How Life With a Special Needs Baby Is Different Than I Expected

When I received the news that my baby girl had Down syndrome at 12 weeks in utero, I felt many things: scared, sad, disappointed, and frankly, devastated. Feelings of being “lucky” or “blessed” were not among them. I honestly didn’t want to be the mother of a baby with special needs.

All I had read about Down syndrome seemed to be negative. I wondered, what would my baby look like? Would we be spending the majority of our time at doctors’ offices and therapy appointments with little time for anything else? Would my other two kiddos be neglected as the baby would require most of my time and attention, especially with these extra needs on board? Would my husband and I ever have our lives back and be able to spend quality alone time together? Again, according to everything I was reading from medical sources, it didn’t look very promising.

 

When I received the news that my baby girl had Down syndrome at 12 weeks in utero, I felt many things: scared, sad, disappointed, and frankly, devastated.

 

Our baby was also diagnosed with a life-threatening condition called hydrops and was ultimately given only a 5-10 percent chance of being born and surviving birth. Doctors offered to terminate, but we knew we would have her no matter what, even if we believed our lives were about to be turned upside down. But I was afraid. So afraid and so very tired. We had already struggled so much with my typical son as a baby, my daughter had health issues as a baby, and now this. My dream of at long last being able to enjoy the time with my new baby was shattered. Or so I thought…

Fast forward to today—baby Arabella is now 18 months old, and the bleak and gloomy picture I’d been presented and the one I had painted in my mind are very far from the reality of what my experience is like being the mom of a child with Down syndrome.

 

 

When Googling “Down syndrome” before she was born, I read descriptions like “flat facial features; small head; bulging tongue; palpebral fissures; short neck” that made me worried about the way Arabella might look. And with these features present, people, even children, would likely notice that Arabella would look different than they did. In turn, they would probably treat her differently. I am certainly biased as this is coming from her mama, but she is absolutely gorgeous! Her “palpebral fissures” (almond-shaped eyes) are now one of my favorite physical characteristics about her. From the first time I held her I was blown away by how beautiful she was.

 

The bleak and gloomy picture I’d been presented and the one I had painted in my mind are very far from the reality of what my experience is like being the mom of a child with Down syndrome.

 

Life is certainly a bit busier as we juggle various therapy and doctor appointments, but we do not “live” in these doctor and therapy offices. Arabella has congenital hypothyroidism, which is an underactive thyroid gland, a couple of minor heart defects that we keep an eye on, as well as physical therapy and feeding therapy appointments. Arabella’s underactive thyroid gland is treated with a very tiny pill each morning, and a blood draw and a visit to the endocrinologist doctor once every three months.

Arabella is very strong and has been meeting the majority of her gross motor skills right on time. Physical therapy for us is only once every 2-3 weeks at this point, along with feeding therapy to help with some swallowing issues. The vast majority of our time is spent enjoying her and our other two kiddos and getting out and experiencing the joys of this world (as much as we safely can during a pandemic). I know that in her future she may likely require more therapies and interventions, but she is well worth it.

 

 

My other two kiddos have learned to adjust to having a baby in the house who takes time away from them (as any baby does). But they are certainly not neglected as I had once feared. It is really amazing to see how much they love their baby sister and cheer her on as she reaches new milestones.

I have already seen the effects of the special bond that she and my son have formed. It is beautiful to see the gentleness and kindness that emanates from him as he interacts with his baby sister. And the way her face lights up when she sees her brother brings this mama’s heart tremendous joy. I truly believe that my typical son and daughter will become better humans for having Arabella in their lives. They will learn to see the beauty and value of individuals who are different than they are, and they will become more kind and compassionate beings who learn to love in an even deeper way.

 

I truly believe that my typical son and daughter will become better humans for having Arabella in their lives. They will learn to see the beauty and value of individuals who are different than they are, and they will become more kind and compassionate beings who learn to love in an even deeper way.

 

I feel as if Arabella’s Down syndrome has strengthened my relationship with my husband. Going through the whole process of Arabella’s prenatal diagnosis, as well as facing the heartache of when we thought we were going to lose her, has strengthened our bond and has brought us even closer. We share common joys and struggles that allow us to relate to each and lift each other up in an even deeper way. I feel an even deeper respect and love for my husband as I get to see the way he loves and cares for Arabella.

 

 

I still have certain fears and concerns. How will she be treated by her peers and others as she gets older? Will she experience being bullied? We have already received our fair share of hateful, hurtful, and disparaging comments from strangers on Arabella’s Instagram. Will she be able to make good friends? What will happen to her if my husband and I are to pass before she does? Will she be independent enough to care for herself? And if not, who would help care for her? She is pretty healthy for now, but I can’t help but look toward the future and wonder whether she will one day develop Alzheimer’s or another condition more prevalent in individuals with Down syndrome?

I am realistic. I know that as time goes by my mama heart will likely be shattered on many occasions as I experience some of these things. But I will pick up the pieces, get back up again, and stand even stronger than before. As Arabella’s mother, I will do my best to help her, while giving myself grace and surrendering that which I cannot control.

 

I know as time goes by my mama heart will likely be shattered on many occasions as I experience some of these things… but as her mother, I will do my best to help her, while giving myself grace and surrendering that which I cannot control.

 

I am extremely thankful for Arabella and I wouldn’t change a single thing about her. The love Arabella has given to me and our family is beautiful and special, unlike a love I have ever known. She is pure joy: a light and a beautiful soul. As I go about each day, most of the time I don’t even remember that Arabella has Down syndrome. To me, she is just Arabella: an amazing little person who is way more similar to my two typical kiddos than different. I wish I had known then what I know now—That life as a mother of a child with Down syndrome is a good one that I wouldn’t change for the world. I am lucky. I am blessed.

 

Read More: 5 Ways to Move Forward After a Special Needs Diagnosis