I recently began spending my sleepless nights in Ty's room, which is where I am right now. The totally cute room that he never used. It has a Captain America theme with an adjustable bed (a hospital bed, but you would never know) and an adorable piece of red furniture that is basically a set of shelves to display all of his cool stuff. The walls, of course, are blue. So is his comforter. When we moved his room back upstairs a few months ago, Lou and I truly believed he would soon be strong enough to turn over in bed and we planned to begin making his transition from our bed into his own room after two long years.
There are a number of Captain America posters sitting on top of his shelves. We never did get them framed since we bought them on Ebay. I am so torn over what we should do because Ty's room is incomplete without framing and hanging the posters. Should we finish it up the way we planned? It's all so surreal just thinking about it. I swear, sometimes I don't believe that this is really happening. That any of this really happened to me... to us...
I'm so happy now that Ty is in my bed instead of sleeping in his own room. I'm happy that we will snuggle tonight and all morning. He is the greatest little boy to sleep next to depsite his garbled breathing as of late. Unlike Gavin (who moves around like crazy) Ty just wants to wrap his arms tight around my neck and fall asleep. He stays in that hugging position all night long. It's the best feeling in the world.
Last night, as I sat in this same "captain america" bed, I cried to God for what might have been hours. It was more of a stream of consciousness one-way conversation that involved all of my jumbled thoughts being spilled out onto the floor. I debated a lot over the philosophy of, "it is better than to have loved and lost, then to never have loved before." While I agree with that, I also struggle with how painful the "lost" part of it is. My life would be incomplete without ever knowing how much love I was capable of had I never become a mother. My heart was opened to a world of unknown depths and untouchable beauty at the very moment I first saw my Ty. But to know that he will soon be ripped from my clenched arms, I will be left with a sea of darkness that has even greater depths into the unknown - it's horrifying. Unimaginable pain and loss awaits me. And you would think watching him suffer was the most cruel and unusual punishment imaginable... wait until I am looking for him in the bed next to me and realize he is gone. How am I ever going to be normal again? How am I going to survive losing the love of my life.
So many of you have shared your own heartache and words of wisdom over the past few weeks. I know you are right and I find so much comfort in your advice and encouragement. Thank you. I know I will get through this, I am just so scared of how incredibly lost and sad I am going to be.
I thanked God over and over again for my gift, my Ty, my miracle. For the best five years of my life. Never in the life that awaits me will I experience more love than I have been blessed with in the years I have been Ty's mommy. I try to be strong in prayer. To limit my thoughts to being gracious and thankful. Still, in the end I just found myself weeping and begging over and over again, "can I keep him? Please?" Like a child begging to keep the puppy that followed him home from school.
Ty had a terrible day today. We are worried about him because he is sleeping a tremendous amount which is very out of the ordinary. Over the past two years, even during his toughest treatments, Ty rarely falls asleep during the day. Today he fell asleep about an hour before his nurse came at 1PM. We agreed it was a much needed nap and when she checked his vitals they were perfectly normal. However, Ty proceeded to sleep for another six hours! Then he was up for about 3 hours and now he is back in bed for the night. This is very scary because it is so unlike him. As much as I appreciate how good it must feel for him to finally rest, and how much quiet time we had around the house, I am worried that he will remain like this when I so desperately want to interact with him. In fact, I think this is the first 24 hours that we couldn't even get a smile out of him in months.
So, instead of sharing Ty's smile, I will share a photo of Gavin that will hopefully make you smile. Always completely oblivious to what's going on with Ty... here is Gavin dressed like Wolverine and insisting he can wear his costume to school. He is such a fun little boy. God bless him.
I don't have the energy to write much more tonight. A warm pair of arms await me next door. But I just want to say "thank you" before signing off. For all of the comments and messages I've received. And, for the amazing gifts that have been delivered to our doorstep. And, finally, for the delicious food that we have been enjoying from our friends and neighbors. We are forever grateful. Much love to all of you from Ty and the rest of the Campbell family.