What did we do to deserve this child?

I wrote this a number of years ago, but wanted to share it today.

I was saying my prayers one evening when I suddenly realized what an enlightening path we had been down over the last three years.  I had just found myself asking God, “What did my family do to deserve a child like Hannah?”  It was the realization that this question could legitimately be asked from different perspectives that stopped me mid-prayer and actually made me chuckle as I thought back over the journey my son and daughter-in-law, my husband and I, and other family members have experienced since Hannah’s birth.

I’ll never forget calling the hospital and telling my daughter-in-law, Jennifer that we had arrived in Denver and were slowly making our way through road construction delays to our campground.  We had received word a couple of days earlier, when it became apparent that this baby was determined to arrive early, that Jennifer had been airlifted from the rural western Kansas hospital into Presbyterian-St. Luke’s in Denver.  As full-time RVers, we quickly adjusted our itinerary and headed west.  The last call had come early that morning.  Hannah Lee had arrived – seven weeks premature, weighing three pounds, five ounces, but doing well.  Now I was calling to let the new parents know we had arrived and would be at the hospital shortly.  But Jennifer’s voice had a strange tone to it.  “Are you OK,” I asked.  “Is the baby OK?”  There was a pause before she said, “They think the baby may have Down Syndrome.”

Down Syndrome!  I distinctly remember saying, “Oh, Jennifer, I am so sorry!”  I have since read accounts where new mothers have never forgiven unthinking friends and family who utter such insensitive thoughts.  Thank goodness Jennifer hasn’t held that against me.  We quickly made our way to the hospital and found our new, very little granddaughter in the neonatal ICU unit looking a lot like a plucked chicken as I lovingly described her.  She was so tiny with those arms and legs that seemed to uncontrollably flail every which way.  We immediately fell in love with her.

Over the next few days as we awaited the results of the tests that would confirm that Hannah indeed had Down Syndrome, I would make my way to the hospital chapel to pray.  I would pray before I got out of bed in the morning and before I went to sleep at night.  I would wake up in the middle of the night, “Please, God, don’t let this baby have Downs.  Let it all be a mistake.”  We would scrutinize her features and try to convince ourselves that she really didn’t look like she had Downs – even though the palms of her hands suggested that she did.  It was almost a relief when the tests came back and the doctors confirmed that she was indeed one of the 1 in 700 babies born each year with Down Syndrome.  Now we could get on with dealing with the challenges and rewards of having this special child in our family.

We were lucky that we could rearrange our summer itinerary to stay in Denver for the duration of Hannah’s hospitalization.  My son, Darin, was in summer school completing his masters degree and was able to put his class work on hold until he got his baby girl home, and Jennifer had just finished the school year teaching grade school.  We all settled into what turned out to be a nine-week stay in Denver.  Denver is a beautiful city to spend the summer in, but there wasn’t a lot of time for sightseeing that year.  Spending time with this tiny baby became our priority and we soon fell into a routine.  Darin and Jennifer would go to the hospital in the mornings and check in on her.  Bob and I would meet them there at noon and after an update over lunch, we would take the afternoon shift.  After dinner they would go back in for several hours to feed and hold her and check on her progress.

In between times we were all reading books, watching videos, and talking to people about what to expect when you have a child with Down Syndrome in your family.  One statement that has stayed with me is that they are a lot more like “normal” children than they are different.  I think this gave me hope.

It was during my afternoon shifts that I came to realize what a precious gift she was.  She loved to be held and as she grew stronger she would reach up and bat at the blanket covering her bassinet whenever she heard our voices.  It was like she was reminding us, “here I am, pick me up.”  I would hold and rock her by the hour and she would happily snuggle up to me.  I would talk to her telling her how much we loved her and make plans for the fun things we would do when she got bigger.  We celebrated when she first drank from a bottle rather than being fed from a tube.  And we cried when her little heart became too weak to allow her to suck from the bottle and she went back to the feeding tube.  Along with her Mommy and Daddy and other family members, we walked her down to the entrance of the operating room and cried as Darin handed her over to the OR nurse who assured us she would take good care of her.  The pediatric cardiologist patched the little holes in her heart and over the next few days we stood vigil around her bassinet in the pediatric ICU patting her and assuring her we were there.  She was finally on her way home when they discovered she would need yet another open heart surgery to correct another problem.  She came through like a champ and at nine weeks old she was finally allowed to go home to rural western Kansas to be introduced to the rest of the family of three dogs, two cats and a couple of turtles.  She was welcomed not only by her animal family, but an entire county of people who had spent the summer praying for the safe return of one of their tiniest residents.  Over the next few days there was a constant parade of well-wishers through their house, and Hannah, little as she was, thrived on the attention.

Hannah is now a happy and healthy three year old with a little sister who is 18 month younger.  We have been fortunate to spend a lot of time with Hannah and to watch as she began to sit up, crawl and then walk.  We have taken her to her physical and occupational therapy classes and watched as the tIeacher coaxed her to play with carefully selected toys that would improve her coordination and other skills.  We’ve watched her Mommy spend hours and hours playing with her on the floor to help her development and listened to her giggle as her Daddy wrestled with her.  She has readily learned sign language which gives her an opportunity to communicate with us and she is pleased when we understand her.  We are thrilled at the words she is beginning to speak and know that she soon will be talking.  She has a wonderful sense of humor and delights in slowly sneaking up to tickle us when we aren’t looking.

She has brought so much to us. She has taught us patience.  Hannah doesn’t worry if she doesn’t do things right away.  She knows she’ll get it sooner or later.  She has showed us that people who are “different” should not be shied away from but rather accepted and enjoyed for who they are.  I could go on and on with what she has given us, but more than anything she has given us LOVE!  When Hannah throws her arms around you, you get hugged, and her whole little body seems to melt into yours.

So regardless of what some people might assume, when I ask God, “what did my family do to deserve a child like this”, I really am saying, “why did you choose to bless our family with a child like Hannah.

Hannah is twelve years old today.  Happy birthday, Hannah!  This fall she will enter 6th grade, a big jump into middle school.  She loves music, reading and watching TV, playing with her sister, Maggie, and has more friends than you can imagine.  She is truly an inspiration to all of us.  Happy birthday, Hannah.