Tuesday, March 27, 2012

Importance of a Support System

In the midst of being pregnant with Eliana, and her being diagnosed with Spina Bifida, we moved to a new city.  My husband got a higher paying job that meet our financial obligations, but not my emotional needs.  Moving to a new city definitely created more challenges.  Sometimes it is very discouraging not having a support system around.  People have very good intentions but the saying "out of sight, out of mind," will forever stand the test of time.

All I know is the D. Being miles a way from the city that I have called home is heartbreaking.  Most of the time it's just me, the hubs, and the girls.  We don't get many visitors other than our bi-weekly meeting with Eliana's state provided physical therapist or the people from the research study that we participate in.  We don't really know many people in our new hometown, other than a few familes that I have met in the cry room at church, and  to date I haven't met any families with children with special needs. 

Up until a month ago, I really didn't have anyone to talk to. (Recently I meet other Michigan moms with children with Spina Bifida, and will be talking about that in the future.)  All of my friends are becoming more like associates. People often say what they are going to do, seldom follow through.  And if I hear someone say, "If you need anything don't hesitate to call," again I am going to scream, most of the time their voice mail is all I get. At this point there is no reason for dialing.

Currently my support system consist of talking to my mom on a daily basis, and every so often getting a message asking how the girls are doing from a random friend on facebook. I have over a thousand.

This post probably seems more like a rant, but the truth is it is so important to have a support system when you are going through a situation like this.  For me the baby blues probably lasted a little to long, and it is cliche in the Christian community to ask for help from a psychologist, but I probably needed one.  Not only was I adjusting to having a new baby, I was adjusting to a new life of having a child born with Spina Bifida.  Our lives aren't over, her life has only begun, and she is surely doing far better than the wacko's who thought that I should get an abortion.

I have my days, most days, where I am left wondering what is going to happen next. The nagging question in the back of my mind, "Will She Walk?"  Then she does something amazing like crawling over a toy, or pulling to stand and I realize it doesn't matter Will she in future, but what she IS doing today.  To my families with children who have Spina Bifida or any other special need/disability, seek help.  Don't go with questions unanswered. If your depressed don't suffer in silence.  It is so important to have a support system and if you don't have one, find a support group to be apart of.  Families that are going through a similar situation can truly provide great in sight. Get help and get involved, we need you.


Monday, March 12, 2012

Family Stories

We are not the only family affected by Spina Bifida.  There a ton's of encouraging stories out there, of families who have overcome many hurdles.  I have the honor of being apart of a grassroots Michigan group called, The Southern Michigan Spina Bifida Connection. Today one of the family's journey shared an article that highlighted there families journey.

Check this article out http://www.candgnews.com/news/local-family-rides-emotional-roller-coaster-way-birth-baby-girl

I know we are not the only one's out there. What's your story??


To find out more about Spina Bifida, resources available, and how you can help the cause visit www.spinabifidaassociation.org

Thursday, March 8, 2012

"The Diagnosis"

"The Diagnosis" from I AM Curly Locks Blog

After a late night visit to the emergency in December, while pregnant with my daughter Eliana, they told me that something was different about my pregnancy.  When doctor's say stuff like that, it puts you on edge.  I was completely frantic, and when I went to a follow up appointment two weeks later and heard "the news," I was a complete mess.  The tears were flowin', emotions roarin', and  I didn't really understand what was going on.  They referred me to the genetics department, which didn't make the situation sound any better.

My meeting with genetics went a little something like this.  Heartbeat, heartbeat, thump-thump, thump-thump, heartdrop, tears, tears, and tears as I was told that my daughter would have clubbed feet and, wait  for it, Spina Bifida.   When this diagnosis came, it seemed like a death sentence as they told me the options, "You are early enough in your pregnancy, if you don't want to continue on with it. Termination is  an option as this will be hard on your fairly new marriage and your one year old..."

I couldn't believe the words I was hearing.  My mind raced, an unspoken dialogue of heartbreak taking over my mind.  I was put into one of the most challenging experiences in my life, and you want to talk about "The Option," which was no option for me.

Note: This is just the beginning official blog launch April-May. In the mean time feel free to check out my personal blog at www.iamcurlylocks.blogspot.com

Sunday, March 4, 2012

For the Love of Elly:Our Journey Living with Spina Bifida

For the Love of Elly is currently under construction.  Will be officially launched in April.  Sorry for the inconvenience.  Would love for you to check out my personal blog at www.iamcurlylocks.blogspot.com