Grief is a natural process, and I believe the way we learn to accept and embrace the unexpected. We did not know Alex was going to have down syndrome nor did we know very much about down syndrome. As with any unanticipated event in our lives this period of adjustment was necessary for John, me and our family.
I now know what we experienced was the grieving process, and admittedly for the first few hours it was about us and the “why and how”. Why did Alex have down syndrome? Why did this happen to us? 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? Why, why, how, how, it was almost as if we felt sorry for ourselves.
These are very common questions with new parents and I do not pretend to know the answers. However, once we met Alex and saw she was just like her sister in so many ways we subconsciously shifted from grief about ourselves to grief about and for Alex. I have talked to many, many parents who have shared these types of thoughts and fears and this grief about the future.
We learned that 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 be able to speak? Would she be able to go to school, play sports and have friends? Would she ever be accepted? Would she ever get married? Would she be able to move out of our house?
On a more practical note we also had to talk to our families. This shift from lack of action to tactical movement was a huge step in our ability to grieve and move forward. As Alex remained in the hospital for five days after her birth it gave us the time we needed.
That 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.
During Alex’s hospital stay 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. These professionals were all a part of our healing process.
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 for coarctation of the aorta repair.
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. This is the letter, I feel almost like a seer reading this 17 years later:
July 8, 1993
Dear Friends and Family,
On June 19 John & I were very happy to experience the birth of our second child and daughter Alex. Alex has Down Syndrome, which took us completely by surprise. My pregnancy had been uneventful and every indicator was normal.
Fortunately for us, I delivered Alex in a hospital with an excellent reputation for treating newborns with all sorts of problems. As Down Syndrome was suspected by the doctors shortly after Alex's birth, she was tested for the most common physical problems affecting Down's children. This included heart, lung and lower GI tract problems. Her muscle tone was also checked and her ability to feed and digest her food. Happily, she passed all of her testing with flying colors.
Although we were heartbroken at first, we have realized that first Alex is a baby, and secondly she has Down Syndrome. Not the other way around. We didn't plan for this but we are preparing for it.
We are now semi-experts on Down Syndrome and are learning about all the programs that are available to Alex so she will be able to reach her highest potential. This involves something called early intervention were she will be able to work with therapists to help her develop the skills she will need to be able to go to school and function as a normal child. Alex will receive the best care we can give her.
Alex is active, alert, cute and we love her. We hope you will all get a chance to meet her. I expect we will all become better people for having Alex in our lives.
Love, Gary & John
I have an entire shoebox full of responses; unbelievable outpourings of love support and stories. These stories were the medicine we needed, hearing of other families with children with special needs, other stories of sadness that turned into happiness and stories of futures and promises.
Through our first few hours, days and weeks of having Alex introduced into our lives we learned a lot. We learned grieving was important; we needed to adjust. We also learned having a child with down syndrome was not the end of the world; it did not make us different in a bad way. However, the biggest lesson we learned; our friends and family would always be there for us, not matter what. I had never appreciated that before, and I also recognize we are very, very lucky to have that support.
I know many parents of newborns need to grieve separately. Often one or both of the parents need a longer period of adjustment. Recognizing and supporting a child with special needs is not an easy thing. My only advice; get to know your child, you will be surprised that this little being, extra chromosome and all is more like you, than not.
Additionally, not all new families have the needed support and these families must actively search for others to help them thorough this grieving process. This is very important; find support as quickly as possible, grief cannot be handled silently or alone but it is necessary to fulfill the magic down syndrome brings to our lives.