Avery Grace

Avery Grace

Monday, May 18, 2009

One thing after another

I am not sure I would want to be my friend anymore. Really. I am annoying myself. The constant drama... the quick transitions from one crisis to another... the stagnant state of sorrow mixed with hope, anxiety and a dash of joy... Truly. I think I would have had enough of me already.

Somehow, someway, we find ourselves continuously surrounded by the loving and generous support of our friends and family. God bless them.

When your child has cancer, or another well known devastating disease... people make you dinners, put you on prayer lists, etc etc. When your child has Autism, people generalize, critique, pity, and fear you a bit. They quickly judge you for fearing toxins, the overuse of antibiotics, vaccines, food additives. They see your child in the store and shake their heads.... thinking what little control you have over your "non-compliant" child.

I find myself wearing my "Hope to heal Autism" shirt more and more. It seems to help explain why we have to have highchairs in restaurants for our three year old. Why we can't let go of her hand when walking. Why she walks funny, can't run, stumbles on curbs, can't use a fork/spoon, sometimes drops things including food on the floor, can't look or talk to people, and laughs at ceiling fans.

With the lovely combination of Autism AND Mastocytosis, Avery has now, and will ALWAYS have many battles she is fighting both inside and outside of her body. Some of our most dear talk about "Avery's Army." Trust me, in my house we are at war, and trying to save her is the most complex and tedious thing we have ever encountered.

A few weeks ago we sent out 4 comprehensive tests of Avery's urine, stool, and blood to determine what is going on inside her little body. We have gotten two tests back, which indicate extremely high levels of fungus (yeast) in her GI system. Yuk. So, now she is on anti-fungal medication, several more natural supplements and is experiencing the pains of "yeast die-off." Several other "levels" were off, and we are heading back to the Dr. to determine our next course of action. No fun. Now she has a fever, and I think I may be getting one too. Double no-fun.

Despite all of this, we find our moments of perspective and peace. We remain so grateful for our lives, and that we have our children here with us. Grateful for our loved ones who stick by us day in and day out.... even when we are one big ball of stress/panic/sadness. Grateful for the chance to learn so much from someone so little, so precious, so unknowing. Grateful for the few who do understand how this continues to devastate us, despite time passing. Grateful for each moment, each look, each smile and each laugh.... even if it is at a ceiling fan.

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