I know I don't write like I used to. But I saw this quote not long ago and it's been stewing and sitting in my head since and I wanted to reflect on it.
Gosh. I miss him. His weight. His smell. His smile. All of him.
We are closing in on the 2-year anniversary of his death in a couple months and I've been thinking of him more the closer we get. I finally sat down and watched the hour-long video that we had playing at his funeral. I cried and laughed. So many pictures I actually don't even remember picking out in honor of him.
Sometimes I wonder if I gave him everything that we could give him. Looking at those photos made me see the things we gifted him with. He was far from a typical child, but I see now that we gave him a life worth living.
While we did spend so much time in doctor's offices and hospitals and therapies and he had some rough days that didn't allow us to even leave the house due to his health or just his grumpy moods (shout out to Kyle for explaining to the lady cutting his hair YEARSSSS ago that our lives revolved around his brother's moods), I was so happy to see the smiles on his face for other things we were able to go enjoy.
For a while, we did regular photography sessions with him, marking each year he got older, and then photos of him and Kyle together when we had him. I noticed how easy his blue eyes were to capture.
Eventually, his dad learned the ins and outs of photography to capture the boys together, due to never knowing how David's behavior was going to be that day. Most of our photo sessions were literally planned the morning of with whatever clothes the boys had in their closets.
We went on vacation almost every single year despite how hard that could sometimes be to plan. It was almost always to South Carolina. But I have so many pictures of him there in the ocean, on the beach & in the pool. He was almost all smiles. We did Disney World one year with Grandma and Grandpa and he hated it. Loved it the first day but was miserable the rest of the day unless he was riding the monorail or in our hotel room. It was quite the adventure to make that drive with a 10-year-old and almost 4-year-old, but we did it. Changed diapers in the van, fed him on the move, cleaned up the aftereffects of car sickness. While we never went back to Disney, we still didn't let those troubles almost every year keep us from our South Carolina trips.
David was the oldest grandchild on my side of the family, and he was integrated so well, that I'm not sure any of his cousins would even think twice about his disabilities. Many of them knew how to use the gtube and loved playing with him. I think his first best friend was Mikel Jr, and his other cousins just became extra best friends as they came along. We spent so much time with family at the lake every summer, and as he grew older, he didn't get in the lake as much but enjoyed laying on a blanket down in the grass near us and occasionally we would see him "running" through the yard-AKA scooting as fast as he could through the grass away from us. He loved a good fire pit at the lake with grandparents and cousins. He loved the golf cart rides he got out at his grandparents with his cousins, but quite possibly, loved the one where Logan took off driving with him unsupervised by an adult while they were both very young the best.
We did holidays and seasonal things every single year. He didn't understand why but he was always included and with us. Halloween was probably the most confusing of all for him. I saw pictures of Scooby-Doo, a frog, a lion, Elmo, Peter Pan, army guy, Woody, superman, spider man and a doctor (probably my favorite costume for him ever) all in that slide show. He looked happy in the pictures, but I know I remember the look of disdain on his face when I’d put the costumes on him. He saw Santa, had a stocking, and presents under the Christmas tree. Which were always as many hats, mirrors and chew toys I could find. I used to buy him lots of fun tshirts, until he started ripping them to shreds and preferring to be naked from the waist up. He attempted to dig the guts out of a pumpkin at Halloween (hated it), dye Easter eggs (scared me he was gonna spill all the cups of dye), got an Easter basket every year. We enjoyed pumpkin patches in the fall and I even manhandled his wheelchair over hiking trails in the spring. He got to go boating once in a while in the summers. He loved watching bubbles and one year, his bubble machine was the hit of his Easter basket. We weren’t fans of winter stuff. It was like wrestling an elephant into a pair of pantyhose to get a winter coat on him and made it so hard to carry him to the van. Snow and wheelchairs aren’t a great mix either. But I still did it and took a few falls while doing it.
He got to go to school. Starting at 3. They didn’t quite know what to do with him, but as time went on, every teacher he had came to love him probably almost as much as we did. He made friends (his best friend, Megan, beat him to heaven and they’re probably dancing up there now). He went to grade school, middle school & high school. He had school pictures and school IDs. He rode the bus. He went on field trips. He walked across the stage with the help of his brother and graduated. He had highs and lows at school just like other kids. I went to countless IEP meetings and eligibility meetings. I fought to have certain things in his IEP’s and was taught other things to ask for over the years.
His sibling relationship wasn’t like others. He and Kyle played sometimes, and other times Kyle also ignored him like most brothers 6 years apart would do. We called Kyle “The Little Big Brother” because let’s face it, there was never any acting younger than David, even as an infant. In the end, Kyle was the one on the other side of him, holding his hand when he died. In that moment I watched the hardest thing in my entire life-losing my oldest child and watching the youngest one lose his only sibling.
He had a good life. Yes, it was hard a lot too. But he was so strong. We took him to restaurants, where we allowed him to steal the cloth napkins and he was famous at Hooters for a while. We decorated his wheelchair for holidays and seasons, wrapping different colored garlands around the handles and giving him his own license plate when he turned 16. He got the chance to "walk" in a gait trainer and scoot on a scooter around the gym while his peers were roller skating. We went to zoos he clearly didn't care much about, drove in the mountains and got him out to enjoy the views. He made giant messes in his room with his toys, dumping out his laundry baskets that were filled to the tops only to play with something he already had out. He was able to move freely around his safe space in his bedroom.
Making the final decision to let him go was for someone much stronger than I am, even though ultimately, I had to pretend I was indeed strong enough. I think if I had been alone, he probably would have lived a little longer (possibly years, but quite possibly only days…we will never know). But having someone with me who listened to me talk about David as she and I both kept trying to put our fingers on what was going on with him before he went drastically downhill guided me in making the best decision in a moment of pure fear and panic, was what made me see that we probably would never get the days back that David had in the past and deserved to be had in the future. He would have had to be hooked to a feeding machine for many hours of the day instead of scooting and playing. He would have been miserable like that. I knew God was going to let him in. I prayed for that so much as he was growing up.
Looking back on the video slide show made me see that I gave him a good life. Most of the time a great life. I gave him all I had and doing that for so many years has left me drained in such a way that I am actually still recovering from it. I truly loved him like there was no tomorrow and saw in the end that there would be no more tomorrows like he had in the past.
All I can tell you is that I loved him from the moment he was born to the moment he took his last breath and I will never regret any second of that. It's a love you never recover from.
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