After Erika's appointment yesterday, my mind was swimming in thoughts.
When Tim was born, I was all of 22 years old. The situation was so serious, actually beyond so serious. There was no internet back then. There was no google, no internet pictures; nothing but the medical library, and I had no medical degree.
However, it didn't take a rocket scientist to know that being declared "brain dead"; meant DEAD. You are going to cease to live. You are going to bury your child. (Obviously we didn't bury Tim. Praise the Lord for that. He is a husband, father and teacher today. )
It was almost a year before I heard the words cerebral palsy and much of what we learned, we learned by accident.... trial and error.
Back then, they didn't give you too much info.... they fed it to you in a slow, continual line of simplicity that tended to just make me mad..... "Just TELL ME EVERYTHING so I can do research... It doesn't MATTER how I FEEL! MY FEELINGS have nothing to DO with it!
When Joseph was born, and the doctor came in and said, "You're baby is a 'little sick'; those were my words. "Cut to the chase! Does he have Hyline Membrane? Is he on a respirator? " "DON'T TELL ME HE's A LITTLE SICK!" "HE'S A LOT SICK!"
By the time we got to Marcus, I didn't need to be told. I knew. I let them go through their dialogue and then I could ask real questions.
I am really thankful that the understanding that some things cannot be fixed has been reality for a very long time. In one way, it makes the present easier to fathom....in a logical sense.... but the other reality is that it still hurts.
I hate it that my children have to struggle to do what most people in the world take for granted. Most of the time I deny myself the luxury to feel. After all, if I cry, or if I feel sad, what kind of an example would that be? Wouldn't I be teaching them to feel sorry for themselves? Instead, I save those moments for private. OR, I don't reveal why I'm feeling weepy. I chalk it up to menopause and then I tough it up once again.
Honestly, yesterday, I was hoping that we were not at the end of what could be done to intervene with Erika. I was HOPING that there was something more that could give her mobility. But reality is, there isn't. Or at least there is nothing that can give her any real benefit. They can rotate her knees to the right direction, but it really won't give much benefit because she has no flexibility in her hips.
We found out that it is actually BETTER that her knees are not straight because that way she can clear her feet in front of her. She throws her legs out a bit and that gives her the clearance she needs to walk.
So, DEEP BREATHS.... Erika is Erika. And I am so grateful for her! Erika is not Arthrogryposis. Erika HAS arthrogryposis. Erika is a miracle. She is my miracle. And once again, YES, she is fearfully and wonderfully made. God did NOT make a mistake.
Our next step has been in helping Erika, who cannot bend at the hip, to learn how to get up off of the floor. She has become really fast with a chair. But there won't be chairs in the mall or if she goes out when she is older. There won't always be people to lift her, and I so want her to have the opportunity to experience as much of a normal life as possible.
So, we have started "Cane Therapy". :)
A little comedy always helps my hurting heart. :) And there is nothing like a sweet sister to join in the therapy fun! :)