We See, She Sees; We Hear, She Hears; We Walk, She Walks
My story starts when my beautiful daughter was born premature at 29 weeks. Her weight at that time was around 2 1/2 lbs. My daughter was a twin and her brother passed away after 5 days of the critical stage, which the doctors had warned us. Unfortunately this happens quite often when twins are born prematurely. After the critical stage had passed, they started noticing that she wasn't developing or moving as they expected so they performed an MRI and discovered that she had brain damage.
They categorize brain damage on a scale of 1 to 4 with 4 being the most severe. My daughter was a 4 which meant she had damage on the right side of her brain which limits the use of her left side, affects her speech, and gives her sensitivity to her legs and arms. She ended up spending 67 days in the NICU (neonatal intensive care unit) and was released when she was around 4 lbs. Since the moment of her release, she has been through twelve surgeries and all the doctors informed us she was going to be a non-responsive person.
We were young parents and there was no manual to tell us how we were going to handle this situation, but in that moment, my wife and I decided that if we can see she can see, if we can hear she can hear, if we can walk, she can walk, and so far that is what we have done. Now she is 22 years old and we have taken her to every single activity we can and we do not see her as having any limitations. We just try to make her life as normal as possible and just this year I decided to do what Dick and Rick Hoyt have been doing.
Normally I am a cyclist, but I decided to start doing triathlons and marathons. During 2013, I have completed two triathlons and 10 or 11 marathons and my wife has also been running and completed her first marathon with our daughter about 2 months ago. We also have a 13-year-old son who has been practicing swimming, so hopefully we will have the whole family doing a whole triathlon. During the past 22 years, my daughter has suffered through many surgeries. The last one was 2 or 3 years ago and they had to open her back and insert two titanium rods from her neck to her lower back to help correct her Scoliosis created by the damage of the brain that pushed her to bend her body.
We have to keep a close eye on her always to make sure she is not having any complications and also because she has seizures, which she is currently taking 4 different medicines to control. But, we do not let that stop us from making sure that she is truly living and enjoying life. We take her on motorcycle rides, horse rides, boats, and whatever else she is capable of doing with us as a family.
If she can't do something, as a family we will not do it. We have a very close bond. She trusts in me and I make sure she feels safe. There are very important things that I have learned through this. First and foremost, NOTHING IS IMPOSSIBLE. We have been told several things from the doctors, such as your daughter will not be able to do certain things and probably will not survive past her toddler years. My daughter is a fighter and she has taught me strength. She has taught me that the word "No" is not part of the vocabulary and that you have to keep fighting and not give up. Whenever I feel like giving up, I think of my daughter at home and will not allow myself to stop.
There have been times when we are running together in the marathons and I am getting tired and I start slowing down and my daughter notices and she looks up at me and smiles and I feel so good. Although she can't verbally speak her soul speaks to my soul and it makes me know that I can't give up!
22 years later our beautiful daughter Carolina is still fighting beyond what the doctors said she would be!