Tuesday, September 17, 2013

This is probably the hardest post for me to ever write and I have to admit that I've been delaying, along with many other things I need to do.  I’ve been trying to give myself time to absorb our latest diagnosis.   Time to settle into our new home, our new town, state, everything and make a battle plan for our daughter.  It’s been hard enough fighting the difference in insurance from state to state and finding the right services.  I thought those were going to be the hardest things I had to deal with these day.  Part of me doesn't even want to share the ugly truth of where this has put us, because it’s been a dark place these last few days and writing it somehow makes it real.  It forces me into a place I’m not comfortable and pulls me out of the denial that I allow myself a few hours each day in between the suffocating, can’t swallow, every wall caving fear of what her life will be like.      

But then the other part of me knows there is someone somewhere who has or will follow our journey and they desperately need to hear the good, bad, and ugly.  I’ve always shared our journey to show two things; 1) glorify our God for what He brings us through and 2) in hopes that someone out there can read our story and gain even a glimmer of hope for their child.  That is really why I started blogging and The Saving Grace Project in the first place.  Alli has a story that deserves to be shared.  All of it.  Not just the good days when she’s crawled over and pulled herself up to her walker at almost 3 years old.  But the bad and sad days too.  All of it.    

So here goes...after thinking we had heard the worst part of Alli’s diagnosis (cerebral Palsy, significant brain damage, your child will likely never eat, walk, or talk on her own)…I mean really, how could it get worse? 

Side note:  I know that it can be worse, but for the time being, humor me and put yourself in that position and realize, we don’t get a break.  We haven’t received a break.  We’ve fought one battle after another.  And we’re tired.  Almost three years down this road, one would think we’re fine or we’re use to it, but you never ever want these things for your child.  You never ever get accustomed to it.  Or at least we haven’t.  Some of you are with me now….right now and know that feeling all too well. 

Best case scenario…..she continues improving and will one day be able to eat, walk, and talk. 

Worst case scenario……she’s never able to do any of those things and a host of other issues I can't even bear to mention. 

I’d be lying if I told you once home, I spent the next few days crying.    

Every single day.

The evening and morning prior to meeting this new neurologist, I had prayed for strength and a warrior spirit that would allow me to rebuke and handle any words or feelings that were coming at me, at my daughter.  One of the things I NEVER like to do is cry in front of a doctor.  And thanks be to God’s grace, very rarely have I ever.  He’s always been good like that and held me during those moments when the most horrific news is coming down on us.  Be it life or death.  Because we’ve had more than our fair share of those conversations.  Or be it with dealing with brain damage, PVL, Cerebral Palsy, her quality of life. 

The truth is, I should just be happy she’s alive. 

I get that argument.  I’ve had people say that to me.  I have.  So to set the record straight, I thank my God every day He let her stay here with us. 

I do. 

But the reality is I want more. 


I want it all. 


Any normal parent in the world would want it all.  Want the best for their child. 

I don’t want her to continue to struggle.  I don’t want to spend our days in therapy and with various doctors. 

My big girls, our precious big girls……their lives have turned into 

And it sucks, it really really sucks. 

I said it. 

And I think I’ve earned the privilege to say that.  We’ve held on and have been strong for so long.  We’ve sat by and cheered our other friends on who have kiddos much like our Alli, but whose kiddos have gone onto to defy the odds.

We’ve wholeheartedly cheered them on.  We couldn’t be happier for them.

But our baby has not.  And we want nothing more than to see her do all of the things a normal child would do. 

There are times we blame ourselves, albeit unnecessarily, but we do. 

Have I done enough?  Could I do something different?  What am I doing wrong?  Why are there babies like her who have beaten the odds, who are walking, talking, eating??  Why me?

Yes, I’ve played the why us, why Alli game these last few days. 

Because denying ourselves those moments to mourn is not healthy.  It’s not. 

So we have. 

We are.


We’ve never ever ever allowed ourselves that moment. Not even when she was on life support for almost 3 months when I should have still been pregnant.  Or now as she scoots close to being 3 and we begin facing the challenges of raising a disabled child when we thought we would be raising 3 healthy girls.      

We’re not for a single second ungrateful for her life. 

We don’t think for a single second God has left us or forsaken us.  The enemy has not stolen our joy, although he fights hard daily for it.  We truly believe God is not finished with her yet. 
But what if He is finished and this is our life, her life?  What if her testimony is to be walked out disabled? 

We still need this time to mourn who we thought our daughter would be.  What kind of family we thought we were going to be....because I can tell you, this isn't what I thought my life would look like when I became pregnant the third time. 
We have a beautiful life.  Three beautiful blonde lives that invade our soul each day.  Each of them worth every single drop of pain.  We're equally proud of and blessed by all 3 of them.  We're even more blessed and proud that Alli is as active as she is.....loving to crawl and walk beside us holding our hands.  That's an amazing feat given her medical history.  And it gives us a glimmer of hope. 

We know we march forward with even more strength and faith than we began this journey. 

And that's the good news. 

"For His anger endureth but a moment, and in His favor is life; weeping may endure for a night, but joy comes in the morning."  Psalm 30:5


1 comment

  1. Yes, Jackie, it is healthy to mourn. And reading this post, I mourn with you. Love to you and your family! Your honesty and strength and faith are amazing. I'm praying for that big break to come for you and your girl.


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