At this point, I'm still unsure of how to feel about not getting the transplant. Part of me is relieved that I don't have to make that decision. I'm glad I won't be spending a minimum of three years across the country away from my family and friends. I'm glad that I won't get another scar or have to learn a whole new medicine regimen.
But then there is a part of me that is mad. I'm mad that this is one more decision I can't make for myself. One more thing I don't have control over. I'm scared because this means once I start to get sick again, there is very little they could do to get me better again. All my life I was told 'someday you'll get a transplant.' and I, without realizing it, put the transplant on a pedestal. Something to look forward to. Something that would fix all of this. I know now that it's not a quick fix all and that there are still complications that would come from the surgery. But there was still always that little bit of hope that accompanied the idea of a transplant. But now that hope is gone... and I just don't know what to do or how to feel. I'm in limbo.
For a year and a half to about two years, my family and I have been in limbo. Moving from one center to another, waiting to see what test results said, waiting to hear if the doctors and hospitals would take me on. We never really got concrete answers and have put our lives on hold all because of this. And now it's over and I'm not sure what to do. I'm relieved it's over... but I'm also scared because now that we have a 'no' answer, I have to learn how to deal and cope with getting an answer I'm not 100% pleased with. (Although to be fair, I would've been 100% pleased with the yes answer either because of what that entails).
It's hard to express your feelings when you're feeling them all at once and aren't sure which one to focus on. I haven't really talked about my feelings on this matter to many people because quite honestly, I'm not sure how I feel about it to begin with. It's amazing how one thing can evoke the whole spectrum of emotions, from relieved to being terrified at the same time. I want to say thank you to all the people who have kept in touch with me during all of this and been there for me. Your support and love as always, means so much to me.
Hope and Love,
Becca
Hi Becca,
ReplyDeleteI just read a book where your name was mentioned in the end for inspiration. The description of the book is what made me read it, because it mentioned a heart defect. My son has Hypoplastic Left Heart Syndrome. He's 6 now and his had 7 total surgeries, and of course the other procedures that are impossible to keep count of. I've asked the dreaded transplant question of his cardiologist, and I know for sure now, that the day will come when he needs it. I just wanted to let you know that I started with the last post on your blog, but I plan to go back as far as I can. Being in the heart family of the medical world, I always hurt right into my soul for those who have been burdened with these conditions they did nothing to deserve. I want to read your blog for insight for when my son is older, which may or may not happen. I value my life, and my children's lives more since having him, and knowing every day is a gift. I hope you're getting your normal as much as you can. I look forward to reading through your words.