I wish I could go back and whisper into my own ear on May 21st, the day after my sweet and perfect Layton was brought into this world, “You’ve hit the jackpot!”. If only I knew then what I know now. I am one of the lucky ones, and DSDN helped me to realize that.
“I think your son may have Down Syndrome.” I will never forget the moment when our son’s pediatrician came into our hospital room and suggested to do some genetic testing. The news was delivered to us so calmly and carefully, yet it obviously took us by surprise. Not only were we first time parents, but now we were being told our baby needs genetic testing. Overwhelmed by the whirlwind, we kept the possible diagnosis a secret. We kept it to ourselves, because we were a bit scared, nervous, and had no idea what it meant for our family, for our son.
A week later we got the official diagnosis, Layton did indeed have an extra 21st chromosome. From there, the ball continued to roll rapidly, pamphlets, big words, diagnoses, specialists, it was all so much. If we were not overwhelmed before, we were at that point. It was then that we were given information about our local group for individuals with Down syndrome. We were scared, we were nervous, and we couldn’t help but question if we were going to be enough. We reached out to connect with our local group and DSDN in hopes that we could find answers, comfort and support.
Fast-forward 9 months.
Whether we knew it then or not, we are enough, we are Layton’s perfect parents. We make mistakes, we stumble along every step of the way, we are first time parents, trying to figure this whole thing out. Our life is a bit more hectic than we ever planned: doctors and specialists appointments; tests, on top of tests, on top of more tests; physical, speech, feeding, and occupational therapies; medicines; hospital stays and surgeries; illness and working incredibly hard to avoid illness….oh and giggles, lots and lots of giggles. We wouldn’t change any of it.
We watch our sweet Layton work so incredibly hard to reach each and every milestone. We celebrate each new achievement – like watching him win an Olympic medal. Our hearts are so full each and every day. Some days are exhausting… wait, most days are. By the end of the day, we have worked so hard on everything: sitting is not just sitting, feeding is not just feeding. Needless to say, it is all worth it and so much more to see how happy and proud he is when he does something he has been working on, his perseverance is inspiring.
I didn’t know it was possible for my heart to feel so full. I didn’t know it was possible to feel so fulfilled in life by becoming a mom. Thanks to DSDN and the support it brings, I am able to feel confident and not lost, happy and not sad. Why? Because DSDN educates and advocates, DSDN provides this amazing tribe of support for families of individuals with Down Syndrome. I can’t imagine what our journey would be like without DSDN. DSDN has been there for our family from the start.
With DSDN we found our comfort, we found our support. We are one of the lucky ones.
DSDN has over 80 local partnerships where we provide our materials and resources to organizations across the country. Did you know you or your local organization can request DSDN brochures and leaflets? DSDN is happy to send you or your local org our materials to distribute to your local OB-GYN, Pediatrician, DDD provider or Therapist’s Office. Go here to request: http://www.dsdiagnosisnetwork.org/materialrequestsforparents