On the fast track

I had just finished reading “The Fault in our Stars” (There are going to be major spoilers in this post so if you haven’t read it I’m just warning you ahead of time) and it was a great book. The book was basically about a girl named Hazel who had terminal cancer. She was only a teenager and she meets a boy named Augustus at a cancer support group. Augustus was a cancer survivor but required his leg to be amputated. Long story short, they ended up falling in love. Hazel was terminal but the medication she was on was keeping her mets from getting bigger or spreading. However, Augustus ended up getting recurrence of his cancer in multiple places. Augustus who was cancer free ended up getting sick and he died before Hazel who had always been terminal. I can’t begin to imagine what it would be like to have a terminal illness. To see the people that you love knowing that you’d leave them behind and that your life with them would never go on. I also have no idea what it’s like to lose someone that you loved more than anything. Nonetheless, I do know the feeling of having the person that you love more than life itself be terminal. I feel like I am on a fast track for my life. I want things to happen and I want them to happen now. I am doing Skylar’s bucket list for the memories and so she can have every experience but there are also things that I want for my life that will never be the same if she’s not there for me to experience it with. There’s also this black cloud of uncertainty that breaks me down. Since I started this bucket list, we have been extremely busy and I was worried about how she’d do but she’s flourished. She’s done so well and I thought that we are taking steps forward instead of backwards and I’ve been so excited and then reality hits me some. You start to notice things that haven’t happened before. You start to realize that things in her body aren’t working as well as they use to. She has always been g-tube fed for most of her life but she’s been able to eat by mouth for years. She didn’t eat a lot but she enjoyed it and she enjoyed eating different things. Lately, she’s not able to. She’s had issues with being able to control her secretions so she often chokes and she sounds like she's always congested and has a rattle in her chest. There is a fear of aspiration and I understand but to me it’s just another step backwards and it’s hard to accept. When we leave the house we leave with oxygen, pulse ox monitor and her magnet. Those are the must have things when we leave and after talking to the hospice nurse we will probably have to start carrying the suction machine too. We’ve had it for a long but never really had to use it. It’s just the idea that we didn’t need it that made me feel good. I felt like I was having a small victory since that was one thing that we didn’t need to use or take with us and she wasn’t having issues with it. Now I feel like it’s a small defeat. I loved that book but the end was hard to read. It was hard to read about her losing her love and my heart just ached at the idea. I feel like my life has been put in fast forward as well and I feel pressure to need to do things so that Skylar can be part of it. I just have this feeling that the things that I want for myself will be incomplete. I can’t avoid the thought that one day she won’t be here and I know that no matter what my life will be incomplete. There will always be this void and this emptiness in my life. It’s just extremely hard because the only future I have ever wanted was with her. The idea of being married was nice but just an idea or a thought.

This past weekend, we were invited to go see “Heaven is for Real” and it was a great movie but it had me thinking about Heaven obviously. I think it would be hard to see a glimpse into Heaven and have to come back to this world. I know that Heaven will be beyond words and better than we can ever imagine. Skylar will no longer hurt, she will no longer need a wheelchair to walk, no more seizures, and no more pain. As much as I want that for her, I want her here or I want to be with her. I want the best of both worlds. I want her here with the perks of Heaven but then I want her here with me so that we can experience the future that I’ve always wanted. I don’t want her to experience Heaven without me and I don’t want my future without her here. It’s an extremely hard place to be in and an unfair place. It’s unfair that I will one day bury my child and that many parents before me have had to do the same. I wish I had ability to say that everything happens for a reason and to actually believe that with my whole heart. It’s a strange place to be in because I have faith that God has a bigger plan for me but I’m still pissed about the plan that I was given. I’m not sure that there will ever be a part of me that can accept the plan that includes me losing the love of my life.  I try not to focus on the idea of what could have been or the cliché that she will leave the world too soon. I try to celebrate the life that she has make the best of the circumstances because it’s absolutely worth it.