Did you ever think you will grow up and be the mother of a special needs child? I never thought so. There are so many questions that have run across my mind over these five years and I am proud of myself for letting go and learning to open up about my fears and insecurities. There are times I still cry and wonder why me and most times I am amazed at the successes in this journey. I have learned to be overjoyed at the successes of my boy and not by a measure of the so called children development timeline which is not personalized. As an immigrant originally from Ghana, West Africa, I knew it would be tough explaining how different my child was with his glasses and hearing aides to my community. However, my strength has come from my immediate family and friends who have supported me and being there for me as I cried and laughed during this tough journey of special motherhood.
I was therefore beyond the moon when I connected with Sefakor who like me was Ghanaian but lives in Ghana, same age mate, and has a first born son with the same rare syndrome called Charge Syndrome. Charge Syndrome is a rare syndrome caused by a genetic disorder that can affect the heart,nose, eyes,ears, etc. Charge also affects each individual very differently, therefore each individual needs should be personalized. One thing with these chargers are they are fighters!
In the picture below is my son, my mom, Sefakor, her son, and myself in Ghana this past September. Somehow the little siblings, my daughter and Sefakor’s younger son managed to escape this shot as they were happily playing together. All of us moms laughed, gave each other advice, and bonded over the triumphs and challenges of motherhood. The lack of rehab services is saddening in Ghana, but the resilience of special moms like Sefakor and our families is a testament to the fighting nature of these chargers.