“April showers bring May Flowers”. That is what we are reminded of when we think of the month of April. However, more importantly (yet less discussed), April is the awareness month for Autism and Limb Differences. Some people are born with limb differences while others live with the loss of a limb later in life. The awareness and knowledge that has been brought to light surrounding people that aren’t typical has changed the society in which we live and will only continue to improve the lives that we’re shaping for our children and others.
Having a child is one of the most beautiful, joyous, yet terrifying experiences in anyone’s life and to find out that your child will have a limb difference only adds to the overwhelming feeling of uncertainty. Your mind floods with concern, grief and anger and you worry about the impact that it will have on your unborn child. The biggest question that plays on repeat in your head is, “How will the world treat my baby?” You worry about the looks and the reactions that people will give you, the questions people will ask and the responses that you will have to give.
I will never forget the first moment my son was laid on my chest. He was absolutely perfect. The most beautiful representation of strength I had ever seen. A baby who was fortunately brought into the world at a time when inclusivity was at the forefront of everyday life; sharing knowledge and information is helping to break stigmas surrounding people who aren’t typical. There would always be challenges, but I knew in that moment, I would do everything possible to make anything possible for him.
I got the confirmation that my son had Amniotic Band Syndrome, which is a rare condition caused by strands of the amniotic sac that separate and entangle digits, limbs, or other parts of the fetus, causing them to not fully develop. After receiving that news the first question out of my doctor’s mouth was, “Have you done recreational drugs since you’ve been pregnant?”. As I choked back tears I quietly said “no”. All the while in my head I was screaming “If you only knew how hard it was for me to get pregnant and how much I’ve wanted to me a mom, you wouldn’t be asking this!”
I tried to move past the initial feeling of shame, however I only went into a darker head space asking; “What did I do to make my son deserve this? How could I have prevented this? How can I fix it? What is wrong with me?”
The simple answer to every question was “nothing”. But, I couldn’t accept that. I needed answers; answers that I never got until my son started growing and showing me how truly ignorant I was. I was so consumed by my thoughts and wondering what other people would say or think I never stopped to think about who he was as a person. I didn’t give myself time to get to know him before I pitied him and that is my greatest regret; a regret I will live with forever.
I now know that he is curious and so funny. He is smart and happy. He is unafraid and unhindered. He is full of wonder and creativity and he will always eat avocado over banana and he will choose Taylor Swift over anything else. He is the perfect combination of love and grit and I couldn’t be prouder to call him mine.
I will never stop advocating for my son and for anyone who may not be typical. Anyone can be an ally by educating themselves and their families on ways to be curious and engage in conversations that normalize differences. In the United States 1 out of 1,900 babies are born with a limb difference each year, and 1 in 190 are living with the loss of a limb due to amputation. There are resources that are widely available to educate and inspire and authors who celebrate all kids by writing inclusive books. Please utilize and engage with these resources and consider purchasing books to share with your family, friends or your local school to keep the conversation going and continue bringing awareness!
