This has been on my mind alot lately...

Maybe it's the influx of comments lately, the huge amount of family support we have recieved, the long stretch of 'healthy' Brandon has enjoyed (which is equally awesome and difficult - awesome for obvious reasons, difficult because with mito it is always temporary, and we are always waiting anxiously for that rhinocerous around the corner...


also difficult because it gives us a tiny peek into how 'the rest of you' live, and how hugely different our lives will always be)...

I'm often faced with a variety of comments parents in our position are faced wtih - 'how do you do it?', 'you're so strong!', and the like. While well meaning if I can impress upon folks not living this life one thing, let it be that you should NEVER ask a mother in my position how they do it, or comment on their strength. Just don't.

In the end it's because we're not strong, and truthfully we dont know how we do it. Like every other parent out there, we're just flying by the seat of our pants, trying to have some fun, and hoping we dont skrew up too badly.

A dear friend and I talked recently about our boys who both have their challenges, both genetic, both incurable, and both with very uncertain and scary futures.

We shared a similar sentiment when faced with the idea of 'fixing' our children, one I have talked to many other mothers of children with genetic disorders about, and it turns out it's not uncommon.

While I would love nothing more than to see Brandon 'cured', I recognize that is not going to happen. We are not going to cure mito... that would be like saying we're going to cure blond hair, or we're going to cure the fact that we have a pancreas. Mito is not just a virus or cancerous growth needing to be fixed or removed...

Mito IS Brandon.

Every cell, every organ, every ounce of his entire body is genetically programmed to have mito.

To get rid of the mito, would literally mean to get rid of Brandon.

I absolutely have hope that we will find treatments, and medications to improve the quality of his life... that we will find ways to restore the organs that have suffered damage, and that we will be able to prolong and enhance his life...

But how can I hope for a cure? How can I hope to completely, fundamentally change my child at the absolute most basic biological level? That is what a true 'cure' would be... fundamental genetic reprogramming...



Like it or not... if we want Brandon, mito is part of the package... To get rid of the mito would be akin to deciding to 'trade him in' for a new boy, a less broken boy... not something any of us are lining up to do.

Wrapping my head around this concept has gone a very long way to help me accept this path we're on....

It certainly wont stop me from persuing more effective treatments, therapies, medications, and suppliments....



But acknowledging that the mito is a part of Brandon as much as his soft brown hair, dusty blue eyes, and killer smile, sure makes me hate it a little less.... I hate what it does, but I cannot hate something so fundamentally Brandon.



And thus concludes my philisophical ramblings of the day.

1 comments:

  1. well said! sadly true, BUT part of the package we love so much. Sorry to hear about your relapse. Praying your summer treats you all well.
    HUGS and Prayers always-
    Heidi & Jack.

    Heidi

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