(Spina Bifida, Cleft Lip and Palate)
My husband and I decided very soon after we were married that adoption would be part of our family plan. We felt it was the perfect opportunity to join a couple or family longing for a child with a little one who needed a family. We were surprised and then disappointed when some of our family and friends did not receive the news of our plans to adopt with the joy we felt. Soon I became pregnant with our first daughter. We were blessed with three precious girls during an almost seven year period. Then we decided the time was right to adopt and, thankfully, our family and friends fully supported our decision at that time.
Opening our hearts and minds to special needs adoption was an evolutionary process. It didn't happen over night. As we began seriously researching adoption programs, we became aware of the many children waiting for families. So many kids were STILL waiting, and we felt we should explore whether we could manage parenting a child with special needs. We are so thankful that we did! We found that many special needs really are highly manageable, and some needs don't require any additional care.
The most difficult part of parenting children with special needs for us has not been related to their medical diagnoses at all. The hardest things have been related to the abandonment, loss, and early institutionalization of our boys. They continue to make great improvements, but the emotional and psychological hurts are the greatest challenges to heal.
I wish we would have known that "manageable" special needs don't always mean easy, and that a more significant special need doesn't necessarily translate into more challenging for a family. Our son with cleft lip and palate is so sweet, smart and hilariously funny, and his prognosis is very good. However, we're in it for the long haul with him; he will continue to require speech therapy and corrective surgeries for several years to come. Our son with spina bifida, on the other hand, had a more unknown outlook prior to coming home. Now he has had a major back surgery that completely changed the anticipated outcome for him. He is almost never ill and, other than a few days post-op after his adjustments, he is always on the go. We look forward to a normal life expectancy for him with few, if any, physical limitations for our bright, loving and handsome guy.
Both boys have required medical care and will continue to need treatment and follow up until adulthood. Our son with cleft lip and palate will need additional surgeries during childhood and speech therapy to ensure the best outcomes. Our son with spina bifida will need to continue to monitor his health throughout his life, but the prognosis is great for a long and healthy future.
I hope prospective parents will realize that a diagnosis actually tells very little about a child. The label may define the medical condition and provide clues about what to expect, but it doesn't actually tell you anything about who the child is. Our boys are amazing and incredible people, and our daily lives are impacted in the best possible ways because of them and who they are!