An Open Letter to the Mom Who Just Wants to Help
Dear Well-Meaning Mom,
I know you see me struggling with my medically complex child and your heart aches. You want to do good and you want to be there to help if you can. You know things are tough for my family right now, so you reach out to offer… something. Anything.
The problem is you don’t know what to do. That’s not your fault. Not at all! You don’t understand what it’s like to be in the position I’m in and you just want to be supportive so you call. Again and again. You call to check on me and my child, you call to see how we’re doing and you call to see if things are any better.
“Just tell me what you need me to do,” you say over and over. “I don’t know how to make this better for you – just tell me.”
But over time this has become more about you than about me or my son. You want to help me because it will make you feel better about yourself.
You’re starting to get frustrated with me because I don’t know what you could do to help either. I don’t want to ask you to clean my house for me or run errands. You can’t take my son to his doctors’ appointments and you don’t know him or his needs well enough to care for him while I’m out. I know you mean well and want to make things better, but I really don’t know what I could ask you to do. So I say I don’t have anything for you to do… and you feel like I’m shutting you out.
You’ve told me I look sad, I look tired… even that I sound angry. When you call to check in you’re annoyed that I can’t give you any exciting updates. Things are still bad, the medications aren’t working and the diagnosis is the same. There isn’t much the doctors can do. We’ll be doing more tests soon, but I really don’t think the answers from the tests will change much. I’m sorry I can’t give you better news. Things move slowly and often not in the direction of progress. This is just our reality.
You’re concerned that I’m pulling away and hiding. You say I don’t get out enough. The truth is, I do get out, but I don’t visit with you as often as I used to. Being around you has become a chore. You have so many questions about my son’s condition and you’re constantly pushing to help so it’s all become too overwhelming. I’m not relaxed around you – I’m anxious. I don’t want to spend all my time with you worrying about how hard my life is. I know it’s hard (trust me, I’m keenly aware of how difficult things can be) and sometimes I just need to escape it.
So let’s change this dynamic. You know how you can help? Help me feel like a full person, not just the mom to the medically complex child. Remember that you’re my friend, not my therapist. Sometimes I like to sit with friends and drink coffee and talk about TV shows or how ridiculous our husbands can be. It’s OK to help me feel like a “typical” mom now and then. I don’t get to have that feeling very often and I cherish it whenever I can get it. That’s how you can help me.
Please stop with all the questions and the pressure. You’re not being a hero by “reaching out” and offering to help me. Just slow down and be a friend. It’s OK to not do anything at all and allow the mundane to creep in a little. That’s what friends are for.
It’s natural for special needs parents to go above and beyond for their children, but we need to remember that it's important to take a break as well.
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