After Zavier got his kidney transplant, we were contacted by the Make A Wish Foundation. I’ve always thought that Make A Wish was for children who were dying, so it really freaked me out. However, the program actually grants wishes to kids who have critical illnesses, chronic kidney disease being one of those.

So my husband and I began to think about what type of wish he would like. He was still nonverbal, and we had discovered that he was non-verbal autistic. He loved Lego’s and we thought about Lego Land, but after taking him to a family event that ended with me sitting in the car with him because he hit sensory overload, we decided to focus on something that he would get full use of.

Zavier had been sleeping in a toddler bed with a bed tent over it. He loved it, but it was not the sturdiest product. We liked him having a safe space to be when he fed or when he needed quiet time.

I began to look into special needs beds and discovered the Cubby Bed. We spoke with the Make A Wish team and it was approved. It was only a few weeks until he had his bed delivered. I won’t lie, it was a sturdy beast and took a couple of hours to assemble, but when it was all finished, it was pretty amazing.

The bed had a full sized mattress with sheets that zipped onto the bed. It also has a Phillips light and a Wyze camera so that we can keep an eye on him. The only downside we’ve noticed is that the bed can get very warm. It’s great when it’s winter and it’s cold, but in the summer he can get overheated quickly. We’ve placed fans inside, but he’s managed to break them by throwing them or putting pretzels inside of them.

The bed also zips up, but one of the zippers no longer zips after Zavier kicked it open during a prednisone rage. The bed has been amazing for headaches and meltdowns. Since he can’t verbalize how he’s feeling, for the most part, he will often cry, scream, and hit himself when his head hurts.

Now that he has the Cubby Bed, I can have him lay in the bed after I give him some Tylenol (that’s the only pain relief medicine the can take due to his immunosuppressants). I zip him up and turn the lights off in the room. It’s often not long before he’s back to his silly, laughing self.

The bed is actually so good that when Zavier ends up in my husband and my bed, we’ve both taken turns sleeping in his bed and it’s quite comfy. Of course, I don’t know if we would have been able to afford the bed without Make a Wish, but I believe that insurance can cover it if it’s approved. Of course, I live in America and I’m well aware that insurance here can be truly…evil.

I have Regence Blue Shield and had to get Oregon State insurance to help with medication costs because we were eating through our deductible by February. I know that the transplant, had it not been covered, would have been half a million dollars.

If you can’t get approved for a Cubby bed or if you can’t afford it, a bed tent does a pretty decent job. Finding a way to provide a safe quiet space though has been truly a huge help, especially when dealing with the roid rage. We could zip him up, remove all of his toys, and make sure the bed was pulled away from the wall. That way he could rage and hit the sides of the bed, but not injure himself (or anybody else).

Even now that his rage has passed, it’s a great place for him to stay out of trouble or unwind when he’s not feeling great. It’s going to be a pain to take apart and move with us when we move, but it’s worth it. And since it’s a Full size, it’ll last for many more years to come.