What I need you to know about prematurity...

Tuesday, November 17, 2015

Once upon a time I use to bleed awareness.  I use to throw statistics around.  I would scream at the top of my lungs and beg everyone to understand.  Beg them to see.  

But in recent years, my battle cry is not as strong.  

I haven't become weak.  Worn maybe, but never weak.

I have come to realize that unless someone has stared a journey eye to eye, they can never truly appreciate the journey or the struggle(s).  They can't understand the grief, the pain, the joy.  Today is World Prematurity Awareness Day.  Instead of raising awareness for premature births, I just need you to know a few things:



I need you to know that premature birth is a death sentence for far too many.  1 million babies die each year due to premature birth.  

I need you to know that premature birth is the #1 killer of babies.  #1.  

I need you to know that roughly 2,740 babies will die TODAY.  

I need you to know that premature birth is a life sentence for so many of its survivors.   

I need you to know that roughly 11,000 babies born each year (in the US) will have severe disabilities due to their premature birth.

I need you to know that premature babies are not just small babies that need to grow.  A newborn on life support is not a baby who just needs to grow.  She is fighting for her life.

I need you to know that the strongest people I have ever met weighed a pound or less.  

I need you to know that leaving the NICU is not symbolic of prematurity being over.

I need you to see the years of therapy, the missed or delayed milestones, the 17 specialists, the never-ending testing, pokes, scans, medications with unknown long-term risks, and all the hospital trips and admissions.  

In the same way that you don't  look at a cancer survivor and tell them to get over the ill effects cancer has left on their body, I need you to know that you can't expect the same for a child born prematurely.  Or their family.  

I need you to know that parents of preemies had/have the same hopes and dreams for their children as normal babies/children.  

But I also need you to know that prematurity forever changed the trajectory of our lives.  And the lives of far too many.    

I need you to know that while you can't understand the journey you can understand the fierce love a parent has for their child.  No matter how small.  No matter how sick.  No matter how disabled.  

I need you to know that I love this beautifully, messy, complicated life.  I've found beauty in the ashes.  

And I need you to know there are ways to help.  You can always share our story of hope and healing and/or there are organizations out there ready and willing to step up and help families who are beginning this journey.  

Some of my favorites include:

Friends of Tennessee Babies with Special Needs (who carried on the Saving Grace Project when we left Tennessee)

NICU Helping Hands

Pierce's Project

Zoe Rose Memorial 

Graham's Foundation

If you would like help in locating an organization in your area, I would LOVE to help you.  Email me and I can connect you!

You always hear, "everything I ever needed to know I learned in Kindergarten." But the truth is, for me, everything I ever needed to know I learned in the pages of my Bible and behind the cold, hard, locked halls of a NICU. While my Mama heart longs for a day where other families wouldn't have to endure death, the NICU, or lifelong disability I ultimately know that can never be because we live in a broken world.  What I can do is pray that God's story of Alli ALWAYS reminds others of His goodness.  

And that there is always hope.  

14 ounces, y'all.  There is always hope.  


Our Alli Grace was born at 27 weeks without amniotic fluid and severely growth restricted.  She weighed only 14 ounces, less than a single pound.  Alli was given 0% chance of surviving the pregnancy and not much greater odds if she lived until birth.  She will turn 5 in January.  Our mustard seed.


Always hope, 


Jackie
 

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