I wanted to write down Grey's story...from the beginning. For those of you who are just meeting us, and for those of you who are just curious. :) So here it is...
Andy and I were elated to find out in early June of 2008 that I was pregnant. Right away I knew that I would want to find out if we would be having a boy or a girl. We both secretly (ok, maybe not so secretly) wanted a boy. :) But would, of course, be so excited for a girl as well. The 19 weeks leading up to the ultrasound were fairly uneventful. I had a few epsiodes of morning (and night) sickness but otherwise felt pretty good. We had 4 quick ultrasounds in the first four and a half months before "the big one" and everything had looked great. We saw our little baby swimming around in there and couldn't be happier!
September 24, 2008
To say that I was a ball of excitement is an understatement. There was no eating for me that day, or really anything else for that matter. All I could think about was the ultrasound that was scheduled for that afternoon. I, in no way thought that anything would be "wrong" with our baby, the thought didn't even cross my mind. The appointment was at 1:00 that afternoon and I picked Andy up at work beforehand so that we could ride together. He was just as giddy as I was. :)
As the ultrasound technician started, she asked if we would want to find out the gender if the baby was cooperating..."YES!!!" Right away she was able to see that we were having a little boy. Tears of joy streamed down my face as I imagined our son. Who would he look like? What color would his eyes and hair be? I really wasn't paying too much attention to the rest of the ultrasound, but I did notice that she was taking quite a few pictures of our little man's head. This was our first baby, so part of me thought that that was just the regular protocol, but there was a part of me wondering..."is something wrong?"
After the ultrasound, we had a quick appointment with the doctor. Basically he came in and asked how I was doing and then we were off! Since neither of us had eaten lunch (the excitement had seriously gotten to us) we decided to quick stop by Wendy's before taking Andy back to work. While we were in line at Wendy's my cell phone rang...Dr. LaGrand's office it said. In that moment I knew that something wasn't right. The nurse just said that the Dr. wanted to discuss something with us and he was hoping that we would be able to come back in. I remember asking her "is it really bad?" I don't however, remember what she said. We were both a wreck as we headed back to that office. To that little exam room where just minutes earlier we were floating on air.
Dr. LaGrand came into the room and his first words were "This isn't good. This is not what we want to see." He then went on to explain that our little boy's brain was shaped like a lemon and that it had extra fluid. We had no idea what this meant. He said that it could be some sort of chromosomal problem, or more likely it could be spina bifida. He explained that they didn't see any abnormality in the baby's spine but wanted to send us to a specialist the next morning.
That night was awful. We searched the interent for "lemon sign" and "spina bifida" all night long. Finding nothing but negative stories and horrible outcomes. Going into the specialist office the next morning, we were hopeful that Dr. LaGrand was wrong, and that everything would be OK, knowing in our hearts that it wasn't.
Right away, the ultrasound technician started with the spine, and right away we could see the defect. The spine is supposed to look like a zipper that has been zipped. Our little guy's looked like a zipper that was zipped up top, but not on the bottom. I knew before she even said anything that he had spina bifida. I immediately started crying and praying that this was a dream. AS upset and scared as I was, I almost instantly felt understanding and peace. I understood that my little boy would have challanges and felt peace that God would lead us through them all.
Over the next few months, we tried to become as familiar as we could with spina bifida and with what our new challanges would be. I went online and "met" many families and children who are living with SB. The conversations that I had with those moms lifted my spirits and gave me peace. They will never know. We met Nate and Emily Bush who have since become some of our closest friends. God put them into our lives when we needed them most. And most importantly, had it not been for my family, those few months could have gone a very different way. They were all so positive and encouraging. My parents told me as often as they could that they would be there for us and help us every step of the way. My sister went shopping and registered with me. She made sure that my pregnancy was as "normal" as possible. They reminded me everyday that yes, my baby may have spina bifida, but he is still MY baby! I will never be able to tell them how much their positive attitudes, love and support meant to Andy and I.
Looking back at that time now, I just smile. Smile because now we have our beautiful son and I wonder what I was so worried about. The second I heard his sweet little cry every single worry that I had just vanished. God has shown me what true love is. He has shown me just how much he loves me , by trusting me with this sweet miracle. A sweet miracle that we named Greyson.
To Continue with Greyson's story please visit our other blog HERE.
Leigh,
ReplyDeleteThank you so much for taking the time to write out your story. It is helpful for me to hear that you did experience some of the same emotions we are having right now. Yet, encouraging to see just how well Mr. Greyson is doing and how you explain that as soon as he was born your worries subsided.
Thankful to have examples like you on this journey a few miles ahead of us!
Katie
Leigh, that was beautiful. I am so glad you wrote out Grey's story. It is so inspiring. O.K., I need to go get a Kleenex now.
ReplyDeletePerfect. Beautifully written. I love it. And yes...I'm crying. lol. What is it about becoming a momma that makes you CRY AT EVERYTHING! I cried watching "The Princess and the Frog" with Jet last night. sigh. Well this is a better reason to cry than a disney movie. :) Love you. Love Greyson. You know he's my little guardian angel. And I'm so glad to read his story.
ReplyDeleteYour story and blog always makes me cry because mine is identical and it brings me back to that day. Your spirt has gotten me through all of this, and given me so much peace. I look up to you and am so happy to have met you.
ReplyDeleteOur son also has SB. My ultrasound tech pointed out that his lesion level was located at the top of the spine. Immediately we saw his defect. My partner held my hand as she explained more about his disability. I was not eligible for FS because I was having twins (automatic disqualification). Our little guy and gal were delivered at CHOP in the summer of 2016. Today they are approaching 2. Based on what I’ve seen during physical therapy sessions I think that his lesion level is T12/L1. Originally we were told that it was L3/4 however SB is a snowflake disability with no guarantee. He functions worser at a higher level than initially expected however he’s a hoot funny. Like his twin sister. They love to keep us on our toes.
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