Wednesday, October 19, 2011

Our Angel

I have had so many amazing wall posts, emails, and facebook messages of love and support. Thank you all SO very much for supporting our sweet girl and our family as we navigate the first few steps on this difficult journey.

I just wanted to answer a few questions I have gotten from people. Probably one of the most asked (and I am sure wondered about) is how this happened and can it happen again.

Well we don't know exactly how or why this happened (other than the LORD just decided to bless us with an Angel!). Science is, from what I can tell, unsure of why parts of a person's genetic code just has hiccups now and then. We will see a genetics counselor and a geneticist, and we will be tested. But I haven't found anyone with two biological sibling angels. Not that they are not out there. But I see far more families with one angel and one or two (or more!) "typical" children. We definitely do want more children. At least one more. With this diagnosis, that will be more of a challenge than having an infant and a "typical" child, because Ava will require more attention and care than most. However, I know God knew what he was doing when he gave us Ava first. She is so happy, but not always "easy"...but I don't know any different. This is our normal!!!

When I talk to people, they don't know what to say to me. And that is okay. I wouldn't know what to say either. Just knowing that you love me and my family, and that you are praying for us and will be there to support us is enough.

I had a dream last night that Ava was older and people were staring at us. I guess I worry about this because right now, she is young and cute and everyone loves the baby that smiles and laughs in the store. But Ava will also be the 7 year old that gives strangers hugs and the teenager that might try to pull the hair of the checkout lady. So I think I am nervous and trying to prepare myself for those years. In my dream, a lady came up to us and asked what is wrong with Ava. Have you ever had a dream and when you woke up, you thought that it was the Lord giving you words or actions? That is how I felt in this dream. Because if it were ME doing the talking, I would have given her what for! HA! But instead, in my dream, I just said "there is nothing *wrong* with her. In fact, she is more right than I ever dreamed." WOW. I promise my momma clawed mind didn't come up with that one!!!

People have told me how strong I am and how I am the best mother for Ava. I agree that God gave her to me because He knew I would do everything in my power to be an advocate for both her and this syndrome. But I don't think I am strong. Not without the Lord, anyway. He is the glue that holds this fragile woman together these days. And of course the support from family and friends helps tremendously!

I told my sister last night that this syndrome is just amazing to me. And one of the amazing things about it is that people-even some medical professionals- JUST DON'T KNOW ABOUT IT! The foundation NEEDS a chapter in Arkansas. The syndrome NEEDS more awareness events. It is often misdiagnosed as Cerebral Palsy or Autism. Since our diagnosis, her therapists are working on changing her goals to meet her abilities and her needs, which is just ONE reason an accurate diagnosis is SOOOO important. Another reason is that AS children often start seizures between 2-4, and parents need to know and expect these. Let me put it in prospective.... the greeter "Mr Willie" at our local WalMart has a fan group of 4,051 people. The number of people on the AS Foundation FB page *worldwide* is only 4,916. We need to educate and share with both the public and the medical community!

Obviously aside from my child's progress, my heart is in awareness. And I think back to my work background, my background in public speaking, my contacts in the media. Do you think the LORD gave me a heart for awareness for a reason?!?! I am already planning a fun awareness event in the spring sometime!!! More on that later... ;)

I have also been asked what we are doing at home to help Ava. Obviously we spend a lot of time at therapy. But at home we do a lot, too. We have several sensory exercises that her OT gave us to do, and those help tremendously with her focus and attention. We are making the back bedroom into part craft room (it was really too big for just a craft room anyway) and part therapy room. My dad is building a therapy swing (which she LOVES) and we are going to have all sorts of fun things to do. I should note too that Ava LOVES LOVES LOVES therapy. She loves her therapists (and we do too!) and going to therapy is kind of like going to the Wonder Place for her. I don't know any kid that wouldn't love going to therapy!!! It seems so fun, considering it is serious business!!

I wanted to leave you with a poem that was written in 1987 by Emily Perl Kingsley. Many of you may know this poem, but I had never heard it until a couple of days ago. For those without a special needs child, I think it helps you understand the world of a special needs parent. And I think it does an excellent job of reminding special needs parents that it isn't bad. It is just different!!!

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Kristin Wood said...

What a beautiful passage. I'm in awe of you my friend! Praying for you all and will definitely help spread the word about AS!

Jessica said...

Thanks for sharing your heart and the poem. We are praying for you and want to do everything we can to raise awareness! Love you my dear friend!

Leah said...

Thanks for posting the passage. I hope to be able to help this cause. I also had no clue it even existed!