Today was another day in the familiar tug-of-war between joy and ache--the tension between our very real happiness and our very real heartbreak that has become the atmosphere of the breath we breathe: in with joy and out with heartache all in the same breath because our life is undeniably both now.
We had a hilarious lunch conversation today about how one of the kids' good friends wants to grow up to work with sharks, but is terrified of grapes. The girls went on and on and we laughed together in genuine joy. We are happy here. God has cared for us. Our needs are met and our home is loving. We live in joy.
At dinner tonight, out of the blue, Hannah announced, "When I grow up I want to live in a yellow house and have three kids and coach a soccer team!" And all at once my heart shattered, because I knew what was coming next. I knew, and there was nothing I could do to stop it.
"And when I grow up," Emma followed, but then she paused. She stood silently, remembering the horrible uncertainty of her future. Neither of us could find the right words.
Her eyes looked to me for direction, so I pulled together the pieces of my heart that I could find, and I smiled at her. "It's OK, Emma," I reassured her. "What would you like? It's OK to dream."
The she grinned in her naive, Emma way and said, "I want to live in a blue house and be a soccer coach." I smiled at her, and my heart just dissolved.
Emma will likely never live independently. She will likely have very little eyesight left by adulthood and may already be blind. She will likely be in kidney failure or will already have had a transplant. She may need a liver transplant. She may have developed thyroid failure, diabetes, or other endocrine problems. And her social skills will never be up to par with societal norms. Emma will probably live with us, or maybe in a group home, but I haven't had the heart to tell her that yet.
Toby and Elijah were suddenly engaged in a shouting match to declare what color houses they wanted to live in and what color soccer team they would coach, but my eyes were now on Naomi who ate silently. Naomi is not naive. She knows. And she doesn't engage in "when I grow up" conversations. What would she say? No one knows what will happen when Naomi grows up, and she knows that.
Sensing the tension inside of her I asked her, "What do you think, Naomi?" She silently shrugged and continued eating.
Hannah piped up for her, "Naomi says she'd like to be an artist or a writer."
Seizing on that, I encouraged Naomi, "I think you would make a very good writer some day, Naomi." That much is possible, and that gave her a smile.
Just then Elijah yelled over-top of Toby, "I want to grow up to be a BROWN house!"
And then Naomi giggled. And then I giggled. And then we all laughed together about Elijah growing up be a brown house. And it was OK again. At least for awhile.
Some days I'm not sure how to live with the tension. How do I let three of my children be fully excited about growing up? How do I encourage them to dream big and plan for the future right in front of two children whose future is so uncertain?
How do I help Naomi and Emma process all the emotions that come up in their young, innocent hearts at times like this? Should I encourage them to talk about their feelings more? I don't want to put words in their mouth or fear in their hearts if it isn't there. I don't want to suggest, "Does that make you feel sad?" if they really are doing OK. I'm just not sure how they're doing with all of this. They are both so mature and so strong, but I also want to give them permission to feel sad or weak. They are so quiet that I feel like I would have draw it out of them with leading questions, but I am afraid that the leading questions themselves would create fears or sadness that might not be there.
Some days this is really hard. I want to let them forget it all. I want them to be happy, normal kids as much as is possible, but then we get blindsided by TV shows about stars, or by random, clueless strangers asking them what they want to be when they grow up, and I know I need to prepare them for that. I'm still groping to find the right balance between helping them deal with their disabilities and helping them be as normal as they can be.
Some days I still can't handle my own emotions well. I belong to several groups on Facebook: two for the diagnosis that Naomi and Emma previously had (ARPKD/CHF, because after 5 years with that diagnosis those people are still family to me and we can still help each other out), two for their new diagnosis of Bardet-Biedl Syndrome, and one that is a group of moms from the college I went to. Every day I listen to and talk with moms in the first four groups who are fighting for their children's lives: fighting against doctors who want them to terminate pregnancies, fighting doctors who don't want to treat their babies after they are born, fighting to understand diseases they had never heard of, fighting with insurance companies to get therapies and assistive devices covered. Every day these moms are asking some of life's toughest questions, crying together, falling apart and getting back up.
In that same newsfeed every day the moms in the group from the college I went to are asking about how they can be sure they're getting the best baby carrier for their money, or find just the perfect preschool, or the perfect babysitter, or teach their child to read when they are three. And I want to strangle them all through the screen. I know that's not the right attitude. I know they're not doing anything wrong. These are normal questions, normal concerns for normal moms and healthy kids. But sometimes I wish I could give them some perspective.
"Hey you mamas out there, your kids are most likely going to be OK. They're going to grow up and be mostly healthy and probably live independently and get married and have their own healthy kids. And they're going to do all of that no matter which baby carrier you choose, or which preschool, or how early they read. So just… chill out, and be thankful."
But I haven't posted that yet, because it would lead to a lot of awkward silence. They wouldn't have a clue that I just had that heartbreaking dinner conversation where two of my kids remembered that they'd rather not grow up. The mamas on the internet wouldn't understand. So I keep those emotions in me, where they do less damage.
Sometimes I feel like I've connected with other people who really do understand and have a good perspective on the challenges we face. Yesterday I came across an article about a 13 year-old boy with retinal degeneration who just had a beautifully bright attitude about life, and I found it inspiring, until I came to the part where the mother explained that she came to terms with her son's diagnosis of retinal degeneration when she realized that it wouldn't kill him.
Even reading articles about people that are supposed to understand, I suddenly get stabbed with an emotional knife. Yes, for this boy, retinal degeneration was all he had. It wouldn't kill him. But that cannot be my solace. My girls have a far more complicated syndrome, and even among other people with BBS they are in more danger than most because of the poor condition of their kidneys and livers. Most people with BBS don't have the severe kidney and liver involvement my girls do. For my girls BBS will likely take their life early.
I know it. They know it, to some extent. And together we're learning to live with it, one day filled with joy and with heartbreak at a time. Some days it is harder than others.
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