The Best Christmas Card

Yes, I know it is January, but I need to back up a bit. I need to point out something to you, and also to myself.

Dylan was born in November of 2006. Jim and I really wanted to get a gorgeous picture of him to send out for our Christmas cards, since there was no time for birth announcements. To say it was tough would be a huge understatement. Here are a few examples of the pictures that didn't become the card...



That first picture pretty much sums up the first four months of Dylan's colic- filled life for me... a big screaming blur.
This one didn't make the card either, but look at it...

See how far his little head is tilted to the left? At that point, we had never heard of the word "torticollis", and we had no idea what was in store for us and Dylan. When I look at pictures like these...




...I get sad, thinking of the painful stretches this little boy had to endure, the endless specialist appointments, the uncomfortable helmet that he had to wear. Then, I get mad. Mad that his pediatrician ignored my questions about his head tilting for so long. Mad that I didn't force the issue sooner. Mad that it took so long for us to start doing all the things that would help him.

This is the picture I chose for this year's Christmas card...

Many, many people, including some of you, thanked me for the picture, or commented on how cute it was. Yes, it is cute, and yes, he does have a great smile, but no one realized the significance of the card. Even I didn't, until Jim pointed it out to me. His head is tilted to the right. Not because his physical therapist, or his mommy or his daddy are forcing his head into that position. He is tilting his head to the right, because HE CAN. And that, is the best Christmas present I got in 2009.

Dear Doctor

Dear Doctor,

My son, Dylan, was a patient of yours from birth until he was about 4 months old. At one of his first appointments, I mentioned to you that his head was always tilted to the left. You told me not to worry.

At each appointment after that, when I brought it up, you didn't act concerned. You acted as if I was an overprotective, paranoid mother, who was making something out of nothing, and for a while, I listened to you. I figured that you were the professional. You surely knew what you were talking about. I was a new mom, uncertain of my abilities and untrusting of my instincts.

But, when he didn't "grow out of it" by 4 months, I became relentless in my questions. You finally gave me the number of a specialist, and told me to have him seen there to "ease my mind". When I did, I was told that his neck muscles on one side were weaker than on the other side, and that I should immediately set up physical therapy sessions. I was handed a piece of paper with the word "torticollis" written on it, before the doctor walked out, leaving me bewildered and frightened.

I had no idea what "torticollis" meant. I looked it up online and found this definition...
" A congenital condition in which there is a shortening of the sternocleidomastoid muscle of the neck. This results in limited neck range of motion. As a result, the child holds the head to one side with the chin pointing towards the opposite side. Often a firm mass can be palpated in the midportion of the sternocleidomastoid muscle. If untreated, there can be permanent limitation of neck movement."
So, that's what it means, but let me tell you what it means for the parents. Let me tell you what it meant for me...

It meant numerous phone calls and forms, trying to set up physical therapy. It meant once a week sessions, learning the correct ways to stretch his neck. It meant forcing myself to stretch him 3 times a day at home, even though we both hated it. It meant trying head positioners and forcing tummy time, and always being conscious of how I held him, laid him down, fed him, etc. It meant hearing horror stories about what might lie ahead. It meant nights lying awake, worrying I wasn't doing enough. It meant appointment after appointment, and finally deciding to get him a helmet, to try and correct his head shape. It meant dealing with the stares, the looks of pity, and the questions of strangers when we took him anywhere. It meant taking him twice monthly for helmet adjustments for the 6 months that he wore it. It meant crying in my car after therapy, when I was told he wasn't making enough progress. It meant more phone calls and forms to find a different therapist with a fresh perspective and new ideas. It meant welcoming someone into my home twice a week to sit by helplessly as my child screamed while being stretched. It meant feeling helpless, out of control, and guilty.

Dylan is 2 years and 4 months now, and he is doing great. He is basically done with therapy, but the therapist comes 4 times a year to make sure he's still on track. He has amazed me throughout the whole process. It was harder on me than it was on him. I am proud of him, and I am proud of myself for learning to trust my mommy instincts. You taught me that.

I want you to know, I am not writing this letter to make you feel bad, and I am not hoping for an apology. I am writing this because maybe the next time a mother expresses a concern about her child to you, you will think of this letter, and you will listen with an open mind and an open heart. I really hope so.

Sincerely,
A Mom Who Survived Torticollis











(*If you are wondering, yes, I am sending this).

My Family Brags

I never got to meet my dad's mother, but my dad has told me that she liked to brag about him...a lot. He said she would embarass him, by often doing it right in front of him.

My mom's mother - well, I don't know how often she bragged about her kids, but I do know that she loved to brag about me. I know this because, most of the time, I was standing right there! There was the time that I stayed over night, and I was sprawled out on the couch watching television, (I was 10, maybe?), when she suddenly entered the room with the paperboy, saying, "Here's my darling granddaughter. Isn't she beautiful? You two chat while I go get your money".

Then, there was the time that our whole family ate at a fancy restaurant, celebrating someone's birthday, and she invited the good looking valet guy to come back to her house, and have cake with us. She enticed him with, "This is my gorgeous granddaughter. She's smart, too". I think she was giving him the rest of my credentials as I yanked her into the car.

Yes, I come from a long line of braggers. But, I am a humble person, and I was sure that I wouldn't become one...until now.

After "trying" to get pregnant for two long years, I was losing hope. We were saving up for adoption when I finally saw that glorious plus sign! After the first four long, colic filled months, we learned that Dylan had torticollis. The weekly therapy sessions, specialist appointments, and 3 times daily stretches wore me out. I just wanted to enjoy him, and all the "normal" things about having a baby.

At nine months of age, he began wearing a helmet, to help his head develop into more of a round shape. For many months, I added the helmet fittings to all the other appointments. Everywhere we went, I had to deal with the stares, the questions, the looks of pity. Dylan didn't mind the helmet at all. I was the one that needed to adjust. When the helmet finally came off, I could run my fingers through his silky hair, and put his cheek next to mine, without feeling the cold plastic between us. Dylan could finally be the focus, instead of the helmet.

Now that Dylan is done with therapy, I feel like a weight has been lifted from my shoulders. When I look at old photos, I am amazed and incredibly proud of how far he has come.

Working with other peoples' children, there have been kids I enjoyed being around, and kids that bored me, frustrated me, and basically tried to drive me to insanity. Before having Dylan, I sometimes worried, what if I don't enjoy being around my own child? What if our personalities are too different? What if we just don't connect?

That certainly isn't the case. I adore Dylan. I love spending time with him so much that it is difficult to be away from him. I love his personality - the passion he has for the things he loves, the joy he finds in life, the sweetness that is so much a part of him. How can I NOT brag? It's in my blood. I can't stop...and I'm not sure I want to.

Ding Dong, The Helmet's Off

For those of you new here, Dylan was diagnosed with torticollis on March 14th, 2007, just a little before turning 4 months old. For the first four months of the poor kid's life, he had colic. I'm not sure how I got through that, but I did. So, that was finally over, and then we learned he would need to start physical therapy for the torticollis once a week. That started the therapy sessions, the exercises, the stretches, and the doctor visits. At his 4 month pediatrician visit, we also learned he has eczema, probably inherited from me (sorry Dylan).

On June 15th, at almost 7 months of age, Dylan started wearing a helmet. The torticollis caused him to always lay on his head a certain way, which caused his head to be flat in the back. He was also born with a hematoma, (basically a blood blister on his head), which also affected his head shape. Then we added the visits to the helmet place to have it adjusted, about twice a month.

I'm sure you can guess who the majority of these responsibilities fell on. I'm exhausted by it all. But, not Dylan. He has taken it all in stride, from the very first therapy session, to the very first time we put the helmet on. Honestly, him wearing the helmet couldn't have gone any better. I'm the one who has been annoyed by the darn thing. I was so sick of the questions, the stares, the looks of pity, every stinkin' place I took him. I was sick of the 45 minute drive to the place to get the adjustments, where I would try to keep Dylan entertained and still when he needed to be, usually for an hour each time!

I will say this. It was a love/hate relationship I had with that helmet. Every time my crazy, fearless kid would dive head first off the couch, I would sing its praises. When he was just learning to walk, and was extremely unsteady on his feet, I hugged it, and kissed it, and called it George.

2 days of wearing the helmet..


During the under, over, and everywhere in between stage I loved that helmet...


When cruising, it's always safer to wear a helmet...


The poor kid had to be put in here 4 times for scans of his head - can you say "claustrophobia"?


Preparation for the final scan...


For 6 months, two weeks, and 2 days I waited, and on Dec. 31st, the last day of 2007, the day was finally here! Look out world, because here comes Dylan with his (mostly) round head! I'm so proud of you, Dylan! (When the therapy sessions are over, I'm probably throwing you the party of all parties).