Monday, April 22, 2013

Two Years Later

Oh my goodness...
It’s been over a year since I’ve updated this blog but I hope it’s been of use to those who love us and Avery and those who are wanting to learn more about something that is a very big part of our lives. In the day to day, we actually forget how big it really is but I think that’s a sign that we are all living and enjoying life as we should. 

This past March marked the two year anniversary of when we found out that Avery had Aniridia. It didn’t really even occur to me until we found ourselves at the ophthalmologist this past March for Avery’s preventative pressure check. 

 Two years ago we walked into this office very afraid of what we might hear. With a two month old baby covered up in her little baby car seat, two new parents being very quiet  and afraid…sitting and waiting. I talk about all of this in one of the  previous posts ( over a year ago) so I won’t drag you back through that time but as I watched that confident and brave toddler strut into the doctor’s office this morning…sunglasses on, hat on, eating her snack, just standing there with me as her Dad went to look at glasses for himself…I was overwhelmed with the vast changes that have taken place in the past two years.

We took our seat in the waiting room and the nurses came out- “Is that Avery? Avery- give me a hug! Look how big you are! How are you guys? She’s doing so great.” In a very strange way…it was like going to a party…at 7:30 a.m. at the ophthalmologists office.  It made me think of how these people have become a very important part of our lives in the past two years. I do remember after Avery’s diagnosis, one of the nurses kneeling down to her carseat and saying…”We’re going to watch you grow up Avery”. I have to say- I hated hearing that that day but I find such solace in it now. It takes a village.

One of Avery's photo shoots in November. Needless to say-we didn't get many shots.
As Avery gets older I continue to worry that she won’t be as agreeable as she has been when it comes to getting her pressures checked. Our last visit was a little touch and go and we weren’t sure we would get the pressures without having to put her under anesthesia.  But with a little ipad and a little determination – we did it. I was almost certain this time would be worse. Trying to get a 2 year old firecracker to sit still for anything is near impossible. So the nurse came in and Todd had the iPad all ready set for distraction.

 When it was time for the first eye, we talked to Avery and reminded her what was going to happen. That the nurse would need to touch her eyes a few times (or 10) to make sure that everything was okay.  And Avery just sat there…like a statue on my lap. It was amazing. Then the nurse needed her to face a certain direction, so Todd decided to try the iPad to direct her…Wheels on the Bus app…not the greatest idea.

So Avery of course began dancing to Wheels on the Bus. One of her favorites of all sing-a-longs. We told her she could dance after the nurse was done and she stopped. What? This was a miracle. And within record time for her ever getting her eyes checked- we were done.  The doctor came in and did his routine check and we were okayed for another 4 months.  Not having said one word the whole time we were in the office, Avery said “ All done. OKAY!” and ran for the door. Everyone was laughing.

Avery and I drove separately to this appointment and so we headed back to the house after picking out a very special yellow ball as her reward for being so awesome. It was a quiet ride home since we had all been up since 6 a.m. but I found myself overwhelmed at how much all of our worlds have changed in the past two years, the strength that we have all found in ourselves and how this one amazing child has brought so many wonderful people into her life and into our lives. It takes a village.  I couldn’t help but cry a little thinking through all of this on the way home.  But once we got home the tears were dry.

I went to get Avery out of her carseat and she said, “Mama cry”. She touched my eyes and then put her hand on my face.  It was a moment I will never forget. She is so wise beyond her that soulful heartful way. And I continue to believe that is a gift that we get when we are faced with challenges in our lives and surrounded by love at the same time.

Other pretty big moments this past year
  • Our visits this past year to our local opthalmologist and one to Duke Eye Center this past summer, have all been positive experiences. Avery continues to be doing wonderfully. We continue to keep the hat on and sunglasses always when outside.  Avery is a little far-sighted but not to the point where glasses are recommended or to where it’s hindering her development or movement.

  • Avery still continues to see her vision teacher every two weeks now. It is so wonderful to have a trusted person looking out for Avery's vision and development along the way. It takes a village. She came to check out our new house just recently and her perspective is always so welcome.  For instance...we have an oriental rug in the living room. She mentioned that this could possibly be challenging to Avery as far as finding objects on the floor, etc. The busy pattern on the rug could make it difficult to identify objects that she might be searching for. It never even occurred to me and I actually felt awful about that. But just as she was talking about the importance of contrast and I had gone to grab a white blanket to lay out on the rug so that we could work through an exercise- Avery had spotted a brown spider on our brown couch. I  could hardly see it myself. I've never been so happy to see a spider actually. This is still something to keep an eye out for. Avery hasn't appeared to be particularly challenged by change in texture or color, etc. at this point.
  • Avery is finally able to say “So bright” when it’s too bright inside or outside and she’ll show us to close the curtains or say, “Light off” and she'll even close doors herself. And sometimes she wants lights on when I wouldn’t think that she would. So it’s very nice to be at a stage where she can tell us what makes her comfortable. Very nice is actually an changing is more like it.
Avery's 2nd Birthday and seconds away from devouring that cupcake.

The Lego Tower Master.