Can you help me reassure my sister?

[Tine]

Hope I'm asking this question in the right place....

My sweet niece (almost 7 mos.) has torticollis and rather pronounced brachycephaly. She was diagnosed early and has been in PT for several months. She has no other health issues and is developing normally (motor skills a bit slower, but still in the normal range). However, her head hasn't rounded on its own, so yesterday she became the proud owner of a baby helmet.

She looks freakin' adorable in it.

My sister is having a really hard time with this. She's being a great mom and getting all the services her daughter needs. But she's having difficulty dealing with it emotionally, I can tell. She can't talk about it without getting teary, so she avoids talking about it at all. (She's always been that sort of person...hates talking about difficult things.) I don't know whether she thinks it's her fault (it's not, of course), or she's just sad that everything isn't going 100% perfectly, or what.

But I'd like to help her. Reassure her somehow. Find a way to talk about it without sending her over the edge. I'm trying to just be really matter-of-fact about the issue. But I wonder if there's more I could do.

Any ideas?

[SpottedFoxx]

You are such a good sister. I don't have any personal experience with this but my girlfriend's daughter had to wear one and was very upset at first. For her, it was the people who would look differently at her daughter. She didn't want people to start at her sweet girl. I get that.

One day they were out at the supermarket. A woman said (loudly), why do you have that thing on your kid's head, it's hot outside! Before she could respond, the man standing next to her winked at her and said "haven't you ever seen a stunt woman in training before?" My friend laughed, the woman was confused and walked away and she thanked the stranger (turns out his son had to wear one too).

I'd just listen if she needs to talk or to cry (and maybe make her the offer of a shoulder). Maybe, if your sister has the right kind of sense of humor, you could have onsie made (they do it on cafepress.com) that says "stunt woman in training".

[Tine]

Thank you so much for responding. I *love* the "stuntwoman in training" onesie idea. My sister does have that kind of sense of humor, and I think it would help her (and me, and everyone else) put a lighter, more positive spin on all this.

[sbgrace]

Grieving (which is what she's doing) takes time. Everyone does it differently. I think the best you can do is listen and tell her that you love her and love your niece. Keep emphasizing what a great mom she is and how she arranged services and etc. Acknowledge that this is hard. I don't know if this will come out right but try to watch saying/doing anything that might look like it's minimizing what she's experiencing. What she's facing might not be the worst thing that could happen to your niece by a long shot (and intellectually she knows that too) but in her emotional world right now it is, you know? Grief does that. With each dx we've received for my son I've had a grief process. Often my family tried to point out how it could be worse and that was not what I needed at the time. I needed support and someone to acknowledge that it was horrible (ours have been pretty horrible) and sad. Finally, she's likely at high risk of postpartum (and general due to the situation) depression right now. Keep that in mind in case she needs extra help in that way.

edited to add: the stuntwoman in training thing isn't what I'm talking about in minimizing. I think it's cute and I'd share that story and ask her what she thinks of the idea (assuming it seems like it would go over well with her). I was talking more about attitudes and words you chose and such.

[Tine]

Originally Posted by sbgrace

What she's facing might not be the worst thing that could happen to your niece by a long shot (and intellectually she knows that too) but in her emotional world right now it is, you know? Grief does that. With each dx we've received for my son I've had a grief process. Often my family tried to point out how it could be worse and that was not what I needed at the time. I needed support and someone to acknowledge that it was horrible (ours have been pretty horrible) and sad.

Really good advice. I remember feeling this way during the infertility struggles DH and I had. I *hated* when people who really didn't understand the situation very well tried to minimize my grief.

I agree that the stuntwoman onesie doesn't qualify as minimizing. It would give my sister a tool to head off potentially obnoxious strangers. She has a history of freezing up/shutting down in difficult situations, so something funny like that onesie could really be helpful to her.

Thank you for chiming in!

[anj_rn]

OK, so I am a pedi nurse and used to work for a pedi surg group that had tons of kids with plagio & helmets. One of my moms put a little strip of velcro on her DD's helmet and then proceeded to make bows that matched every outfit. She put velcro on the bows and coordinated everything her DD wore. She said people were so intrigued with the bows, they ignored the helmet.

I also had moms who painted the helmets (my fave were the cowboys football helmet and one with the Harley Davidson Logo).

I would also encourage her to talk with her doc. Many kids are developmentally appropriate, but have funny shaped heads. If this is the case, once the helmet is done, no one will ever know the difference.

[SpottedFoxx]

Originally Posted by anj_rn

OK, so I am a pedi nurse and used to work for a pedi surg group that had tons of kids with plagio & helmets. One of my moms put a little strip of velcro on her DD's helmet and then proceeded to make bows that matched every outfit. She put velcro on the bows and coordinated everything her DD wore. She said people were so intrigued with the bows, they ignored the helmet.

I also had moms who painted the helmets (my fave were the cowboys football helmet and one with the Harley Davidson Logo).

I would also encourage her to talk with her doc. Many kids are developmentally appropriate, but have funny shaped heads. If this is the case, once the helmet is done, no one will ever know the difference.

People's creativity never ceases to amaze me.

[Tine]

Originally Posted by SpottedFoxx

People's creativity never ceases to amaze me.

Same here! Thanks so much, anj_rn, for passing along those great ideas.

[AndVeeGeeMakes3]

No personal helmet experience, but my dd has cranio-facial issues, so we're in the doctors' office with kiddos who are wearing them all the time. Like others, I've seen some pretty awesome creativity on the part of moms (painting them, velcroing stuff on them, etc.).

I agree with sbgrace that it is so important to just let her ride the emotional waves, and quietly be there. I get really uncomfortable when people gush over what a great mom I am to be "dealing so well" with dd's stuff. Maybe that's just me. I appreciate it when my closest friends/family are able to pay attention to what's going on at any certain moment: celebrate with me when I'm celebrating, be quiet with me when I'm struggling, be encouraging when I'm feeling doubt, and, probably most importantly, actually laugh with me (or even make jokes with/at/about me) when it all just gets too absurd.

So glad she has you!

[Tine]

Originally Posted by AndVeeGeeMakes3

So glad she has you!

As for me...I'm so glad I have MDC. I just *knew* the mamas here would have some great advice.

[heatherdeg]

Originally Posted by sbgrace

What she's facing might not be the worst thing that could happen to your niece by a long shot (and intellectually she knows that too) but in her emotional world right now it is, you know? Grief does that. With each dx we've received for my son I've had a grief process. Often my family tried to point out how it could be worse and that was not what I needed at the time.

You've gotten lots of great advice here (which isn't shocking). My ad had wicked torticollis that affected her face/jaw more than her skull... so we escaped the helmet (although we almost had a brace).

She's now 18mo and doing really well. I'm sure your niece will do great, but your sister is fortunate to have SOMEone like you who is not going to tell her that to make her feel better, though. It just completely invalidates the feelings she (appropriately) has. I wish I'd had someone like you in my life when my son had issues.

So big hugs to you, too.

[Tine]

Originally Posted by heatherdeg

So big hugs to you, too.

Aw. Thanks.

[hdirks]

my baby had torticollis and plagiocephally. She was in the helmet for 5 months. Hers was purple with butterflies on it and it was adorable!!! However, I was a bit upset of her having to have it at first also. First off, it is a PAIN. She sweated so bad it in she stunk like a foot and had to have a bath EVERY night. And yes, people can be very rude. The cashier at the super market was checking us out one day and said "what's wrong with her head?". People can be VERY rude. However, I don't regret it for one moment. She got it off two months ago and her head is a MILLION times better. Having a normal head shape is FAR mor important than having to wear a helmet and be inconvenienced for a few months. and there is FAR worse things. My daughter has severe disabilites. She is profoundly deaf, has global delays, and has limited vision, among many many other ailments. So for us a helmet was just another bump along the road. At this can be fixed!!!! Tell her not to worry. It is definitely worth it in the end!

Oh also, my orothopedist had designs you can order them in, but if hers is blank tell her to go to blingyourband.com they have ADORABLE decals you can order for them!