Avery Grace

Avery Grace

Thursday, January 8, 2009

Not our finest hour

Usually I can sit down and just write. Write from my soul, letting my feelings and emotions take flight. Tonight I sit here, tired, sad, a bit angry and empty, and I am not sure what to say. If you read back a few blog entries, you will see that it seems as though our perspective and outlook has brightened. Though the diagnosis, and lets face it, the progress, have been less than marginal, we march on. We march with hope. We march with optimism. We march with acceptance, and a hint of fear and despair. This week has been a trying one. Letting that fear and despair eek in and color our happiness a bit dimmer.

It started with masto mania. Avery had a HUGE reaction to something... I think an antibiotic she was on for yet another round of tonsillitis. She has hives head to toe, and is suffering from the inside out as her mast cells in her GI track, brain, and skin have gone haywire. From vomiting to refusing to eat, our poor toddler who can't tell us what hurts has been in agony. It's enough to make a mother go crazy. So I went into research overdrive, and stormed into the doctor with a list of pharmaceutical treatments to try to get her Mastocytosis in check. You see, when your kid has a rare disease that NO ONE in your big city is an expert in, you have to talk with doctors around the country, research your tail off, and become an expert yourself. I know her body/immune system is attacking itself. I know that, by definition, autoimmune diseases create inflammation in your brain. I know Avery's Autism is a result of this inflammation, and I am terrified that when we have an attack like this, our outlook is grim.

Thankfully, our pediatrician listens to me. Over two hundred dollars later, we now have all four prescriptions to fight the Masto. We start the fourth one tomorrow. Keep your fingers crossed for us.

On another note, today was a work day for me. Most of the time I look forward to the short escape from my own crisis, and today was no exception. I see six precious and fun kids, all right around the same age as Avery, and all but one fall somewhere on the Autism spectrum. The one who is likely not on the autism spectrum has mostly sensory needs and all six of them are making fantastic progress. It truly makes me happy and proud. I love sharing their victories and seeing their parents light up at the smallest of feats. In many ways I feel as if I was born to do this... but on the rare day like today, my heart hurts a bit and though I feel tremendous success as a therapist, I can't help but feel like a bit of a failure as a mom.

Two of my visits today were at different preschools/daycares. The mother of one child I see requested I attend her child's dance class to help with transitions, following directions etc etc.
9 darling girls, all exactly the same age as my sweet Avery, dancing about, tumbling on command, doing short obstacle courses and sitting patiently in their chairs to await instruction. Even the child I see did great. She was able to move from each activity, smile, sing along to the music and giggle with her peers. I felt like dying. Even as I write this I can't help but want to bury my head in a pillow and cry. ALL of the children I see are verbal or are becoming quite verbal. ALL of them more advanced than my child. I am happy for them. I am just sad for us. Yesterday at a little birthday gathering for a friend, Avery was clearly the outcast. Thankfully, she doesn't have a clue, but I do. I see that the kids are starting to notice her being different, and are starting to shy away from her. It is a glimpse into her future, and I hate it. Like I said... not our finest hour.

So at this moment, I REALLY have to work hard to be grateful. To remind myself to not be so selfish, to take things day by day, even moment to moment, and realize that in the big scheme of things, this is just a bad day. Avery is a gift. She is the greatest teacher I have ever had, and I am blessed by every moment she is with me. I just want more for her. Mostly, I want good health for her. Something we all take for granted.


Meri said...

I am so sorry that Avery is suffering and that you and Bryan are suffering along with her. You guys are amazing. Hang in there and let me know if I can do anything. We will be praying for you all and that the medicine works.

Anonymous said...

I have tears for your trials but hope and joy in that tommorrow is a new day; hopefully one without hives! Love to all of you! Nikki

Meg said...

I hope that the hives are gone and that she is feeling better. Avery truly is a gift and she has already taught me so much too. I am hopeful that she will get better and continue to make progress. Remind me to talk to you about her tonsils.