When you earn the title of being a special needs parent, you are ill prepared for how life will shape you, your relationships, and everything you knew prior to the diagnosis of your child. Each and every person reacts differently, ranging from “Super” parent to withdrawn. The new role manifests in a variety of ways.
When I married the love of my life on August 4, 2001, we were young, in love, and expecting our first child. Not only was it wedding bliss but it was marital bliss. Not to mention, I had the added blessing of gaining an amazing family (which most cannot say :-)) We were excited about welcoming our baby boy and were in the full swing of buying every baby item in sight.
On December 1, 2001, our baby boy Christopher (CJ) announced that it was time for his arrival. Nothing about the delivery was textbook and the news we received upon his birth wasn’t as well. We learned that our son had Down syndrome and our world literally stood still. With my husband by my side, we weathered a long hospital stay and it was our first year of marriage….our first 6 months of marriage. We had no time to enjoy the honeymoon phase as we were thrown smack dab into the fight of our lives….OUR SON.
Through the daily care of my son, I became exhausted, isolated, and began to suffer from panic attacks. I felt that no one understood what I was going through as the mother, the one who carried this precious child for 9 months, the one who had all of the visions of grandeur of how my life would be as a new mommy. No one knew that deep down I blamed myself for CJ’s diagnosis. Did I eat something wrong? Did I do something wrong? Should I have taken better care of myself? Should I have fought harder to get an ultrasound when I thought something wasn’t right? It didn’t help that I received a request to be a participant in a study to determine if moms were the cause of their children being born with Down syndrome within this tumultuous time. I began to spiral downward and I transferred the blame to my then husband.
I blamed him for me feeling isolated. I blamed him of me feeling alone. When in fact, he was the best thing that could have happened to me. I now know that when stress, overwhelm, depression, and anxiety step in – it shades life. It taints reality and during this time in life, I wasn’t equipped or aware of the damage it was causing and the joy it would strip away from me.
Because of this experience, the loss of love, and the wish to recapture all that is lost – I speak to groups about mental wellness, “total” family support, and relationships. You see, I don’t want another special needs mother or father to allow the stress and overwhelm of it all to taint what’s beautiful in life. It is my goal to encourage couples to cleave to one another during the journey instead of turning against each other. It is my hope that special parents learn to check in with one another because it’s something I didn’t do. I never remember turning to CJ’s father and asking him if HE was okay. Never make a life altering decision under stress. Lastly, don’t be too prideful to say I’m sorry. Don’t live a solitary moment of regret.
Remember, you are on the journey together so fight to overcome it together, fight through it together, and hold on even tighter as it is love that will carry you through.