- Posted July 31, 2014 by
Bonita Springs, Florida
This iReport is part of an assignment:
Raising a special needs child
We were going to be parents! In 2002, my amazing husband, John, and I were expecting a baby boy. Our future was on its way and I was going to do my very best to make it a healthy one; I dropped sugar, alcohol and caffeine, planned my meals and snacks with care, joined maternity yoga, made all the medical visits... Our little boy grew steadily bigger and stronger. Then one day in our 32nd week our son suffered an in utero Grade IV brain hemorrhage.
How do I explain the life of raising a special needs child? I cannot. Each child is as different as the snowflakes falling to the earth; spectacular, unique and fragile. We have connected and marveled with many of these children and their families, yet we can only understand how we survive our own experience.
We entered those wide hospital doors, stepped through and tumbled down the rabbit hole and have been trying to gain a foothold ever since that day. I soon learned my close girlfriend delivered her own son on the same day. Through the years, I could only imagine how her own family experience differed as each new Christmas and Baseball photo arrived and I mourned for all my child had lost.
As you labored through birth... an emergency team whirled around me.
As you heard your child's first cry... I witnessed my child being resuscitated and whisked away, while my husband grasped my hand.
As you received your son into your arms... I was put back together and wheeled into a NICU to view my son through thick glass for only a moment before being removed.
As you fed your child and spent your first night together for the first time... my husband met with neonatologists, signed forms and received the NICU rules and procedures while I stared at the ceiling listening to the celebration all around me in the maternity ward.
As you left the hospital, gently easing your son into the car... we sat in a hospital office signing Do Not Resuscitate forms.
As you saw the world open up before you... I saw hope fade.
As you fretted over a 3 am feeding... I hooked myself up to a breast pump and listened while my husband conversed with a NICU night nurse to learn the latest status.
As your child learned to crawl and feed himself... we attempted to comfort Riley's wails which pierced our souls, cleaned vomit and met with yet another doctor.
As you returned to work... we left ours, packed our bags and moved to find easier circumstances.
As you explored the world together... we quietly closed our doors and turned off our phones.
As you taught your child to sit at the table as a family... my husband and I took turns cooking and eating so that Riley would be fully cared for at every moment.
As you prepared for school tests... we reworked medical equipment, upgraded wheelchairs and ground specially prepared food.
Now at eleven years old, as you watch baseball and drama tryouts... my son is learning to signal "yes" and 'no." An achievement beyond our wildest expectations. Riley can communicate!
This little family must work harder to maintain the marital bond, to keep our emotions, health, finances and our future from disintegrating at every new threshold. We also rejoice in every success and appreciate the life we have built far beyond the capacity we would have had with a typical family. John and I will be there for Riley in every way and every moment. We have each other and we have love. What more can we ask for...
- My life