Let your kids jump in muddy puddles whenever they want. Soon they'll be all grown up and see the wet pants and wet shoes as nothing but a nuisance. It's beautiful that children can find such joy in the simple things that we no longer appreciate as adults. I hope I never forget that. I couldn't truly enjoy watching Gavin have fun in the rain because I am so burdened by sadness, but at the same time I am grateful to be so aware of what is really special and important. I didn't think in the midst of my grief that I would be able to appreciate beauty, and instead it is amplified. I see it in the clouds, the trees, the wind, the stars... everything. The world around me and the overwhelming kindness that has been expressed through spoken words, written words, actions and a simple nod or smile from an acquaintance is what is keeping me balanced. Just be forewarned that if you give me a hug, I'm probably gonna start to cry. I'm totally okay with it if you are :)
Late last night, after the house was clean and ready for the final "lights out", we discovered this small gift left by Gavin. It's hard to see, but this is his Jessie doll (from Toy Story) in the sink in his play kitchen. Watching Gavin play is one of the funniest things in the world. Some kids are just so great at playing with toys. He's not into cars or building blocks, but he spends hours on end acting out imaginary scenes with his toys. I love it.
|Jessie is upside-down with her legs split for balance|
Tomorrow we will meet with Ty's hospice nurse for the first time. This will be the second time I had hospice in our home - the first time was December 2010. At that time, Ty was also diagnosed with lepto-meningial disease and given 4-6 weeks to live based on the progression that was seen over the course of a month. What a miracle it is that we were granted almost two more years with him. As I said in my last post, I'm always praying for another miracle, but I still have to acknowledge that I have already been blessed with one.
|Ty back in December 2010 - how much he has GROWN!|
So many things race through my mind, I wish I could keep track. Sorry if my thoughts are all over the place tonight.
Today I realized that after riding around with Ty in my back seat for hours and hours every single day for years, watching him in my rearview mirror almost as much as I watch the road in front of me... he probably won't ever ride in my car again. I can't take him anywhere at all, and it is so surreal to look in my mirror now and find an empty seat, or Gavin... alone. I see the head supports and his neck brace that we've become so accustomed to and it is so strange to think I don't need them anymore. Because Ty is dying. Is that really happening? It can't be. No more trips to the supermarket. No more candy stores. No more anywhere. We can't even take a walk outside because he can't tolerate being moved (it gives him pain) and he can't breathe unless he is lying flat and on his side so that the secretions he can no longer swallow can easily drain out of his mouth.
Slowly, cancer has robbed Ty of everything that he loves. First, it robbed him of his home. We had to move upstate away from the ocean, his playground on the boardwalk and all of his friends. Granted, he has a beautiful home and he is happy here, but it was an adjustment that I'm sure he didn't understand at the time. Then, the simple concept of "home" was taken from him too, when you consider that he spent over 200 nights in a hospital bed. His ability to speak became compromised very early on, as did his eating and drinking. He became too weak to walk only two months into treatment. Steroids made him so upset he wanted to jump out of his skin, and they made him completely incapable of sleeping at night because he was so agitated. The chemo made him throw up constantly and lose his golden curls. The countless infections forced us to live in a bubble. He suffered headpain that I can only describe as wicked, cruel, vile and evil. One by one, all of the joys in his life were taken away from him. After he worked so hard on his physical recovery, late effects of radiation left him paralyzed from the head down. When he could no longer play with his toys, he fell in love with candy. As of five days ago, he can't even lick a lollipop without a choking effect.
Regardless. Last night his brother was dressed up like superheroes and playing around the house. When I stripped him of Ty's old Iron Man costume, I was surprised when Ty whispered "I want to wear that." I draped it over him to make pretend he was wearing it and just look at this grin. He truly is UN-friggin'-BELIEVABLE! No self pity here. We have so much to learn from Ty Louis Campbell, I swear. Live life to the fullest and love every minute of it. He does despite all he's been through and all he is going through right now.
Your comments have been so thoughtful and kind. I can't even begin to tell you how much it means to me and to Lou. Thank you so much for loving Ty and our family. You are helping us more than you know just by reaching out with your supportive words and prayers. Thank you from the bottoms of our hearts.
PS - I want to find a little boy who could really benefit from Ty's wheelchair. It is brand new. He sat in it only once at home. If you know someone, please inbox me at firstname.lastname@example.org.