Wednesday, November 30, 2011

Wishful Thinking

Today I had to run some errands. Nothing major, but I wanted to get some supplies to make a sensory box for Rae (popcorn and a rubbermaid box). There must have been a crazy high demand for popcorn at Target because the shelf was empty. So, I had to swing by Wal-Mart and while driving from one store to another Rae fell asleep. This has happened before and in an effort to keep her asleep I pad the buggy with a cart cover, blanket, and travel neck pillow. So, in Rae's usual laid back fashion, she "shopped" comfortably with her feet dangling over the edge of our buggy.

Shopping in Style
Well, while meandering through the giant aisles filled with Christmas goodies, I noticed a young woman coming towards us with a little girl about Rae's age (maybe a slight bit older) sitting up in the bottom portion of her buggy. As the distance between us decreased I found myself thinking, "I wish I could sit Rae in my cart like that." Of course this thought is something I keep to myself, but there are occasions I find myself wishing Rae was physically able to do what other "normal" children are able to do. While we passed each other in the aisle I over heard the young woman tell her shopping companion that she, "wished ______ (insert girl's name) would lay in the cart like that."

I shuddered and spoke under my breath, "Be careful what you wish for."

You never know what you will actually get when you wish for something. If that young woman knew about Rae's condition and the struggles that come from it, she may have thought twice about thinking she'd rather her young daughter contently lay in a buggy. But, she didn't and from her perspective she might have thought having a child that was so content to just rest peacefully in a buggy while she shopped would be ideal.  For me it is the exact opposite. When I hear other mothers exclaim how they now have to chase their children around the house or baby proof everything because Baby Jane/John won't stay in one place my heart swells with envy. I long the opportunity to chase Rae around the house, but for now she is content to lay peacefully in one place.

So, no matter what is going on try to careful what you wish for because outward appearances aren't always as ideal as they may seem.


From time to time when my husband and I get into a disagreement (read: argument) I find myself asking him to specify what his expectations are of me. I feel that I am not able to meet expectations when I have no clue what they are. Seems logical...right? Well, his simple reply is always the same, "I don't have any expectations." That's when I call B.S.! We all have expectations. I, foolishly, even have expectations of complete strangers, which are often met with my being disappointed, but that's another story.

Recently, I find myself having to readjust my stance on expectations. I can not have any expectations of our least physically speaking. All those lovely, insightful, books that instruct parents as to the "normal" development of their child is reduced to kindling for my burn barrel in the backyard. Since Rae has been diagnosed with Hypotonia, I have found that any expectations I daydreamed about while pregnant have become just that...dreams.

Rae is now 13 months old and if I can get her to roll over on her own ONCE during the course of a day then I feel like we have accomplished something. My heart melts if she places her tiny hand into mine when she wants to be picked up because that is quite the feat in our home. The simple achievement of drinking an entire 3 ounces from a regular bottle in one sitting is cause for celebration, which I do whole heartedly of course. Every minute, almost undetectable movement can be and often is considered progress in our eyes.

On occasion, I find myself daydreaming about when she'll stand or maybe, dare I hope, take her first step, but those dreams are masked in a fog of mystery because I can't have any preconceived notions of when to expect her to meet those milestones. When Reality body checks me (which it gladly does on a regular basis), I curl up inside myself, silently crying, hoping someone may hold the key or at least offer an answer as to WHY this has happened to our little Engel (No, that isn't spelled incorrectly, it's German). Then I pick myself back up, brush away the fear of the unknown, re-calibrate my thoughts, and move forward.

So, do I still have expectations...absolutely! I expect to have more blood work, more tests, more x-rays, more doctor appointments, more medical bills, more therapy, more smiles, more laughter, and most importantly more PROGRESS! Because even though her milestones are much smaller she is still making roll at a time.

Oh, and I still have those pesky expectations of my husband, even if he claims to have none of his own for me. Round 32...ding, ding!!