Our Story

I wrote this letter a year after giving birth to our daughter, Sophia. When we were in the hospital, we realized our new baby girl had Down Syndrome.  To my surprise, the hospital lacked any sort of written material to hand to us and help guide us on the journey we were about to embark on.  I felt alone and desperate for information. I wanted that proverbial hand to comfort me and point me in the right direction.  As I left the hospital I vowed to fill this void by writing something myself.  I sent this letter to several hospitals and midwives hoping to help parents who find themselves on a similar journey.

Hi,

I’m writing this letter to new parents and caretakers who either suspect or know their baby or patient was born with Down Syndrome (DS).  I wanted to tell our story as briefly and honestly as possible, hoping it will serve as useful advice, guidance and reassurance.

My name is Jill and my husband is Tim.  We have a three year old son named Bodhi and on February 26, 2010, we gave birth to our daughter Sophia.  We didn’t know she had DS when I was pregnant.  We got two of the 4D sonograms and, while they did check for DS, it wasn’t detected.

Immediately after giving birth we both realized she had DS … mostly because of the almond shape of her eyes.  Our Dr wasn’t sure and ordered a blood test, which would end up taking three weeks to come in.  Our initial response was shock and denial.  I am usually a fairly happy person and, because denial is a very difficult place to be, it didn’t take long for me to quickly plunge into a deep depression.  A part of my mind was hoping the nurses wouldn’t notice, and this too added greatly to my level of stress.

On the second day in the hospital the lactation specialist came in, and I finally broke down for the first time as she sat down on the bed next to me.  I said, “I think she might have DS,” and she simply shook her head in agreement.  I was stunned, mostly because my denial was so great that I actually believed no one else noticed.   Still in tears I asked, “how do you know?”  She said, “the nurses think that her low muscle tone and inability to latch on might be due to DS.”  I had no idea what she was talking about … I had never heard of muscle tone in a baby.  Weren’t all babies pretty weak?  While straight forward and honest, she was also very soothing and succeeded in finally pulling me out of denial.  Coming to grips with the reality of the situation did make things a lot easier.

After coming home, I started to read more about DS and realized that my reaction was fairly common.  The way a lot of people explain their initial reaction is that it feels like a “death” of the expectations you had for your baby.  My mind had to shift into a completely different way of thinking about our daughter.  My husband would remind me “right now, in this moment, we have a beautiful and healthy baby girl … let’s just enjoy the moment.”  This was good advice I used over and over again.  Projecting into the future caused a lot of stress, while staying present in the moment worked well at eliminating the stress.

It’s been three years now, and I love our daughter more than words can ever express.  When I hold her in my arms the thought that comes to my mind again and again is, “she is pure perfection.”  She is literally the light of our home, always beaming with joy and love.  I wish I could go back in time and tell my former stressed out self that there was nothing to worry about … Sophia is a gift!

How are we going to tell our friends and family?

A lot of the stress I felt in the hospital was over this simple question:  How are we going to tell people?  What will people think?  I quickly realized I wanted this to be an open subject.  We have friends who have a child with DS, and have always felt it was a closed subject when socializing with them.  I knew I wanted anyone and everyone we were talking with to feel free to bring it up and have an open dialogue.  I finally decided to write a mass email to friends, family and any acquaintance we might bump into at the grocery store.   I wrote the email a day or two after coming home from the hospital and attached photos so everyone could see Sophia’s precious face.  The response was overwhelmingly positive … something I didn’t at all expect.  It turns out almost everyone has a friend or relative who has a child with DS.  And everyone loves that child.

How is Down Syndrome different today?

In the “olden days” as I like to refer to it, a baby with DS was whisked away to an institution where the bar for achievement was set exceptionally low.  Studies have shown that when a human is given a low set of expectations they achieve exactly what’s expected.

When I was in high school all of the students with learning disabilities were clumped together into a small trailer behind the school.  I don’t recall ever even seeing them.  Things are much different today.  With early intervention, a lot of stimulation and even more love, most children with DS are mainstreamed into regular classrooms, with a great deal of success.

“Good is not good, when better is expected”—Thomas  Fuller

“For, he that expects nothing shall not be disappointed, but he that expects much … if he lives and uses that in hand day by day … shall be running over.”—Edgar  Cayce

Current Terminology

Over the past year we have been learning how to talk about DS using the most current terminology.  When I first came home from the hospital I would refer to all children without a disability as “normal.”  My husband finally got annoyed and said “there must be a better way of saying this.”  I agreed and after a quick Google search I found out that the current term being used is “typical.”  So as an example you might hear “A typical baby will learn to sit independently between 4 and 7 months while a child with DS may be delayed.”

Earlier I mentioned the term muscle tone and how this was the reason the nurses suspected Sophia had DS.  The easiest way to describe low muscle tone is that the baby is fairly “floppy” (this is the term we use in our DS support group).  It took Sophia about three or four months longer to do everything from holding her head steady to sitting up on her own.

As time goes by you will hear about the different waivers that are out there.  Our early intervention coordinator described the waivers to us, helped us apply and eventually succeed in getting the EDCD waiver (Elderly and Disabled Consumer Directed waiver) allowing Sophia to get on Medicaid.

In discussing the current terminology, there is another waiver that has changed names more recently.  What used to be the MR waiver (Mental Retardation) is now the ID waiver (Intellectual Disability).  Because there is some level of ID associated with DS, this waiver is worth checking into.  Like the EDCD waiver, it allows the baby to get into Medicaid.  And recently I have heard that this has just become easier to get.

I’ve also noticed some people prefer to use the term “Trisomy 21” rather than DS.  My favorite term is “the extra” … referring to the extra chromosome.

“Using People First Language—putting the person before the disability—and eliminating old, prejudicial, and hurtful descriptors, can move us in a new direction. People First Language is not political correctness; instead, it demonstrates good manners, respect, the Golden Rule, and more—it can change the way we see a person.” – People First Website

Notes from Dad

During those three weeks when we were waiting for the genetic testing results, I found myself getting slightly more comfortable with Sophia having DS.  I have worked for over six years in group homes at Region Ten, a community service board here in Charlottesville, and I have known how amazingly joyous and present people with DS often are.  Nonetheless, I too went through a period of mourning.  I remember when our friend Greg talked about his daughter Sage, saying how blessed he felt.  He even used the words “I feel lucky that she chose us.”  Meeting Sage was a blessing for me as well.  She showed me how kind, loving, sweet and amazing people with DS can be.  I remember hoping to feel this way some day, and I can now say that I certainly do.

I view beloved Sophia as a joyous blessing.  Her smile sets my heart ablaze, and the twinkle in her eyes is one of the most precious things I’ve ever encountered in this life.  I feel very fortunate that I get to experience her radiant joy again and again.  I too like DS being called “The Extra,” because this extra chromosome somehow leads to such a wondrous presence and disposition.  The other day I was thinking of how I really wanted to take Sophia out, to show her off!  I used to get defensive when people would look at Sophia with a quizzical glance; I now feel that Sophia, Jill, our son Bodhi and I have the opportunity to teach these people that looks can be deceiving.  Often people pray for an open heart and a joy that can lift them through all of life’s challenges; Sophia offers us her joyous gifts time and time again.  We love our baby girl.

A Final Note to First Time Mothers

I read an account of a first time mother who thought that the reason people stopped to look at her baby was because her baby had DS.  It wasn’t until she had her second baby who was “typically” developing, that she realized that people just like to look at babies.  When you go out in public, people will want to stop and look at your baby.  This is just human nature.  Although we are very open with the topic of DS, I have come to realize that it’s often just easier to answer the normal line of questions of “what’s her name?” and “how old is she?”  I don’t bring up the DS to strangers just because I’m usually in the midst of running errands and the DS conversations can take more time.

If you are feeling a slight lack or even a large lack of acceptance, just know that this is normal.  In time you will not only fully accept this, but you will grow, change, become more aware, and evolve into better person because of it.  If this were compared to a class, it would be the best class you have ever taken.

Please don’t hesitate to email with any questions or concerns:

Jill Rose

Jillrose999@hotmail.com