As we come to the end of Mitochondrial Disease Awareness Week, I realize that I have “hit a wall” and that my heart is so very heavy today. I’ll even admit to shedding a few tears, something I am not brought to easily.
The reality is that raising awareness does something more than make others aware of the disease and the costs, emotionally, physically and financially it brings….it forces those of us in the trenches to be even more aware than usual.
Here is the thing….I KNOW my kids have mitochondrial disease. I KNOW what it means and all the statistics and information that exists out there. It’s my job to know. I KNOW too that without more awareness, this slow train we have been on to finding treatments and a cure continues to move too slowly. I get it and I know it, and my “job” this week was to share it with those that don’t know it.
However, in the process, I was plunged into the heart ache of it all….again.
I don’t….really I cannot….live in the heartache all the time. It’s there, always, but I can make it stay in the background. I can make each day the best it can be, and all that jazz. But that’s a whole lot harder to do when you’re trying to bring awareness and in the process, are being made even more aware than usual.
Today was the year anniversary of losing a little boy named Samuel to this disease. We had the privilege of meeting Samuel a couple of times and he was precious. It seems implausible that he is gone, much less for a year now.
Over the course of this last week….and I have no doubts this was part of when the wall started going up that I was doomed to run into…..in the small community of mito families that I have interaction with…..FOUR children have passed away due to this disease. I didn’t know the families, or anything about the kiddo’s, but others that I do know did. It’s difficult to wrap my mind around the statistics that this would lead one to if I took the time to extrapolate it out.
This last year, since Samuel passed, has been a rough one for our little community. Too many children have died from this disease. One is too many.
I went to a seminar with my mom last night in East Texas. It was about how to cope with having a chronically ill child. It was led by a social worker who did a good job of covering the topic, and while there was nothing that I hadn’t already heard, as I told my mom, it was a good reminder of some things. Taking care of myself….asking for help….things I am good at forgetting/ignoring/avoiding. Miss Social Worker picked up on that real quick….and I hadn’t even said much of anything!!! LOL I didn’t say much really….even in the middle of a group of families that have a chronically ill child I don’t fit in. Even a quick introduction leads to wide eyes. I sometimes dream that I find some person that can be a support for our family…someone trained to guide us through….someone to remind me of those things I so easily forget, who at the same time can understand why those things are so impossible sometimes. Kind of have come to the conclusion that person just doesn’t exist, not really, and then remember how blessed I am to have the family and friends that I do. I don’t feel un supported, just wonder sometimes if we are really coping as well as we seem to be, and then chuckle at the idea that anyone could really evaluate that with this family. Exceptional indeed.
I am in the process of purging my house right now, and my goodness it’s been an emotional journey in some ways. Today I ran across some cards that Michael had sent the kids and I during one of our extended trips to Houston for care. He doesn’t send a care package every time, but when our trips are extended beyond a week or so, in his missing us he tends to find little trinkets and cards to send us. It is amazing and makes me love him even more every single time.
So I ran across the cards, opened and read them again, and smiled. It was a good feeling, and then it occurred to me, that as much as I will always cherish those mementoes, it’s just wrong that the kids and I are away so much that a care package is needed.
The social worker talked about the stages of grief last night. Today I wavered between anger and disbelief. I haven’t been “there” for a while. It hurts.
Sometimes, as needed as it is, creating awareness….just hurts.
(Posting this before I change my mind. Its real…..that’s all I can think to say. Tomorrow is a new day)
Thanks to all that have worked so tirelessly, this week and always, to raise awareness of Mitochondrial Disease…..my family thanks you for doing what we cannot always do effectively. Thanks to our friends and family that have joined us this week in raising awareness, in whatever way you could. We love you. And thanks to all for allowing me to get this out….to say it and let it go (I pray).