Therein lies my heavy heart. I don’t know what life looks like in a few years for Isaiah Jane. I know what I want it to become, but I have no guarantees. So instead of planning adventures and vacations, I’m neck-deep in phrases like failure to thrive, global delay, and let’s wait and see. Today feels especially ominous because Isaiah Jane officially welcomes her baby sister to her club at midnight. The clock will strike and Honor Rose still won’t walk. I know she will soon, just like I know they will both gain weight eventually. But I feel like screaming, “I didn’t need this, Lord! I had enough to carry with Isaiah Jane’s diagnosis! What exactly are You trying to teach me?!” Simple plans like going to the park have become a burden. I can’t push two strollers by myself. In the above photo, I’d forgotten one sling at home when we went apple-picking. I have to think ahead of every day, every outing. It exhausts me.
And the worst part? The most selfish part?
I’ve never felt so alone in my life.
I’m so tired and so lonely. Lately, I’ve been melting down over the most trivial of triggers. I try to keep the grief at bay, both because I know Chris doesn’t feel it like I do and because I know how blessed I am to have my daughters. But the grief creeps and creeps and creeps until it overwhelms me, leaving me so much more than sad. It leaves me angry. I’m a fixer, and I can’t fix this. I can’t fix my daughter. So I yell. I slam things. I think shameful thoughts and I say things I regret. The self-pity frustrates me to no end. I mean, hello… I’m writing a post about myself instead of my twin girls, on the eve of their eighteen month birthday.
All I want is a few answers. Theories, suggestions even. What are the chances of Isaiah Jane being mentally retarded? Will every photo for the rest of her life give people an opportunity to mock her beautiful blue eyes? When will I meet other moms of kids with the same diagnosis? Where can I learn how to deal with well-meaning friends & strangers who say things that break my heart? How much longer do we have to carry the sisters everywhere we go? My arms are getting heavy, Lord. My heart is getting heavier.