Spoil the Child

Being a mother is a precious gift. You’re always told not to spoil your children-but I disagree. I believe in living in the moment because everything could be gone tomorrow. That’s not say that I am careless or that I have all the riches in the world to satisfy my every need; it is to say that life is so short that if I don’t do it now-it may never happen. So I do not procrastinate.

My grandmother (who passed away in 2008) had this philosophy of life being too short. She made me discover that every moment that we spend with our families must be adored. We never know what tomorrow will bring and we do not want to look back and question why something was not done. So spoiling a child is not a bad thing.

I’ve been a mom for five years now so you may say my belief is irresponsible for my parental status-but it’s not. Not when you have a child with special needs. I mean needs so special that with a blink of an eye, you may miss something. If you do not listen for a moment, you may not hear them speak for the last time. If you do not give them what they want, you may not see that beautiful smile that brightens your day. That is how precious a special child’s time is. So with my child still being here, I cannot waste time.

My son, Gavin, met all his milestones and developed normally until he was three. Shortly thereafter, he began to lose much of what he worked so hard for: learning his ABC’s, walking, talking, counting in English and Spanish, drawing beautiful pictures and communicating with us. My husband and I questioned the doctors about our son’s condition. Multiple tests were performed on Gavin and each time we arrived at a dead end. Everything was “normal”. But then we finally received answers for our sought after questions. The doctor said,“Give him a good life.” How can he allow our child to die without a fight? Is it not worth a try? Well, we’re fighters. We’re determined to find a cure. There is a first time for everything.

Our son Gavin has Niemann-Pick Type C (NPC), otherwise know as “Childhood Alzheimer’s.” Niemann-Pick Type C is an inherited disease where cholesterol accumulates in the vital organs of the affected individual. Over time, those disabled by NPC begin to have progressive neurological disabilities due to an inability to metabolize the cholesterol. Ultimately, the disease results in death.

Now I understand more of what my grandmother said about life being too short. He may not be here tomorrow, next week, next month, or next year. That is why I live for today and for him, and for all the other children who are losing their hopes and dreams due to disease.