Sometimes things hit me and I have to talk about it. There are so many messages out there about being a special needs parent. The message we always hoped to convey...was hope. Kreed was known as pretty severe- his rages documented on video and those weren’t even the worst ones since I could video. We didn’t video them for any reason other than so people wouldn’t feel so alone, to see what we did to help him through it and to show him and talk him through it. Mostly we showed using a communication device and how we helped him through his struggles. But this was a kid who tried to bite his toes off literally. And bash his head in until he could go unconscious. And bite every part of his body he would reach. And many many other things.
But you know what, I never felt sorry for myself. I felt deep pain for Kreed. For what he was going through. The unimaginable pain he carried inside himself to the point he wanted to seriously harm himself and anyone trying to stop him. That was pain. I did not suffer. I did not have despair for myself. I had it for our boy. Whose life was way harder than I would ever have it.
Sure, it’s not easy going through this with our kids. I’m not saying it is. But I’m saying I always acknowledged how hard it was for our boy and that he was having a hard time, not giving us a hard time.
Sure, Carie and I didn’t get much date nights or other things couples get to do- but we made our own nights- Kreed got five guys and we got wherever we brought him with five guys. We went to movies at midnight when he was asleep (and someone with him of course but asleep!). We had many fabulous home made dinners at home and great TV marathons. Kreed learned to be a great spectator at Carie’s races and triathlons. Our boy experienced life WITH us. We didn’t want to do things “despite” our son with disabilities. We wanted to include him and experience everything.
But most of all- out of everything in this world- we wanted him to be happy. We gladly gave everything we had to our boy to be happy. He was an extraordinary young man who overcame so much that most of us don’t even have a clue what it’s like. Why did he rage? Because he had a painful nerve disorder and often people don’t even want to get out of bed with that disorder but Kreed didn’t care- he hopped out of bed and through stores! Until the pain was too much and he couldn’t tell us so he raged. Imagine being in that kind of pain for even a second? So no, I didn’t feel sorry for myself, I felt unending love and empathy for our boy. I didn’t think about how hard it was for us to deal with HIS neuropathy, I thought about how hard it was for HIM.
Or when we found out he couldn’t breathe at night and needed a Bipap and every doctor told us it was futile and he would never wear one. I knew in that instant that: 1. They were wrong. 2. I would never sleep through the night again but 3. I didn’t care, if this would help him live a better life. And it did better his life and actually added probably two more years to his life as a result. So I slept with him for three months to get him to wear it. And he did. He defied all the odds and wore his Bipap. It wasn’t easy. I didn’t sleep much. It was exhausting. But I never thought about how much it sucked for me. I thought- holy shit, our boy is going to feel better!
And he did. And I never slept again through the night until after he took his last breath on this earth.
Every night I set multiple alarms to wake up and see if he was asleep and if I could put the Bipap on. Sometimes I had to wake up many times because he wasn’t asleep yet. Oh well- as a result our boy got oxygen at night and could breathe. Later we had to wake up every ninety minutes to check his blood sugar because he was dropping into the low 20’s at night. Sometimes I even had to wake him to feed him or give him a peanut butter-honey spoon full. Those were even longer nights. But I still didn’t feel sorry for myself. I felt relief that our boy was still with us and alive. It was his body breaking down- not mine.
I don’t know what I’m trying to say here. But as I sit here at 10pm at night to the sound of nothing- no monitors, no alarms to set, no Disney movie playing in the next room, no amazing child hugging me good night or having some late night shrieks of joy- I was just thinking back to our life. And no matter how hard it was- and it was sometimes incredibly hard- we didn’t ever feel the despair for ourselves. Or feel a loss of our life. We felt a drive to make our child happy. To figure out what was wrong. And empathy for him and what he went through. He didn’t celebrate autism and had lots of thoughts on it and autism is a reason he’s not here with us today because he couldn’t communicate good enough for doctors to hear him- but autism didn’t ruin our lives or make us suffer. HE suffered. That’s an important distinction. It was his life that was hard. He knew he was limited in some ways and didn’t want to be. He wanted to go to five guys anytime he wanted and drive there and have his own money. He hated that his body didn’t work the way he wanted it to. And that was his right. To hate those things. I hated it for him! But I didn’t hate our life. I didn’t have self pity. I didn’t think about how horrible our life was because of those things. Because it was never about me- I don’t have a disability, I could walk, talk, go to work. Or any restaurant I wanted. I was free.
Because of the way we viewed our life I feel like we did more and taught him more. Because we just wanted our boy happy doing whatever it was he could. Tubing on a river. Horseback riding. Playing with the dogs. Road trips. Plane rides. Hikes. Go karts. Mini golf. Whatever his heart desired. Except Five Guys at midnight. We had to work through that one.
Now that our boy is gone. Now that is despair. That is grief. That is suffering. To have your child leave this world behind without you. To know you will never again get to hear their voice, sounds, words- whatever- smell them, hug them, kiss them, experience this world with them. I would give up everything I own including my own life to have this boy back on this earth. Anything and everything. For the most part we celebrated his life while he was here. And now we know what true heart ache is. We know what a last moment is for real because we have no more moments.
I speak about all these things Kreed did- but it wasn’t easy- he was a hellion. True story. This was a kid that flipped over shit in a grocery store and ran from you while knocking everything down. To biting my finger to the bone in the middle of Whole Foods and having my brother help me basically carry him to the car screaming. To throwing a shoe from his amazingly huge car seat built to keep him in but not built to keep his shoe from flying- and hitting the gear shift to park while driving 60mph. And having to teach him eventually to ride in a normal seat without tying to do every naughty thing in the book. And then flying in an airplane and going through security without doing anything that would get us arrested lol.
But then we just buckled down to teaching. We took so many practice trips everywhere. So he could learn how to act- he didn’t know- we had to not only teach him but teach him how to handle things even when he didn’t like it. It wasn’t easy but it was worth every second and i wish I was still teaching him.
Toward the end of his amazing life that boy loved to shop! From hellion to kickass shopper. Especially for avocados and sandals. Not kidding. That kids favorite place to go became food stores! And he was a decent cart driver too.
I’m still rambling but there is a point here. When we focused on Kreed and had empathy for what he went through and didn’t focus on if it made our life hard or not- our life went a hell of a lot better. It was a different life for sure and a small life- we mainly had each other and that was it- but that was okay- because we were enough for each other. And now that our boy is not here, it makes me at least in some tiny part of my heart, happy that we focused on him and his experience and not ours. It was his life that was hard and difficult and he was having a hard time. And when you think of it that way, it changes things so much.
And you never know how many moments you will have in this life. Things can change in an instant. Ours did. Celebrate this life that we have. The life of our children even when it’s hard. And I know- we lived through so much hard with our boy. But there was so much good too and that’s what we held on to. Always. And I’ll always be thankful that we never held on to the rages or hard times. When they were over, they were over. He didn’t dwell on them so neither did we. And when he smiled, it lit up the room and everything was okay. Even if it was just for a moment, I’ll take that moment a thousand times over.