the big “D”

Not that one you perverts. Death. I think I know what it means and why it happens. See, I always knew it would happen to me. I knew I would have a disabled child. I knew one of my children would die. And I literally knew right before it happened. A month before Ian died, I was approved for intermittent FMLA for a surgery that Ian had in September. But, instead of going right back to work, I KNEW I had to stay home-I was compelled. It was almost as though I was having a compulsion to stay home from work. So, I did. I got to do school with Ian everyday, we watched movies often, he spent time playing with his baby brother every day. We went of a family camping trip that we promised Ian we would go on after his surgery-a great memory. The day before died we watched Princess and the Frog and sang to all the songs. He was happy. I’m so glad I followed my gut and spent that time with him. I always felt like I had a special psychic connection to him-I could feel his emotions. I literally feel like that night he just decided it was time for him. He spent his day with mom, was sleeping with dad, just had a nice trip-and he was tired. The poor baby had a body that didn’t let him do anything. He wanted to play, he wanted to do school work, he wanted to eat halloween candy, he wanted to tell his daddy what a good dady he was, he wanted to hug his mommy. Now he can. See, I’m not religious. I don’t believe that God is watching over me. But I do believe in the after-life. In fact, I think the after-life is our real life, and that we are here for practice. I don’t know exactly what the afterlife is (maybe another dimension-that actually seems plausible to me), but I do think that it is a place filled with peace and joy. We are put on this planet to learn pain, to understand suffering, to feel loss, heartbreak, sickness, and hunger. If we didn’t understand these things, we couldn’t comprehend the extreme elation, love, peace, and understanding that the afterlife provides. Ian suffered more than enough-he earned his place in the afterlife. It also gives me reassurance that I have suffered enough on earth, that my soul will has earned enough scars to get me to this wonderful place, a place I will be with him. The part that no one wants to talk about (and this might only be for special needs parents who have lost a child) is that I feel a huge sense of relief. Relief that Ian is no longer sufferening, that he can do whatever he wants (I did a meditation yesterday, and he came to me and was making me watch him climb a tree, do a somersault, and do a cannonball into the pool-it was amazing). And relief for us. Our life was hard. We literally spent all of our time making sure he had a full life, and that he stayed alive. Every single day that you aren’t hyper-vigilant, is a day your child could die. There was no breaks for us (we did have full-time nursing to help us with the medical stuff, but we were still more committed to Ian than our other 2 children), we never let him spend a night alone in the hospital, other people literally were not equipped to watch him. Our other children always had to take a backseat-whatever was going on with Ian was more urgent than anything they had going on. Its your birthday? We have to open presents at the hospital with your brother first. Merry Christmas? How will Santa come down the chimney at the hospital? Easter Sunday? Yay! Ronald McDonald house is hosting easter egg hunt! The kids are relived too. Trying to keep the best life for your family, when dealing with such important medical issues, is really fucking hard. But, we did it. All of our kids felt loved, and I know that Ian knew he was so fircely loved, that he wanted to gives us a break too. I selfishly miss him terribly and the pain is unbelievable, but in my heart its ok. I don’t know how else to make sense of any of this.