Avery Grace

Avery Grace

Friday, March 27, 2009

Happy Birthday

Three years ago today, I was anxiously awaiting the arrival of my first born daughter. The room was set, clothes washed, toys and books waiting on shelves, and I could hardly wait to meet her. To see, hear, smell and feel her. In some ways it feels like forever ago. Life is different enough before kids, but before kids with special needs and potentially life threatening illnesses, your life before seems like you were living on another planet.

Tomorrow, our sweet and amazing girl will be three years old. I want to take this time out to celebrate her, for all that she is, and for the absolute and infinite love and joy she brings to our hearts.

Avery loves to hold hands. Several dozen times a day, she grabs our hand to take us to what she wants, or to take us to her toys to play. She also loves to snuggle... sometimes not at our favorite times (mid-night) but when you hold and rock her, she inches in close, smile on her face, hand in hand as we glide her gently off to rest. She LOVES birds. When she sees one, she lights up, and now the only stickers she likes are those with a bird or favorite TV character on them. Funny since she shows excitement by smiling and flapping. Maybe in her own way she can relate. Avery loves when Daddy gets home. When I tell her he is here, she moves as fast as she can to greet him, and grins ear to ear as he picks her up for a big squeeze. Avery also loves the carousel, the park, slides of any kind, swinging high, and climbing. She doesn't make a lot of noise, but she laughs every day... and the sound is like music to our souls. Even without words, she is easy to read, and communicates in her own way. In every way, she is special and worthy.

Life before Avery was so easy. Our worries were so superficial, our heartaches so mild... but our joys were not near as meaningful, and our celebrations nowhere near as graciously met. With every moment, she shows us how to love. How to be better... how to look past disability, and how to see perfection in imperfection, how to greet life with a new attitude, and how to throw judgement and expectation out the window. I gave my parents a frame last Christmas with a quote on it that stated " Though we teach our children all about life, our children teach us what life is all about." How true that is. She redefines my vision of a perfect family, because though our family is far from perfect, I wouldn't trade my life with anyones. So happy birthday, my precious daughter. I love you to pieces, and to the moon and back again.

Friday, March 20, 2009

Out of the Box

I am not sure I ever imagined I would have a child who couldn't talk to me. Not that she will always be non-verbal, but for now as we are a little over a week away from her third birthday, Avery has yet to develop verbal language. So much of how we connect to others is wrapped up in words. Being able to talk, is something everyone seems to be able to do, right? Wrong. I don't want to keep repeating myself here, or repackage the same message again and again, but when it comes down to it, this is how I find myself coping. How I manage to convince myself that in the big picture, my life is pretty grand.

Think about it this way. Sometimes our memories, such as those of a beloved grandmother who passed or an old friend we can't find.... are actually not "verbal" memories at all. They are images, feelings, senses etc. With Avery, since we can't connect through language, we have to dig deeper. Find a connection through a song, a touch, a picture, or an experience. I feel extraordinarily lucky that she has enabled me to look beyond words, and find meaning in the moments.

In each "evaluation" or "assessment" of how Avery functions, we hear alot about what she needs to learn. What about what WE need to learn? She is an amazing teacher, if you just look beyond what is "standard" or "normal." I know that as her mother it is my job to guide her, to show her the world and teach her how to live in it, but how amazing for me that I get just as much knowledge from her. She is here for a purpose. For those who know and love her, she is showing us how to think out of the box. To sit and be quiet as we watch her light up to one of her favorite songs, to walk side by side with her and experience her joy as she sees a bird fly by, or to realize how a simple hug can merge two souls together... even when there are NO words.

Sunday, March 15, 2009


It is Sunday... arguably, my favorite day of the week as the pile of chores has been mostly attended to, and there are typically no firm commitments or appointments. Though, there are always exceptions. Coming off our week, I am even more grateful for the peace. Tomorrow we will resume therapy, blood work, collecting urine and feces for tests, but today, we can just be a family. I love it.

Both of my girls are taking naps for the moment, and I can actually try to catch up on emails, phone calls, etc. I just spent a fabulous hour doing homework on some of Avery's new medicines and treatment protocols, and feel inspired. I always feel a bit euphoric when we have a new idea of how to help her, and today is no different. I also spent some of this time on a fantastic website that documents testimonials of parents who have helped heal their children. Not all of them to the point of recovery, but healed their bodies nonetheless, and helped ease the Autism symptoms. The site is www.generationrescue.org . Again, I feel inspired.

I was speaking to a friend of mine earlier in the week who also happens to be a family counselor. She was impressed at how my outlook, mood, and overall demeanor has brightened. I was thinking about this today and why this might be. Then as I put Avery down for her nap, and blew her 4 kisses on my way out of her room, she giggled in a delighted manner, and I remembered. It's because I have decided to follow her lead, and love her absolutely unconditionally. We often throw that word around without really understanding it's depth. When I say without conditions... I really mean it. Without expectations, period.

So while it can be exhausting trying to figure out how to help her, and I will continue to fight tirelessly to her benefit, it doesn't mean I can't sit back on a lazy Sunday and simply relish in the joy she and Kaylin bring to my soul. None of us really know what lies ahead, and I am working really hard to stop projecting and start living more in the present. Knowing that it's the little things, like laughter from a few blown kisses, that make life worthwhile.

Friday, March 13, 2009

What a Week

Sorry again for my delay in posting. So much has happened over the last two weeks I don't even know where to begin. Thankfully, we have some new answers... and a new beginning on it's way. I think 3 is going to be Avery's year. Her year for healing, her year for progress, her year for hope.

After waiting over 6 months to get an appointment, we finally got Avery in to see a DAN (Defeat Autism Now) doctor who also happens to be an immunologist who specializes in Autoimmunity and allergies. We have several tests pending, and many blood, urine and stool samples on their way to yield results, but we finally have some renewed optimism. Some hope that this downward spiral CAN get better, and slow down a bit. This physician is looking to treat Avery in some new ways, and he believes we can really repair some of her brain damage and cellular deficiencies through a variety of medications and treatments. Call me nurse Jenny as I am about to be an expert on giving daily injections and taking HBOT plunges with her into an oxygen chamber 5 days a week!

We also survived Avery's first school district evaluation and parent meeting today. As expected, they are recommending a very intensive program for her that involves a variety of therapies, PT, OT, Speech and behavioral. We have some pretty tough decisions yet again to make, as we decide whether to send her the full day, or keep her half day and continue with our current battery of private, out of pocket, therapy that we really feel is benefiting her. I am hopeful the district will accomodate us with the half day idea for the short two months till summer break... but who knows. Sometimes I really wish we had a crystal ball to see what would be the best call... all we can to is dig down deep, hope and pray we are doing the best we can for our sweet and amazing daughter.

Thankfully, the army of "Avery Supporters" continues to astound me with their love and generosity. My mom has been here this week to help us get through, and you should have seen how many therapists and friends came through for us this morning for our school evaluation. They are nothing short of spectacular, and I will forever be grateful for their kind hearts and lifelong friendships. From babysitting to good thoughts/prayers, to actually being there... everybody plays a integral part in helping us get through these times.... and we are blessed. Beyond measure.

Monday, March 2, 2009

When it rains

It's a good thing that I have always enjoyed being a girl on the go. I think my kids are getting used to this lifestyle as well... since they have never really known any different. Everyday is filled with various appointments, and no two weeks are the same. Last week after a 3 hour visit to the ENT, we learned that Kaylin needed ear tubes, which we got two days later, Avery needs her tubes replaced, and her tonsils and adenoids removed, and I need a procedure on my ear to reduce pressure and hopefully bring back some hearing. sigh. Kaylee came through her surgery like a champ. Barely cried at all and we were back on the go that afternoon as we toted Avery to therapy. Avery's surgery will have to wait for reinforcements. Grammy will come help us out as putting a kiddo with Mastocytosis AND Autism under anesthesia has it's risks. They will have to pre-treat her with various steroids and antihistamines to ensure she doesn't go into anaphylactic shock. Scary. I have been putting off this surgery for her for over a year, and after talking with some of her therapists, I think it is time... and hopefully, when she can organize her respiration and swallowing patterns, we will start to see some improvement in her speech. I'm not holding my breath, but it makes sense that it could help.

Another thing weighing on my mind quite a bit this past week has had to do with Avery's treatment after she turns 3 years old. No longer sheltered in the birth to three bubble, we will now be entering the new world of "public school special education." On the DAY she turns three, she can start "school" and there she will get speech, OT, PT etc. I am pretty sure they will recommend full days after her evaluation in a couple of weeks, and I am also pretty sure I don't want to send her for the full day, everyday program yet. I know she needs intensive therapy, but she is IN intensive therapy that I have designed for her at outside clinics, home programs and so on. We'll see though. Bryan and I have to talk with several specialists, her current therapists, and tour the school before we come to any firm decision. But the idea of my non-verbal three year old (who I adore) being away from me all day everyday is a little more heartbreaking than you can imagine.

The old saying is true, "when it rains, it pours." But I am so ready for the rain to lighten up a bit! We have been in this storm for some time now, and we are all ready for some sunlight to peak through and give us a break. That being said, however, I will state that my life is absolutely fantastic, just as it is. Even with all of the struggles and heartaches, I wouldn't trade the joy we get from our girls for any of it. So, onward we march... umbrella in hand... smiles on our faces.