As part of my #29DaysofAwareness I have asked friends and family to write a post on anything that they would like that relates to Down Syndrome.
Because today is Miguel’s Birthday, I have asked him to put something simple together for Gellibean for his guest post.
He opted to write a poem.
L-ike the most amazing person ever
I-mportant in my life
When Gelli was born I went through a gamut of emotions in those first few moments after her neonatologist handing me a diagnosis based on markers for Down Syndrome. I laid in a hospital bed, grappling with fear, guilt, and sadness. Emotionally, I was all over the place and I had definitely lost my way.
Earlier that morning, when I started laboring, we set some plans with the kids. We told them to finish out their day at school so that after school was over they could proceed to the hospital and have merienda together. I knew they were looking forward to meeting their new baby sister.
The kids had all given us input…we named our baby together. They agreed that she should be called Angelina. (Nino and I decided after she was born to name her Evangelina, which means God’s gift.) We decorated the nursery together, picked out baby clothes, and all waited patiently for her arrival.
The whole family was ready for our sixth and final member to join us.
But after giving birth, when I had enough time to think about it, I asked Nino not to have the kids come anymore. To be honest, I wanted time to think about how I was going to explain Down Syndrome to them. I thought that how I explained everything to my three big kids would lay the groundwork for our family, their understanding and their love for their baby sister.
Nino convinced me that they should still come as planned. He said it would be terribly disappointing for everyone if I changed the plans and didn’t allow them to come and see their baby sister. They would worry, and that would be unfair.
Nino said he would take care of it. He said we didn’t have to explain her extra chromosome right away…
I’m glad he pushed me to to follow through with our plan.
The kids arrived. They all gave me kisses and proceeded to the PICU to meet their newest sibling, while I waited in the room. Gelli had to be monitored closely because of her condition. She was born in distress. She was blue, had duodenal atresia, and the bile had to be drained from her stomach. They were monitoring her oxygen, while testing the condition of her heart and checking for any other possible complications that might inhibit the corrective surgery that was scheduled to take place early the next day.
Because my epidural was still wearing off, it was hard for me to walk down with them.
When they entered the hospital room again, I asked each of them what they thought of their little sister. This was a moment that will forever be ingrained in my memory. This was the beginning of my education as a mom of a child with special needs. This was the moment when my three big kids would “school me” in a lesson of love.
Gia said, “She’s so tiny, Mom!”
Miguel said, “She’s cute as a button!”
Diego said, “She’s beautiful, Mom. When can we take her home?”
Their reactions, so pure and full of love opened my eyes to the gift I had been given. I went back in time to a yoga retreat I had attended when I was going through parenting challenges with Miguel. My teacher said we are always in learning situations. Sometimes we are the teacher, sometimes we are the student.
Now, I have always shared how even if I’m a teacher, what my students don’t know, or in this case, my children…is just how much I learn from them.
How lucky am I?
Today, I celebrate my son’s birthday.
I celebrate my daughter’s extra chromosome.
And I remember to be thankful for each of them with all of the differences and their similarities, and their amazing love for each other.
Happy Birthday Miggy Mange. Thanks for writing a short poem for your baby sister. Thanks for teaching me about how easy it is to love you and your siblings each and every day.
Parts of this post were taken from my very first foray in writing in a very public way.
In 2011, I pitched an article on DS Awareness to my friend Barni Alunan Escaler who was an editor at Working Mom at the time. I took forever to write that piece. I cried my eyes out and wrote a novel. It was cathartic. It was exactly what I needed to begin my journey in writing and sharing our stories as Gelli’s mom.