Avery Grace

Avery Grace

Monday, February 11, 2013

Matters of the heart

For years I have been saying it.  Feeling it.  Aching at the knowledge.  It is different for my husband. Admittedly, he knows very little about the world of Autism and related disabilities.  He can take a diagnosis, grieve, and move forward.  But for the life of me, I just KNEW that Avery's list of diagnoses' just didn't explain it all.  I hoped I was wrong, and that time would prove that I was, but as time marches on, I am even more certain.  Certain that what Avery has is more than severe Autism.  Her motor skills wouldn't continue to spiral downward, the H O U R S a day and tens of thousands of dollars spent on a variety of therapies in addition to medications and biomedical interventions would have made a remarkable difference if this was what we thought it was.  But I am pretty certain now that it isn't.  Though I am not exactly certain WHAT Avery has, one strong possibility is Rett Syndrome.  Yep, I said it.  Rett Syndrome.  It actually is a part of the autism spectrum.  It is on the severe end of the spectrum, and includes regression in all of the area's Avery has experienced.  Motor skills, hand use, language, social/emotional, cognitive.  All of which makes my sweet girl, at almost seven years old, less capable in every developmental way than she was at 12 months old.  That's right, twelve month old babies have several skills that my precious girl had.... and one by one, has lost. 

So moving forward, what to do now?  What is her prognosis?  Well, before I jump ahead of myself, we have to have some sort of diagnosis I suppose.  We are taking Avery to one of the best Rett centers in the Country for evaluation and medical care.  She and I will trek to Houston in a few weeks for our first of many appointments at The Blue Bird Circle Rett Center where Avery will be seen by a team of doctors who specialize in treating girls with similar symptoms.  If you want to know more about Rett Syndrome you can read about it at http://www.webmd.com/brain/autism/rett-syndrome

Emotionally speaking, I am not sure what difference a diagnosis makes.  Over and over again we have had to cope and come to grips with the reality of Avery's disabilities.  Our definition of hope has evolved over time, and we are gradually easing in to the idea that Avery may never speak, and will  always need 24/7 care to meet her needs and keep her safe. Thankfully, we have an abundance of gratitude for our many blessings, and can always snap out of our sadness to remember how beautiful and unique each of our children are, disability or not.  That's not to say that several times a day I don't hold my breath for a moment and worry about what the future holds, but I am constantly reminded of what really matters.  Love matters.  Compassion matters.  Empathy matters.  Forgiveness matters.  Grace matters.  Joy matters.  And even Hope matters.

 I'm far from perfect.  I have lots of work to do as a wife, mother, friend, and citizen.  But I'm not giving up.  Not on me, and never on my lovely daughters.  Though in many ways I am a realist, that doesn't mean I won't stop searching for ways to make my daughters life have meaning.  Words or not, Avery's voice will be heard, and I just know that deep inside, one day, she will have an exquisite story to share. 


Anonymous said...

I did not know if you had been able to connect with any other Rett Syndrome mommies yet or not. (or if you were even wanting to yet!) But I wanted to let you know that my daughter Brooklyn is seven and has Rett Syndrome www.gp2c.org/brooklyn If I can help in anyway please let me know!

Tarah Miller said...

My name is Tarah and I have 3 little girls just like you! Tessa 2, Lilah 3, and my oldest Julia will be 7 in just a few days! Julia has Rett Syndrome and was diagnosed around 18 months. Like Kelly my daughter has a page on on Girl Power 2 Cure. If you would like to read more about her check it out. www.girlpower2cure.org/julia

Amber said...

Hi Jenny,

I wanted to say hi as well. My name is Amber and my daughter is Catherine. She is 2 and has Rett Syndrome. We live in Austin but our family is in Dallas. Catherine has a girl power page here http://girls.girlpower2cure.org/catherine and we're also involved with the International Rett Syndrome Foundation. Please get in touch if you'd like to talk. My sister and her family are in Frisco now and we are up in the are a lot.

Jenny Beeson said...

Thank you all for reaching out to us! I am excited to have some answers soon, and think at the very least, Avery will end up with a variant, or atypical rett syndrome diagnosis. I am excited about the girlpower2cure site and am busy researching all I can! Thanks again new friends!