In March of 2011 I was ginormously pregnant with twins. I was on an emotional roller coaster of wanting the babesters (our nickname for the twins) to make their appearance and wanting them stay right where they were before things got too crazy. I had a six year old and three year old daughter at the time and we had just moved to a new town.
I knew that the twin boys I was carrying were going to make life very interesting but I had no idea how my life was really going to change.
Despite the fact that I was carrying twins, I had an uncomplicated pregnancy and when I went into labor our biggest concern was that baby b was still breach. I delivered the boys around 11pm, four minutes apart.
Luca (baby b) was getting a lot of attention once he was out. I kept asking if everything was ok and the nurses assured me he was, but they tried to whisk him out of the room without giving me a chance to hold him. I looked at my little 5 lb baby and knew he looked different but I had no idea why.
I was wheeled back into a bigger room and everyone left me. My husband and mom were down with the babies and no one was telling me what was going on. Finally my husband came into the room and he made a beeline for the counter, completely avoiding eye contact. “What is going on??!!!” I yelled! Stumbling through his words he told me that they thought baby b had Down syndrome.
The next two days were a blur. I mostly sobbed. I was so afraid. My husband kept it together and started researching but I was a total mess. I had never met anyone with Down syndrome. I had no idea what our life would be like but I was convinced it would be sad and miserable.
I had no idea how I would tell all my friends that were so excited about the twin boys that one of my twins was broken.
When we announced on Facebook that Luca had Down syndrome we were immediately covered in love and rallied around. I got messages and stories and so much support from my friends and family. I began to turn the corner and thought “ok one step at a time”. I made short term goals for myself. Giancarlo was released after two days but Luca had to stay in the NICU. I had to drive back and forth twice a day to feed him. So my first goal was to make a ton of milk for Luca so that he could grow. The second goal was to breastfeed him. Then the goal was to get him home. He had no health issues but I believe the hospital was just being cautious.
He very fittingly came home on March 21st which is World Down syndrome day.
I was terrified of Luca at first. He was so different from Giancarlo. Giancarlo was a strong, mad and starving baby and Luca was this super floppy, mellow and sleepy baby.
I was afraid he would die on me because I didn’t know what signs to look for.
I was a complete mess most of the time. However, he was a very healthy little guy and as he got a little bigger and sturdier I became comfortable around him and my love for him grew to enormous proportions.
The first year was a blur of adjusting to life with twins and juggling therapies with school, preschool and family life. Luca quickly became a favorite especially to his big sister Bella. We did our first Buddywalk when Luca was two and by this point we were all in. I was proud to be a mommy to a child with Down syndrome.
When the boys were around 3, I began to notice that Luca was regressing. He had lost his many signs and was no longer using his handful of words. He spent a lot of time dangling and staring out at the sky. When I would pick him up from preschool he wouldn’t notice I was there until I got right in his face. I researched and realized that we were now also dealing with Autism. There was no question in my mind.
Honestly, this was the darkest moment for me. I thought that I was healed from the shock of his birth diagnosis but realizing we had another diagnosis on top shattered my heart all over again. I sobbed in the car after dropping off the kids for a month. It seemed so unfair to him. Luca already had a disability and now he had another diagnosis that was going to make things even harder for him. I waited until he was four to have him assessed and he got a diagnosis of autism around his fourth birthday.
As emotional as our life with twins has been it has also been filled with joy and laughter. People balk when I say the boys are twins because their size difference is enormous. Giancarlo is a very bright, very active boy. He loves to be outside, to play with legos and superheroes. While his relationship with his twin brother is tricky now I have no doubt that he will be a fierce advocate for his brother as they get older.
Luca means “light” and he truly is our ray of sunshine. He loves music and animals and being outside. He also loves to eat. That is a word he never lost ha! Developmentally he is way behind other kids his age with Down syndrome but he continues to make progress and I know we’ll get there. While we’ve missed out on the “twin magic” that many experience the boys clearly have a special love. When Giancarlo gets upset it breaks Luca’s heart and he bursts into tears. Giancarlo has to hug him and reassure him that he’s ok before he calms down.
I remember one night in the hospital after delivering, I was reading blogs about Down syndrome and one mom said she didn’t see her son’s Down syndrome and I bitterly thought “Well I do!!”. Now I get it. Luca is just Luca. I don’t look at him and see Down syndrome I just see my sweet son.
I never planned to be a twin mom or a special needs mom. I would have been the first to tell you that I was a terrible candidate for both. There have been many hard days and buckets of tears but I am truly ok. I love all my kids fiercely. I have a huge spot in my heart for children with disabilities that I never knew was there. I have also learned that I can be pretty darn tough when I need to be. I have built a support system of wonderful people who love us and have helped us when we needed it most. Life is not perfect but it is still wonderful.
Sharla is a loving wife and happy mother of four kids. She loves reading, shopping, and coffee. When she is not driving kids around you can find her hiking in the woods and taking pictures. Follow along Sharla’s adventures on instagram @unfancymama
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