Josh Carpenter A Circle of Friends II. Bringing Love and Hope to Those with Down Syndrome. Mullaly, G. & Saxton-Bolt, D. (Compilers)

Reprinted with the permission of Annie Volmer and Gini Mullaly

I'm writing to you as a father because, while I haven't walked a mile in your shoes, I bet we've covered some of the same terrain in our journeys. From the get-go my wife Annie and I were divided on the question of a second child. Our first was so perfect. Our lives were blessed. A perfect pregnancy, a great midwife, super lifestyle, great jobs, super friends. Abbey was born with no hitches—the midwife made us promise not to show the video to expecting women as it was so idyllic with Annie smiling and crying her way to a perfect delivery.

However, life's circumstances turned south. I lost my job and couldn't find work in my profession. I decided to apply to graduate school. I got into one far away from home and this caused turmoil for Annie. The long and short of it was that we made a "deal." We would all move to Idaho for my two and a half years of graduate school if I would agree to a second child. Pretty silly, but hey, we're human and we were in a pretty bad way. So there we were, almost through my first year of school, Annie unhappy with her circumstances, the clock ticking and me saying "now or never." Of course Annie was voting for "now" while I was all for "never." But a deal is a deal....

Getting pregnant was no problem—far from it. But nothing went right after that. The midwife was a corpulent, self-directed, semi-professional, who did not inform us until we were way into the pregnancy that she was pro-life no matter what. What do you think are my criteria for termination? You guessed it partner—I could handle anything but Down syndrome. So we did the AFP test, which our midwife informed us was normal. Annie was sick for the entire pregnancy and I developed ulcerative cholitis (I thought it was sympathetic tummy pains).

Well the big day arrives—it's my wife's birthday, December 23^rd. More snow hits Moscow, Idaho in the following week than for the rest of the winter. Friends and I prepare the bedroom and our daughter for the imminent arrival. Our midwife arrives about two hours before the actual birth—luckily her partner arrives earlier. As an EMT, I recognized the final dilation and crowning and while again marveling at this seemingly impossible feat that my wife was performing, I was even more aware our midwife was not moving fast enough to catch the baby. She hitched up her overalls as I entreated her to speed it up—that the baby was coming.

And come she did. I can still here the midwife's high voice saying "oooop-oooop-ooop - I - Ah, I missed....that's a first." as Lelia slipped through her fingers and landed with a bump on the clean towels I had piled on the floor in anticipation. The first thing I noticed was that my kid had a familiar set of features...and not from either family. I blocked the thought and went into EMT mode. She was staying blue—not a good color on a little human. So someone called the E.R. and they said to bring her in.

God Bless old Subaru four-wheel drive wagons. I drove my precious cargo of midwife helper, new baby, and bleeding wife in the back, with the main midwife co-piloting next to me. No worries about traction, just torque. We made it to the hospital in six minutes. Annie and entourage headed upstairs to the birthing unit and left me with the receptionist to do paperwork. I named my child and busied myself with all manner of important things—I was not anxious to get upstairs.

Okay, let's cut to the chase 'cause this is the important stuff. We had a compassionate doc who saw the telltale signs of Downs and was decent enough to let us know what his suspicion was. I can't tell you what Annie felt as she cried. I felt my eyes water and heard a rushing wind in my ears. My body vibrated and I felt that I was a puny container for the fathomless pain I felt at that moment. And I cried. My worst fear became a reality. I was spared trying to deny it because I am a psychologist and had studied Downs in school and had seen enough to know in my heart that this was my daughter. And my heart closed itself to her.

I tended to my wife and looked at "it" my daughter and felt nothing. No that's not true—I felt detachment. I was numb. I walked out into the blizzard raging about the hospital and felt none of its cold.

Now this is real important for you. My wife had the advantage of nursing our kid and bonding through the benefit of powerful drugs and hormones. You and I know about our wife's hormones second hand. We will never know what it feels like to have them coursing through our veins as an infant takes succor at our breast. (I tried once with our first kid when she was inconsolably crying—she took one look at that pitifully tiny nipple all covered in gorilla fur and howled the louder for it).

So by day four or so my wife reports, she was in love with our daughter. That is not to say she was done grieving, she still does that a bit—in her own way. I guess my wife is lucky this way, as many women still find bonding difficult.

Where was I during these key first days? Shoveling snow of course! There is a law in Moscow that says you must keep the sidewalk clean in front of your house. I think this law was designed by a man like myself who feels better when he has something to do when he can't control a situation (or the weather). Well heck, I kept the sidewalk and the road clean. And, my elderly neighbor's roof and jeez, the cars too. Got the picture? I would go see Annie and Lelia for agonizing hours and race back home. I had Christmas with my older daughter, but hey, what do you think I told my family when they asked how Lelia was doing? "Um, well, there might be some complications....they need to do some genetic testing......there are some dark signposts...." My dad, also a psychologist, was not easily fooled but didn't press for more. I told a few safe colleagues in my school and got some awkward support. But how did I feel, really feel? I wished Lelia were dead. I wished she would die of SIDS. I wished she had never happened. I wished my wife had miscarried....You don't know me, so you can't know what a gentle being I am, but know this, just having those thoughts was the worst experience of my life, bar none. And I thought I must be a freak—an evil person for having these feelings. I didn't share these thoughts with anyone. They were my deep dark shaming secret. In fact I have shared these with only five people and now you. And I am still scared that there will be those who will judge me harshly....

Well, the next four months were busy. I was researching and writing my dissertation and getting used to having this new person in my home. During that time, I began to notice certain characteristics about Lelia that I liked. She snuggled up to me—even without the benefit of milk—laden breasts. She slept through many nights-allowing me to sleep. She seemed to love me. Yeah, I still saw the Down syndrome first and the little baby second, but I slowly involved myself in her life more and more. My wife made a very wise and prudent decision; not to force Lelia on me. I did not change diapers, I did not feed, I did not do anything difficult or frustrating with Lelia. I limited my contact to easy fun quality time. This was all I could handle and Annie seemed to sense it. And it worked. Who can resist a sweet cuddly bundle of unconditional love?

Do I have anger about my kid's condition? Do people still stare once and awhile? Do I wallow in self-pity now and again? YUP! Do I wish my kid dead? No, but I do wish she didn't have Down syndrome....

I could write on and tell you more, but I've hogged up a lot of your time.

And I almost forgot the most important message...

CONGRATULATIONS!!!!!! You are in for a wildly fantastic ride that has already started and gets better with time. I wish you the best. And if you have dark thoughts—try not to beat yourself up for them—they're common reactions to uncommon circumstances.

Sincerely, Josh Carpenter

(PS: Dear Lelia, When you are old enough to read this, I want you to know that I love you deeply and completely. I wrote this in response to parents' pain and difficulty with accepting their own children with Down syndrome. I hoped that by sharing how I felt when you first came into my life, I could help them build love with their own children. You are my sweetest sweet. Love, Daddy.)