“Big parts of us got broken, of our hearts, minds and beings. Yet we keep getting up, lurching on. We dance with limps.” -Anne Lamott
This morning I woke up with a sense of heaviness and sadness. I wished I could pull the warm covers over my head and go back to sleep. There are mornings, like today, when I wake up from a deep sleep and think this whole thing is a nightmare. A few moments will go by, the room comes into focus, reality hits and I think to myself, I just don’t want to face it anymore. Thursday’s MRI and our two day visit to Boston is looming and Lea has not been doing so well since we dropped her steroids. Every morning I wake up and wonder “is this the beginning of the end?”
Photo credit Rachel Liu Photography
There are days when I can have heartfelt conversations, smile genuinely and laugh heartily. And then there are the days like today, when I can barely keep my eyes dry, and I work hard to avoid human interaction and eye contact.
I have had some sad moments over the past week. Moments when Liv and Lea are laughing, playing, story telling, and singing and I think about how much Liv will miss her built-in friend and playmate. Or when Lea and Keira are making up games in the bath together, laughing and being silly and I think how Keira probably won’t even remember Lea and the amazing person she is. And then I think of the big 5 year hole between Liv and Keira where Lea should be… and how big of a void that will be in so many ways.
I get angry that there is a huge possibility that I won’t get to raise these three girls as I had imagined. Mike and I always get emotional when we see other families with three girls, all grown. That was supposed to be us. The Doran sisters were supposed to grow up together, be teenagers together, raise hell together, and have each other, forever.
I never know when these moments will hit me and the anger and sadness will come on fast and strong. Ordinary things can set me off.
Last week I enrolled Keira in school and the form asked me how many siblings she had. My heart hurt as I clicked on the 2. Will she still have two next year when Keira starts preschool? Maybe. Will I have to change the bio on my website to mom of two? Maybe. Will I be able to go to this concert with my friends in June? Maybe. Will we be going on a vacation this summer as a family of five, four or not at all? Maybe.
Last night on facebook someone posted a video of a child growing old. You know the ones, where in less than one minute you watch a child enter the world, experience various joyful and not-so-joyful phases of youth, grow up, leave home, go off to school, get married, and have children of their own. Videos like these used to make me cry for different reasons. Now I cry because DIPG statistics tell me that I will never have the opportunity to witness any of that. I have experiences like this every day. Seemingly normal things, are now like a knife to my heart.
Birthday parties are particularly hard. While her friends run around and do “seven” things, Lea stands by my side, holding onto my hand for balance and support as I wonder if she will see seven. Maybe.
For some reason, Lea has been intent on meticulously planning her seventh birthday party. We discussed the theme (beanie boo’s) and the cake (chocolate, of course) and who she wants there, and where it should be. Lea spent one entire morning designing the owl for her “thank you cards.” Then hours more cutting and taping them before she had me write a cursive “thank you” in dark black marker on each and every one. She has discussed the guest list, the menu, the piñata and party favors.
It is so hard to watch her carefully plan this day. A day I want so badly to believe she will make it to. The reality is, I have watched several DIPG children die just one month before turning seven. I have seen the heart wrenching posts from their mothers, who should be planning a party and celebrating their life, but instead are morning their death. I am now “facebook friends” with too many mothers who have lost their children before the age of seven.
Lea and I meet for the first time, May 25, 2012. Photo credit Melissa Wilson Photography
Lea’s death is a part of my daily conversations. “If Lea’ makes it to next school year, do you have a spot for her? If Lea is with us, we will go to Rhode Island for vacation again… If Lea is doing well we will go back to Florida in April…If Lea makes it to her seventh birthday, you bet your ass it will be biggest birthday party ever.”
All of the sudden, this serial planner lives her life one week at a time, hesitant to say yes to anything on the next page of my planner, and oh, so careful about what I say yes to, as it takes me away from the most important thing.
How is Lea? Lea’s steroid wean meant some serious side effects. Side effects that if we didn’t know better, would have made us think the monster is growing. So we are back on steroids every other day, and hope this well help. She hasn’t been able to go to school this week, or do much of anything. She sleeps a lot, hasn’t been eating and has pain every day in her head, neck, back and stomach. Lack of food has left her weaker and she needs us even more to walk. She has a sedated MRI tomorrow and her treatment on Friday.
Please continue to lift us up in your prayers, tomorrow and Friday especially.
“Courage is fear that has said its prayers.” -Anne Lamott