Surprisingly, not all of our Shells are inspired after women; at times, they are named after a special man or boy in our lives. The Adrian Shell came from one of our Design Team members, who was inspired by its beautiful blue material that matched her nephew’s eyes. Adrian has a very special story of his own and in honor of National Spina Bifida Awareness month we have decided to share his story.
Here is Adrian’s story written by his mom, Chelsey Ulibarri:
The day we found out that Adrian had Spina Bifida is a day I will always remember as if it were yesterday. It was the day after the Super Bowl. My boyfriend and I were so excited because this was the day we were hopefully going to find out if we were going to be having a little boy or a little girl! After the ultrasound was completed the nurse had simply stated she needed to make a call and disappeared for a long period of time. The first 5 minutes felt fine but as time passed I was able to sense that something wasn’t right; when the nurse finally returned she passed the phone to me and told me they wanted to talk to me. My heart instantly dropped and every bad thought imaginable flooded my head to the point that I was only hearing every other word the woman was saying. I had never heard of Spina Bifida until that moment and was unclear what it meant and how it was going to impact my baby’s life as well as mine.
That same day we were sent to a high-risk clinic to meet with a geneticist. She began to explain to us what Spina Bifida was: a birth defect of the spine. Think of a zipper. You zip your jacket up to the top and there is a bubble where the “zipper” is no longer connected; essentially that is what happens to the spine on a baby with Spina Bifida: the spine never fully develops. That’s how it was explained to me and that is still how I explain it to this day.
The day I went into labor was the third scariest day of my life because I didn’t know what to expect when my son was born. Like most Spina Bifida births, our delivery would be via C-section, as this method is safer and less traumatic for the baby’s opening in the back.
When Adrian was born, all I heard was a brief cry and then he was gone. He was immediately taken away for evaluation. I wasn’t able to hold Adrian until 2 days after he was born; I relied on pictures that my boyfriend and family members would show me since we were at different hospitals. For any parent I am sure you can understand that this wasn’t easy and I had a hard time dealing with it all.
We spent our first month at Primary Children’s Hospital in Salt Lake City. Adrian underwent major surgery and was having trouble with his breathing. We spent every day there with him from morning until night; I couldn’t tell you the amount of tears I cried watching him go through everything in that first month. We ended up being allowed to go home with oxygen support but that only lasted 2 weeks before we were back at the hospital due to his having excessive fluid in his brain. He underwent another surgery to have a shunt placed in his brain that he will now have for his entire life.
Adrian had to have multiple hospital visits which included an additional surgery at 8 months old. He had to be catheterized at home and was dependent on oxygen for a long time.
Adrian’s level of Spina Bifida is an L4-L5. Adrian cannot feel from the knees down and was born with clubbed feet,Ad which will have to be operated, and he’ll get a series of castings to help correct them.
Due to the lack of sensation, Adrian cannot walk alone but does have a walker and leg braces to assist him; at this point in the game I think this is what is hardest for me. My son has the most vibrant personality with so much energy and it kills me to see him watch other kids running or climbing knowing that he has a desire to do these same things.
It hurts because from the very beginning of this journey I have felt the guilt that it is somehow my fault that my son has to go through all this. As a parent you want to take the pain away from your child but in some cases you can only put on the front that you’re strong because hopefully that will make your child just as strong; but our children are stronger than we think.
I see my son looking at everybody as if he is missing out, but the reality of it is my son knows no differently and has learned to adapt to do the things he wants to do. I remember when Adrian had his leg correction surgery and I had been crying, he woke up and the first thing he said to me was, “Why you crying, Mom?” He has never let any of his life moments get him down and I have never seen my son truly sad. My son’s spirit has been what has kept me going; he has changed who I am and my outlook on life and is the prime example of happiness. Because he is strong, he has made me strong.
I wouldn’t change anything about my son, because I firmly believe my son is who he is today because of the things life has thrown our way; I am where I am in life because of what we have experienced. Our life has proven to us that adversity is truly a blessing in disguise and although our journey has only begun, our optimism will keep us going.
To this day nobody is completely sure what causes this disease. Scientists say it is most likely due to a combination of inherited (genetic), environmental, and nutritional factors. Many believe not having enough Folic Acid during and prior to pregnancy increases your chances of a child having Spina Bifida. If you would like to learn more about this increasingly more common birth defect please visit www.spinabifidaassociation.org.
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