Saturday, October 15, 2011

Not the life I chose.

As I sit here watching my girl seize I am brought to tears.

In spite of valium, clonazepam, ativan, clobazam, and phenobarb (some multiple doses) she still seizes.

This means Joe and I sleep in shifts and more than likely we won't be going to church in the morning.

I have a very close knit group of lifelong friends on facebook in my infantile spasms group and tonight I learned of a sweet girl at the end stages of her disease.
Yesterday, I heard of a sweet little boy that passed away, most likely, due to a seizure in his sleep.

Brave Liam is still in the hospital on bipap now. He has been on a ventilator for some time now. His last MRI shows atrophy in his brain stem.

These families have to make horribly painful decisions for their children.

I did not choose this life, nor do I want it. I would do anything to heal my daughter.
I don't want to have my family so fractured that I go a year without seeing the people you think would be there for you the most. I don't want Emily to go the rest of her life not knowing some of the closest family members.

I don't want to have so many people in and out of my house during the week. I don't want to know all the best medical supply companies.
I don't want to have to have a neurologist, cardiologist, opthamologist, and a nurse case manager.
I don't want a feeding pump on a pole next to my daughters crib.
I don't want to have to drive 2 hours to have Emily fit for a wheel chair.
I don't want to have to fight over a parking space in front of my apartment and I don't want the handicapped tag checked with the word permanent that comes with said spot.

I begged and pleaded for this cup to pass by. God wanted us to have all of this. I don't know why, I may never know.
What I do know is God is the same before all of this and He will be the same after.

I run my fingers through her fine, wispy hair and I know she is what I want.
I love her more than I ever thought possible.

Some days are harder than others. Today is hard. Today I am mad at the crazy parking space lady. I am mad at selfish family members who I will never be able to change. I am just mad.
I have that right.

So, for now I will cry and vent and cuddle with my seizing girl.
Tomorrow is a new day and it may be better.
I hope.


  1. Oh Erica, I know how today feels....I have had many, many, many days like you is choking and suffocating....ALL of it!!!
    All I can say, is release it...yell, cry, what you have to do to let it out because you will feel better.
    I actually had a break down with my Community group on Thursday. We were asked if we had ever prayed like Jesus did in the garden of gethsemane....remember Jesus asking the Father to take the cup from him, but prayed His will be done? I
    found myself speaking up....I have prayed that painful prayer....I have asked god to heal my son for years now, and I found myself saying" only if it is your will" a very very hard thing to relinquish and surrender to Gods will, His plan, which likely is not healing on this CG prayed this with me.....I sobbed. I was a mess.

    God knows...we don't....

    What I do know is pain is real and it sucks....
    You are not alone, you well know....

    I pray your tomorrow is a better one....

    Xoxo deb

  2. Erica-- You and Joe are an inspiration. For what its worth, I think that Emily was given to you because you are so strong, your faith in God, your dedication to Emily and Joe. You are amazing. Not everyone could do what you do. Let those emotions out! Don't let them fester and eat you alive. God does know what we need, even when we can't see it. I think you are here to be strong for that beautiful girl. You and Joe are amazing parents and exactly what Emily needs. You are an inspiration to me. You have taught me to never take anything for granted and to enjoy every single second I have with my daughter. I know this post is from October, but I want you to know what amazing parents you are. You are there for others who are undergoing similar journeys, and I imagine you are a blessing to them. I just wanted to you to know that. :)