My take today on "my turn, my time" and all of that other "stuff"........
How do you do it? How do you hold it together? How do you find "your time" ?
These are questions that other people ask me on a regular basis when I talk about my daughter, all of the things that are involved in raising her.....and all of the sadness of having a "non-neurotypical" child.
In fact - when I get really screwy in the head - I start asking myself the same questions.
The fact is that she has 6 different therapists - 6 different doctors. She has had 10 vials of blood drawn out of her just this month (last month it was 8)....I have to give her B12 shots every other day, because of her anemia...She gets more testing in a week for mito (hopefully we can cross this off the list as a NO) - we are flying out to LA in 2 weeks to see another new doctor for a SPECT brain scan......and all of those things in the hope to make her feel better.
I am not going to act like it is an easy job to follow her around the house constantly, trying to get her to talk to me - communicate - imitate - give me something kid.
And yes....there are days you can find me with my head down - just trying to breathe in and out - and not get upset, because my own child has just sratched me, hit me, screamed, cried and kicked for 3 hours straight - or pooped all over her clean room and created a mural out of it.
But one thing I have stopped doing is waiting for "my turn". This IS my turn.
To quote a good book that my friend Bill is letting me borrow - "Nothing, absolutely nothing happens in God's world by mistake................unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and in my attitudes."
Every day I wake up - and it is "showtime". Some days I am livng in a comedy - others a tragedy, and once in a while a romance. There is no way I can think of myself as "on hold" until some sweeping change affects me or cures my daughter.
Matt & I often wonder how our lives would be if we had a "typical" child. Would we be off on fun vacations to Disney - teaching Alexis how to read, playing dress up, going to ballet classes - having playdates?
Or would we still be lost in our own selfishness - out partying until God knows how late - being foolish - and lacking direction in our lives?
I suppose we will never know - and the thing is - it doesn't matter.
Sometimes we both have to fight the temptation to go down the "what if...." path. If I start thinking of how different Alexis is from the other children - and how many experiences she is losing out on, my breathing gets too shallow to be healthy. My heart beats too fast. I have to remind myself..."This is my turn".
Opposite to the pain - we have so much joy and richness in our lives. As a wise woman once said..."When you are hungry, a simple meal is as good as a feast."
Alexis greets us with a smile and a "Hi"! She can say simple words to tell us what she wants. She has a little laugh and a little smile that is absolutely infectious.
When I hold her she sometimes gives me a little kiss (it sounds like a very soft "paaaah") - and it absolutely melts my heart.
When she comes home off the bus, she forgets about the stairs and jumps into my arms.
From a child that didn't even respond to her name a year and a half ago - these things are jewels to me - and make my heart skip a beat.
I feel hopeful that my sometimes paralyzing fears about Alexis' future as a child and an adult will subside - as we see her continue to join our world. Will she live in our home forever - or will she lose her diagnosis and build her own happy adult life?
I don't know.
But I'm learning to trust in God that I'll find the right answers because God has answered so many of my prayers.
This IS my turn.
I am not going to waste it.
