Monday August 13th - Hitting Home

Hi all. So where to begin. Last week was quite painful for Alex due to constipation and other ills. On Friday, I took him to the hospital for abdomen xrays. The docs think that perhaps a nerve issue is causing the problem. Fortunately, things started moving over the weekend. But the week took its toll on me. After the hospital, I sat in the car and screamed until bile made my throat hurt. Then Steve and I went out for beers (thanks to Kathy!!!) and were able to drown our sorrows and talk some frustrations out. That is until Sunday, when it was Steve's turn.

After a long night, Alex had his dad carry him to the couch. Then he asked Steve to cover his feet with the blanket that was on him. Then he asked Steve to hand him the remote which was on his legs. Steve immediately took me outside and expressed his frustration. He was able to identify the problem as this: when we were going through treatments there was a plan; a beginning and an end to look forward to. Now there is just waiting-INTERMINABLE waiting!!!! He said that the couch incident really brought it home and asked me if I felt the same way. To which I just laughed and reminded him that I am HOME and yes, I feel the same way. I also reminded Steve that Alex has been betrayed by his body and believes that he really can't do ANYTHING. As an example, last week after two days of trying to have a BM, Alex was on the toilet again and we asked him to really push. He cried out "I CAN'T, I CAN'T DO ANYTHING!!!!" OMG, what a glimpse into how he feels about his body huh? Anyway, my point to Steve was this-that since he has been betrayed by his body; he has forgotten what he can do and it is our job not to "cater" to that feeling but rather to teach him what he can do, no matter how small a task it may be-like getting the remote. Steve and I agreed and decided to just keep reminding ourselves of the situation and try to stay calm.

Unfortunately, that is not as easy as it sounds. Steve is traveling again and just to make life a bit more complicated, we got the kids a full size bed to share in the nursery. Zoe had been out of sorts and missing her brother so she started coming to our bed last week as well. Turns out by Thursday night she has a fever of 102.7 degrees! Anyway, something had to give and in the best interest of mom and dad (and therefore the children) the big bed is no longer for little bodies! Last night was hell. I don't think Alex slept more than 2 hours and was crying, begging to come sleep with us. At one point, he was on the floor, throwing his toys into the hall and said "I hate you Mom!" So far tonight has gone much better and my fingers are crossed!!

Just to add fuel to the fire, Steve, Alex and I toured a local special needs preschool. Most everyone we spoke to that knew of the school had positive things to say about it but Steve and I did not "feel the love". Now we are completely torn about what to do for the upcoming school year. Do we get an advocate for Alex and keep him in his last school? Do we send him to this special needs school? Do we keep him home? AUGHHHHH!!! I asked him tonight which school would he like to go to this fall and he said "the one Zoe goes to." Which is a wonderful choice if only we could afford it. Our savings is being depleted and we just maxxed out our FSA monies for the year, which means we have to pay "out of pocket" for all remaining copays, meds, etc for the year!!! And our dog has found 3 new holes in our fence and is running through the neighborhood!!

Okay, well I'm stressed now but at least you can share my pain. I'm exhausted AGAIN and just want to sleep for days!

God bless!
G