Wednesday, September 21, 2011

Mitochondrial Disease Awareness Week: how mito affects our family


"Mom, I think I want one of my kids to have mito when I grow up." It was a statement from my oldest that shocked me as she so leisurely brought up the subject on the way to soccer practice.

"Really? Why is that, honey?"

"Well, because I already know how to take care of kids with mito, and I will love them no matter what is wrong with them. I just think I'll be a good mother to a mito kid." was her sincere reply.
What do you say to that?

Our girls are different than their peers in a lot of ways. In their few short years on this earth, they have carried so much burden that is in direct relation to the life of their brother. We try to maintain as much of a normal family life as we can, but there is so much of their life that is not normal. I can't count how many times the two of them have been shuttled between local friends, church members and family through the many doctor visits and hospital stays Nate has had. There have been many times when a dear friend has had to pick them up from school and take them to their house without me even being able to give the girls' a "head's up" about the change of plans.
They say that kids are resilient. Well, I think that my girls received an extra dose of resilience in their lives, as they have never once complained about the circumstances of their life.

Mitochondrial disease changes the family.
Emma has recently shown an interest in learning how to take care of Nathan. She says to me that "someone needs to know how to take care of him in case you die." Her mental filter hasn't quite developed yet, and she obviously says most that comes to her mind. But I love that she is interested in knowing all the ins and outs of his care. She knows how to give him meds and set up his feed, turn on the pump, and plug his feeding port into his g-tube. She knows that he is on 2L of oxygen and understands which way he likes the cannula to fit on his face. She's 5.

Mitochondrial disease changes the family.
Both of the girls can give a quick lesson that highlights the aspects of this disease. Not only can they pronounce the long name, but they understand about the primary role our mitochondria play in our cells. And from talking to other moms, their friends can give a good lesson on mito as well...which makes me proud of my girls for spreading awareness about this disease behind the scenes. Its a part of their lives, and they are not afraid to talk about it.

Mitochondrial disease changes the family.
"Hun, I know that you would be an excellent mother to a child with mito, but I pray that you never have to be in that role" was my response in the conversation on the way to soccer practice. With as much burden that is already on their tiny shoulders, I am so thankful that they don't comprehend the enormity of stress and heartbreak that their father and I endure on a regular basis by raising a child with mito. Its a role that has strengthened us and taught us exponentially in our daily life, but it is also a life that I would never wish upon anyone.I am thankful that she doesn't quite understand the severity of her brother's disease yet. She's too young to be burdened with our fears of the future.

Having a brother with mito has created a compassion in both of the girls that has been incredible to witness. Yes, mitochondrial disease does indeed change the entire family.


2 comments:

Kyla on September 21, 2011 at 9:17 PM said...

Although KayTar is undiagnosed and we have nothing to call whatever it is that is plaguing her little body, BubTar is VERY much like your girls. He's been doing her tube feeds and helping with meds for as many years as she's had it...which means he was about KayTar's current age when he started helping. She's always seen a slew of doctors and therapists, she's always been different in those ways. Sometimes he asks what is going on with her or WHY it is the way it is, and the best we can say is "Her body just doesn't work like everyone else's." He's about as satisfied with at answer as we are...which isn't very much!

Christine on September 21, 2011 at 11:01 PM said...

You are raising an amazing family Amber. I can not even begin to imagaine all the changes that Mito has brought to you all. You guys are always in our prayers. Much Love.

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