Tuesday, 27 September 2011

Jonathan's Story

My husband and I were thrilled at the news that we were expecting our first child!  I was 26 years old. The pregnancy was exciting, each change and milestone reached was noted and celebrated.  I had a wonderful doctor, and we leaned heavily on her advice, as this was my first time experiencing prenatal care.  Around 18 weeks, she suggested I do a triple-screen (now a quad-screen) blood test used to detect possible cases of spina bifida, Down syndrome, and another genetic defect.  She said it was optional, but recommended doing it as it could change where we delivered, or what medical personnel were on hand when the baby was born, etc.  At her suggestion, we agreed.  The test was done at approximately the same time I had my first ultrasound.   We learned we had a SON on the way, and loved getting our first glimpse of him!   A few days after the blood test and ultrasound, I received a phone call from my doctor.  She was concerned about the results from the blood test, which indicated there was a one in 30 chance that our little baby had Down syndrome.  While the news was definitely unexpected, I was a math teacher, and deal in numbers and percentages.  One in 30 meant to me that there was a 96.666666% chance that our baby was just fine.  She verified the date of my last period to make sure the calculations had been done accurately.  They had the wrong date and with the revised numbers, we were given a one in 100 chance he would have Down syndrome.  So that was better, right?  Now there was less concern?  Wrong.  Obviously those in the medical profession know more than I do, and it became clear that despite the numbers, my doctor was worried.  She told us to schedule a more detailed ultrasound with a paranatalogist as soon as possible.  I was approaching what we learned was the 21 week deadline if we were interested in aborting the baby.  Though that word was never used, my husband and I both repetitively felt the implied undertones in comments of the professionals we were working with. 

Nervous, and a little unsure of what was going to be found, the second ultra sound was performed.  This time, careful measurements were taken of our baby’s arm and leg bones, and his remaining body.  Measurement after measurement was recorded, and the heart was examined extensively.  In the end, the ultra sound revealed that the arms and legs were a little short in comparison to the rest of the body, characteristic of a child with Down syndrome, but this can be seen in other children as well.  His heart looked fine.  Where did this ultrasound leave us?  In the same inconclusive place we began, but with continued concern. 

We met with our doctor again.  She made it clear that the only real way of determining the condition of our son was to do an amniocentesis.  Without that test, we could speculate as to his health, but make no clear determination.  We made it clear to her that terminating the pregnancy was not something we were interested in doing.   The amniocentesis carries risk with it that was similar to our small percentage chance of having a child with Down syndrome.  Not wanting to put the pregnancy at risk, and knowing we wanted this baby regardless of the outcome, we opted not to do the test.  Our doctor respected our decision, and continued to provide excellent prenatal care.

We had the usual baby showers, and watched my body grow, still with excitement and anticipation, but also with an extra weight and concern from that time forward.  While we didn’t have conclusive test results, the worry never left me.  I can’t say that I knew for sure my son would have Down syndrome, but never felt like he wouldn’t have it, either.  I tried to speculate how we would respond to the news if he did have it.  My husband and I both said we would embrace the situation, and do all that we could to help our son reach his potential.   We could not fully comprehend then that he would be one the greatest blessings in our lives, and the lives of our other children.

As my pregnancy neared its end, I asked my doctor how soon upon seeing the baby would she know of his health.   She said she could usually tell immediately.   This question and response proved to be important.

While driving to the hospital to deliver my son, I told my husband I was nervous.  So was he.  But we would be okay, either way.  Jonathan was born on a beautiful Oregon morning exactly on his due date, after 31 hours of labor.  I had always envisioned the birth of my first child to be an exciting, joyful, emotional time.  I was undoubtedly thrilled at his arrival, but the first words out of my mouth after I heard his first cry and before my husband left my side to go be with the baby were, “Does he have Down syndrome?”  My husband left me and asked the doctor.  I heard her reply in the distance, “You’ll have to ask the pediatrician that.  I can’t give a diagnosis.”  Not, “no, he’s perfect…”  or even, “No, he’s just fine,” the responses we’ve been given by my Obstetrician at the birth of my three subsequent children.   No, we got the “You’ll have to ask someone else” response.  Based on this response, and what my doctor had told me earlier when I asked how quickly she could diagnose it, from the minute he was born, I felt like my son had Down syndrome.  I told my husband, “I think he has it.”  He said, “We don’t know that for sure, let’s just wait and see what they say.” 

We did wait.  We held our little guy, and loved him immediately, but also studied him and wondered.  Soon the geneticists came in.  Somewhere along the line of their many years of practice, they threw bedside manner out the window.  The one in charge stood in front of us and inspected my boy, my baby, commenting on thing after thing that just wasn’t right.  His facial features weren’t fully developed, his head was perfectly round in a Down Syndrome sort of way, his eyes slanted slightly, his first two toes were too far apart, etc.  His hands actually passed the test, as they had two creases instead of the usual one you find in children with Down syndrome.  But in the end, there were more characteristics present than not, and their official diagnosis was that he does have Down Syndrome.  Tears were streaming down my cheeks as I watched them inspect my beautiful baby, but they didn’t even compare to the tears that were shed by my husband and I as we heard their final diagnosis.  They left the room, and my husband climbed on the hospital bed and held me, and we just cried.  A good long cry. 

The weeks that followed were hard ones.  While my husband never cried after the hospital, I did.  Many times.  I was mourning and grieving the loss of expectations I had had for my child-things he would never become.  Looking back, I was irrational in some of my thinking as I dealt with my grief.  I also began to read.   I needed to start to form new ideas and hopes and expectations for my sweet baby.  Frankly, it seemed that as I read, the messages continued to tell me what my son was not going to be able to do.  I would read and cry more, as I processed and came to terms with what my son may be capable of achieving.  If only I’d read or been able to see the other side of the story.  If only I had understood the joy, and love, and blessing my son would be to me. 

Jonathan is in our family to teach us, and to help others he comes in contact with.  Not only has he far outreached the “limits” placed upon him in much of the literature and by society as a whole, he teaches me life lessons every day.  From Jonathan, I have learned what it truly means to love, and to love purely.  I have learned what it means to withhold judgment, to avoid prejudices, to be more accepting of one another despite differences.   I see Jonathan model incredible perseverance as he works to master new things.  While there are no doubt added challenges with Jonathan, there are blessings which exceed anything I could have ever imagined.  I am so proud to say he is mine.  I know I am a better person because of him, as I strive to be more like him each day.  He offers himself freely to everyone, be it the prisoner in handcuffs we are passing in the hospital corridor, a stranger on the street, or a good friend.   It is up to us to open ourselves up to what he is here to teach us.  I am forever grateful to have traveled the last nine years with Jonathan, and look forward to the journey ahead!