One year post diagnosis

I have literally tried to write this post 5 times.  I have 5 different drafts saved and can't for the life of me seem to get my thoughts expressed.  I want to remember how far the Lord has brought us since March of 2011. 

When we received Eli's diagnosis of Spina Bifida at 16 weeks into my fourth pregnancy, it was my worst fear in life...happening.  After losing our first baby in 2006, due to a rare unrelated birth defect, the thought of something happening to another one of my babies was honestly my very worst fear.  Although I feared this, I never in a bazillion years thought something else would go wrong.  Especially since I am by nature a rule-follower and always tried to do all I could to ensure a healthy baby.  Even to the point of being a little extra crazy about it. 

And although the pregnancy was horrific: fetal surgery at 22 weeks, bedrest, hospitalization for the final 4 weeks, and etc., etc.  I can honestly say that it was all worth it.

God has and is doing so much in my life and a lot of it has to do with Eli.  I have never prayed more than I have this past year.  Not just begging God to bring healing to his little body, but also praising God for each little change, growth and normalcy that we experience.  My heart is so filled with praise for all the little and huge prayers he has answered.  My faith has grown through the difficult days, seeing God answer and bless us.  I am learning to live each day with expectation that God is going to do great things.  I watch expectantly for little toes to move, for legs to feel stronger, for Eli to do something he couldn't days before.  My heart is so filled with love for Eli.  Who would have thought I would love having a little boy so much!   I do!  I even love shopping for him.

Our family has CHANGED...for the better and it is because of Eli.  I remember the day Eli was diagnosed and through a bunch of sobs and tears I asked what would be the best and worse case scenario for Spina Bifida.  I had no clue what it really meant, what to even expect and I really wanted to know it I was going to lose this baby too.  I will never forget the answer.  The reply was that the best case scenario for our family and our girls would probably be if this baby didn't make it. 

I know the person who said this was saying it because she herself hurt that we once again were facing such a diagnosis.  In her mind, she knew some of the struggles ahead and felt it might be too hard...although she clearly knew from our past history that we would never terminate a pregnancy... No Matter What!!  We have walked that road and very passionately believe that God is the giver of life and only God can take life. 

She said the statement knowing the struggle, but what she didn't know was the help, strength, support of the Lord.  She didn't know the power of a family lovingly committed to do WHATEVER it takes.  She didn't realize the power of a church, friends and family who pray.  She didn't know that God can take the most terrible situations in this yucky life and bring such good from them. 

She also didn't know that two little sisters would be CRAZY over their baby brother.  She didn't know that they would grow up going to hospitals and clinics and would grow to have a heart for those who are different.  She didn't know that at four and two they would pray fervently for their brother and for other kids that they see.  (They have prayed each night for a little boy they saw two months ago at the ortho doctor.  Every night at bedtime Eliza says, "I pray the little boy hurt his leg."  Then she says, "Mommy what happened that boy?"  We are working hard to learn to not give stares and to wait and ask such questions about people who are different when we get back in the van.)  She didn't know that having a brother with special needs wouldn't hinder their little lives but rather enhance it drastically.


Ahhh, one year later.  So thankful to be here.  Despite all the hurdles behind us and the ones that are looming ahead, we are very blessed.