Health

The American Scheme

Preface

Before I dive into this topic I feel something needs to be clarified. There’s this misconception in the special needs community that all of our stories need to filled with hope and joy and a light at the end of the tunnel. That everything we write about should be rays of sunshine. And oh yes we had a little struggle but look at how amazing everything is now and how much we have over come! I’m here to call bullshit. Not every story has a happy ending. And our stories certainly don’t just begin and end with one struggle we have overcome. There’s a lot more to the journey that is the life of a medically dependent or special needs child and it’s full of constant battles that never allow us to come up for air. And yes. Maybe we will have a happy ending and win the war. But that doesn’t mean I’m going to tell our story in a way that makes you feel all warm and fuzzy inside. So here it is. Here’s just a sliver of one of our current realities.
Don’t get me wrong. I’m not saying there are no happy endings and that we aren’t filled with amazement and happiness for everything our son accomplishes and endures. We are beyond luckier than most families in our position and are often far better off with our incredible support network. What I am saying is just as anyone who has lived this life. Happy endings and fuzzy feelings are not a constant.

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Hospital

So I’ve been in the hospital for 4 days having an adrenal crisis after a recent diagnosis of Addison’s disease. It’s been hell to say the least being stuck in a tiny room while my son is home sick and my daughter experiences her most stressful week before her big show and my husband tries to juggle it all. So as per usual I take to writing to get my feeling out. I call the below “Hospital”

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The Aftermath: Every(one)thing Changes

The second you get your baby in the car for the very first time.

Everything Changes.  Every Facet of your life.  You have made it.  No more driving back and forth to and from the hospital, no more eating only whats close by, no more alarms giving you heart attacks, no more cave.   You have been reintroduced to sunlight.  Your baby has been introduced to it for the first time.  Everything is a shock factor and everything is a first.  Even for the parents…

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A MicroPreemie Story: After the Storm

It’s been over a year since my last post.  If there’s anything I have learned about prematurity it is that even after the NICU everything is a fight.  A lot has changed.  We have moved, Beckham has grown, I am working again and the fight continues for his health, always.  I’ve had to regain myself.  Give myself time again to be me, to do the things I love.  Slowly but surely I try to when I have the time but still feel I have a ways to go.  There are so many new things I want to write about as Beckham grows but I want to finish his story in the Nicu as well.  So I plan to do both as we go along.  I will have the NICU series labelled separately and also write about the now with some flashbacks of what has been going on since we left the NICU almost 2 years ago.  It’s hard to believe it’s been that long.  Seems like yesterday.  So, lets begin with where I left off from my last post “From Hope to Horror”.

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A MicroPreemie Story: From Hope to Horror

It’s been three months since I started this blog post and 16 months since the next part of this story.  I haven’t been able to wrap my head around writing about this experience.  It was the worst day of our family’s life…

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Beckham’s Story : on CNN

Our Son was featured on CNN today enabling us to share our story with the world!  We are over the moon to share is story of thanks for the NICU staff and everyone who has helped us and also as awareness for premature birth!

The story can be found here:

http://www.cnn.com/2017/03/14/health/nicu-preemie-baby-hospital-poem/index.html

 

A MicroPreemie Turns One!

So I’m going to interrupt the telling of my sons story to share something that I have written for my son and everyone that worked with him in the NICU and out of the NICU over the past year.  It’s hard believe he is here and he has reached the age of 1 (8 1/2 months adjusted).  It’s a long poem but his story has not been short and every bit of it has gotten him here to this day.  Happy Birthday little man and thank you to everyone that has helped us get to this point!

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A MicroPreemie Story: The Honey Moon Phase

After the dust had settled from the day of Beckham’s birth reality began to sit in.  We started reading up vigorously about micro preemies, percentages, what to expect, other peoples stories and more.  Regardless of the percentages as I read other moms stories of their micro preemies I began to feel a bit of relief and maybe even an ounce of hope.  Stories of people that we knew flooded in.  People that were preemies, or knew someone with a preemie that had survived and was doing fine.  All of this time we didn’t know any of these stories about our friends or their friends and relatives and now we were learning so much about them.  The hospital had a library where I found a few books on prematurity and what to expect as well as real stories from the NICU.  As we read through these stories we found the majority of them the babies had 1 or 2 issues and then were fine.  It was reassuring and I hoped this would be the case for us.

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A MicroPreemie Story: Day 0.1

In the NICU there is no future, there is only present. It’s important for parents to adjust to this mindset of not being able to plan for their baby’s milestones or going home date because it will only lead to more and more disappointment.  Easier said than done. As a project manager this was one of the toughest adjustments for me being in the NICU. I am a person that likes complete organization, to have things planned out and if anything changes all hell breaks loose. How can I not think about my baby’s future?  Honestly, a tough adjustment mentally but emotionally it was easy. If I began to think about what the future held for my baby I would just start crying, so essentially it required me to create a mental block and focus on the now.

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