We were told you may not walk, you may not talk, go to school, enjoy life, or live at home…
Wait, What? A teenager? Where did 13 years go? How did this happen? I am tearing up as I am writing this. If I could have predicted what life would be like I would never have imagined it would be like this. It is hard every damn day, but it is SO good every damn day!
This kid has rocked my world since the day he was born, literally! You can read that here: Unknown Journey
He was our first. We didn’t know what to expect especially the road he has taken us down. 13 years ago we were thrown into an unknown territory. And let me tell you it was not easy in the first 16 months, every damn day was hard. When you have a child that couldn’t talk and tell you what he wants and is constantly frustrated because he CAN’T tell you, it hurts… it hurts really bad. Karl and I worked through it and we have dealt with every obstacle. We didn’t get Riley’s diagnosis until he was 17 months old. I was in a play group with the most amazing mothers. I didn’t compare, but when other babies were crawling, pulling up, drinking bottles like a champ, and Riley didn’t meet those milestones, we were concerned. Every well check was frustrating for us when asked all the typical questions about Riley hitting milestones and he wasn’t. We were sent to a Developmental Pediatrician and at 17 months we got a diagnosis literally 10 minutes in. What??? How come no one knew? Well because CdLS is so rare. We were then sent to a Geneticist and it was confirmed. Why did we go to a Geneticist? Because Fran and Karl had 1% hope that it wasn’t CdLS even though everything we read and researched was spot on. I remember that day of the Geneticist appointment. It was the worst and best day of my life. Why both emotions? Worst – because it was confirmed AND Best – because it was confirmed and we had answers! I let myself grieve for a day and literally the next day I hit the ground running getting everything checked off the protocol list with the help of the CdLS foundation. The doctor appointment list was a mile long, scripts were written for therapies, and we did whatever it took to get Riley ANYTHING and EVERYTHING he needed to get his and our new journey started.
Many ask us “I don’t know how you guys do it and with 3 other kids”. Yes, I get that a lot LOL! We decided to have more kids because Karl and I were not spring chickens and we wanted Riley to have a large family. I had him when I was 35, Reese at 40 and drum roll please…. The twins at 42! and I will be 50 in 2 days. It is not easy!! We do this every damn day, with a lot of yelling (insert laugh) but also a lot of love and we would do it all over again.
So here we are… February 5th 2017 and we have our first teenager in the house and certainly not our last. Riley, you started our journey for our beautiful family of 6. You have taught us patience, to dream, to have hope, to never stop learning, to reach for the stars (you certainly have) to have compassion toward others, and most importantly you are you and you make us proud every DAMN day! We love you to the moon and back! Happy 13th Birthday Riley!
Love, Mom, Dad, Reese, Colin and Chance.
Until next time….. follow me on Facebook: Francesca Rissland and Instagram: frissland