Nobody thinks about what it would be like to be the mom of a child with special medical needs. Nobody wants to think about anything other than their child being perfectly healthy and thriving. When I first got the 2 lines on the test, my thought wasn’t “what if they’re sick??”, it’s “Thank God! I’m having a baby. I’m so excited!” But yet here I am, 14 years after getting the first double line, over my head with doctors, medications, and having absolutely no control over our lives. I know more medical terminology than anyone should, and it’s just the tip of the iceberg.
Don’t get me wrong. I wouldn’t change my life. I wouldn’t wish anything different with my children except for one thing: I would take EOE away. I would take diseases away. I would take away the unknown for this disease. I would pray for a cure. I do pray for a cure every day.
Every time he cries, my heart breaks a little more. Every time the blood tests come back showing something a little off, I panic. Every time he asks if this food is safe for him to eat, I die a little inside because he just wants to be normal. I want him to be normal. I want him to be able to exist without doctor appointments every week, every month. I want to not be on a first name basis with the allergist’s nurse. I want him to not be in pain every single day. I want a cough to just be a cough. I want a cold to be nothing more than a runny nose and sneezing. I want him to be able to go to school like he wants. I want him to be able to hear well enough to read (yes we’re still struggling). I want so much for him, so much that I can’t fix.
Here’s my secret: I’m exhausted. I’m tired, not just physically, but emotionally and mentally. I’m exhausted and empty. And lonely, so lonely. Bored, maybe? Yes. My brain is bored, despite having all of this information and knowledge and fighting. But maybe the boredom isn’t so much boredom as trying to distract myself to keep myself from breaking. If I keep busy enough, I can’t feel. I can’t think of anything other than keep going, keep moving, so I stay busy.
I stay busy so I don’t break because if I break, I’m scared I won’t be okay anymore and won’t be able to be strong for him, for all of them anymore. I can’t break. I won’t, but sometimes I want a safe place to land and break and know that I am okay to break. If I break, I can’t be strong for him so I have to keep going. I keep trucking along being strong because the alternative is to break, and I can’t let myself do that. I can’t let him down. I can’t stop fighting for him. I can’t let my weakness mean more pain and suffering for him, so I keep going, keep fighting. I don’t have any other option.
So if you see me and ask how I am, don’t be surprised if my answer is “Fine.” Fine is so much easier than going into everything. Fine is so much easier than admitting all of the thoughts swirling in my head. Fine is easier than going into all of the struggles, doubts, and fears.
Fine. That’s what I am: Fine.