Then end of Down Syndrome Acceptance Month….but not really.

It is the last day of October, the last day of Down Syndrome Acceptance Month, as we all know it does not end here!   We wanted to share the words of one sweet mama who’s sweet little girl came with a little something extra, taught so much in her short time on this earth and still inspires her family and community.  Welcome Bella’s mom, Erica, to the blog.

“On the last day of the month, I share that October recognizes so many important awarenesses this month: breast cancer awareness, domestic violence awareness, and Down syndrome awareness. I would like to share just what Down syndrome awareness means to our family.

Following a storm creates a rainbow. ? After a storm of miscarriages that we endured, Bella was our “rainbow baby.”  Jim and I were blessed to find out that we were having a healthy pregnancy with Isabella, in June 2015. At our 20 week anatomy scan, our sonographer let us know that she could not detect a nasal bone. With no indication whatsoever that Down syndrome was even a concern or a worry- yet, we would follow up with another ultrasound in two weeks. At 22 weeks our nurse practitioner told us that Bella’s nasal bone was still absent. I remember hearing her say “something- something- an absent nasal bone is a soft marker for Down syndrome,” and my mind went blank.

“How could this be?” “How am I going to tell my husband?” I honestly don’t even recall how I made it home.
But my optimistic, brave, loving, supportive, and the backbone to my life–my amazing husband told me that if our Isabella does have Down syndrome, we will love her unconditionally.?

Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from the 21st chromosome. Down syndrome varies in every person and their intellectual abilities.

I always find this very important for our own sake, and for the wonderful women in my life that have shared their own stories. Through our entire pregnancy, never once was the mention of terminating our pregnancy an option nor mentioned to Jim and I. Even in this day and age- so many women find out their baby may be born with a genetic abnormality, or worse, however, myself speaking- I could never imagine not bringing our amazing Bella into this world, especially knowing darn well that she would be born, God forbid we say- different.

I opted to take a MaterniT21 blood test that would verify whether or not Isabella had Down syndrome.
Waiting for the results was like sitting on pins and needles, for weeks. While we waited for our results, we were referred to the perinatal center for genetic counseling to discuss further details about the possibilities of our daughter having Down syndrome, and how to prepare for a child with special needs. If you were to ask Jim or I, we would both tell you that our experience with the center was not the greatest- we surely did not receive a warm and fuzzy feeling, and we didn’t find the overall appointment helpful. When you get called into what felt like the principal’s office, get a box of tissues shoved over to you, you feel shamed. We left that appointment feeling like a Down syndrome diagnosis was the end to our world, like it was a death sentence. Never mind the important fact that I am finally a pregnant woman, more than halfway through my pregnancy, and I have a little girl inside of me that I can’t wait to bring into this world, and we have a big sister at home who knows no difference.
Luckily, we snapped out of that woman’s little world, and we left that office feeling like it was up to us and the life of google.

Jim showed me website after website of many positives of individuals living with Down syndrome and sharing their stories on the web. He came across “The Love Chromosome,” which became a favorite website of ours. A beautiful woman named,
Julie Tennant(GiGi’s Playhouse Syracuse Board Member), who was born with Down syndrome, alongside with her, her awesome brother, Derrick Tennant; together they enjoy sharing their amazing adventures, and Julie enjoys sharing how much she loves her life. Julie, you gave me hope for our Bella’s future, and I love to see such love and hope for a diagnosis with Down syndrome. Thank you for being you! Keep doing what you’re doing, you and Derrick!❤️

Weeks later it is confirmed that our prenatal diagnosis is positive for Down syndrome. We beat the 1 in 635 odds that our Bella would have Down syndrome, and do you know what, it’s pretty awesome!
Deep down we knew Bella had it, but receiving the confirmation is a whole other feeling. Once again, I had to tell Jim over the phone, (whom was away for work) in a crying frenzy that Bella really does have Down syndrome. He reminded me that we would make everything work out, and no matter what- Isabella was going to teach us great things.

Did you know that a woman has a higher risk of having a child with Down syndrome on average of 35 years or older?
I was 32 years old when we conceived Isabella. Neither my husband or I have a family history of Down syndrome in our families. *(1 in 635)

Shortly after Bella’s Down syndrome diagnosis, we were made aware through ultrasounds that she had a myriad of heart defects. We would follow up with a pediatric cardiologist for the next couple of months to monitor Bella’s heart. As our baby girl grew so did the understanding of what our doctor had to work with. He would share that Bella had a TOF (Tetralogy of Fallot) and a VSD (Ventricular Septal Defect). The diagnosis of Down syndrome seemed to on the back burner, this all seemed so crappy, so unfair to our baby girl. Well before any of Bella’s diagnoses, how we prayed for a healthy baby. The power of prayer would be even more substantial.

Amongst a child born with Down syndrome comes along the possibilities of heart defects, ears, nose and throat problems, stomach and kidney diseases, along with many other issues. Multiple kinds of doctors will be seen in your child’s future.

It was that Tuesday evening, on October 6th 2015, at 7:08pm our beautiful daughter,
Isabella Jane Garrisi was born into this world. With all of the guilt, worry, the unknown, excitement and anticipation, Bella was born! And would you know, that being in our room- Down syndrome wasn’t made at a all a big deal or an issue. We enjoyed being new parents to our new baby girl- that’s it.? At least until the NICU unit took her upstairs to monitor her. 

With only four days staying in the NICU (thank you, God) Bella was discharged and we enjoyed our family of four at home.?
Before being discharged from the hospital, Bella was already put into the system to receive early intervention, that would account for physical therapy and in time, a speech therapist. Within Bella’s first week of life we had a nurse coming into our home twice a week for weight checks. Another week and a half later we had a few people from early intervention come into our home to watch and monitor Bella: how Bella suckled from a bottle, how she reacted to mom and dad vs a total stranger, how she tolerated tummy time, to- could the therapist hold her attention with a rattle, checking hearing, and so on and so forth. I hated every minute of having strangers in my house, around our newborn. It was our time to have snuggles, and cuddles, and adjust to newborn Isabella.

Babies born with Down syndrome are usually born with low muscle tone. That could mean the baby has a difficult time suckling, having loose joints, low muscle head and neck control, and it is advised to seek early intervention. Of course we would do anything and everything to help Bella now and in her future. With the assistance of early intervention our amazing therapist began coming regularly into our home and began working with Bella. (We love her to this day!!!)

We all learn of diagnoses in different ways. Jim and I consider ourselves lucky to have had our doctors find the soft markers through Bella’s ultrasounds. It helped us to prepare ourselves and get monitored with extra prenatal care.

We are still learning. Without Bella’s assistance teaching us here on earth, she is still teaching us from heaven. We are eager to learn more and more about Down syndrome, and more importantly we all need to accept it. Down syndrome does not make a person who they are. You can make the difference by acceptance.

No matter who you are, what you were or weren’t born with, we are all so much alike than different if we just step back and enjoy this day. We never know when it could be our last.~

Thank you for being you, Bella?
?We love you forever, our angel~

#isabellasblessings #downsyndromeawareness #downsyndromeacceptance

Jim, Erica, Liv & Bella, the GiGi’s Playhouse family loves you. You are such an amazing part of us, and you each do your beautiful girl so proud. Thank you for sharing and loving the way you do.

educate.inspire.believe