"Who is in the stroller?"; Tuesday, January 19th pt. 2

So Alex is doing pretty well coming off the steroids. He has had a few (2-3) chokes while drinking, but nothing too traumatic for him. He does not want to use his "transformer". I am not sure if it is just too hard still or the unease he feels with it; buut he would rather walk without it at times. The staff at the clinic said "to not force it"; that he would walk again in due time. So I think I will lay off for a while. Yesterday was four weeks post radiation, and so far no sign of the radiation solemness. Alex loves doing his puzzles; and as soon as we can find it, will be building all sorts of things with his new "Lego game". This is a game that he has played at OT and really enjoys. I hope to go by the toy store after my dental cleaning today to pick one up. Super T did not have one. Besides that, Alex is still decreasing his meds and if all goes well (fingers crossed!!!) will be taken off all steroids next Monday. I am tentatively optimistic at this time. It is so scary to get your hopes up.

Zoe is loving school. Steve usually drops her off in the morning and she is so happy when I pick her up. Her vocabulary is growing each week; but she has learned to pinch AND she tried biting today. She loves dismantling her brother's puzzles and listening to him wail at her when she does. I have tried to explain to him that he is making it fun for her to torment him by giving such dramatic responses, but that does not help him much. She is a very typical two year old. She has to test boundaries and figure out how this world works and what she can get away with in it.

We set up an inflatable pool for her this weekend and she loves to go in and out of it, pour the water, take the toys in and out. I have become a nervous wreck because I can't see her if I am inside. I have stopped letting her even go out back unless someone can watch her. I may just have to take the pool down to save my sanity!!! Steve thinks I am crazy but I know kids drown in kiddee pools and can't tolerate the idea of that happening.

So Steve and I have decided that this is hard. Every little second is hard. I can't imagine how a four year old deals with this stuff. I am having real problems and I supposedly have some coping skills (aka: meds!!!) Today, while picking up Zoe, we saw a former classmate of Alex's in the lobby. He asked me, "who is in the stroller? I told him, "Alex". His face said it all. I said, "he looks different huh?" and he replied, "why?" to which I said "his medicines".

I showed Alex's pic to a friend the other day. Her eyes started welling up with tears. She admitted that she had not come around because she was "scared to see him (scared of her reaction)." I so understand this, but explained to her that "this is the easy part." That I will take Alex any way I can get him and as long as he is improving and smiling, life is good! I think about our friends that lost their boy to brain cancer and my mind reels at how incomprehensible that pain must be. I can't (and won't) imagine living without Alex in my life. I don't know how. He keeps me going everyday.

I wondered aloud to Steve tonight that I may be shutting down emotionally. That it is just too hard to really "feel" this. I asked him if our kids were suffering and not feeling loved because of this shutdown. He said that the kids definitely feel loved. So I then proposed the question, "do you think they miss my affection?" To which Steve just nodded and frowned. We then shared a long, knowing stare into each other's eyes.

I hope to work on this in the next few days. To really stop (days are flying by) and share an embrace with the kids. Again, I am scared to break down in front of them, but I'm starting to think more damage may be done by "just going through the motions".

Okay, so Saturday was the one year anniversary of Alex's diagnosis. Can you believe it has been a year? It feels like five to me! We went to see "Ratatouille", Saturday night and loved it. I can't remember the last time I heard applause at the end of a movie, but it is a good story and directed Brad Bird, who also directed "The Incredibles". I highly recommend it, just be aware that it is two hours long (long for a kids' flick).

Sunday, was Father's day and Zoe gave Steve a hand painted frame with her picture inside. Alex got his dad a set of David McCullough books and I got him concert tickets to two of our favorite artists that are coming to town together! Can't wait! We then headed out for the ball game. Alex had been talking about this game all week, and after only ten minutes in our seats, he was ready to go. The noise was just too much for him. Steve and I took a day off from our new "lifestyle" and enjoyed some beers and brat. We told Alex that we would leave after the fifth inning and so we did. It was fun but since Alex did not have a good time, we probably won't be going back with the kids for a while. Good thing anyway, since I put on a pound after the indulgence. Get this! Steve lost weight and absolutely ate more than I did by far!!! It is just not FAIR!!!

Okay, well I hope I can sleep now since these posts are done. I know every one's summer is moving right along. Send a comment when you can. We feel your presence and well wishes everyday, in every precious smile.

God bless!
G