So, because of Gelli’s extra chromosome, I have come to realize that the world is much smaller than I previously understood.
Evangelina stayed in the hospital longer than we first thought she would due to the fact that she had duodenal atresia.
I know this because while Gelli was in the NICU recovering from corrective surgery for her duodenal atresia and malrotated intestines, I was searching blogs and crying through the stories I was reading of mommas across the world.
I read stories of hope.
Stories of inspiration.
Stories that made my heart hurt.
Stories where faith brought families through some crazy challenging situations.
Gelli is six years old now. She will be seven this year. Seven is a big milestone here in the Philippines. I’m not quite sure why, but I know I will celebrate this little girl every day…and while I enjoy making a big deal of all my kids’ birthdays, I know that each day is a gift.
BIRTHDAYS and all.
But the truth is, I also know that kids like Gelli don’t always have the same chance that she has.
For whatever reason this may be, I will not judge.
But I will hold the medical community responsible for words spoken carelessly.
If Krista wants to look for inspiration to continue doing what she doing, she doesn’t have to look far. Adele provides more than just the sunshine in her days…
Just like my friend, Krista Rowland.
I wrote about Krista last year when I stumbled upon the way she was changing the world one basket at a time…
Krista prepares “Welcome Baskets” for families who are blessed with the new addition of a child with Down Syndrome. She visits with these mommas as they begin a new journey, and offers support, friendship, and the voice of experience. She brings together people who want to give and who want to help, and connects them in a real way through the work that she does in curating these “baskets full of blessings” to a family adjusting to the idea of THEIR new blessing.
It’s beautiful.
It’s something I wish I had when Gelli was born.
It’s something that I knew I had to feature when I found her on Instagram and asked if we could be “cyber friends.”
So, part of the friendship that I am blessed with through the internet and social media provides me the ability to stay current with events and milestones that can be considered both positive and negative in our international special needs community.
I also get to keep up with other cuties like Adele who lives on the other side of the world, but has and advocate living in Manila…How awesome is this community that we live in?
Which leads me to why I am posting today.
Awhile back, through Krista’s personal Facebook page, I learned of a disturbing conversation that took place with a new momma and her pediatrician.
It was offensive, insensitive, and uneducated.
I asked Krista to share her thoughts with me, of course, as I shared mine with her regarding this very controversial topic, and we both felt that it was something that should be shared with others as well.
But I will let her tell you about the experience through this guest blog post:
Recently, I delivered a basket to a very deserving and beautiful family. I sat in their living room, snuggling their sweet, brand new baby girl. Momma told me that after delivery, the pediatrician came into her room and said “You should have gone for the twelve-week ultrasound because you could have aborted.”
I sat in silence.
I looked down at the little piece of perfection sleeping on my lap and thought about our world, I thought about how insensitive medical professionals can be, I thought about ignorance being perpuated and how society has such a long way to go.
A baby.
A life.
All life has value.
Who has that authority and power to tell a family that their child has no right to life?!?!
It’s overwhelming for families, but with the right support system and community resources to help guide parents, it somehow, all works out.
My little girl has brought so much love, laughter and light into our lives and to countless others all across the globe.
Four and a half years ago, my world became a better place.
If the doctors only knew.
If the world only knew.
If a**holes like Tom Segura only knew.
Judging before knowing.
What does the future hold for our community?
A new mom was telling me that they received a pre-natal diagnosis and that all throughout her pregnancy, she was encouraged by doctors and medical professionals to terminate the pregnancy. As she was telling me this, I could feel my blood start to boil and my heart really did ache for this beautiful family. Mom is not from this country, so she has some difficulties expressing herself and finding the right words. She was not able to stand up for herself in the way that she wanted to. She knew that she wasn’t going to terminate her pregnancy but she didn’t receive the support and guidance that she deserved.
After almost 80 basket deliveries to hospitals and homes, why is this the norm?
Why are families being told:
“I’m sorry.”
“Something is wrong with your baby.”
“You should have had the twelve-week ultrasound.”
“It’s going to be a hard, long road.”
“Your child will be a burden on society.”
This has me asking myself questions like:
“Why are families who receive a pre-natal diagnosis being encouraged to terminate?”
“Why are they being asked multiple times if they would like to end their pregnancy?”
“Why are they leaving the doctors’ offices without resources, without any guidance?”
When we received our diagnosis, I was 15 weeks pregnant.
My OB was caring, compassionate and she allowed us to grieve. We did grieve. We went through a few weeks of feeling sorry for ourselves, lots of worry, fear and upset. We were entitled to this time, but we also were surrounded by people who didn’t allow us to wallow for too long. The medical professionals in our lives didn’t tell us that they were sorry or that our child with Down syndrome would not have a bright future. They took us by the hand and guided us in the right direction. They gave us facts about OUR unborn child, not a book filled with grim statistics that were not relevant to our pregnancy. We focused on the ultrasounds and we educated ourselves.
I don’t know what James and I would have done if we were told over and over again that this child had no right to be in this world, that she would be a burden on society or that this child would be a burden to us and our family. We looked up to these people, we valued their opinions and knew that they would never tell us to do something that we would later regret, for the rest of our lives. You are vulnerable when you receive news that you don’t expect. You are in a state where emotion takes over logic. You fear the worst and let worry creep into your mind.
All you need is for your hand to be held and told that it will all be ok.
You need to be told to breathe and relax and to not let those who are ignorant and uneducated dictate what you should do with your body, with your child, or with your future.
I am not for banning abortion when a family receives a pre-natal diagnosis. I was not put on the earth to judge others. Telling a woman what she should and shouldn’t do with her body, is the wrong way to go about it.
What needs to be law, is that when a family receives the diagnosis, they must be given unbiased information and educated. New parents should instead be required to meet with a family who is qualified and can fully explain the beauty of having a child with Down syndrome. This type of sharing, can only come from someone with experience on what children with Down Syndrome can achieve.
However, when a woman receives a diagnosis and is told simply, that it is against the law to terminate. And when that same bearer of news hands her a pamphlet and sends her on her way, that is not making advancements either. With education and support, a woman and her family will see the potential and the beauty of the journey that lies beyond the diagnosis.
As I sit with new families, they sometimes feel lost, they aren’t given the resources, the forms, nor the community support that is available to them. They are fearful of the future and are unsure of how to proceed.
I know it is my job to reassure these families and promise that I will hold their hands and be the support that they need and deserve.
I badly wish that the world would change.
I know that it sounds like such a silly statement, but I do feel discouraged some days.
It is going to take each and every one of us taking some sort of responsibility to change this world.
We all need to be in this together.
We have to be the parents that our children need us to be.
We need to keep advocating.
We need to keep showing the world the beauty that lies within each of our children.
When we stand together, we will be the change that the world needs.
I agree Krista. I know you do it all for Adele. Just as I do it for Gelli. And each and every baby that is lucky enough to have that perfect extra chromosome.
If you want to find out how you can donate to Krista’s cause check out the links below:
http://aperfectextrachromosome.blogspot.ca/
https://www.facebook.com/aperfectextrachromosome/
