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, April 4, 2012

Survivor's Guilt...

I have a terrible case of Survivor's guilt.

I need to confess, that I have days when as I read blogs, or think about Mito families who are suffering far more then mine, my heart just breaks. Of course I feel terrible for everyone's children,beyond terrible. My heart breaks because I worry Abby could get worse, or my heart breaks because I don't know how to deal with the survivor's guilt.

It makes me pull away, because when I read articles and stories about Mito children who can still handle a full day of school, or having fun weekend adventures I am soooo jealous. I cannot tell you how many times I have wondered what it would be like to have Abby able to attend College again.. or for us to take off and go camping!(between allergies and fatigue never been with girls)Even at her best play dates were rare and tough on her.. I think it is the the whole "grass is greener then".. because even though some of these kids have tons more energy then Abby, when they get sick they end up in the hospital- they have to take tons of meds each day- they too suffer from all the bad Mito has to offer- just differently then Abby.

There is one little girl who we lovingly nicknamed Abby's mini me! Their symptoms have been very similar. They don't look a like besides both having "doll" faces.. but this little one is in trouble right now.. her disease process despite being so similar to Abby has moved much faster. She is only 4 years old. How much more unfair can life be? Why do we get to be lucky and our Abby does as well as she has? When I was responding to the Mom's email, I found myself holding back and not sharing much of the joy in our life- I caught myself thinking- "don't rub it in.".

Don't get me wrong, I am thrilled that Abby is walking and talking, she hasn't suffered any LD's, she hasn't had to spend any time in the hospital...In a purely comparative mode, Abby has it easy- we have it easy. The gentle fade we have watched slowly over the years is in my mind is easier for us to handle then sudden progression or major life threatening episodes..

Why do I feel so rotten about Abby having a gentler disease process?

There have been quite a few days where I have sat back and wondered if I am even "justified" in writing this blog, because in a lot of ways we don't represent what so many suffer with when it comes to Mito. Then I go back to wondering if this latest diagnosis is wrong again- or maybe not wrong, but not right either?

I shake myself and remember that for every extremely progressive case of Mito, there are just as many " Abby's" who have a more invisible disease. The reason so many like Abby go years and years without a diagnosis is because the only type of Mito anyone including Dr.s are familiar with are the very very progressive forms.. No one should have such limited quality of life and be ignored..

The "invisible forms"" of Mito have their own battles. First, getting a diagnosis. Believe me when I say, that the vast majority of Drs. do not see "extreme fatigue" as a physical concern unless there are other more lab based issues-I know that fatigue by itself is thought to be more of an "emotional" issue.. For years that was Abby's major symptom. There are a lot of patients with Mito who like Abby have gone years and years with "invisible" suffering because even the Drs. cannot see or will not see the fatigue. That is it's own anguish. Trying to explain why a child who looks perfectly healthy misses school, or cannot handle after school ballet, or piano.. or skipping family vacations to opt for a week in Pj's instead.. Sounds kind of benign I know, until you have lived it.

Still, the survivor's guilt sticks with me. I still ask if I have any right to mourn or grieve about what has been taken from Abby, when so many have lost their children, or their children have spent weeks in the hospital, or the million other hideous things that Mito does to our children's bodies.

Yesterday afternoon, Abby's stomach just quit hurting after it has been consistently hurting for months, every day 24/7. Small miracles-I hesitate to celebrate- not until being pain free has last more then a couple hours..I hardly slept last night wondering why it quit hurting- was it the changes we have made? Was it just her crazy body autonomic function just finally settling down? Will it stay pain Free..? Is it mind over matter? Abby's birthday is Friday and she is determined to eat store bought birthday cake with all the evil ingredients in it...is the mind that powerful? Maybe. Odds are this is not the end of the pain but maybe it is the beginning of it going away. I should be celebrating even a few hours of Abby being pain free for the first time in months and months- whether it is a fluke or something we did, this is a HUGE moment of relief for Abby after months of food as the enemy...My blog entry today should have been titled "PAIN FREE EVENING!!!".. but you see, I couldn't do it.. that stinking survivor's guilt got in my way..


Jenna said...

That is so exciting she was pain free for the evening, did it last? Is she in pain again? I am nervous for you guys this weekend, I hope that the store bought cake doesn't hurt her stomach too bad.
I haven't have survivors guilt, I guess I spend so much time in uncertainty land. When I read the horrible blogs of worst case scenario, I just wonder how they got there and wonder if that is what our future holds.
I hope that the survivors guild doesn't last long, even though Abby is not as severe as so many others she still lives in daily pain, her life is very much effected my mito. She has a right to grieve, you have a right to grieve. It is horrible that so much thought has to go into something as simple as a store bought birthday cake. Hopefully mito will not take Abby's life, but it has taken so much, the story needs to be told, the sorrows need to be heard and the joys need to be celebrated. Her life is forever changed.

babyfoodsteps said...

Thank you for your transparency and honesty and even your guilt...
you speak about what is on all our hearts and minds and what we may not verbalize but all have felt.thank you for giving those feelings a voice and validation.

Our prayers for Abby's mini' me and for her birthday!
We are rooting for her stomach to be pain free for a very very long time (Especially after the store bought cake!) ;)

Diane said...

Thanks guys! Fingers crossed eating a bit of birthday cake which so many take for granted doesn't tip the balance, and even if it does, that she still thinks it was worth it this weekend!

This morning-still stomach pain free! I am thinking it is the full elimination of corn,soy,msg,gluten that may be allowing the improvement- but who knows with Abby? After the week of Kefir I am guessing her stomach decided if we would just stop the kefir, it would more willingly behave! :-)

I think about both your families journeys daily- and send lots of strength and courage to both of you!

Just maybe a few nibbles of chemical bathed grocery store cake won't cause a relapse! :-)

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