It’s a Beautiful Life- Down Syndrome Diagnosis

Where to begin?  I think I’ll take you back, to my own words I documented.

“yesterday – October 22, 2009 – I received the results from my amniocentesis: our little baby girl has an extra #21 chromosome, down syndrome.

I won’t lie – I have what feels like a world’s worth range of emotions!  … I never, EVER imagined I would be the mother of a “special needs” child.  If I’m quite honest, I’ve never been “drawn”  to special needs (although I’ve had friends who were and are) … children with down syndrome have always intrigued me, I guess, but I’ve never really had any interaction with them … and certainly never thought I was the “type” to deal with being a mommy to a child with Down syndrome!    

Well, you know what they say, God knows best!  It seems God has much more faith in us than we do … My hope for her is that she’ll have a good life, I don’t want life to a struggle for her.  I want her to be a “functional”  adult and be able to enjoy all the things we enjoy as a family!  Of all the fears that can go through you when expecting a child, this is not such a big deal to me – I’m trusting in God and having faith that His divine plan is coming forth.  Sure, I secretly pray that he’ll “heal”  her and she’ll be “normal” … at the same time I pray that He’ll guide me and teach me how to take care of her and her potentially special circumstances.”

There it is.  Raw, honest, lacking in first person language.  In sharing this here, I really wanted to leave some parts out – because I feel ashamed and guilty of some of those things I said, but that was how I felt in those earliest moments.  That was the start of our journey with down syndrome.

In the spring of 2009 we found out we were expecting our fourth child.  When it came time to find out the gender, we were told we would have a baby girl – I was thrilled!  We were also told that our baby had enlarged brain ventricles.  Each of my pregnancies had come with minor hiccups (attacks that ended up being my gallbladder, potential gestational diabetes scare, me being diagnosed with hypothyroidism) but this was brand new territory.  We had never encountered any prenatal issues with our first three babies, so this was very scary.

A month later I had to go in for a follow up ultrasound.  The good news was that the fluid on her brain was going down.  The bad news was they were pretty sure our baby girl had at least one hole in her heart.  I was told that this could indicate a chromosomal abnormality and an amniocentesis was suggested, because “you only have about a week” … just days left if I wanted to “terminate the pregnancy”.  I still remember how shocked I felt at what was being presented.  I was sure to make it known that regardless of anything, termination was not an option for me.

Within days I was headed to Children’s Hospital Los Angeles to see a specialist for a higher level ultra sound, ultimately we would learn that our baby girl had a complete A/V canal defect.  Following that, I was back for another appointment with my obgyn and I did go ahead with the amnio.  It was a hard decision, my husband felt it would be better to know and I could see the benefit as well.  Waiting for the results was so difficult and felt like forever, I remember praying over and over that the results would come back “perfect” … and they did, I just didn’t know it at the time.

The diagnosis came via a phone call from my obyn.  He got right to the point of his call and said “I’m sorry, your baby does have down syndrome.”  In that moment, everything changed.  Up until then it was all just a maybe, a possibility, a what if – but now it was a reality.  Our baby would be born with down syndrome, she would be “different”.  We didn’t know what this diagnosis meant for our daughter, for our other children, or for ourselves.  I was definitely scared of all those unknowns and especially worried about her little heart, but I loved her just the same as I had since the moment we learned we were expecting her.  I decided to look up the meanings of some names we had on our list, including one we had liked for years.  When I saw that it meant “life”, I knew that was her …  Zoey.

The remainder of my pregnancy was closely watched, but uneventful.  On January 22, eleven days before my due date,  I began having signs of labor.  I was in total denial about it all day.  This was my first time to go into labor (I was induced with my first three) so I kept thinking, no this can’t be it.  But it was, and in the wee hours of the morning of January 23 our Zoey officially entered the world!  The moment they handed her to me wasn’t recorded, no video or photo exists, but I remember it so clearly.  I looked at her sweet tiny face, our eyes met … and every bit of fear I had had was gone in an instant.

Zoey spent two and a half weeks in the NICU of the hospital (in Santa Maria, CA) where she was born, but she was struggling to stabilize.  So, she got to take a helicopter ride to Mattel Children’s Hospital (Los Angeles, CA) where she spent another three weeks before being released to come home.  She came home on several medications as well as a g-tube for assistance with getting her nourished.  At just shy of three months old she had her open heart surgery and she was a different baby immediately.  No longer weak and tired, she now had energy and sass!

Zoey is seven now.  It has been seven years of her rocking our world in the best of ways.  She has faced some challenges and, as expected, she has her own timeline of development  … but mostly she’s just like any little girl!  She loves to color & draw, play barbies & dolls, swim & swing, she’s obsessed with Disney princesses, she loves movies (I call her my mini movie buff), her favorite food is chicken fries, and right now she’s sporting the most amazing snaggle tooth smile!

With Zoey, every day is an adventure.  Every day holds promise and happiness.  Every day is a reminder that life is beautiful!

 

Sasha lives in Northern California with her husband and four children.  Passionate about sharing her message that  “it’s a bella zoey” (it’s a beautiful life) she loves to document daily life through photos, videos, and words.  Currently in the process of adopting for the first time, her family is adding another little girl who rocks an extra chromosome!  Follow their journey on instagram, @itsabellazoey, or on their blog, ItsabellaZoey