After the roller coaster week we had last week, I was spent. Not only stressful but way too busy, running to and fro with already scheduled things each day and throw in the things we needed for Brayden...trip to the ER for not breathing during a seizure, the frantic trip for blood work, the waiting for the results,...
During all of that I kept my head on straight, going through the motions just as I do with most of Brayden's things. Being cool, calm and collected.
I have to say that last week, outwardly (other than to Jeremy) I looked cool, calm and collected. Really I was a mess. Seeing Brayden having such difficulties breathing during that terribly long seizure, shocked me back to reality of realizing the severity of what Brayden deals with on a daily basis. We are so used to it. Lately, we have heard people use the term to describe him as "medically fragile". I did not really agree with that...until the whole not breathing thing.
Then talking with the neurologist, reading the articles that were sent about that metabolic disorder, seeing in black and white..."early childhood death", too much to handle. While we do not really think about the longevity of Brayden's life, the potential of being diagnosed with such a disorder made it undeniable and no way to avoid it.
The doctors can only do so much since they do not really know what they are dealing with, they can not tell us much. Are things going to get better for him or worse? Can a doctor answer that question? I did ask them...all of them...not one of them could answer that...they did say they would work with us to improve his quality of life. And it so ways things have gotten better and in others it has not.
We just do not know.
Only one knows.
The Lord.
Waiting on the Lord.
I try.
If I did that better I would not have ended up in bed this past weekend sick to my stomach with a ferocious migraine from being stressed.
4 comments:
oh, this is something - these thoughts - that i struggle with every day. i hate having them in the back of my mind. just wanted to let you know you are not alone with them.
carrie...i don't know what to say...i wish i had those "perfect" words.
but, i'm praying.
and i care.
I'm just praying for you, for all of you..
Very well said. I know what you mean about not seeing your child with certain labels. Is that denial or is God just protecting us from a truth that we aren't quite ready to handle? I don't have the answer, but as you said - there is One that does. I am so thankful that God knows all. He knows what we need and when we need it. He gives strength when we have none and He works things according to His will. I certainly don't understand it all. I am just working on trusting Him with it ALL minute by minute.
Post a Comment