From the moment we brought our son home, we decided to celebrate each and every moment we could and let him participate to the best of his ability. When I first saw Rodney, he was in the arms of a caregiver at the hospital because his biological family could not care for him. As a precocious four-year-old with Down syndrome, Rodney just didn’t understand his limitations. With a tracheotomy and a G-tube, attached to 24 hours of oxygen and numerous medications, he just didn’t understand the fear everybody around him had. His doctors told us he wouldn’t live past his fifth birthday, and so we cautiously took him home as pre-adoptive parents and decided to make it a year to remember.
We brought Rodney home in January of 2004 and spent all of that winter letting him explore the house. We celebrated every moment and documented them in pictures. It was a lot of work, trying to keep him tethered to an oxygen concentrator–and we even have pictures of him helping to drag his suction machine around—but we decided it was worth the effort.
Spring brought the exploration of the big outdoors—our front yard. I cherish pictures of our daughter trying to show Rodney how to blow flower seeds and bubbles. We dragged all his equipment and visited the circus, the park, a festival and Chuck E. Cheese. At Easter, we tried to work with Rodney on searching for eggs and even opening the eggs to find little toys he would enjoy since he didn’t eat at the time.
I remember Rodney’s first snow day. He was in the middle of a long hospital stay and the nurse said he absolutely could not go outside. His doctor and I took a pink hospital plastic pan outside and collected the cleanest snow we could find. Rodney had “snow” much fun!
When summer came, we cautiously held Rodney as he splashed in the shallow end of pool, his oxygen at poolside. The Fourth of July was a hit for him since he loved bright lights, and even with his equipment, we got him his first ride on a merry-go-round.
Our family loved to camp and we thought that we would have to give that up, especially due to sand at campgrounds not being a good mix with his tracheotomy. However, we rented a spot at a state park that was literally in our back yard, and for one night put down lots of tarp and some tents and had a campout.
I think my favorite celebration came during the fall. We went apple picking early in the season and toted a big red wagon around with Rodney and his equipment. We made memories collecting apples and playing in the pumpkins.
By the time Rodney turned five, he had experienced more than many typical kids, and we just have kept going over the years—nine years to be exact. Rodney has finally learned to unwrap presents and take Easter eggs apart. I can’t tell you how many years it took for him to learn to do those and other skills. Even if he hadn’t been able to do those things, we would still be doing what we could, hand-over-hand with him, at his pace, with lots of praise and breaks.
My advice is to celebrate every moment, not just the big moments. Plan to take lots of breaks and make the moments appropriate to your child’s development. If your child can only handle three minutes of something, that’s okay. Enlist the help of others, call ahead to explain your needs and find out down times or even off hours that many places will be happy to extend to you if you ask. If equipment or hospital stays put you out of activities, try to bring short celebrations to your child.
Celebrating doesn’t boil down to the things your child can’t do such as eating. Celebrate and make your own traditions. Take lots of pictures because before you know it, you will realize that your child taught you what’s important in life.