Today’s post is a Guest Feature Post from our North Carolina A&T SU colleague, Soror, and fellow Posh Mumsy Shakeika. Shakeika’s daughter Madison was diagnosed with Arthrogryposis on what was supposed to be one of the most happiest and anticipated days of a woman’s pregnancy – Gender Reveal Day. Read Shakeika’s post below.
My Child has what? Reflections on raising a child with special needs
For many first time parents (or parents in general), expecting a child is a wonderful and joyous occasion. You’re anxious and excited to find out the sex of the baby, put together a registry and pick out names! In all that excitement, the thought of your child having a special need (at birth or later in life) never really crosses your mind. I know for my fiancé and I it didn’t. Today, I sit back and reflect on that day a year ago when with our families, my fiance’ and I went to find out the sex of our baby. It was during this sonogram that we were told that our child was suspected of having a physical disorder. I can remember that moment on the table when the doctor said “we see calcifications on the liver and suspect this baby will have Arthrogryposis*. Do you want to terminate?” I remember tears streaming down my face and asking God “why me?” I remember feeling guilty, upset, and most of all devastated at all the things I was told. The weekend before my precious gift was born, it was found that she had polymicrogyria**. The doctors didn’t think she would make it. They were concerned about her transition into the world. A neurologist told me “as sure as I am human, this baby will live a life totally dependent on you”. There was talks of development delay, speech delay and intellectual disability. I was even asked should she have trouble, should we do all we can to save her, or will you see it as nature taking its course? Talk about a stressful 9 months!
Now, a year later, I sit here with the most precious gift in the world. Her name is Madison, and I am thrilled that in 3 months, we will be celebrating her first birthday! Does Madison have special needs? Yes she does, but she’s nothing like they said she would be. Having a child with special needs can be stressful. From the moment she was born, we’ve been going from appointment to appointment (neurology, audiology, OT, PT, orthopedics), but I don’t complain. I’ll take expending the gas, fighting for parking at children’s, and working part time all for the betterment of my child.
Being a first time mom is tough, and with the addition of the extra responsibilities it can be discouraging. I get tired and often times I find it hard to talk to others about what I’m going through. It’s hard to communicate your ordeal with those who have never been in your shoes (and most times never even heard of the conditions my daughter has). Even through it all, I have joy. I have joy because she is beating the odds. I have joy because each day she is proving doctors wrong. I have joy because she has a wonderful support system. Our families and friends are awesome in learning about her condition and providing help anytime they can. Most of all, I have joy because God saw fit to bless me with her. She’s my designer’s original and the best thing that has ever happened to me!
If you’re the parent of a special needs child, know that you’re not alone. Join a support group to connect with families who are going through the same situation. It’s nice to converse and get energy off of people whose children are going through similar things. Stay connected with your family and friends, they’re your biggest support. Most of all, stay prayerful and remember that your little one has a special purpose!
*Arthrogryposis- A rare congenital condition (1 in 3,000) characterized by multiple joint contractures and sometimes muscle weakness and fibrosis
**Polymicrogyria- is a developmental malformation of the human brain characterized by an excessive number of small convolutions on the surface of the brain.
Shakeika, Thank You for sharing your Maternity Moment with Posh Mumsy and our readers.
Are any of you raising a child with special needs? Share your experiences with us in the comments section.
Love and Hugs,
Shakeika, Madison, and the Posh Mumsies