One of the many things that ran around our minds when we perceived we had bad information to share was "how"? How do we share the news about Alex to our friends and family? How can we tell our families, who were so excited about the prospect of another baby, that ours was different? How do we share our sadness, but still try to put on a happy face?
To put it simply - it started out difficult, but became easier and easier. Today, I practically brag about our daughter with Down Syndrome.
Alex remained in the hospital for five days after her birth. As it was suspected that she had down syndrome, the doctors kept her in the neonatal intensive care unit so additional tests could be run. At six pounds she was by far the largest baby in the unit - I already knew we were lucky! As the week went on she was seen by a cardiologist, a gastric intestinal specialist, an audiologist, an optometrist and the list goes on. John and I were seen by a geneticist, a social worker, and a doctor who specialized in working with children with down syndrome. It was a whirlwind.
Alex was given a clean bill of health - with the exception of some minor heart issues, which are very common in children with down syndrome. In retrospect, this was very fortuitous, as we saw the cardiologist every six months, and a condition, not common in children with down syndrome, was discovered at 21 months and Alex had surgery. More about this later.
This week gave John and I time to digest our new lives, as well as share the news with our families and closest friends. I can unequivocally say that we were met with support and unconditional love by everyone. If other thoughts were shared amongst families and friends we were never privy to them. My father and mother who lived 2,000 miles insisted my Mom come out on the next plane - and she did. My brother in law and sister in law, who lived in our town, along with their four children, became the head cheerleaders in the "welcome to the world" celebration.
When Courtney was born we sent out 150 birth announcements, and I wanted to do the same to celebrate Alex's birth. However, I did not know how I wanted to share our news with my friends that I couldn't talk to - as well as others. We decided to enclose a letter along with the birth announcement - and it helped us heal.
I have an entire shoebox full of responses - unbelievable outpourings of love, support and stories. These stories were the medicine I needed - hearing of other families with children with special needs, other stories of sadness that turned into happiness and stories of futures. You see, when Alex was born we did not grief for ourselves, we grieved for our future and Alex's future. Would she ever learn to read? Would she ever be accepted? Would she ever get married? Just closing my eyes at night would bring on all these fears and reduce me to tears.
Some of these questions I know the answers to - some I do not. I still wonder about a lot of things. But I do not cry and have not cried about Alex's future since she was six weeks old. We learned very quickly how special Alex is, and although she is a bit different, she really is just like us in many, many ways. If the last 16 years are any indication, she will have a bright future, full of promise, success and fulfillment - just like me, just like her father, and just like her siblings.
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