THE Diagnosis

Sunday, March 3, 2013

Last Monday was one of those days I will never forget.  The diagnosis, the words…both comforting and frightening at the same time.  For us, it ultimately explained so much regarding Alli and her development.  In the week that’s almost passed since her diagnosis we’ve attempted to process the words, the meanings, the feelings.  While not totally caught off guard with the news, there was still a sting hidden deep into those words. 

Yep.  You read that right.

Initially, our plan was to tell only those on a need to know basis.  Our closest friends, family, prayer warriors, and a few of our preemie friends.  Our goal was to shield our daughter.  Shield her from the stigma of what CP looks like, shield her from what it does or does not mean, and protect her from this cruel world. 

We desperately don’t want her labeled. 

But then it occurred to us, Alli has had more than her share of labels in her little life.

Incompatible with life
Not viable
Severe Intrauterine Growth Restriction (IUGR)
Bronchopulmonary Dysplasia (BPD)
Chronic Lung Disease (CLD)
Pulmonary Hypoplasia
Pulmonary Hypertension
Speech Apraxia
And about 30 more labels or diagnoses.

Not a single one of the 40+ diagnoses Alli carries can define who she is today.  And  most importantly, not a single one can limit what God has done, is doing, and will do in her life.  I mean she weighed 14 ounces for crying out loud!  Words written or typed in a medical file will not command her future.  He does.  Through the grace and mercy of God, our girl has defied all odds from day 1 and we declare that she will only continue to do so.    

Cerebral Palsy is a very broad category.  I for one didn’t realize how broad until I began researching.There are varying degrees of what CP means, but it most definitely doesn’t mean….




….that she’ll never walk

….that she’ll never talk

….that she’ll never eat

….that she’ll never have a “normal” life

She’s Alli Grace. 

She’s a miracle. 

She’s an utter joy to know. 

She’s the happiest baby on the block, hands down. 

She’s going to shake this world up for His glory!  

And in the words of one crazy friends, "CP, we're coming after you!"




  1. I am also the parent of a micropreemie, but before that I was the daughter of a pediatric physical therapist. That meant I knew and was friends with many many kids with CP. They are not a diagnosis much like Alli will never be a diagnosis. These kids are now spouses, parents, college graduates, a lobbyist, a soon to be PGA professional, a writer, and many other amazing "labels." This was all before botox, lengthenings, sophisticated SMOs and AFOs and ipad apps.

    The biggest thing that these kids have in common are families that never defined them by their diagnosis, never had pity, and always believed that they could do anything.

    You are doing amazing things for Alli. She is already doing great things and she will continue to shine. She has a whole world to take on.

  2. Jackie,
    I just read your post with Alli's diagnosis, ironically after I was looking at pictures of my niece skiing. The pictures are extra amazing because my niece is a former 28 week twin with Spastic quadriplegia cerebral palsy. She is wheelchair bound but that doesn't keep her from doing anything, including skiing. She just skis a little different than you and I but is an inspiration to everyone who sets their eyes on her. All of the Alli's in this world are here for a reason and her diagnosis won't keep her from accomplishing anything in life. With you as her Mama I know it!


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