Wednesday, May 2, 2012


I heard this song the other night while sitting at a funeral.  
And I didn't cry. 
I looked at my sister and whispered, "I'm better.  I don't even need to cry..."
And just like that I knew it was true.  I am better.
 I think people wonder about the grieving process of someone who is still alive.  It's especially hard for people to understand when looking at Mabel because she is here and she is beautiful.  
It's hard to go through, let alone explain but what I know is that though waves of grief still come and go, I am super proud of myself for riding them.  It has been hard and I'm sure it isn't over.  But it has taken me to emotional places I had never tapped into inside of myself and for that I am thankful.
I am stronger, more capable, and grateful for the grief.
 I don't know many moms who have to worry about their child biting through their tongue, do you?
I do.
Mabel chews her tongue and she doesn't feel pain.
By looking at her you would never know that this is often one of my greatest fears.  And yet it is.

I don't know many moms who have to worry about their child having a broken bone because there would be no way to tell either way.
I have to.
Because there is no way to tell.  She doesn't respond to pain and she wouldn't be able to tell me.

I don't know many moms who have to hold their 2 year old's legs up in the air and physically help them poop by using a wet wipe and their finger.  
I do.
Because she is too weak to push it through herself.  It's painfully sad and upsetting for me but it's necessary many days.
 Many people wonder what triggers the grief or the pain.  How can I be so well one day and so sad the next?  Am I depressed?  Am I on the verge of a mental breakdown?
No.  I don't believe so.
I believe I'm just a mom who is doing her best.  I am getting through each day as it comes.  
Some days this almost 2 year old is loving and quiet and it's easy to love her and forget the rest.
Some days, however, she cries for 14 hours straight [literally], she can't see, she can't poop, she shakes constantly, she can't sit up let alone smile and she usually vomits to top it all off.  Those days I am just a normal mom to a not so normal kid who is just doing my very best.  Grief or no grief.
The geneticist called yesterday.
"We have quite the complicated care plan in place for Mabel.  We'd like to start blood work and more tests on Monday."
And so it is:  back on the diagnosis train.
And oddly enough it feels good to write that.  Familiar in a way.

As always, please pray.  And as always I'll keep you updated.  
We received the genetics consult paper work in the mail last week and it was completely overwhelming.  The diseases that they are testing Mabel for are very complex and almost none of them have a cure.  The type of epilepsy that Mabel has, because it started so early, usually makes for very grim testing and typically a very discouraging diagnosis.  

Despite what we know to be true because of medicine and research we are determined to push on.  We live in a world that is forever changing, evolving and growing and we want to be part of something greater than ourselves.  Hopefully that will first include a name for whatever is causing Mabel's symptoms and someday we would love to see more awareness and even a cure for whatever that is.  
For now, we have no choice but to trust God and His plans for us.  
I believe He has given us the perfect doctor for such a time as this and so I can put my trust in that.
For the first time in a very long time, the peace that I feel is surpassing everything else in my spirit and mind.  
It's finally such a beautiful place to be.

"Rise up; this matter is in your hands. We will support you, so take courage and do it."  
 -Ezra 10:4

...and so we will do it, knowing it is all known to God already.

1 comment:

Amy said...

R, I love it when you are so in love with Christ. When you are totally leaning on His shoulders. It comes out in your words so beautifully. It is amazing how strong God knows you are. He has put a mighty load upon you. You are a human being. And you show it wonderfully. As always, God bless. Know that we pray for you & Mable daily.