Monday, October 31, 2011

Angel & the Lady Bug

Happy Halloween!!! Our little Angel was dressed up like a lady bug tonight. Albeit a lady bug who refused to wear her wings and antennas! HA!
So while I was waiting for the Trick or Treaters to come to the door tonight, I sat and started reading a book called Finding Glory in the Thorns: Hope and Purpose in Life's Painful Seasons which is a book that popped up on my amazon search for books about AS a few weeks ago. It was written by a couple who have three daughters- the youngest of which has AS! I didn't know it at the time I ordered the book, but thinking back, I guess that is why it came up on a specific search for books on AS. It is a wonderful book for any parent or family that is going through a hard time in life, and specifically those with a special needs child. I have only read the first few chapters (those pesky trick or treaters kept interrupting me! HAHA!) but I am really finding a lot of purpose and value in the words. One thing stood out to me tonight that I really felt lead to share. So lead I couldn't sleep until I wrote this post!

Each morning when I get up, I have to give myself the same pep-talk: You have a child with Angelman Syndrome. Your daughter is disabled. Your daughter has special needs. And GOD is still in control. Every morning, I say those things to myself. Each morning it gets a little easier to accept. But I still find myself thinking "it wasn't supposed to be like this" so many times in my day. There is a palpable sense of dread and sorrow when a toy commercial comes on and "typical" children Ava's age are shown doing things we could only dream of our Ava being able to do right now. When I have to explain to the nosey old lady in the store why Ava doesn't wave to her. Or try to not break down in tears as the mom pushing the swing next to ours at the park complains that her child won't "shut-up." So many things I see and hear and I just can't help but think to myself "this wasn't supposed to happen. It wasn't supposed to be this way." And not all of the times I think it is it a sad moment. Surprisingly enough, many of the times I think that phrase is when Ava does something exciting and I think it in a happy context because I know just how amazing she is! I spend a lot of my day trying to mentally and emotionally balance my logical expectations for her based on the AS with my emotional and deep desire for her to break the mold for AS and do extraordinary things. It is quite the tightrope walk in my head these days- a balancing act between not getting too encouraged and hopeful, but still enough to push through our busy schedule of therapies and doctor visits.

As I was reading the book, the heading "It Wasn't Supposed to Be Like This" caught my attention. Because, I think, it is such a familiar phrase to me these days. The authors expressed so many of the feelings and emotions that I feel that I was almost brought to tears that someone besides Cole and I, another parent, feels the same way. They then pointed out that that is probably what Joesph thought when he found out that Mary was pregnant. His life was turned upside down in a way he never imagined. But he listened to the LORD and look what happened! Prophecy was fulfilled and the LORD JESUS was born! Then they pointed out that Peter expressed a similar feeling to Jesus when Christ told him that he was going to be executed. And by that act of Christ dying on the cross, the world was saved!

Life doesn't always turn out as we plan. This is a hard lesson because, if you know me, you know- I am a PLANNER! I always have been. But I learned fairly early that a good planner is ready to handle anything and be flexible in their plan. They adapt. So I am adapting. It isn't without some resistance and frustration and sadness. I still weep and mourn for the future I dreamed of for my child. I still have moments where I think "this can't be happening" and feel numb to it all. But the Bible teaches us that our plan isn't always the one that the Lord has in mind. But that the Lord's plan is always the one WE should have in mind. Because His plan is the perfect plan for us. It may not be what we want or expect, but it is what is best for us. Ava doesn't have a typical future. And the Lord knew that before any of us were ever created. Before the world was created. But she has a beautiful future that the LORD planned for her long ago, and I am so thankful for the fact that the LORD loves her so much that He personally planned the best future for her. And that I get to be a part of the spectacular life He has in store for her!!!


This was honestly the best one we got in "full costume"...she just was NOT having the headband AT ALL!!!

I adore this one, even with the blurriness! She is looking at me like "what the heck are you doing to me mom!?" She may not talk, but with faces like that, does she really need to?!?! HA!

My goofy Angel STANDING with very little support from mommy. She is doing that more and more these days, and even stood for a few seconds by herself at PT the other day!

Someone had to wear the antennas...

...although Ava didn't like them on his head either!

Happy Lady Bug!!!

And now we have ditched the wings. She looks more like a can-can girl than a lady bug! HA!

Stink Bug getting into her diaper changing goodies!

Mommy and my sweet bug!


If you look hard, you can see she is giving me a sweet Ava kiss!!!






2 comments:

Michelle said...

This post made me cry. It hits close to home with me. When I was a toddler the doctors told my parents that I either had albrites syndrome or NF . Since then I have been in and out of the hospital twice a year for various tests MRI's and CT scans. I have 5 learning disabilities which has made school extremely difficult. As a child I always wanted to be like the other kids, I felt stupid and different. My mom always would say " god made you and in his eyes you are perfect." A year and a half ago, the doctors found a tumor in my face, which if not taken care of would lead to blindness. The doctors don't know what kind of tumor I have or how to safely remove it. It has taken a toll on me, and I sometimes think " why me, this wasn't supposed to happen" all though I cant completely relate, I can on some level. I plan on going back to school and becoming a Therapist for children with disabilities and their families . I have my mother to thank for my positive out look on the obstacles I was given. Eva has you :0) .

Cara Beth said...

Super cute post! I love that she is standing more!