I have been thinking for a long time how or even if I wanted to post about my journey as a mom of a child with Spina Bifida. I go back and forth on wanting to keep it private and wanting to share it with the world. Ultimately I decided to share (at least parts) of my journey for a couple reasons. 1) I remember when I started this journey scouring the internet and reading blogs of moms with kids of Spina Bifida (which I will often abbreviate SB); hoping to find some sort of clarity. I hope that my posts can help even one mom/dad in some way. 2) I know a lot of people are just plain curious about what it's like and I want to try and give them a little look into not only the good, but the bad/ugly as well. Let me be honest it isn't all sunshine and roses, but is it ever with kids really?
Lets start from the very beginning (over a year and a half ago now!) to the day we found out little K had SB. I can't believe it was really that long ago now, but I still remember the day. I will call this the day we boarded the airplane for Holland. If you haven't read the poem yet I have linked it for you. Unlike the poem we knew that we were going to Holland very early on it was not a surprise at his birth. Not to say it wasn't a surprise when we found out, but we did have months to think it over and plan as much as we could. So lets talk about "The Day".
It was just a few days prior I had had my 20 week ultrasound/anatomy scan.
* As a note in the military you typically only get 2 ultrasounds when your pregnant, 1 at 8 weeks to date the pregnancy and 1 at 20 weeks to do a full anatomy scan to check for any potential issues. *
I was working in clinic just as I would on any other day when I got that fateful call. The OBGYN called and said you need to come in ASAP so we can talk. Then came the three little words NO expecting mother wants to hear "There's some concerns." Yeah not the 3 words you typically think of when I said those 3 little words right? I had about 2 hours left in clinic until I could make it over to see her. Those 2 hours were agonizing, I went from best case scenario to worst in my head. Did they just miss something in my scan and need to re do it? Is my baby not going to make it? I was literally shaking I was so nervous, I couldn't think straight. Honestly I felt sorry for my patients that morning as my head was only half in the game, if that.
As I sat in the waiting room I felt numb. My brain was racing a hundred miles a minute yet I was frozen all at the same time. As I walked back to the room to talk with the midwife (as I found out later the high risk OB was out of town) I felt like time had stopped for just a minute. I sat down and she looked me in the face and didn't waste anytime getting to it. I don't remember the exact words as I think I blacked out a little, but it went something like "We have some "concerns" there is evidence that your baby has club feet, the ventricles are enlarged, we see the lemon sign and there is evidence of spina bifida." You guys it was like glass shattering with every problem she mentioned...your baby has club foot *glass breaking*, the ventricles are enlarged *glass breaking*, we see the lemon sign *glass breaking* and the biggest one of all we see evidence of spina bifida *whole room of glass shattering*.
Honestly I don't know what my face look liked all I remember is just breaking down and bawling, just the biggest ugly cry you can imagine. I honestly didn't even know what half those words meant, but all I knew is that it can't be good. I am thankful that they sent me home for the day to pull myself together because I don't know how I could have gone back to work. The next few days were some of the toughest days I can remember. I couldn't get any official diagnosis until I met with the high risk OB and she was out of town until the following week (like 5 days) yes FIVE whole days with no official answers to any of these questions.
So this was the start to it all. We had to get off our plane to Italy and change flights to Holland. We were scared, confused and honestly really sad.
Stay tuned as our journey continues...
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