Scared and sad: A letter from a prospective parent

I recently received an e-mail from a prospective parent of a child with Down syndrome. He had purchased An Uncomplicated Life, and wanted to share his feelings with me. When you read Mike’s letter, you might feel as if you’re reading your own autobiography.

Kerry and I didn’t get an early diagnosis; the amniocentesis couldn’t be performed. Back in 1989, amnio was the only way to predict a disability. Our shock/anger/sadness came the day Jillian was born. I spent a chapter writing about it.

Mike is scared and sad and a little disappointed. Incredibly, he has received some of the same “wisdom” we received 27 years ago from health care professionals. Words such as “challenge”, “risk”, “burden” and “termination” have been part of the conversation.

That is what’s sad and scary.

I’ve e-mailed with Mike since. I asked him for permission to use his letter here, which he graciously gave. I’ve also recently asked him if he were OK with me publishing his e-mail address. If I get that OK, I’ll post it here as well.

Below is his first e-mail to me. My responses are in bold.

Expect. Don’t accept.

 

 

Paul –

My name is Mike (XXX), and I live in Boston with my wife Cristina, 3 year old daughter Maia, and her soon to be younger sister Mae as of this upcoming July.

I purchased your book “An Uncomplicated Life” about a week ago, when we received some initial markers and positive blood results that our daughter could have Down. I wasn’t going to start reading the book. It was a “just in case” purchase… I couldn’t torment myself anymore… but I started reading it, and couldn’t put it down despite all the fear it made me confront, and how I kept finding myself gasping for air or crying on the pages.

A few days after I started reading it, we saw more markers on an ultrasound and are awaiting an amnio, but the head of maternal medicine at our hospital here in Boston gave us no hope on our way out of the door. In a way, I am hanging onto your book for dear life, praying to find some strength and peace. We are not terribly religious folks, but I am a dad, and through this process all we have heard from the medical community (best in the world, right?) are words like “challenge”, “burden”, “risk”, and, sadly, “termination”.

JILLIAN WAS A DIFFERENT CHALLENGE. HER OLDER, “TYPICAL” BROTHER WAS EQUALLY CHALLENGING, IN OTHER WAYS. JILLIAN WAS DEFINITELY NEVER A BURDEN. SHE TAUGHT US THINGS WE’D NEVER HAVE LEARNED OTHERWISE. SHE WAS AND IS A BLESSING IN OUR LIVES. SORRY IF I SOUND EVANGELICAL ON THE SUBJECT.

I seem to occupy a society where there seems to be more genuine concern about whether or not Tom Brady is going to get another Super Bowl or Julian Edelman’s foot is going to be healthy for the Chiefs game than if a child with Down Syndrome is worth even bringing into the world. In a way, it seems that we are being told we are being irresponsible for even wanting to proceed with this information, that one day we will have to tell our daughter “I’m so sorry we did this to you”.

 

THAT IS NONSENSE. YOU’RE BRINGING A SPECIAL CHILD INTO A WORLD WHERE INCLUSION IS ON THE RISE. THERE HAS NEVER BEEN A BETTER TIME TO RAISE A SPECIAL NEEDS CHILD. MY MOTHER HAS SAID TO ME, ‘JILLIAN HAS COME CLOSER TO REACHING HER POTENTIAL THAN ANY OF MY (4) GRANDCHILDREN.’

 

It is heartbreaking, and seems to minimize the grief and fear my wife and I are feeling… but it is also fueling our resolve. I’m still scared. Very scared. Never been more scared. Your chapter “Sometimes” had my heart pounding, because the selfish part of me is contending with the same fears and limitations that will be placed upon my marriage, my career, my future, my time. My wife and I had also talked about, one day, moving to Italy if resources allowed. A dream. Maybe not anymore.

 

WHAT JILLIAN HAS BROUGHT TO US SURPASSES ANY REGRETS. THE EXTRA TIME SPENT RAISING HER DOESN’T COMPARE WITH THE REWARDS WE’VE EARNED. YOU CAN STILL MOVE TO ITALY, OR ANYWHERE YOU’D LIKE. WE’RE EMPTY NESTERS, AND WHEN I RETIRE, WE’RE CONSIDERING SERIOUSLY SPENDING AT LEAST 3 MONTHS A YEAR IN A WARMER CLIMATE. JILLIAN AND RYAN LIVE 10 MINUTES FROM US NOW. WE SEE THEM MAYBE ONCE A WEEK, WHEN WE BRIBE HER WITH HER FAVORITE DINNER OR JOIN HER AND RYAN FOR AN EVENING OUT. THEY ARE ENTIRELY INDEPENDENT (NO SOCIAL WORKERS VISITING, NO TYPICAL ROOMIES).

 

And I’m deeply sad, even though I hate the feeling. My first daughter was born in a room that overlooked the campus of Harvard, a place many of my friends had attended. I joked, “Look Maia, hit the books, that’s your school!” Because when your child is born, you can pretend that anything is possible. With Mae, we know already there will be limitations, and it fills us with grief, however misguided it may be.

 

I’M NOT GOING TO JUDGE YOUR BELIEFS. WE’RE ALL DIFFERENT. THEY ARE COMMON, THOUGH, AND NOT UNTRUE. BUT YOUR NEW DAUGHTER SHOULD HAVE THE RIGHT TO DEFINE HERSELF, SAME AS ANY KID. SHE WILL SURPRISE YOU. WE ALL HAVE LIMITATIONS. NONE OF THEM SHOULD BE SELF IMPOSED.

 

I think of all the families I have seen with children who may start “perfect”,

 

NO CHILD IS PERFECT. WHAT IS PERFECT?

 

but do not end up so. They get in trouble, they make life altering decisions, they cause great pain to their parents. They do not appreciate life or love. No one is guaranteed a clear path through something as complicated as life.

Two months ago, I was run over by a car while in a crosswalk. Typical day, out picking up lawn bags for yard work, grabbing a coffee. I thought I was going to die. The license plate of the car that hit me, come to find out, was one of those Catholic “Choose Life” vanity plates, with a picture of a mom holding a baby. I found it ironic that the car that could’ve ended me was “pro-life”. Now it means something entirely different. Like I said, I’ve never been terribly religious, but my ears have certainly perked up since then thinking “Okay Big Guy, I’m listening”.

 

WE AREN’T DEVOUT, EITHER. I HAVE WONDERED WHY GOD GAVE US JILLIAN, AND I‘VE HATED WHEN PEOPLE SAID, ‘GOD DOESNT GIVE YOU ANYTHING YOU CANT HANDLE.’ I TEND TO THINK GOD HAD NOTHING TO DO WITH IT.

 

I’m not sure why I’m writing. I write to try and make sense of things. For my first daughter, I kept a journal for her during the pregnancy and her first year, thinking that one day when she’s older I can give her something to remember me by, to glimpse back into the past. I have been doing the same for Mae, and a great sorrow came over me when I realized that she may not understand or be able to interpret much of what I am writing… but maybe that isn’t all that important.

 

WITH YOUR HELP, SHE WILL UNDERSTAND AND APPRECIATE YOUR EFFORT. MAYBE EVEN MORE THAN YOUR OLDER DAUGHTER, BECAUSE OF THE EXTRA EFFORT REQUIRED.

I suppose when you are scared and searching for strength, you reach out arms flailing to anything you can find, any driftwood you can latch onto in the sea. Your book is that driftwood. In that regard, i want to say thank you to your family and your daughter for sharing your story. You can add me to the list of people Jillian has inspired. People like you who tell your stories give people like myself and my wife something to grab onto when we feel like we can’t even breath, to feel that, yeah, we can do this, we can do this, it’s okay.  It will be okay.

 

THANK YOU. OUR FAMILY ISN’T SPECIAL. AND ALL PARENTS APPROACH THINGS DIFFERENTLY. I WILL TELL YOU THAT ANYONE WHO HAS TAKEN THE TIME TO ‘SEE’ JILLIAN RATHER THAN ‘LOOK’ AT HER HAS COME AWAY FOREVER CHANGED FOR THE BETTER BY THE EXPERIENCE. THAT INCLUDES ME, MY WIFE AND OUR FAMILY MEMBERS. JILLIAN IS THE BEST PERSON I KNOW.

Thank you.

Mike (XXX)

Boston, MA