My baby. My beautiful baby boy. Oh, if only I could get past the devastation done to his little face ... I am trying to see the beauty in him, but it is difficult.
Xio Nikolas was born a month ago, weighing a healthy 6 pounds and seven ounces. He was small, but he has all four limbs, ten toes, and ten fingers. His face, however, is a mess. He was born with something called Treacher-Collins syndrome.
It is an extreme case.
He has virtually no lower jaw. Very little in the way of ears. Other facial deformities. He may be hard of hearing, because the tests have come back abnormal, according to the audiologists.
Worst of all, he has virtually no face. No nose, deformed eyes, and no lower jaw or ears. He looks more like a monster than a human baby.
He is rather shocking to look at.
He will probably be in the hospital for at least several more months until surgeons can fix some of the damage to his face. He is unable to breathe without help. He has had frequent spells of apnea (stoppage of breathing). He requires constant monitoring and care in an ICU nursery.
Xio is my second child. The fact that he was born with something seriously wrong is horrifying. I took good care of myself while I was pregnant. Didn't drink, didn't smoke, ate the right things. WHY?!? Why was he born without a face? What did I do wrong?
I have never heard of Treacher-Collins. Why my son?!?
My husband, Constantino, says I am being ridiculous, but every time I see my damaged, deformed baby in the NICU, it's like another slap in the face. He says the doctors and nurses are doing all they can to help our baby, but I am not convinced.
How is little Xio going to go through life with such a badly deformed face? He will never measure up to his beautiful big sister, Anastasia, who is four and a gorgeous, perfect child. I am sure he will be unmercifully teased or worse, people will stare, point, and make cruel comments regarding his appearance.
You know how kids are. They can be cruel. It's even more devastating when adults do it.
I don't know if I will be able to handle it. Xio is only a month old now as it is! I'm trying to trust in God, but right now, I don't think He's listening to me. Why is he punishing Xio? ME? I am going to need a miracle to face the surgeries, treatments, and such that lie ahead for Xio!!
~End of part one.~