I’ve started to make you feed yourself more often. It’s pretty funny trying to manage to keep a spoon in your hand, keep a bowl of food within your arms reach and a toy for you to play with the other hand, and keep it all intact and in place. It’s funny trying to get the food in your mouth with your own hand. You resist any of my movements and the food just goes in circles, bits of it flinging off everywhere. You can’t believe how frustrating I find it when you let food get everywhere. Guess I gotta let that one go, cuz it’s been that way for your entire life so far. So I wear an apron now, a full body one. You seem more agreeable to this exercise, the one of feeding yourself.

I recently did a questionnaire for a study from McMaster University. One of the questions posed was how much did I do “with” you, not “for” you. I’ve been doing things for you for your whole life. I want to try to make you do them. It takes much much longer this way, and I can even accomplish less. But that is not as important as it was once. You are my task for the time being. You are my job. Well, my life as your mom and daddy’s wife are my jobs, and whatever else this moment calls for, as far as my involvement or assistance in it. I don’t know why seeing it this way helps me focus. I guess because when I have “worked”, I’m much better at getting things done, focusing on the tasks at hand and attending to their completion. I guess I feel like I have a bit of direction for the time being. That may change of course, and I’ve learned to float along with those changes.

Daddy took you for a walk today, in your red stroller. You are tolerating that too these days. It’s startling to me to think that I can take you out in public without you completely losing it. What causes you to get upset John? Do you see with your eyes what I see with mine? Or do you perceive differently? Do you see energy? Are you sensitive to the vibrations you come in contact with? We all are I guess, but some more so than others. Are you like your auntie Ruth who is very sensitive to magnetics? Anyways, I’m sure I shall never know. All I need to know is that there is something that I do not see with my eyes that can cause you upset. It’s nothing to be frustrated about, but definitely something to give you loves and cuddles about. Oh Johnny, thank you for you. Thank you for coming into my life and being just as you are.

I saw Benjamin Button the other day. I wept and wept at the end of that movie. I still want to cry when I think about Kate Blanchett’s character caring for Benjamin as he grew older inside, but his body went back in time, becoming a baby just before he died. The picture of her holding him reduces me to tears like I can’t believe. I don’t really know why, but I suspect it has everything to do with the love she had for him, that she cared for him in the end, that her love for him was so great that she could do that, totally committed and caring. Yup, definitely about the love, as I sit here totally weeping, haha. It was so beautiful. I can’t explain or put it into words. I also loved that the character could adapt to what the situation was because of the love she had in her heart for him. I loved the devotion. It was a love story about a love that went beyond borders of physical beauty and ability. It was just beautiful and really moving to me. I think the last part was probably my favorite. That and one line, “I’s 7 years old, but my body looks a lot older”. Oh yes, and the guy getting hit by lightening all the time.

Well, guess I’d better get back to you before you start crabbin’ on the floor. You’ve been pretty happy lately, and I want to get to you before you get frustrated. Love ya babe!


I wonder if I should start calling this journal “Letters from Heaven” from this point on, as they are coming from a place of inner rest and peace. I don’t always feel that way, but oh well, wouldn’t be human if I didn’t jump off the handle from time to time. All part of the human experience right? J

You sure love preschool. I’m so glad. You’ll be starting Kindergarten in September. If possible, you’ll be bussed. I’ll ride with you to make sure you’re ok and if it isn’t going to work, then I’ll just drive you myself. You’ll go every day, all the school day. I’m drooling at the thought of it. You are going to have so much there to enjoy. I’m really excited for you. I’m excited for me too, truth be known. You’ll be receiving all your therapies there and I don’t have to do it all. Daddy and I will continue to of course. I wonder how that will go for you? I think you are going to like it. There seems to be a positive vibe coming through on this one. We’ll see what happens.

I took some video tape of you today. Man, you’re cute. Your squeals of laughter are the cutest. Grandma Roadknight is getting a lap top so I’m going to put together some dvd’s of you to send to her. We saw Tracy at Safeway today and it’s the first time she’s seen you in a long time and she thought you looked a lot stronger than before. I guess you are. Dearest John, thank you for you, just as you are.

We’re beginning the process for renos. We hope to build a room into the garage, turn the laundry room into a bathroom with a walk in shower, put in flooring on all the main floor, move the laundry up to your old bedroom. Yikes, gonna be some real upheaval coming. We’re also trying to get a wheelchair van with funding assistance. I think this is what my problem has been this week. When change is forced on me, meaning I don’t initiate the whole thing (this is still all Johnny fallout, smiles), I go through a ‘blip’ period when my system lets go the old and eases into the new. Not usually pretty I must admit. But I think this blip is past for the time being. The next one will come when the construction begins I’m sure.

Your voice is changing. It’s much lower than before. You don’t cry so much but rather yell. Johnny, what’s it like for you being in your body? Sometimes when we have to wake you up, you are so pissed about it and you cry in anger. I wondered yesterday for the first time, if in your dreams, you can move about on your own and not need assistance. I wondered if you liked that and when we had to wake you, you woke to find that it had indeed just been a dream, and you were back to the prison that is your body. I think you get frustrated with your lack of independence, and our inability to communicate with you, or understand your communications. I think you get frustrated with me doing everything for you. I sense control issues for you and me. I am trying to allow you as much control as I can in what is appropriate, but I’m sorry son, sometimes mommy just has to take over. It’s just not ok to slam your head against things.

Well, gotta run son. Write more later!!!!

Next:  up against a wall