Sunday, October 12, 2008


I have so many things on my mind. Kevin seems to be adjusting to being back home. I am amazed at the compassion of the children around him. They are amazing how they have handled Kevin's situation. It has to be a reflection of some very caring parents. We are all adjusting to being back, but it is a good thing. I have only unpacked 2 large bags, there is much more to still do. I am having trouble finding things in my own home because we have been gone so long, but that is just a minor issue compared to the larger picture. All of the kids have been crying alot this past week. I am sure it is just them finally letting out what they have had to live through the last 8-9 months.

I think Saturdays party went well for the kids. I really appreciate all who were able to attend and celebrate Kevin's return. It is such a blessing to get to have him back home!!!! I am still learning how to host a large party like that so please excuse any lack of social graces (for those who were there). I wish I had more time to spend with everyone who was there. I so appreciate all that came and those who weren't able to make it who have been so supportive. It is through you that I draw the strength that keeps me going and helps me not to feel so alone in helping Kevin fight this battle. I am sure what we have faced is difficult to understand from the outside but so many have extended support to us, it is very humbling and amazing.

Over the last two weeks two children with the same thing Kevin was dx with passed away, Owen and Camden. The last month of their lives sound like they were pretty difficult and painful from what I read on their sites. Their mother's have had to endure their own personal Holocaust as far as I see it. Please keep them in your prayers as they try to keep life moving on for the rest of their families. Our friend little Sarah looks like she is rapidly losing this cancer war. I know her mother has to be going through hell while trying to keep a smile on. It is this that I am having the most difficult time accepting. These children suffer terrible deaths. I can't understand why research hospitals aren't looking harder into what in the heck causes this stupid brain tumors. When we were sent home we were basically told, 'see in you in 3 months!' Nothing about how to live now so Kevin can stay cancer free. I fail to understand; why not give parents basic anticancer facts doesn't even happen after a child ends treatment? I know there is a HUGE lack of funding for childhood cancer, compared to adult cancers. Perhaps that has something to do with it. I pray none of you have even a taste of this childhood cancer world we have seen. My dream is that places like St. Jude get put out of business because there are no more children with cancer.

Onto Scotty....Why is it kindergarten is so hard for little boys? Scotty came home with the top of his hand all scraped up pretty bad earlier this week. He told me and Ms. Bonnie that some kids at school kept stepping on his hand, he kind of made up a story around the whole thing, which I found out about when I asked his teacher, who was surprised to learn about his injury, about it. His teacher asked him about it the next day after my email to her. He gave her a totally different answer. He says because he doesn't want to get anyone in trouble. When it came up again today he named names this time and was insistent that a group of kids kept stepping on his hand until it bled (which is obvious). Whatever happened it had to have hurt, it shows in his injury. The next day after it happened he begged me not to send him to school. He's never like that. Of course I am concerned. But since the teacher doesn't seem to think anything is going on I am not sure how to handle this. Do I wait to see if he comes home with any other injuries? UGHH!!!

Jake is walking more and more now. He can walk across the room if he really wants to. I think he really enjoyed the party and having all of the people around. Lisa was great at watching him, I so appreciate she was able to come babysit him during the party.



Maribeth said...

It's good to hear that Kevin is home and doing well! We will keep him in our prayers, as well as the families of those other children.

Tae Scott-Smith said...

Rachel and fam,

We're so glad you guys are back home. The party sounds like it was a huge success with tons of people--we were partying there with you in thought on Saturday.

I can totally relate to the foreign feeling of being in your own home and around familiar places. It feels so sad for it to feel so strange. I, too, found it slightly funny but mostly infuriating that I couldn't remember where things were kept--and I'm the one who puts stuff places! Trash day...forgot that one too. I just tried to remember that it would take a while to get into the swing of things and took it room by room each day. I'd look into drawers and cabinets and see what was there and slowly say "hello" to the house again.

As for suddenly being home without any rules or advice on what to do with a post-chemo and -radiation child, I felt a bit ill-equipped for that, too. I knew I could call the hospital if need be, but it still felt like something was missing. I don't think it's on the hospital's part but, rather, my fear of the unknown and not being able to prevent the unknown from trying to take down my son again. I don't know...

My biggest battle is the one you mentioned in your last posting, hearing about those we've met and come to love passing away. We know better than most what their parents feel because the passing isn't quick and painless. They have to push these poisons and dangerous rays into their children and hope that it reverses their condition. When it fails to do so, they are left with the memories of the hard battle and agonizing pain. I think often about how I've wasted (completely and thoughtlessly wasted) more years of my life than a lot of these little ones have even been on this earth before being taken back. Sobering, isn't it?

I've been reading inspirational books at night, trying to take pleasure in even mundane tasks, doing nice things for others when they don't expect them. I've also started taking a knitting class to take up where I left off at the Target House when I went for a couple of lessons with Ms. Beth. There is a book that is so good I may just have to keep it at my bedside and get a spare copy for my purse. It's called "Traveling Light for Mothers." It's by Max Lucado. It's not very big or very long, but it touches on a lot of the things that I've been feeling lately and really helped me to pull myself out of my funk. Check into it if you're interested. My copy came from a local independent bookstore and was $1 because it was used. Brand new, it costs around $7. I think you'd like it. If you didn't, I'd gladly buy it from you! :D

I hope Scotty gets to where he likes kindergarten a whole lot better than now. I would be as concerned as you, though. He comes home with a scraped-up hand and the story changes AND he's not keen on going back the next day. I hope things get smoothed out and that he gets to where he runs to the bus in the morning and runs to your doorstep in the afternoon, smiling the whole time.

Well, it's bedtime for me. Sorry if I made this a bit wordy; sometimes I get carried away. We miss seeing you all and hope that things continue to trend up in happiness and strength (and locating items in the house). Please pass along a thank you to Kevin's dad for posting the nice message on Ethan's site a while back.

Your friends,
Tae, Will, Ethan and Sean :)