Avery Grace

Avery Grace

Tuesday, July 21, 2009

Defining Moments

I have been thinking a lot about the moments in my life that have really shaped me as a person. Moments and events surrounding them that have enabled me to become, more or less, who I am today. Some of these moments involved revelations, some extreme sadness or loss, some were brilliant and breathtaking, others less memorable but equally astounding in their impact. There are big ones... wedding, child-birth, graduations, deaths, first days, new jobs etc., and smaller ones... all of them incredibly important in building my character, my humor, my stamina, my heart, my strength and my soul.

Some moments come quick and hard... others build up to an "ah ha" moment, or a moment when you finally "get" it. Whatever "it" is. Learning to appreciate these moments, however devastating or exhilarating they may seem at the time they occur... is a work in progress for me. So, reflecting on these moments is a great way for me to build self-awareness and better perspective.

One particular moment I will share with you I remember vividly... as if it was yesterday. It was actually almost two years ago. Avery was coming up 18 months. Eighteen months is a significant age around here, as she had started her developmental regression and I was in a panic. Knowing what I know... I was well aware of what was happening, but when it happens to you, I can't even begin to describe how heartbreaking it is. Anyway, we had taken her in to a new pediatrician who was intrigued by her mastocytosis, (the very rare autoimmune disease she was diagnosed with as an infant.) She sent us to a lab for blood-work to gather more information. At the time, I wasn't all that concerned, just following orders.

To make a pretty long story short, her blood-work came back with some alarming results that indicated Avery's Mastocytosis was likely systemic, and has probably infiltrated her bone marrow. I had read about this as a possibility, but learning that your beloved child may have mast cell leukemia was a very big "ah ha" moment for me. At that very moment, and for the hours, days, and weeks that followed... I virtually "forgot" about my autism panic. I remember the moment I bargained with God and said "I don't care if she EVER talks, just PLEASE keep her with us. Please help her to be okay." I was rocking Avery at night... I was crying, and I said it out loud over and over and over again. I begged. I meant it. I really did.

So, as most of you who know us well know, she did not have mast cell leukemia. She does have systemic mastocytosis, and will always have major health issues including various cancer possibilities, but for right now, she is doing okay.

That moment in the dark rocking Avery I made a decision. I decided that her life and presence was way more important than meeting milestones. Neurological disorder or not, I wanted her here. I wanted to fight with her, love her, and mostly, be with her as much as possible. I still feel that way. And when I get anxious to hear her words again... I am able to remind myself of that moment. The moment I decided that Autism was the better option. Even though I know it wasn't a choice.

Time marched on and in many aspects, we have come a long way. We have had a few more "defining moments" in our journey, and we all work tirelessly to help Avery heal. But what a gift that moment, as awful and unbelievable as it seemed at the time, has been with regard to our outlook and attitude. The hardest moment of my life has been the best lesson of all.

Wednesday, July 15, 2009


I have had several people ask me lately how Avery is doing. I never quite know how to answer this question. In some ways, she is doing great. For the most part, she is a happy, silly, pretty even tempered child who loves to snuggle, play with her characters, swing, hear her favorite songs, etc. But I am pretty sure this is not what they are asking for.

Most people wonder if she is learning to talk yet. Well, not really. She has had and lost words throughout her toddlerhood, and currently has none. One year ago she was EXCELLENT at puzzles, now she isn't so into them anymore. She has gained and lost pointing skills more times than I can count, and though she understands some language, for the most part, we have to guide her by the hand to help her comply.

HOWEVER... in any given moment in this journey thus far, I can always identify several "strengths" within her. Collectively, looking back, this must have been a stretch at times, but always... I am able to find her hidden talents. Her special gifts. Her simple, yet wonderful positives. Right now, Avery is responding to her name quite a bit. She is pointing at lots of pictures in books, and babbling to us and back to the TV when it asks her "questions." Such as in Dora, at the end of the show it always asks "What was your favorite part?" Avery always answers... we just have no idea what she is saying. Avery can play several games on my iPhone. She has been able to show us yet again that she knows several things... including colors, shapes, numbers and letters. Amazing how technology is allowing us a glimpse at her potential. That silly iPhone is hands down the best investment ever. Bryan and I both have one now, and we are considering getting Avery her own iTouch for Christmas because there are actually several apps that we can download that may help her communicate with us through pictures, choices and so on. Very cool.

So, in the big picture, if you test Avery, or spend just a few minutes with her at a time, you may think she is really severe. Pretty isolated and in her own world. But we know better. Just as she points at every single detail in a magazine or book for us to label, if you get down to it and want to get specific, Avery's little "details" make up for one very special, unique, happy and lovely little girl. So as we continue our journey and she gains and loses skills, comes and goes as far as her connection to people... one thing remains steady...our pure and abundant love for her and all that she is, and even for all that she isn't. So stop and slow down a minute... pay attention to the details. Sometimes brilliance lies within them.

Saturday, July 11, 2009

Catching Up

There is so much to write about that I don't know where to begin. Seriously, I could have posted everyday over the past few weeks and I still wouldn't be able to share everything that I want you all to know. If only I had more time. I think any mom out there can relate to not having enough time. When I finally DO have time, after kids are in bed, pumping is over, face and teeth are clean, it's usually somewhere around the neighborhood of 10pm... and for a gal who only gets a few full nights of sleep a month, getting in to the sac is just about the only thing on my mind. But I digress.

We have just returned home from a whirlwind trip to Atlanta to visit my loving and supportive family. I love the escape from our everyday reality. Avery and Kaylin get to be spoiled rotten by Grammy, Granddad, Aunt Jenna and Uncle David, and Bryan and I get refuge for at least a few hours to go and just be a couple. For a few days anyway, I am able to let go of my anxiety and just relish in the memories I adore making with my kids. We were able to swim, see fireworks, play in a bounce house, go to a park on the river and see lots of ducks, eat great meals at my parent's country club and at their house... and just relax. Bryan and I even went to the movies and watched two more on pay per view.... a record for us since we have had kids! It was fantastic. All of it. Even the the travel part, which wasn't without glitches, was fine. Hard, but manageable.

Luckily, we were only home a day and we got to spend some quality time with more family. My brother Stuart, his wife Darsi and their kids Sydney and Maddox stopped by on their way back from a family vacation in Austin. All four of these individuals are so incredibly special. Bryan and I can't get over how they are able, all of them, to connect to our kids. Especially Avery. Avery is HARD to connect too, yet, somehow, without too much effort, she really loves the four of them. It is evident in her approach to them, how she wants to just "be" around them. In the smile on her face, and in her attempts to "play" with them, or at least near them. It really warms my heart. It is magical for me to see.

Finally, on Friday, I had Kaylin evaluated by some buddies of mine who are still working full time in Early Intervention. Since she broke her arm and was casted for several weeks, I wanted to make sure her wrist was functioning properly, but I also wanted to make sure my "mommy eyes" weren't missing any red flags in her development. By the time Avery was her age, she had started her massive regression... so needless to say I have been a complete wreck about this lately. Thankfully, Kaylin sailed through her assessment, and is actually above age level in every area they tested. We even counted and she was able to say 40 or so words. So, for the moment, I can breath a sigh of relief. I won't completely relax until she is about 2... but for now, I can finally enjoy the pleasures of watching your child do what they are SUPPOSED to do. It's unbelievable, and sometimes, slightly bittersweet. But I am thrilled.

So, at last, I can finish up this post for the day. It has taken 5 different times of me sitting down to get to it, but I can always write more later. I always have more to say. But for the time being, I want to just say thank you. Thanks to all of you who care to read this from time to time. Our journey isn't all that unique, but I hope it provides for some of you some sort of inspiration or perspective. Some sort of glimpse into our souls that hopefully, will move towards more peace, tolerance and acceptance. Life isn't at all what I thought it would be. It's better. In every way, it's better.