. We LOVE those days! His bad days are terrible. He has ridiculous muscle cramps that cause him obvious pain. They tend to come in clusters so we know when he's had one that another is probably not far behind. The weakness follows. Sometimes it lasts for a few hours and sometimes for days. When is does too much when already weak he cramps easily.
Today he woke up well after some major cramps last night before bed in his full torso and neck. He had his MyGym class scheduled and said he felt like going. I was guarded, but remembered the neurologist telling us not to limit him… so we went. It started out fine and ended terribly. He had obvious trouble by less than halfway through and sat himself out when he physically couldn't even function any more. I carried him because his legs were weak and his hand kept contorting in cramps. His eyes kept wandering because even those muscles were weak. When we got home he didn't have the power to walk up the 3 steps into the door and fell. He tripped walking into the kitchen because his legs were dragging. He asked to go to bed and I carried him up the big flight of stairs because he asked me to. He didn't nap, but played quietly in his bed. Nap time was an easy excuse to lay still and be quiet which is what he needed and we both knew that. I listened over the baby monitor the whole time in case he needed me. This is the reality of our "bad days". On these days I'm thankful that he is still light enough for me to carry easily. What will I do when he isn't? He had been so thrilled to have his own "gym class" to do. Today when we left he said, "I don't want to go back". I'm counting on him changing his mind by next week, but worry that someday he won't change his mind. I worry that someday he will just quit something that he loves because his body has failed him. Again. Please don't ever quit!
When he cramps badly he cries out and I do my best to comfort him and help "rub out" the cramp. When the cramp ends he stops crying and when he isn't looking the tears keep coming, but from my own eyes. My chest and throat gets tight and I feel pain too. My "Monny" heart breaks on these days.
When he has a "bad day" I do too. Today is just one of those days. I'm hopeful for tomorrow.
*****
Sidenote: I contacted the MDA today (in tears) in a desperate attempt to find a local support group of some sort. It turns out that Mac and our family will be eligible for so many things that they offer that I never knew about because they support all neuromuscular diseases. They were shocked that we weren't put in touch with them as soon as we got the diagnosis. This is a kid who turned blue on a nearly daily basis as an infant and we just rolled with it and mentioned it at the next doctor's appointment. The doctors have (mostly) praised our laid back attitude and just said over and over to reach out if we need help. I guess I need to start reaching out more often. I have clearly only seen the tip of the iceberg of navigating the world of having a child with a rare, somedays fully debilitating, disease.
