It's hard sometimes. I don't often compare children. Not because of my circumstances with Scarlett and her rollercoaster ride of ups and downs but because it's just not something I think to do. But every once in a while I'll see a child and my heart hurts. I see him/her do what my daughter should be doing and I know she'll never get there. Something as simple as running and giggling or creating butterfly clothes pins. Or I see my son go to other adults to play because he knows that mommy can't because she has Scarlett. He's not upset about it, it's just the way it is. And it kills me that I can't do things for my boys the way I want to because there's so much to do to keep Scarlett alive and happy.
How do terminal parents do it? Knowing that their child will certainly die and to only be able to stand by and watch, knowing that there is nothing, nothing, that they can do to stop the end from coming. To solider through while their hearts break over and over. I don't know. What's worse is every wheeze, every unusual or erratic happenings surrounding Scarlett's patterns puts me on edge. One moment she's fine and the next I'm wondering if there's trouble on the horizon. I teeter on the edge so many times in a day that I'm surely to go mad. How can one person go on living while holding Death's hand? And how melodramatic does THAT sound? Probably a lot.
I have so much to be grateful for and have had so many wonderful blessings bestowed upon us. Scarlett has claimed more than her fair share of hearts. She's taught me so much : to live in the moment, to see the beauty in the smallest (often forgotten) things, that getting to the finish line isn't always good or needed....she's amazing. But she has a dark side, the screaming, the ill health, the drowning in paperwork just to keep going. It doesn't stop. And then again, everything has to stop when Scarlett is in need. Playtime, bedtime, eating, dishes, shopping, driving...it all has to stop right then until Scarlett's safe again and then life can start again for all of us. I think I have mental whiplash.
The scrutiny, the looks, the explanations, the needs....it doesn't stop. I'm lucky I have her, for sure. I would never trade her for one moment of certain sanity. My boys, as exasperated as they are to always come second or third or fourth to Scarlett, wouldn't want their life any other way because they love her so much. Even at their young ages, they know she won't be here forever. Carson would ask me at two years of age when I called from the hospital to tell him I'm coming home and he would reply, " And Scarlett too?" ...because he knows there will come a day where I will come home without her. Cole wants to be here lest Scarlett passes because, as soul shattering as it will be for him, he wants to spend the last few minutes with his sister so she knows how much he loves him. Do you understand how proud I am of my boys and how much that breaks my heart to put them through that? Sometimes being a parent sucks.
Life isn't always so dramatic or dark. We have awesome moments too. We run through the house with her in my arms chasing the boys, yelling HOT FUUUUUDGE at the top of our lungs while the music blasts. We see who can make the funniest faces to get her to laugh and end up laughing at our selves the most. My friends, who adore Scarlett, hold her and play with her and love her and sing to her and we are lucky.
All of this makes me smile and feel happy. But I can't stop the heavy feeling in my heart from creeping in from time to time. I can't help but share dark, ominous glances with my closest friend when Scarlett's health is failing. She knows. She feels what I feel and can sense something's brewing. I do too. I don't know what's worse....feeling the way I do with no one understanding me, or to see my own fears reflected in someone else's eyes, confirming what I already know is yet to come.
