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Cri-du-Chat: One mom’s journey with a child with a rare genetic disorder

My name is Jordan Beard. I am a middle and high school Intervention Specialist, focusing on Reading and English. I have two sons Grant (9) and Cal (7). Grant is  a huge help with Cal.  When I am not at sporting events for the kids I love to read and work out.  We are homebodies and spend time swimming at home in the summers or playing outside.  We got a new puppy for Christmas, her name is Dixie and she is a Goldendoodle.

I first knew I was going to be a special needs mom when I was 5 months pregnant with my second child.  Due to head and body size, heart rate, and other factors, the doctors told me there would be something very wrong with my baby.  I was given support, but also “options.”  In other words, my doctor told me that I could have an abortion if I was not prepared for a handicapped child.  I remember being devastated but resolute in my thought that God had given me this and I could definitely handle it.  God won’t give you more than you can handle. Not until after having my sweet Callum did I realize that I would hate this cliché statement.  People say it all the time and I know they mean well, but it’s annoying.  Anyone can handle it, and you do because you have to.

Ways that I keep myself strong enough for Cal are finding time for myself, pursuing what I wanted to do despite hardships, and having an amazing support system.  First, I find time for myself and de-stress almost daily by working out.  Working full-time and being a mom doesn’t allow me time for the gym so I do it at home.  At least 15 minutes per day keeps me mentally stable and helps to keep in shape. I need to be healthy since I have to carry Cal, who is 45 pounds, everywhere.  In regards to pursuing what I wanted, when Cal was 4 years old I decided to start a Master’s program as an Intervention Specialist.  I was in school and worked full time along with being a mother.  There were so many times I felt so guilty for being away but I knew I had to do this for myself in order to be a great mom to Cal.  Last, my support system includes my wonderful fiancé, Marcus, and my mother.  They do everything from care for Cal, mentally support me, and allow me to get a breath in when I need it.  There is no way I could be the mother I am to Cal without them.

Having Cal in my life has been the hardest thing I’ve ever had to do. Surgeries, hospital stays, doctor visits, hours of therapy weekly, and not being able to understand your child really takes a toll on you. Cal has cerebral palsy, cri-du-chat, and congenital microcephaly.  He requires care 100 percent of the time, eats a pureed diet, and we were told he would never speak or walk.  To our delight, with lots of hard work, Cal is walking with assistance.  Even though Cal does not speak, he is very social and loves playing with his brothers, Grant and Beau, and sister, Haleigh.  He radiates happiness and is such a joy.

In regards to advice for other moms, I would remind them that people are kind.  At first, I was on the defensive and was afraid that Cal’s loud yells or constant spitting up would irritate people or make them be unkind to us in public.  I have never experienced anything but empathy and kindness.  Recently, we were at a local pizza joint and the owner came to the table.  He sat down with us, shared his story about his grandson who has a disability, and just asked me about Cal.  I left the restaurant and sat in my car and cried. People usually look, sometimes smile, but this was the first time someone came to me and wanted to meet him.  It is so hard being a parent of a special needs child and the last thing we need is to be scrutinized.

If you are a parent to a child with a rare disease, you can find and connect with other families here: www.rareconnect.org/‎

If you’re looking for more information about rare diseases and genetic disorders, or ways to help, visit https://globalgenes.org/

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