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.
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.
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.