The One Thing We Actually Need From Friends as Special Needs Parents
I feel I hold it together pretty well, overall. I’m overwhelmed often, and sometimes I’m depressed. It’s not that I feel this is a burden; I consider it a blessing and my daughter is a joy. It’s just a lot of tough stuff to deal with sometimes. While most people are preparing their children for college, I’m just hoping and praying and doing everything I can so that my child survives long enough to have that option.
Sometimes, I get the feeling that’s viewed as being dramatic or negative, or that I’m trying to one-up someone. I’m not. Just like anyone else, I turn to my friends to talk about things when I’m in need of a little moral support. It just so happens that a lot of my life revolves around the effects of transplant, life-threatening situations and scary statistics. If it’s overwhelming, tiring or frustrating to hear about sometimes, I’m sorry. I understand. I live it. I feel that way, too.
I often feel like a failure or inadequate by comparison when I see moms who seem to have it all, do it all, know it all and who can balance it all, seemingly effortlessly… all with a smile on their faces. Meanwhile, I struggle to get out of bed some mornings, my house is a mess, my laundry is piled in a corner and I’m turning on the TV instead of reading to my kids so I can try to find an hour here or there to catch up on the work I’m so behind in because I’ve been running back and forth to the hospital so much. So I feel like a fraud when people assume I’m an awesome super-mom just because my child has special needs. Who, me? I’m barely holding it together.
I may not think to ask how you’re doing, or what’s going on in your life… partially because, I assume, my friends and family would tell me if they want me to know or if they need someone to talk to and mostly because, yes, I am selfishly caught up in my own life at the moment. I’m sorry. I’m not Super Woman. I’m not even a great friend or a great mom. But I do the best I can and, if you need a friend, I’m here and I won’t judge or compare because we all have our own stressful lives, and yours is no exception.
As the mother of a child who comes with a multitude of additional challenges that go above and beyond the norm and, I think, speaking for others in my situation: All we need from a friend or family member, whether they live in our world of medical or behavioral challenges or not, is simply the acknowledgement that it’s really freaking tough sometimes.
We don’t need to be told we’re “super” or put on a pedestal. We don’t need to feel “normal” because our lives are anything but, and to deny that is to deny our right to feel the way we feel about it. We aren’t being negative, dramatic or trying compare our lives to others or compete. We just want to talk to our friends about what’s going on or have a shoulder to lean on, like anyone else does. It just so happens that transplant, life-threatening situations and the constant, overwhelming stress associated with those things are huge parts of our lives.
We’re being realistic. We have seriously, chronically ill children. We don’t consider them a burden, rather a joy, but we are often overwhelmed and even depressed or exhausted trying to cope with it. Anyone else in the same position would be as well.
We’re not failures. We’re not superheroes (our kids are). We’re special needs parents.
A version of this post originally appeared on My Unstill Life.