It was five years ago today that I was blessed to spend my last day with Cayden. I never imagined it would be his last, because it truly was one of his best days. It is hard for me to fully re-imagine it now, but it was just a normal day.
Cayden had finally become more ‘verbal’ with his communication device, and that day he was actually able to tell me what he wanted to eat for each meal using his ECO-13. Not only had his communication recently taken a dramatic step forward, but his eating had too. So his meal selections were unusual for him. Rice Krispies in milk for breakfast, macaroni and cheese for lunch and chicken nuggets for dinner.
This menu alone was absolutely amazing! Parents of typical kids just can’t understand what a milestone this was.
Cayden had struggled to eat since his birth. It was a slow and tedious process. When he was a newborn, it would take him over 45 minutes to finish a bottle. I would feed him, change & let him sleep for a bit, then go pump for 30 minutes. I’d get about an hour break, and do it all again. It was a tiresome, tedious process when he needed to eat every 3 hours. This lasted for quite some time until he started to eat pureed baby foods.
Cayden never became a fast eater. At 4 years old, he would need to eat 5 small meals a day, rather than 3 big ones, or he would vomit most of the meal back up. We spent a lot of time preparing his food and making sure he got enough in! Pureed foods were his staple for years, since chewing and swallowing was so hard for him to coordinate, as a result of his brain malformation.
So for almost a year preceding his death, we had been driving to Charlotte 2x a week for a specialized intensive feeding therapy called Vital-Stim. This was electronic stimulation of his throat and cheek muscles, trying to train them to be stronger and safer. In mid-December, Cayden had finally gotten a clean swallow study, and was cleared to eat all soft foods. This was amazing. He was so excited to finally be able to eat most things (casseroles, soups, potatoes, pasta) and to not cough and gag with each bite. And it was a great thing for our family to be able to eat a meal together and not have to prepare special food just for him.
So on his last day, we celebrated a big milestone. Cayden’s communication was good enough for him to tell me what he wanted, and he could eat it safely. It was actually the first time he had eaten chicken nuggets and french fries for dinner. I sometimes joke that he said to himself after dinner, “I can die happy, I ate chicken nuggets for dinner!” It really was a day of celebration!
In addition to his recent burst of communication and eating progress, Cayden was also making strides in his mobility. He was getting much better at driving his power chair, and I had just that week told him that in a few weeks, we would probably let him drive his chair in the house.
We had been practicing outside on the driveway, so he could learn to steer his chair better. It was a used power chair we had found on the internet, and it was not custom for him, but it worked to see that he was indeed, going to be able to figure that out. The equipment techs really didn’t see just how smart Cayden was, and doubted that he could see well enough, and be coordinated enough to drive straight, stop and start on command (the criteria for getting approved for a power chair). We were working towards those goals, with a little difficulty. It was not that he couldn’t obey the commands, but that he didn’t WANT to obey them! He had finally found his legs/wheels, and wanted to feel the wind in his curly hair! Cayden drove that chair full speed ahead whenever he got into it. He didn’t want to go slow and stop. He wanted to MOVE!
And I couldn’t blame him. For a boy whose legs didn’t work at all, the chance to be mobile on his own was empowering. I will never forget the giggles and fun we had that week in January when he started really driving that chair. It was a beautiful sound for a momma’s heart.
I’m sure there are more milestones he met that month, it really was a good month for us all. Hope was re-ignited in our hearts for Cayden’s future, and so it made his death all the more shocking and heartbreaking.
But I have a thankful heart for the last part of the story. That evening my parents watched the kids, as Joey and I had plans. They put the kids to bed and read them a Bible story, as was the tradition. The story chosen that night was the story of the paralyzed man, whose friends brought him to Jesus. Jesus told him to pick up his mat and walk, and he did.
The plain fact that this was the last story Cayden heard in his earthly life, tells me enough. I know in my heart that Cayden prayed that night to ask Jesus to heal him, and to let him truly walk, just like the man in the story. And I know that Jesus answered that prayer, and called Cayden to walk, not here on earth, but in Heaven, at His side.
Cayden was healed. He is now whole. He is walking the streets of gold, enjoying the songs of angels and dancing in fields of grace whenever he can. As the song says “He traded his sickness, he traded his pain, he’s laid it all down, for the Joy of the Lord. “
I miss you terribly Mr. C. I miss seeing your progress, and watching you grin when you learned a new skill. I miss your spirit… how sweet and loving it was, how joyous, even with your trials, and how patient you were for everything. You were so determined to just be a normal kid.
I love you Cayden, and I can’t wait to see you again. I know you will joyously greet me in Heaven, saying “Mom! Mom! Come here, I’ve GOT to show you something!” and you grab my hand, leading me down that street of gold to show me all around the place you (and I) now call our eternal home.