Back in the eighties I attended William Henry Intermediate. The building had a special needs school attached to it where I would spend every free moment.Trying to figure out the hierarchy of junior high, which I could never quite understand, left me vulnerable and uneasy. I would walk through the door to assist in therapy, or play and be able to breathe…these were my people.
During these years my Dad remarried and his wife Colissa had a brother with Down Syndrome. Ray was non verbal and because he was born in the fifties, had no early intervention. When I would spend weekends with them, Ray was my constant companion. He would wait eagerly for my visits. While my two younger brothers would go off to the woods to explore, I would spend hours reading the comics to Ray. When I would wake up in the mornings Ray-Ray would be waiting eagerly by my bedside to see what adventure I would come up with for the day. One of my goals was to get him to learn to ride a bike. So every other weekend, I would prop him up on my two wheeler and run beside him, urging him to pedal. We never made any progress with him learning to balance, but I’ll always remember him guffawing as I zoomed him up and down the driveway.
When I moved to Dover from Virginia Beach, my first friendship was with Stacey and her family. She would watch my kids while I worked. It was a great symbiotic relationship because she homeschooled as well and could bring her kids along. Stacey’s brother, Todd, has Down Syndrome. We would play wiffle ball celebrate birthdays and I’d attend his art shows. Todd’s man crush was Zac Effron, so one year I got tickets to High School Musical on Ice and took him to Baltimore to see it. He then spent the night and went to church with us the next day in his Sparkly, purple top hat that he bought at the event.
Parenting Noah wasn’t just going to be a few hours here, or an afternoon there. This was my 24/7 every minute of every hour way of life. Gary Morland writes “Connect the dots of the pieces (of your life) and it changes how the pieces look. As you learn to connect the dots you calm down and gain hope. Your expectations change.
This wisdom was what I reflected on, over and over as we limped along trying to adjust to our new normal. God had called me to this wild and beautiful life when I was in junior high. Many ‘dots’ leading up to this point only served to confirm it. We returned to our daily rituals and patterns, but added in trips to A. I. Dupont by the dozen. In addition to Noah’s heart issues, he had an undescended testicle, needed tubes in his ears and his baby teeth didn’t have enamel on them. Each of these resulted in multiple surgeries and specialists.
Noah was almost three months old when Zoe and I decided to go shopping at Toys R Us. We bundled Noah up and the three of us headed out. As we parked the car, Zoe got Noah from his car seat and started towards the store. She of course, protectively holding him, me walking beside. All of a sudden, Noah tilts his head back and makes eye contact with his adoring sister and smiles a smile that I still remember sixteen years later. Not only was it his first grin, it was also a sign that things would be well. Neurotypical babies smile between 4-8 weeks. It was a learning curve I’m still on. Noah would do everything his brothers and sisters did, just at a slower pace. Thank you Holland! Did I mention that Noah’s name means rest? There would be no forcing my son’s development. The unfolding of each of Noah’s milestones wasn’t something I could manufacture or read about and implement. The only thing I could do was enjoy my son, my children, my life and rest in the truth that God was in control.
2 thoughts on “Signposts”
I know this was a tough one….it really flows 🌊 🌊 well. Great stuff here! x
Ethel, You really are the ‘wind beneath my wings’ xLucy