I just watched the most inspiring video for World Down Syndrome Day. This incredible video has grown children with Down’s Syndrome helping a pregnant mom-to-be answer the question of “will my baby be okay” after she learned of his diagnosis in utero.
This amazing video reminded me of when I heard from a dear friend and his then 3 month pregnant wife, that their baby had Down's Syndrome. Being a mother of a then 2-year old son with special needs (Zack had a rare genetic disorder with several similarities to Down's Syndrome), they came to me for advice and support, just as the mother in the video came to the true "experts" of life with Down's Syndrome.
While my friend's first feelingswere of sadness, worry and even some disappointment, as the information sunk in, they began to see the possiblities that existed for their future child. At that time, I wanted to say all the right things- share the joy and the anguish that exists when you are a parent of a child with special needs. What could I possibly say to these wonderful friends to give them a look into our life and possibly their future? Taking into consideration that they also had a 2 year old and were about to embark on a most difficult but rewarding journey.
Do I tell them that when their child is born, he might need to to be in the hospital to identify or treat medical issues that require tubes, machines and various numbers that you will learn to monitor?
Or that the doctors and nurses at the hospital will answer every single tedious question that they ask with a sensitivity that will give them the strength to make it through those tough first weeks?
Do I share my experience of the enormous mommy guilt that tears at your heart, when you have to care for your child with special needs and your other child just wants to play with playdoh or finish a puzzle?
Or do I tell them that this wonderful child will teach lessons to his siblings about patience, acceptance and unconditional love? And that watching your delicate little one smile and admire those siblings will fill your heart in a way you never thought imaginable.
Do I tell my friends to love each other more than ever because their marriage will be tested in a way that cuts to the core. That men's and women's emotions are so different in times of uncertainty, adversity and fear, and that listening becomes the most intimate thing you can give each other.
Should I also say that when you are in the hospital with your very ill child and your spouse cares for your other children, does the laundry, cleans the house, juggles your job and theirs, and brings you your favorite pajamas that you will need and love him more than you ever have before.
Should I tell this mommy that instead of filling their time with music groups, playgroups and swimming classes, many of her days with her sweet child will be spent with therapists, doctors and specialists?
Should I encourage her to be an strong advocate for this little life who will need the best people on their team, no matter what the costs. That she will know when her child needs help, she will fight to get the attention that child needs and that "no" is not an acceptable answer.
Should I mention that while her child might not speak when he is one or even 2 he will communicate through smiles, bright eyes and loving kisses and that will be all she needs to know that he is ok.
Should I say that they will beam with pride when their child finds their own unique way to get around in the world when their are obstacles. That waiting for those first steps after years of therapy will be the sweetest victory that you never thought was possible in those early days.
Should I mention that it is okay to get sad over the loss of some of the dreams that they may have had for their child, but that they will cry even more tears over accomplishing even the smallest victories in everyday life and realizing the possibilities are endless.
Or should I say that I have never felt happier in my life than when my little brave child pulls my face in really close to give me a sweet kiss on the face or when he makes the sign that I taught him for "mommy" and laughs out loud.
Being a mommy to a child with Down Syndrome or any other special need requires hard work, determination and hope, but is also the most amazingly rewarding experience.
March 21st is World Down Syndrome Day and here is important information for any future mom of a child who has been diagnosed;
- Having Down syndrome does not make a person unhealthy.
- Down syndrome is a genetic condition, not an illness.
- People with Down syndrome may have health issues throughout their lives, just like everyone else and they should have access to healthcare on an equal basis with others.
- There are specific known health issues which may affect people with Down syndrome, for which accurate, evidence based information is available.
- Health professionals should be aware of these specific issues when treating a person with Down syndrome.
- Health professionals should not discriminate against people with Down syndrome by: refusing to treat them, blaming health issues on Down syndrome in general, or considering only specific known health issues which may affect people with Down syndrome.
Join the conversation on Twitter or visit the Candian Down Syndrome Society site for more information and resources.
photos from WDSD site and the #FutureMom video.
