Musings of a Marfan Mom

The Mother I’ve Become


A couple weeks ago, Miss R got a helmet for plagiocephaly (i.e. – flat head). Doesn’t she look cute?

In 2-4 months she should have a nice, typical, round head!

This helmet comes with a story. I first noticed Miss R’s flat head when she was 4 months old. Her physical therapist suggested a helmet. Her pediatrician suggested we wait longer, and so we did. When she was 6 months old, we got a referral to an orthotist, who wanted us to wait a few more weeks just to see if Miss R’s head would change. During that time, her office would process R’s insurance so that we could get the helmet covered.

A month went by. At 4:00 the evening before her appointment to be measured for the helmet, I spoke with the orthotics company. I was told that neither the primary nor secondary insurance would cover the helmet. But! The tertiary insurance would! I hadn’t actually received our card yet but I just needed to call them.

So by now it’s 4:30 and I can’t get ahold of the local people in charge of this tertiary insurance (we’ll call it ABC insurance). I call the state office. That’s how I learn that Miss R’s application was never received. The application we sent in 6 months ago. That we had been told by our local people in charge of ABC that they’d handled.

I had the kind of anger where I can’t sit still. I sent some frustrated emails. Paced. Planned. And the next morning I called our local ABC office to find out what had gone wrong. When I’m angry like this, I don’t yell. I don’t swear. But as the person on the line said, “this is not the Maya that I’ve met.” I told her I didn’t care HOW it was fixed, but she had three days to fix everything and get Miss R’s helmet covered. Three days to get her insurance paperwork filed and approved and this addendum accepted.

We went ahead and got Miss R fitted for the helmet. Thanksgiving was the next week and our timeline was so tight before it would be too late for the helmet to do any good. That day of the fitting, I spent almost the entire day at the phone, or at a specialist’s office gathering paperwork. Everyone told me this could not be done. This would take two months at least, maybe three. And to every person I said “I will do whatever you ask, but you have three days to do this and you WILL do it.”

It didn’t seem possible, I’ll admit. On the evening of day 3, I heard rumors, but no official answer. The next morning though, victory. The impossible happened. The helmet was ordered, and two weeks ago Miss R received it. And obviously, I didn’t do it alone. A number of people from various offices pulled together on this. But I also realize that if I hadn’t been bold and insistent (but polite) the approval wouldn’t have come in time.

When the order was placed and I could breathe, I couldn’t help but reflect on this journey of special needs motherhood. I’m not the mother I was nearly 7 years ago, when the Menininho was born. I’m not the mother of 5 1/2 years ago, when he was diagnosed with autism.

I’m more confident. A little harder. Fierce. Grateful. I’m not afraid to be firm in what my kids need. And I wouldn’t go back to who I was before.

What was your “impossible moment?” When did you know your’d changed?

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