Waiting and watching our beautiful boy sleep is so painfully beautiful. While he sleeps we sit and run our hands over his soft, delicious hair, our finger slides down his warm, pink cheek, and we kiss him on those billowy, heart-shaped lips of his over and over like we've been doing since the day he born. I am constantly checking the temperature of his hands and feet to make sure they aren't getting cold. Several people have told me that is a sign that he will leave us soon and now I am riddled with stress over his temperature. "Warm. Thank God. What? Ty's sweating? No, don't take his Nana blankie off, we have to keep him warm." I am literally in physical pain caused by sheer anxiety. Couple that with the emotional pain that is beyond any physical pain imaginable... I am a train wreck (you can cut off my arms and legs and leave me in the middle of the woods to be slowly eaten alive and it wouldn't come close to how I'm feeling).
When cancer took away his ability to run, Ty enjoyed walking while holding our hands for balance. When he could no longer walk, he scooted around the house on his butt and he loved building towers of blocks or legos with his brother. When he was disabled and limited to the couch (which was 80% of the time these past 2+ years) he found so much joy in his toys and looking through toy catalogs. When cancer took away his ability to even move his arms and play with his toys, his love affair with candy emerged.
Now he can't even eat, but we present him with a cool new piece of candy every single day and he still smiles every time. In fact, he received a beautiful gingerbread house the other day and he likes to show it to everyone who enters our home. Today, an adorable candy "jeep" was given to him by a boy in our neighborhood. So sweet!
|Some of Ty's loot from the past few days. Lego guys, mini pumpkins, a blue sparkle jar and yes, the candy jeep|
I promise you, the Campbell's will be famous among the neighborhood kids for always having totally amazing Halloween candy in honor of Ty. Yesterday Ty and I looked through a candy catalog and picked out gummy fingers and insects, glow in the dark gumballs, lollipops that ooze blood. We're getting it ALL! Today he was tired so when he asked for arts and crafts, I entertained him by drawing candy for every day of the week. Toward the end, I asked him what kind of candy we were missing (we had red candy, peppermints, swirly candy, candy buttons, gumdrops and blue striped candy). Ty answered quietly, but just enough so I could understand him.... "hearts." UGH! Can he be any sweeter? How much do you love him? Here is a picture of our craft for the day.
My house if completely taken over by cancer and all the things that revolve around this disgusting disease. Here is a picture of the dishes I did after we put the boys to bed tonight. These are the medicine syringes from the past couple of days. That's HOW MUCH medicine Ty gets every day, and he isn't even on chemo anymore!!
Ty has been throwing up in the middle of the night lately, so I've had a lot of laundry, too. Lou and I live a life that revolves 100% around Ty and cancer. We have been fighting so hard for so long, and we watched our angel baby go from the picture of perfect health to hospice. This is pure hell, but we are still so busy and preoccupied with caring for him that we are totally holding it together (my worst time is always night when I'm alone with my brain that won't stop thinking). We are trying to love every minute with him without letting our pain take over. This house needs to be happy and fun always, and we are doing our best to keep it that way. I can only imagine how much of a void we will suffer from when he is gone. I am so scared for us and what is ahead.
|Two shelves for medicine alone|
|These four drawers are filled with medical supplies and this isn't even the half of it|
You all know how passionate I am about spreading the word about pediatric cancer. There is an interesting article in this week's Newsweek that focuses on the need for an increase in funding for all cancer research. The statistics are so outrageous. How is it possible that we don't have enough funding for researching this epidemic? Then consider all of the innocent children who are attacked by this demon. It's disgusting. The budget for the National Cancer Institute (responsible for developing ways to prevent, treat and cure cancer) was $5Billion, compared to $144Billion spent on conflict in the Middle East over one year. Whoa!! One in two men will develop cancer. One in three women. One in four people will die from cancer. That's 25% of the population. We need to do better than this, and of course, I think we need to start by saving the children.
Before signing off, I want to apologize if you have reached out to me and found me unresponsive. If you have left a gift at the doorstep or prepared a meal and didn't receive a proper "thank you" yet. Please know that the love and support we have been showered with is amazing, and we are grateful beyond words. Anyone who knows me well, knows that I am almost incapable of returning a phone call, text or email in a timely manner. I don't know why! I think because I always feel so rushed, and I want to take my time in responding or have the time for a good conversation, and then I don't always find that time. Even though Ty isn't an infant anymore, he demands just as much of my time, even more.
That's all I have to share for tonight. Sorry I was all over the place, but that's how scrambled my brains are right now. Lou and I aren't sleeping well, obviously, and it's catching up I guess. Thank you so much for all of your love and support. Always praying for a miracle.