It's been a year... 365 days... 12 very short months, since Jackson and I underwent fetal surgery. To my amazing Jackson, happy 1st "butt"day my little love! We will always celebrate what this day means: hope, strength, and love. We will never be able to repay our family and friends for all that they have done. Without my parents, Matt's parents, and of course Matt, Jackson and I wouldn't have been able to have the surgery. I could never say thank you enough to my mother-in-law and my parents for sitting with me day in and day out. They cooked, did the grocery shopping, cleaned, and in general kept me company for 10 weeks. On the days when I had an ultrasound, they would even sneak me to a restaurant so that I could curve whatever craving I was having at the time. :)
I will go ahead and warn you, I included a picture from the surgery on this post. It isn't gory gross, but it also isn't sunshine and flowers. :) This is the first time that I am posting a picture of Jackson's scar. For the most part, only family members have seen his scar, but I feel it's time to show everyone. His scar can be hard to look at, but to me, it's beautiful. When you see it, please don't think "Oh poor baby," I assure you that he isn't letting it get in his way of anything.
Why do we call it “Butt Day?” The day we had fetal surgery, they cut into my uterus to get to Jackson's back to close the opening in his spine. His adorable little butt was shown to the world while they performed the surgery and then tucked back into the womb to be born again later. In the Spina Bifida community we celebrate this day. It is a miracle that fetal surgery exists. We are so grateful for the talented team at Vanderbilt Children's Hospital. Without them, Jackson's story could be dramatically different.
I will be the first one to admit that I have been struggling with my emotions lately. As I got closer to this day, I found myself having very vivid flashbacks. I often find myself tearing up, if not just completely breaking down. My emotions are still very much raw.
My biggest fear was something going wrong during the surgery. I was so scared about waking up and being told that Jackson had to be delivered for whatever reason or that he didn't survive the surgery due to the stress that it put on him.
I remember rubbing my belly and telling Jackson that he had to be strong the entire time that I was being wheeled to the operating room. While the anesthesiologist was putting me under, the last thing I said was, "Love you baby boy."
When I came to in the operating room after the surgery, the first thing I did was ask Sarah, the nurse, if Jackson was ok. When she told me that everything went perfectly and that he had a strong heartbeat that didn't change the entire time, a huge weight lifted off of my shoulders. My fear went from losing him to doing everything possible to keep him "baking" for as long as possible.
A year later, we have an almost 10 month old that has a contagious laugh, a sweet smile, and the most beautiful eyes. He is so determined to do things and has reached his milestones - some on time, some a little late, and even some a little soon. He babbles up a storm, ALL DAY LONG and loves to play with all of his toys. While he doesn't have felling or movement in his ankles or feet, he sits up like a champ and is so, so close to start crawling. He loves music and even likes me singing off key and dancing like a crazy lady. We read daily and he's found that books taste extremely good! He loves to pet his fur siblings and gets sad when they walk away. He has the best personality and is the biggest flirt with the ladies. If only I knew then what I know now! I wish I could have seen into the future, to see how wonderful Jackson is doing and how amazing he truly is.
I've been asked several times if I would do it all over again - Yes, definitely! It wasn't easy by any means and it was very scary, but Jackson is worth every tear that fell, every fear that crossed my mind, and every ounce of pain that I went through. Jackson deserved every chance that was offered with the surgery.
My hope for this blog has always been to hopefully give a newly diagnosed mom/dad the hope that they so desperately seek. We've been in their shoes and it was so hard. I hope that Jackson's story will shine some light on an otherwise dark time. So, to you, the parent that just received the news that your child has spina bifida, or whatever diagnosis you received, everything will be ok! Your child will absolutely amaze you. One day, like so many of us, you will look back on this time and wonder why you were so worried. You will find and feel a love you have never felt before the first time that you see your child. Remember that you aren't alone. Reach out to others. You are part of a family that no one really wanted to become part of, but we are all here for you. On the days that you struggle with keeping the hope alive, seek out the pictures of our children. There's no way to be sad when you look at pictures of all of our smiling and happy little ones. Remember, your child's diagnosis doesn't define them!
With love,
Crystal and Jackson
A year later, we have an almost 10 month old that has a contagious laugh, a sweet smile, and the most beautiful eyes. He is so determined to do things and has reached his milestones - some on time, some a little late, and even some a little soon. He babbles up a storm, ALL DAY LONG and loves to play with all of his toys. While he doesn't have felling or movement in his ankles or feet, he sits up like a champ and is so, so close to start crawling. He loves music and even likes me singing off key and dancing like a crazy lady. We read daily and he's found that books taste extremely good! He loves to pet his fur siblings and gets sad when they walk away. He has the best personality and is the biggest flirt with the ladies. If only I knew then what I know now! I wish I could have seen into the future, to see how wonderful Jackson is doing and how amazing he truly is.
I've been asked several times if I would do it all over again - Yes, definitely! It wasn't easy by any means and it was very scary, but Jackson is worth every tear that fell, every fear that crossed my mind, and every ounce of pain that I went through. Jackson deserved every chance that was offered with the surgery.
My hope for this blog has always been to hopefully give a newly diagnosed mom/dad the hope that they so desperately seek. We've been in their shoes and it was so hard. I hope that Jackson's story will shine some light on an otherwise dark time. So, to you, the parent that just received the news that your child has spina bifida, or whatever diagnosis you received, everything will be ok! Your child will absolutely amaze you. One day, like so many of us, you will look back on this time and wonder why you were so worried. You will find and feel a love you have never felt before the first time that you see your child. Remember that you aren't alone. Reach out to others. You are part of a family that no one really wanted to become part of, but we are all here for you. On the days that you struggle with keeping the hope alive, seek out the pictures of our children. There's no way to be sad when you look at pictures of all of our smiling and happy little ones. Remember, your child's diagnosis doesn't define them!
With love,
Crystal and Jackson
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