What I learned from my daughter's helmet #It worked for me#babies#medical conditions#special-needs May 18 2010 | Guest post by Georgina Walker So here I am, finally I have the courage to 'out' my parenting lesson in hopes to help someone else sharing my struggles. When our daughter, Ruby (the most beautiful baby in the whole world) was about 4 months old, I noticed something wasn't quite right. She seemed to be having a problem looking around. If something was right in front of her she was alert and interested but she didn't care about it anymore if you moved it out of sight. She also slept in one direction no matter what we did. When I brought it up, no one seemed to notice what I was seeing. I decided to have it checked out, better safe than sorry. So off Ruby and I went to our family doctor. He poked, prodded and yanked. The whole time I felt guilty putting her through what was surely nothing. The Doctor brushed it off and told me to keep doing what we were doing. I went home feeling a little better, conscious cleared and continued doing as I had done. A month went by and I felt like nothing I was doing was helping. Time was not making a difference. The feeling of clarity soon faded and I found myself sitting in the same position as before, super clueless, in the waiting room of a medical office and feeling really helpless. This time we would be meeting with a developmental nurse at the local Health and Wellness Centre in our town. She was concerned and compassionate about the distress I was feeling, and after telling her everything she felt it best to refer me to a specialist. The appointment was booked and we had a whole month to sit and wait… Related Post Releasing feelings of guilt and blame when your child is born with an illness I'll never forget the moment I realized I didn't get to hold my baby right after his birth like I was "supposed" to. It wasn't... Read more There I was again in a gloomy white waiting area (this time it was a children's hospital in the city next to our town), my head spinning with questions and concerns. Her name was finally called. Here we go, finally the answers we were looking for… We were in that office for less than 2 minutes before a flurry of text book words were thrown at us. Ruby was diagnosed with Torticollis, a condition in which her head was being forced to tilt one way and her chin was elevated, pointing the opposite way. Basically, she had a major head tilt. What was once a cute tilt became serious. Not only did the Torticollis need treatment but it had been left unattended for so long that it had developed into Plagiocephaly. Plagiocephaly (in Ruby's case) is unusual shape of the skull caused by pressure in the womb (fluid leak in our case) and being unable to move her head around when laying on her back causing…A FLAT SPOT! I just went blind. Frig. I had no other choice but to approach this in a way that I would tell anyone else to — let's get it fixed and move on. No big deal. After that daunting visit we started physio to loosen up her neck and gain full mobility back. Then she was fitted for her prosthesis. Yes folks, a helmet. It didn't really hit me right away. She was fitted, we picked a color, forked over our couple grand (that's right, it's not noticed as medical yet but rather cosmetic) and home we went to wait while it was custom crafted and shipped across the country. Meanwhile we continued physio. Everyone there loved Ruby and she loved going. At home we did all the exercises religiously. Everything felt like it was working out. I felt optimistic. Then two days before we were to pick the helmet up, it hit me. It was already hard enough to gain confidence being young parents (Ruby wasn't an accident) and being heavily tattooed parents. I have green hair! It felt like everyone was already staring. I had never seen a baby in a helmet in person. Everyone I saw on the net or in support groups weren't people I felt I could relate too. I didn't even know what I was going to tell my friends. My mother's response was what I did not want to hear, but I needed it. "It's not about you this time," she said. "It's only about Ruby." I called my Mother crying, "What is everyone going to think?" She was right. If my friends weren't going to be accepting, forget them. If people were going to stare, it wouldn't be because of the helmet. I was Ruby's Mom and it was my job to show her it didn't matter what anyone thought. She will always be the same beautiful little girl. Two days later we went and picked up that dreaded helmet … and as it turned out, it wasn't that bad. In fact, she looked really cute! At home we all had a laugh at how much braver she was with it on. It was hard at first: 23 hours a day she had to wear it, but she was a trooper. I researched how to paint and seal it and bought stickers to decorate. There were a few bumps (a new car seat with more head space) but in the end it wasn't as big a deal as I had envisioned. I noticed things like I had more to talk about with parents I generally would struggle to talk with before. Sure, we got the odd response now and then, but it didn't bother us like I thought it would. Instead I had a new-found confidence. We knew we were the awesome parents, and I no longer felt like I had failed Ruby. I learned to follow my gut. And in the end, the most valuable lesson I learned through our experience was that it really was no longer about me. Now and forever it was always going to be about Ruby, our beloved daughter. Reporter Name * Reporter Email * Original text Enter the original text here. Edited text* Enter your suggested copyedit here. Notes You can add a note for the editor here. * Required information. Fix Typo Georgina Walker As self proclaimed rockabilly wanna-be's, tattooed and crude, my husband and I our blessed with a beautiful, now 2yr old, ghoul named Ruby-Monroe and are excited to add to our small family soon. Oh and we must not forget our fur baby Lucy, an Old English Bulldogge and Ruby's best friend :) PREVIOUS Nontraditional school portraits from Stomping Ground Photo NEXT 20 kid-lit books off the beaten path Show/Hide comments [ 35 ] This is fantastic. I'm not a mama (yet) but dealing with weird looks both from offbeat-ness and medical or disability issues is definitely a really good thing to think about. Go you for making it about Ruby! Reply your little girl looks like a totally rad roller derby queen! I bet anyone staring at your green hair and gorgeous daughter is quietly wondering how you got to be so fabulous, and where you got that tutu. Thanks for sharing your story with us! Reply Yes! Totally agree–totally rad (and adorable!) roller derby queen! Reply I feel you. My daughter was diagnosed with torticollis at 2 months due to a right head tilt. By the next appointment (4 months) we were at PT for about 2 months. It was really hard to get her to turn her head and do all that stretching. We were told that we should do the helmet as well. We turned it down because we were seeing so much progress but you can still tell that one part of her head is flat. But you truly have to know where it is on her. She is now 11 months today. You have an amazing story. I hope your daughter will find your strength amazing. I found that most people did not know about torticollis as well. I hope that your story lets more people know about it. Reply I saw a baby on the subway with one of these the other day, I had assumed she had had some sort of surgery or stitches on her head and the padding was for protection. I'm actually relieved that it wasn't something as serious as brain surgery. And as judgmental as I am, I never considered judging either the mother or the baby. Reply I think our parent's attitudes can greatly shape who we are and what we think about ourselves. Not everyone has this insight so thanks for sharing. Just recently one of my friend's kids couldn't tilt his head back to drink out of his sippy cup. She didn't really know what to do about it, but took him to see her chiropractor and after a week or two he was able to move normally. She said that she noticed his moods were much better after that too. I found a little testimonial so you don't have to take my word for it: Reply When I read this entry, the pictures loaded first and so my first impression of Ruby formed before I read the article and I thought… … "How adorable! That baby's lovey is a bike helmet! I wonder if she got the idea from an older sibling…" (In our family a "lovey" is an object a child will not put down on pain of death.) So don't worry — some people will just be staring at Ruby cause she's cute. Reply This story made me cry! Ruby is very lucky to have you as a mama! And jeez… she is so freakin cute! She seems like the funnest baby to snuggle. Like she has spunk and would punch you in the head if you bugged her! ^-^ also, i say HOORAY for your green hair! I just added some blue to my doo last night, so it'll be nice and colorful for my delivery in two weeks! hehe! Reply Ruby is gorgeous and the little helmet with all the stickers is adorable. My best friend's baby was born with a clubbed foot and wears the braces on his legs. Sometimes he gets looks but that's all. He won't have to wear them forever and the results are worth it. You sound like a wonderful, caring mom. Reply You have nothing to be ashamed of, as you are doing your duty as a mother to make sure your baby is happy and healthy. Besides, Ruby's helmet is totally bad-ass! Reply I babysit a girl who had to wear a helmet 23 hours a day for about 3 months, starting when she was 3 or 4 months old. Her mom decorated it with pretty decals and stick-on rhinestones. She looked beautiful! (When she stopped wearing the helmet, her mom put it on one of her teddy bears. It's still there and she's almost 3.) Reply My son Brandon had to wear a helmet and it turned out 2 of my friends also had their kids fitted at the SAME time. we were the helmet club! No one even cared and I felt the same way! what will people think?? here is my son in his helmet. he finishes next week…although we kinda stopped it last week as we are so happy with the results… http://theabelings.blogspot.com/search/label/helmet good luck! Victoria Reply She is beautiful! The helmet is just like braces or eyeglasses. You're correcting a problem but it's no big deal. Reply It's asinine what insurance companies are calling "cosmetic" procedures. That aside, I admire your strong and selfless reaction to something that could easily inspire worry and insecurity, especially seeing that you overcame initial worries. I'm not a mother, but if/when I decide to start a family, I'd like to face parenthood with your kind of resolve! Reply This piece really moved it. It is the exact reason why I subscribe to OBM. No-holds-barred, honest stories about what it means to be a parent. REALLY IMPORTANT QUESTION TIME: Does anyone else wish the honesty and intimacy that is present on OBM was also present on OBB? Here, I hear stories about the reality, triumphs and struggles of being a mother. I feel like the reality and struggle of becoming a wife as glossed over at OBB – to the detriment of the site as a whole. I DON'T just want wedding porn, and that is the majority of the posts there now! I want to read stories like what I read here at OBM – how it feels to get married when you grew up without a father, what it means to change your name when you've been disowned/estranged by your family, other things DEALING WITH REAL LIFE! OBM deals with real life. I love it infinitely more then OBB now. Thank you for bringing in guest posters like little Ruby's mom, Stephanie. Stories like this one encompass what I love about this site: mama truth, honesty, heart-break, and, of course, love between mother and child. I wish what we have here translated to OBB more, and I hope that truth/honesty/love will translate more in the future OB universe of sites. Reply I totally agree about the OBM/OBB comparison. I'm not a mama, and I am a bride-to-be (Only 32 days to go! EEK!) but I definitely prefer the articles on this site. Wedding porn is fun, but I'd like more articles dealing with the reality of weddings and marriage and how to deal with them without going completely insane…. not to mention what to do when you've already gone completely off the deep end. I definitely feel like I could use some help there, and I sure hope I'm not the only one! Also, I love the bat stickers on the helmet! We all wish our kids will be born perfectly healthy, and it's great to see how well you dealt with a less than ideal situation. Reply I agree that OBM = real life, OBB = glossy fun and I also love OBM more than OBB for this reason (and btw I'm not a mama). I think OBB is good as it is, but it could be even more awesome with some more gritty real stories. I'm sure I would visit it more often if it had more life based stories that would keep its relevance after a person is married. Dont get me wrong, the porn is fantastic! But as we all know there's more to a wedding than just the physical elements. I'd love read some inspiring articles about the emotional side of weddings and marriage. All that being said, Arial you're doing an amazing job with both sites! Reply Both sites are great and fun! But I agree — once I was married OBB lost a lot of relevance for me, so I don't visit. OBM is relevant every day! I think the distinction is that it's a wedding planning site, not necessarily a site about brides. Or at least that's how I gathered. Reply Hey all! I just wanted to clarify that Georgina is Ruby's mom…I wasn't sure if you were saying thanks to me for bringing in the story (I'm the Manging Editor) or thanks to Stephanie, Ruby's mom. I had a small glitch and failed to put her name up there at first, but fixed it later that day. 🙂 Reply Hey, Kelly. Thanks so much for the feedback. The reality of the situation is that OBB and OBM are two very, VERY different sites. I've made the very conscious decision to keep OBB focused on wedding planning and uplifting inspiration. That said, I hear your feedback about wanting some more "meaty" posts over there, and I'll definitely chat with Megan about that when we're talking editorial strategy. More importantly, I'm so glad you're liking OBM these days. It's been significant challenge for me to figure out how to translate the positivity and inspiration of OBB to the much thornier world of parenting (you should see my editorial strategy docs — I take this shit seriously). It's so great to hear that it's resonating! Thank you so much. Reply I love how you decorated Ruby's helmet – she's super-cute! I'm a new mom myself (my daughter Ayla is 8 months old). It's funny how even as new moms, we have a mother's intuition; your sixth sense told you that something was not right in the beginning. I rely on my gut feeling a lot when "parenting" – it's hardly ever failed me. Reply first of all, I just want to say – Good for you for following up with your instincts that something wasn't right! Bravo. Second – our baby was in a full body/leg spica cast for hip dysplasia. not the same thing you guys had, but many similar issues with being worried about people staring etc. What we learned was that it was much much harder for us than it was for her… she was still her same happy-go-lucky self. Babies especially are resilient. She actually had fun playing with the bar on the bottom of her cast. I always thought she looked at all the kids and wondered where THEIR casts were… cause hers was so cool, everyone should have one! Those poor deprived cast-less other kids. 🙂 Reply I saw the helmet picture before I got to the post, and I agree with Emily Kate up there — your baby looks like some awesome roller derby bad-ass! And she is a cute as a button to boot. =D Thanks for sharing such a personal story; in a world where we're told to look out at every little detail as something that could be OMG SERIOUS, you almost never hear someone talk honest about what happens when that little detail is truly serious. Your daughter is lucky to have such a great momma! <3 Reply What a beautiful telling of your story Georgina! And Ruby is a heart-breaker – what a gorgeous bub 🙂 I love the helmet, I think she looks like a little toughie in it. Brava to her and to you for rolling with the punches with such bravery. Reply Just realized I typed Stephanie's name instead of Georgina's. Love your post Georgina… Reply Great post! Aren't mothers terrible/wonderful for just putting things in to perspective sometimes. My daughter has always slept on her tummy and has never really spent time in a pushchair (literally a few hours of her life) so she's not had to deal with the flat head thing, but so many do – I was actually sent a special pillow to review to prevent flat heads… Not sure how I feel about that yet… anyway, enough of my rambling. Just wanted to say this was a lovely post! Reply My daughter had tort, plageo AND metopic craniosynostosis. We started out with a helmet but ended up having to discontinue helmet therapy due to inter cranial preassure and major reconstructive surgery on my daughter's skull. It's not easy when your child is "different" but props to you for following you gut! We had a heck of a time getting out daughter diagnosed as well. always trust your mommy instincts! Reply Ruby is such a doll in her helmet!! My daughter is almost 20 months old and we are still working on resolving her tort. We recently have starting using a TOT collar that is helping re-train her to hold her head straight. It was a hard thing to do but in the end, we knew its what we had to do. I blogged about it here: http://tiredmommytales.wordpress.com/2010/04/16/like-a-cool-new-necklace/ Before I had any idea of what tort was or what the helmets were for, I was curious what they were but I can't imagine anyone making negative judgements!! Reply it is not just a condition for babies, my 65 year old sister woke up one morning with a stiff neck that as the day wore on, caused her chin to be bent over to her chest, it was diagnosed as torticollis. Hers is unusual cause it on both sides, usually it is just one She is so much pain. She had tried heating pad, muscle relaxants, physical therapy, chiopractor. It was better for about a week then came back How do you get rid of it? Reply Many times, Xrays or CT scans are suggested to be sure that the tort is muscular and not related to a bone abnormality. If its muscular, common treatment is physical therapy, some use chiropractic care, botox injections…I'm not sure how any of those would work with adults though. Reply http://www.slide.com/r/RGaAiM1uxj9My9iTTDSV_PLAkSCdeFvI?previous_view=lt_embedded_url pictures of my daughters helmet. We were very happy with the result! I would like to note that in the netherlands it is covered with health insurants Reply Great post! Reading it, people get what you are with Ruby, a warm, loving, caring and fun Mom. Reply My nephew wore a helmet and it all turned out great. My own daughter was in a brace/halter for 2 months due to hip dysplasia that was diagnosed upon birth (we live in a place that performs hip sonograms on all newborn babies to detect the problem early and correct it as quickly as possible). It made life a little difficult sometimes, and we got asked about it a lot – but she did great and now everything is fixed and she is 100% fine! It's a lot more common than people think. Reply I know I'm commenting on this waaaaaay late, but I had torticollis as a child, so it was very interesting for me to read your experience with your daughter. I had surgery on my neck as an infant and, unfortunately, still have some residual problems with my neck, but nothing too damaging. And I agree, the helmet is adorable (and so is your little girl)! Reply Hi, I just wanted to say that even a year after you posted it this article is awesome. My little guy was just diagnosed with Torticollis and Plagiocephaly (at 9 months). I remembered seeing this post and went back through the archives to find it. It was exactly what I needed to read. p.s. your baby is adorable. Reply Join the conversation Cancel Reply Your email address will not be published. Required fields are marked *Comment Save my name, email, and website in this browser for the next time I comment. Notify me of follow-up comments by email. 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