Musings of a Marfan Mom

January 16, 2016
by marfmom

The Boys Rate Golden Globe Fashion

Back by popular demand, M (age 6) and J (age 5) critique red carpet choices. This time, it’s Golden Globe participants.

Denis O’ Hare:

M: Good job! There’s no such thing as boy things and girl things!
J: He’s wearing nailpolish just like me. LOVE. IT!

Jennifer Lopez, in Giambattista Valli Couture:

M: Minion. Banana.
J: Cute! I like the design. Cute.

Kate Hudson, in Michael Kors:

M: Are you candy? You look like a pink tootsie roll. And shiiiiiiny!
J: I don’t like it. I don’t like that her belly is sticking out. No to all of it.

Jaimie Alexander, in Genny:

M: It’s like roundish lettuce.
J: I like her hair and I like the colors and the dress.

Eva Green, in Elie Saab Couture:

M: Glittery! Glittery!
J: I love it!

David Oyelowo, in Dolce & Gabbana:

M: Daring!
J: That’s the best. suit. EVER! I love it so so so so SO much! Purple is my favoritest color!

America Ferrera, in Jenny Packham:

M: Minion Banana, the Sequel
J: I like the necklace and I like the color of the dress.

Alan Cumming:

M: He’s handsome! I love the blue jacket!
J: I love his mohawk and I like this tie and his sneakers!

Jane Fonda, in Saint Laurent Couture:

M: She’s like a little flowerpot!
J: I don’t like that thing on her. And she looks like Jesus.

Gina Rodriguez, in Zac Posen:

M: Cinderella-ish! That’s a good thing. I was just trying to compare it with something.
J: I like the straps on her arms and blue is one of my favorite colors!

Eva Longoria, in Georges Hobeika:

M: Tacky!
J: I don’t like it. TRICKED YA! I DO like it because I like the flowers on it!

Viola Davis, in Marchesa:

M: We’ll call this “snowy, snowy night.”
J: It looks like it’s snowing!

Regina King, in Krikor Jabotian:

M: Flower Woman!
J: I love her cape! She looks like a superhero!

M: Viola Davis
J: Gina Rodriguez

Least Favorite:
M: Regina King
J: Regina King

January 10, 2016
by marfmom

To Sport Or Not to Sport: Balancing Life with Restrictions

One of the most difficult parts about having Marfan syndrome or a related disorder is figuring out how to manage activity restrictions. Affected youth (and some adults!) see themselves as invincible. Parents may be inclined to place their children in a bubble for that reason, though some others opt to ignore doctors’ recommendations entirely. Neither is a healthy approach.

The Marfan Foundation has a handout on activity restrictions. It discusses the basics: non-competitive, non-isometric activities, keeping heart rate low, no collision sports. Serious weight-lifting isn’t advised, nor basketball, or football.

But what about all the activities that are somewhere in the middle? And what if your/your child’s aorta isn’t yet enlarged? Do you take the preventative approach and observe all activity restrictions, in the hopes of slowing down aortic enlargement? Or do you decide to let your child fully participate until they absolutely have to stop, even if that might speed up when surgery occurs? We only have one life, so it’s not as if we can try both routes and see which is best in the long run…we have to make the most thoughtful decision we can and hope for the best.

I was diagnosed at 8 and was already enjoying horseback riding and basketball. I had to give up both. My mother would argue that she and my father took a balanced approach to activities…I might remember Mom in particular as being more of a bubble person (love you, Mom!). Naturally, growing up I told myself that I would parent MY kids differently, if they had Marfan. I would let them do way more than I had been allowed to!

But then I grew up, learned a lot more, watched too many friends die too young, and had kids – one of whom has Marfan. I thought maybe I’d get lucky and J would be completely uninterested in sports. I mean, his mom is a freelance writer, and his dad was nationally ranked in Starcraft2 for a short time. What I’m saying is, the athletic blood does not run through our veins. Except, of course, in J’s. He wants to play all the contact sports. Jumping off furniture? Why not? Knee-high AFOs don’t slow him down.

J has watched his brother play sports, and begged from a young age to be included. I’ve been torn. I know the very real pain of having to give up a beloved activity. But, sometimes you don’t miss what you’ve never had (case in point: due to a stomach surgery I’ve never been able to have soda pop, and that doesn’t bother me). At the same time, if you’re too restrictive, kids can rebel, which can be dangerous. I used to sneak into gym class and participate in all kinds of things that weren’t good ideas.

And so we talk. He’s only 5 but he understands a lot more than you might think. He’s been keeping track of his medications for awhile now (what he takes, for which body system, and when he needs to take it). He self-advocates with doctors. He understands, on a very basic level, why he can’t do certain activities. When the Menininho was playing t-ball last year, we agreed to let J try out his preschool playgroup’s t-ball program. It was perfect! None of the kids had any idea what they were doing. It couldn’t have been less competitive or dangerous. So, in the fall, we allowed him to play soccer in that league. J understands that he is only allowed to play soccer until he graduates the preschool program. I like that there is a clean cutoff. Easier for him to understand, and early enough that he’s not terribly invested in it yet.

This summer, we’ve decided, in conjunction with J’s cardiologist, to let him play t-ball in the regular community league. The nice thing about having an older brother without Marfan is that we’ve been able to test out the leagues first. That’s how we know that even at 5 we would not be comfortable with J playing rec soccer, but t-ball is low key. We haven’t determined whether his cutoff will be the end of t-ball, or the end of coach-pitch. We’ll see how the latter goes for the Menininho this summer.

I don’t know if this is the right answer. My Marf Mom gut says that stopping risky sports before middle school will be easiest, but who knows what J will tell his future therapist? I think that’s just how parenthood goes in general though….muddying through, making the best decisions we can with the information we have, apologizing as needed, and trying to do better.

How do you make decisions about your/your child’s activities?


December 30, 2015
by marfmom

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?