WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, June 19, 2013

Unique or Disease?

Do we call it a disease or simply a mutation?

A disease needs treatment, medications and Drs.

A mutation is just "different." to us it means we need to do things differently,this doesn't necessarily mean "sick."

Unique. Delicate. Different. An Orchid.


These thoughts bounce around in my head frequently for the last couple years. Admittedly I often wonder if it is our family that is is in denial(I have never denied we are eccentric!) or if perhaps doing things so differently has been part of why she has done so well.

Often I see the recommendations from other Drs. for Mito patients to do all the medical interventions to help the kids lead "normal" lives-tubes to make it easier to grow and be "normal." Immune therapy to be able to go to school and not get "as" sick.so they can be more normal. Medications to trick their bodies to do more..I have heard more then once that it is important for the family of the Mito patient to maintain "normal"- but I cannot grasp medical interventions as normal to us,to our family they imply sick. Abby is "unique" not sick. She gets sick often, but she isn't "sick."
My question is- they aren't normal genetically, we cannot change their genetics, so how in the world will treatments, tubes, interventions push them toward normal? Will thousands of Dr. trips, tubes,chairs, wheelchair vans, bi-pap,meds, liquid foods make life more normal for them or the rest of the family? No. Not for us, and this is okay I have decided.

At the end of the day, are they really better off then Abby with all the medical interventions? I think SOME(not all, some do seem to "outgrow" with interventions) will end up at the same place no matter what is done. Their bodies won't be tricked for long and no matter the interventions, their genetics will win.

Life saving I understand. "Medical Intervention" for the sake of trying to compensate to be "normal" I cannot grasp. Though we do provide "life interventions" for Abby so she can stay her optimal "unique".. each life intervention leads to another.. just like for others each medical intervention leads to another.. it doesn't matter which you do, it is all about what makes you and your's feel "normal/unique".


Abby and I think she is normal- normal for her. She has a very unique body that needs a unique way of life. When we eliminate all physical stress from her world, her body rewards us with great though unique function. When we eliminate exposure to chemicals, allergens, her body rewards us with it's "normal.". When I wash her hair, cut her nails, cook her meals, clean her room,to save her from doing it, her body says thank you and rewards us with her "normal." When we keep her safe against bacteria and virus's the outside world is crawling with, when we keep her away from hospitals and the exposures to germs they promise, she gets to be her kind of normal. Not sure many would agree our family is "normal" but normal for us is to be happy and healthy- and we strive for that type of "normal" above all else. For others, it is the medical interventions which allow them to feel more "normal"- that is good for them where it isn't good for us or Abby.

Yet,I admit we note the reduced muscle mass because her unique gene's don't like to move.. We note the ever growing list of "unique" new things occurring.. but, ya know, even with all the medical interventions in the world, many with Mito continue to show new symptoms.. it seems one intervention leads to the next whether you treat them as "unique" or diseased. Different methods, same outcome.

My husband's little sister is deaf. Right around the time she hit elementary school chochlear implants to give children their hearing back were introduced. I(17 years old at the time)thought it was a Miracle and was shocked when many in the deaf community thought they were awful.. For many in the deaf community, they are not broken or sick, they are normal, just a little different, they are unique. They have found acceptance and lives full of rich fulfillment. They were not broken or diseased and found the implants repugnant. They don't need "hearing" to lead healthy and happy lives. They are unique and fulfilled.

Of course being deaf is very different then Mitochondrial disease. Being deaf won't morph into the rest of your body failing like Mitochondrial disease does.. If there was a pill or medical treatment that guaranteed Abby would get no worse or she might be able to be more "normal" so she could be a Dr, or run marathon's, or a lawyer, or finish college,if she wanted to, I would would give my life for that pill or treatment- but there isn't. Right now "it is what it is" no matter which methods work for you and your Mito family.


Maybe because of that experience or maybe because we are just different, I don't see Abby's issue as a disease. She is different. She is unique. That is perfectly okay with us.

When she doesn't feel well it isn't the Mito, it is the same thing in my mind as aches and pain to the elderly or having a cold, or a flu- it is normal for Abby. Her normal is just different then the majority. Just like her IQ score put's her in the top 1 percent, her body is in the 1 percent of "different." Not sick.

There may come a time(we have had a few already) when our problem solving won't do enough to keep Abby at her normal level of unique, where she might need medical interventions to stay alive..or stay her special baseline of "unique." I love that she likes who she is and she accepts her body is special, unique.. she could do without the pain and the flares.. but she has found a way to work with her body rather then fight it. I love her just the way she is.. As a family we are full of compromise, the needs of her body have made how we live very different then what the mainstream stream accepts as "normal" but who wants to be normal?

For the last couple years I have really felt so different then many parents in the Mito World.. It was like looking at a completely different world. It was like waking up in a village in China one day and not knowing the language,food, culture..


I keep fighting thinking that there is something so very wrong with me that I find all the medical interventions repugnant. I keep fighting hoping it isn't her "unique" body making her have to fight all these new issues-but some unknown disease that is curable-

Maybe it is time for me to accept that after 18 years that it is okay for us to accept we might never know. That there is nothing wrong with me for feeling bewildered about choosing our way of life over the medical intervention path. To accept this is just Abby. Incredibly unique, delicate. She is our orchid and that may never change. No medical intervention or lack of medical intervention is going to change the outcome, it will only change the scenery. There is nothing wrong with the other families or mine. We just feel happier and healthier on very different routes.

Fact is, we like our route. It is okay for us to take a different route even if it isn't the popular route.

I don't deny the "unique" part of Abby. 18 years of inventing a new way of living and bucking what's normal makes that painfully clear. What I may need to finally accept is there isn't a disease other then the mito that is curable.. or if there is another unknown disease making her "uniqueness" harder on her less then normal body, there isn't a Dr. in the World capable or willing to find it right now.

It is okay for me to breath. It is okay for us to put another chapter to bed. Who know's as her body continues to throw new unique issues at her, maybe it will show up eventually there is something a Dr. can fix. Today though, she is simply unique and it is okay to accept and rejoice in what a wonderfully unique and special life we have with Abby.

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