Gabriel was unlike most children. He was born with a cleft lip and palate, had a hole in his heart, enlarged kidneys, and was perceived to be deaf and perhaps blind. He could not eat without a tube down his throat and he needed oxygen most of the time… one month before he died…..
My son, Gabriel has trisomy 13. Trisomy 13 is a chromosomal disorder of the 13th chromosome. Instead of having 23 pairs or a total of 46 chromosomes, he has 47 because he has 3 chromosomes 13. What does this mean? It means that from the time of conception his genetic make-up is altered.
Trisomy babies have a very low survival rate because they just were not made the same way. Ailments include, heart conditions, kidney problem, recurring respiratory infections, gastro-instestinal problems, poor eyesight, poor hearing and other conditions.
Less than 10% survive beyond age 1.
Trisomy babies are normally expected to have low birth weight. But Gabriel was born 6 lbs and 15 ounces, my biggest baby so far. I bought him a few preemie clothes thinking, he would be tiny, but none of them fit. He didn’t have a crib; he didn’t have toys and had a very limited wardrobe because we were told not to expect him to live. Gabriel is 8 months old today and has lived long enough to know that he is loved dearly.
But life is not easy for him. Things we take for granted, like breathing and eating is difficult for Gabriel. He is very susceptible to respiratory infections, he needs oxygen at all times. He has a condition known as G.R.E.D, which prevents him from eating normally. He has to be fed through a tube in his mouth.
But we try to make his life as rich as possible. Since he was in my tummy, he has been listening to music, mostly classical music for babies, nature sounds, nursery rhymes and Christian music. To be sure, he “feels” the music, we place the speakers face down on his mattress or against his pillow. He is surrounded by black and white toys, including flash cards his grandma made just for him. We read to him – nursery rhymes, children’s books and the Bible. I encourage his caregivers to sing to him and talk to him a lot. Like any baby his age, he coos a lot, when he is well.
Considering that many trisomy babies don’t make it pass a few hours or a few weeks, I feel blessed that I have had the pleasure of cuddling Gabriel in my arms for many months now. I have seen the joy on the faces of my two girls, Maxie, 6 and Nadine, 3 when they see Gabriel and play with him. Despite our odd circumstances, Gabriel has lived long enough for us to become a family.
We don’t know what life has in store for him. When you have a baby who is fighting for his life and is constantly stricken by yet another infection, you pray for his health and comfort. You don’t want to see them suffer and yet you want one more days, one more year, in fact, a whole lifetime to be with them.
I believe in God and I believe there is a purpose for Gabriel’s life. He was not expected to live and yet he is living. I never thought I would have all this time to hold him, to curl his hair in my fingers, to close my eyes and get lost in his scent or to see his big eyes stare at me and look around his room as long as I have. Every day is a blessing; every day is one more day with my precious son.
Have I discovered the purpose? I don’t know. Maybe, Gabriel’s presence is simply God’s way of telling me, that He is the giver of life and that for now, He chooses to leave Gabriel in our care. If I were to look deeper, then perhaps God is also telling me that there are a lot of other kids out there who are not as ill as Gabriel but because their parents do not have the financial resources to give them medical treatment, they may be physically or mentally impaired for life.
Is it possible that God opened the door for me to have an educational toy store so I can help Gabriel and a lot of other kids like him? I’d like to think so. I am setting up my company in such a way that a part of our sales go towards aiding children in need. I’d like to be able to help more kids get a better education. I’d like to see 6-year old public school kids reading. I’d like to provide great benefits for my employees so they can be better parents. My son’s fight for his life has inspired me to keep on pushing…keep on striving to achieve all these things.
Can I do it all? Probably, but not all at once. But like we do with Gabriel, we take one day at a time. If he is healthy today, we are happy. Some day, I know I will have the satisfaction of knowing that there are a dozen or so healthier kids or a few more 6 year olds who learned to read, because we took the time to give them something we had. And when Gabriel is gone, I will have the pleasure of knowing that this person, my son has taught me so much and that through him, others will live and learn.