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WHAT IS IT LIKE TO EXPERIENCE LOSS ON YOUR MOTHERHOOD JOURNEY AND HOW DID YOU COPE WITH THIS LOSS?

The loss I experienced is different from most. I didn’t have a miscarriage or deal with losing a child. I was able to bring my child home and watch her grow, but there was still a loss. When I was 20 weeks pregnant I was sent to a neonatologist because the Sonographer doing my anatomy scan couldn’t see the baby’s heart well. It was a week before Christmas. The neonatologist looked at the sonogram and saw that my baby had a heart defect that usually correlated with Down syndrome. Without even giving me a chance to process what was said I was getting an amniocentesis and a positive result for Down syndrome. I mourned the normalcy of motherhood that I wouldn’t get to experience. I mourned the typical child that I thought I should have had. Even months later, The first time I held her in my arms, I was still mourning her. I didn’t see my child. There was no special bond or love at first sight. All I saw was her diagnosis and an unknown future. A future I feared. For me, The only coping mechanism for this type of loss is support. Find people who can relate, give advice, and surround you with love. People who will be there for the rough days and the good days. People willing to go through life with you. I also cling to my daughter knowing there was a reason. There had to be a reason she was given to me and I her. So I just kept moving forward. After all if you don’t move forward where else can you go? Someone once told me that a child with Down syndrome got one chromosome from mom, one from dad, and an extra special one from God.

WHAT IS IT LIKE RAISING A CHILD WITH A DISABILITY?

Honestly it’s more like raising a child without a disability than you would think. Sure, we reach developmental steps later than peers, and we have doctors’ appointments to work our schedules around. And yes, there are medication changes and behavioral issues. But ultimately a person with a disability just has different needs.... just like everyone else. You wouldn’t test a fish by its ability to climb a tree, right? Equally, every child... no, every human is different and unique in their own ways. Some days are harder than others, but some days are more amazing than any parent of a typical child could understand.

WHAT ARE THE CHALLENGES / REWARDS OF RAISING YOUR CHILD?

I used to think that the most challenging thing I’d go through with my child was handing her to the heart surgeon when she was only a measly 18 pounds. Hoping and praying for her and all working in her care. Anxiously waiting to be able to hold her again. To some degree, I was right. To another, I couldn’t be more wrong. It’s amazing what the mind is willing to forget. As her health became less of a worry, you forget the long days of forced feedings with a syringe. You forget the moments where her body turned blue and goes limp. You forget the scary moments that you wouldn’t wish anyone to go through.

 And now your worries change. More and more research is finding a link between Down syndrome and neurological conditions like ADHD, autism, anxiety, depression, and oppositional defiant disorder. So today, our challenges are these. Our challenges are the society who still doesn’t see her worth. The kids who bully her because she isn’t like them. The adults who stare or make comments. Our challenges are not always what they appear. However, all of these are far surpassed by the rewards. My daughter has taught me more than any other child could. She taught me to love. She taught me to live. And she has taught me how to forgive. Her views of the world are still so pure and innocent. She reminds me to slow down and enjoy life! The good, the bad, and the ugly.