And then I checked in on a message board that I frequent. For the record, if you deal with a child with special needs and feeding tubes and therapies, meds, ect. these parents have a ton of knowledge and if you are in need of a place to vent, they are awesome!! I don't want to post a general link but if you are interested leave a message and I'll send you the link.
Anyway, I checked out the boards and there was an interesting topic being discussed and I found one post that reflected my own thoughts so well. The discussion was spurred by the "probable" diagnosis of one of my long time internet buddies. I'm just saying that many of us who met on a hypotonia message board are now members of a mito message board. Coincidence, I think not! When we first started talking mito for Asa it was like the rug was being pulled out from under me. Then when I felt that I had gotten a grip, we got the diagnosis and it all started again. I remember getting the call and literally shaking while kneeling beside the bed to take notes. But 18 months later I find it much easier to talk about mito. In fact, Anna says I can talk to anyone about it!
Here are some wise thoughts from a wise fellow mito mom:
Having a name for the monster does indeed help.
You're in for a roller coaster - as much as this ends one chapter of the journey, it also marks the beginning of a whole new one... not more or less terrible/scary... but different. You will now spend the coming months learning how to 'be ok' with the fact that things will get worse, and you will not know exactly 'what' is going to get worse until it does... the uncertainty does not get better, but it does get bearable.
You'll learn how to 'be ok' with discussing this horrible disease... you will reach a place where you can quite plainly explain that your child has this condition, and it will get worse, and there is really nothing that can be done (yet!) to stop it... people will be horrified that you can talk about it without being a total mess... (and I promise - with time, you will be able to talk about it without being a total mess!! it takes time, but you will get there).
you'll learn how to 'be ok' with the fact that your child's life (and yours!) is now going to be vastly different than most... and it's just that - not better, not worse, just very very different... you will find joy in things most people dont notice... you will lose sleep over things most people dont even think about... you will cry (both happy and sad tears) over things most people would never comprehend...
You don't know it yet, but your entire world, and everything you thought was important 'before' has been fundamentally changed. Nothing will ever be the same...
But I promise, with time, patience, and support - you and your family will get to a place where its 'ok'... you may not 'beat' mito, but you absolutely will grow from it, in ways you cant even imagine...
Be kind to yourself... be patient with your spouse - he will likely process all this in a completely different, incompatable way than you, and it will upset you when he muddles through it differently - but its just that - different - no more or less right... allow him to get through it how he needs to, and ask him to allow you to get through it your way... The same goes for all your family...
Be prepared to lose friends. And be prepared to find amazing friends in old 'aquaintences' you never expected. Be prepared to be let down by people you believed would be there no matter what, and be ready to be surprised by the ones you didnt.
Learn how to ask for help - and do it specifically. Come up with a list of things that are difficult when things get bad (laundry, cooking, etc) and ask friends and family to help out in those areas when things are rough... People WANT to help, but they will always come to you and say 'what can i do' and at a crisis point you will not be able to tell them. So tell them ahead of time. Tell them when things are bad you really need someone to come clean the kitchen and throw some laundry in, or deliver a meal or two... help them help you.
These are all the things I wish someone had shared with me when we started this journey - we have had to learn them on the fly instead... we're getting there - but every year brings new challenges, new bombshells, and new lessons... and new joys, and achievements.
It will be 'ok'.
It will never be the same, but it will be 'ok'.
It has to be 'ok'.
I found this to be the same path I took in becoming Ok with Asa's mito and the needs he'll have for the rest of his life. I also try not to look too far into the future. That becomes overwhelming. Maybe some of my OKness is because Asa is doing so well. Maybe I'm in denial about many things. I think that is healthy too though. Heck, if you think about it the chances that any of us will develop some debilitating illness is very likely. Thinking too far in advance about that is depressing too!
But I think by far, my best coping mechanism is my faith and family. We are truly surrounded by so much family that can help out when we need them too. They go to appointments with us. They ask questions and support us. And they brought me up to have the faith that I have!
And faith is definitely how I can be OK with all of this. How can I explain it, I don't know. I just know that there is some greater plan for our family and Asa than him just being sick. I feel I've grown closer to God, while others might grow farther away. I'm not wise enough to know how that happens. I kinda of stopped focusing on it so much. I just trust each day that God has a greater plan that I can't yet see. How it will pan out, I have no idea. Will I someday crumble and not be so trusting? I don't know but I sure hope not!
So if my ability to talk about Asa's special issues is shocking to you, now you know how I can do it. How I can discuss the ways his little body fails him. How I can seemingly accept that he might not live past puberty (although this is an old way of thinking about mito, many kids now live into the teenage years!). Why I don't tear up at the mention of childhood death. I have hope and faith and even a little denial on my side!
And wise Keely blogs about her smart, funny boys here. Thanks for sharing Keely!