parenting

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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1:27AM – January 19, 2016

1:27 AM.

January 19th 2016. The time stamp on the voicemail of my phone.

The Call I missed by one second.

The moment I glanced at my phone to see it was our surrogates call I just missed.

The second my heart plummeted to the floor knowing whatever she was calling for was not good.

The ding my cell phone made indicating I had a voicemail.

The unsteadiness of my hand as I went to click on the message while holding my breath.

The pain that overcame me when she started speaking crying that she was bleeding and going to the 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:The Birth Day

I have been debating in my head over and over how and where on earth to start with my blog again, especially with all that has happened over the past 6 months.  Honestly, I still don’t even know.  Everything was going well for us.  We just had a nice birthday party for my husband over the weekend with friends and family. My health was about as good as it could get, careers for my husband and I were great (and still are), our daughter well… she’s always great, and our son was on track, looking healthy in the womb.  Our surrogate was doing everything right.  Eating healthy, moderate excersize, vitamins etc. She was sending us weekly photos of her belly growth so we could save them and see him grow.  We recorded all of our voices reading books to him so she could put headphones over her belly and play them for him as he was around the phase where he could hear.  A countdown to baby chalk block was centered on our kitchen table as we all took turns changing the number of days each day. We had yet to feel him moving in her belly but she said he was a big kicker.  Kicked her 24/7.   Everything was perfect.  We were set for a follow up appointment January 19 at 8 AM with ultrasound to check on how our little man was developing.

January 19 he would be 24 weeks 5 days.  Just over the half way point.

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Parenting in pain (and other life choices)

I am often asked how I manage being a parent while being in pain or sick etc. I am asked if I would have known about my illness before being pregnant would I have decided to not be a parent?  I am doubted by many on what I am able to handle with my disease and often held back from doing the things I want to do or accomplish in life because of the doubters. My response is often that you only live once. Being sick should not hold you back from the things you truly want in life or the things in life that will make you happy. Happiness is hard to come by, often, when you are in pain and ill. So we should cherish the moments of happiness every chance we get.  Continue reading →