Soccer Practice

Last night Madison attended soccer practice for the first time. There was a time I didn't believe she would ever be involved in sports.

When Madison was born our doctor told us she had 'turned in' feet and we needed to see a specialist about them. The word 'Club Foot' was never mentioned as an option, we referred to her feet as 'turned in' and I think we did that because the term 'Club Foot' brings to mind some fairly horrible images of feet which looked like clubs. I tried to find some images of what I imagined Club Foot looking like at the time, but when I'm honest with myself, most of the images look kind of like what Madison's feet looked like when she was born. They were twisted, and looked like she would walk on her ankles rather than her feet. I look at the images of Club Foot and they make me wince but I suppose I'm a mother because my daughter's twisted feet never made me wince.

We saw the pediatric orthopedist, a man with the bedside manner of a caveman. His idea of 'interaction' with his small patients involved clucking at them and maybe using an index finger to poke at them. Thankfully Madison was too young to be cynical about the man clucking at her in an attempt to make a connection because she was by far the doctor's "best patient". We went once a week for six months to see the doctor who put casts on our babies legs at each visit. She laid on the table while the doctor stretched her foot into the correct position and the nurse wrapped fiberglass casts around her feet.

The best part about the casts were the questions from strangers, "Oh dear, what happened?" I would answer, "Oh, skiing accident." Or "Hockey!" Or "Well I accidentally broke her legs, you know how kids are!"

The castings lasted until she had a surgery at six months old and after that she wore special shoes with a brace at night. Her feet after all that, were perfect. Although, she has her father's hammer toes. Poor, poor thing.

A couple of years later we started preschool and it was the first time I'd seen Madison around a large group of kids her age. I'd noticed how Maddie climbed the stairs differently than her playdates did and that she was less physically active, but chalked it up to differences in each kid's development. The very first day all the children were running around the lawn of the school after class was over. Watching all the kids jumping and running so much more adeptly than my daughter, I knew something was wrong.

I asked the teachers to watch and a week or so later they told me that yes, she seemed delayed. I took her to physical therapy and at the initial meeting we found out that things were far worse than I'd realized. All these things I'd thought of as my daughter's mannerisms, turned out to be signs of her whole body weakness.

As a baby, a milestone is reached when you pull your baby's arms and his head stays level with his body as he rises to sit, rather than letting his head fall back. Madison had reached that milestone, I was sure of it. But when the therapist pulled her up to sitting she struggled hard to keep her head level with her body, it fell back behind her. When she climbed stairs, she used her arm on her thigh to help lift her body up to the next step, a sign of muscle weakness.

I vividly remember leaving the physical therapy appointment with words like 'severe atrophy' and 'degenerative' and 'Pediatric Neurologist' racing through my head. Max was about six months old at the time and was suffering through one very long ear infection we could not get rid of. On the way home from that physical therapy appointment we had to stop at the pediatricians for more antibiotic shots which hurt my poor boy terribly. Pretty soon, he was screaming in agony, Maddie was crying with fear and I was sobbing in the doctor's office.

We spent the next eight months in physical therapy with Madison and she worked so hard. We saw three pediatric neurologists during that time and each referred us to the next until we finally ended up in the office of a very respected neurologist in our area. By the time we'd found our way to him I'd begun to feel better about Madison's issues. That the physical therapy was working and maybe she was just slow to bloom physically. But the day we saw him more words I didn't want to hear came out. Muscular Dystrophy. Multiple Sclerosis. Mild Cerebral Palsy.

We took her for an MRI to rule out some of those issues and that experience is an entire other post. It was horribly traumatic for Madison and Logan, but it came back clear and we breathed a sigh of relief. Until we went back to the neurologist, who said he still thought something was wrong and we needed to do an EMG. An EMG is a very painful test involving a needle electrode which is inserted into muscle to test muscle function. My friend's 60 year old mother found the test extremely painful, I can't imagine what it would feel like for a three-year-old.

The hardest decision we ever made as parents was to go against this well respected expert and say no to the EMG. I spent many head throbbing days seeking input and information and discussing the issue with Logan but in the end we had to say no for a few reasons. The MRI was psychologically traumatizing for Madison. She'd seen so many doctors that year and had worked so hard in physical therapy, we were reluctant to put her through anymore. When we asked the neurologist what we would do if we found out she did have one of the issues we were ruling out, he said, "Well we'd send her to physical therapy, but for insurance purposes it would be worthwhile to have a diagnosis."

We already had her in physical therapy and she was making improvements. It's hard to face a specialist and tell him you disagree and that you won't do as he's recommending. I didn't feel he was wrong, I felt he was on a search for a problem to diagnose. We had taken action without a diagnosis, if she stopped improving or got worse we would have gone back for the EMG. But still there was a voice in my head saying, 'But he's a nationally renown neurologist.....'

Today she runs a little slower than the other kids. She's been a little slower to catch onto things like skipping and galloping. However, she never gives up anymore, she runs as best she can. We've never mentioned to her gym teacher or her elementary school teachers the delays she had as a preschooler and it's never been an issue anyone's noticed. She's in the range of normal and has been since kindergarten.

It's a relief to see it happen even though we didn't put her through the EMG. It's a relief to see her running around a soccer field like a regular kid. Any lack of coordination can be easily traced directly to my genes and not to her clubfoot or gross motor delays. I can't wait to see her in her first soccer game.

Comments

[emily]

My nephew was born with one club foot.He was in the cast until 1 yr and then surgery.I remember the nast stares my sister recieved about the cast.Strangers wanting to know how she broke his leg.He's fine now and you'd never know it.

[Kim]

That was an extremely sweet post today!

[Chantal]

There will be nothing sweeter than that game. I hope she has a great time and I know you will take lots of photos and share.

Very sweet post. (And I probably would have made the same decision.)

[Lisa V]

Great post.

[Heatherg]

My children dance clogging, and it still blows my heart up and brings tears to my eyes at every performance. I liked your post.

[kathryn]

I am so touched by your post. I'm a little weepy - looking forward to the pictures of her first game.

[carol]

I can't even imagine how awful that all must have been to go through. My son has had health issues that required hospitalization at 3 months. My daughter has asthma and is constantly on medicines. I had some uncertainty and thought I may have MS...it's all terrible to go through.

I'm thrilled for you that Madison is developing normally.

[veg4me]

In case you ever think about correcting those hammer toes of Madison's.

DON'T DO IT.

I just had surgery on one last Friday and it's more painful than the 2 c-sections and broken back I've had.

Trimming arm hair, yes. Cutting toes in half, no.

Hope she rocks that game.

[LynnBelle]

As a recent new reader (stalker - just kidding) I enjoyed this post. You're such an amazing and loving mom. I too have one of each and my eldest started soccer for the first time yesterday - ah, the stress, laughter and nervousness I went through.
Enjoy these days - they'll be running away from us as fast as they can in a few years time.

[alice]

awww - I'm all tingly now! Great post.

[Stephanie]

I was born with club feet as well. Mine were fixed with corrective shoes (the kind with shoes mounted to a metal bar), and while I didn't have muscle problems to the extent that Madison did when I was a child, as an adult I've had some issues emerge related to muscle weakness, but nothing debilitating. Kudos to you for getting Madison help early in life. I hope she has a fabulous time with her soccer team.

[Mindy]

Good Call on the EMG. I had one a year ago and I still don't think I am over it. No one prepared me (and I don't think they could have ever have prepared me for how awful it was....) and the results were inconclusive. My brother had very similar set backs like Madison when he was young and he has more than made up for it.
Soccer is a great sport ...she's going to have a blast!!!

[EverydaySuperGoddess]

Hooray for Madison! That is a real accomplishment!

(And hooray for you, mom, for hanging in there!)

[Mir]

Funny how our kids are perfect just as they are, and what we have to go through, sometimes, to realize it. :)

[Bridget]

We just got the go ahead from the vision specialist that my daughters eyes are working right. After 3 grand and six months of vision therapy. IT IS OVER! she is Fine and catching up to her peers. I feel your relief and joy. It is the hardest thing to see your kid struggle. But I do believe in my heart that my daughter and yours too have learned to fight

Your blog today touched me thank you for sharing.

[stillheidi]

I sure would have to bring a box of kleenex to that game...I am big on the 'so happy, so proud' tears. Good for you on doing what was best for Maddie...Dr.s don't always know best....although I am sure it was a hard decision.

[L]

Just say no to painful medical tests!
I think doctors order them just so you can't come back and sue them later for never recommending the test that *might* have diagnosed the problem. You made the right decision. Good Mom!

[Lil' Sis]

Did I ever tell you that Bonnie & I talked to a psychic about that whole EMG thing? She had a "Spirit Doctor" that went & checked it out & said Maddie would be fine within 4 or 5 years without any procedures. I can't remember exactly. But it's nice to know she was right, even if she promised Bonnie was going to find a man within a year.
And I am still hoping Maddie will give up the sports & get into music. I spent a lot of money on kid-sized instruments, and if I have to buy a drum set for her to get her interested, Damnit, I WILL.
And you'll never speak to me again.
-miao.

[Kari]

I had to wear corrective shoes as a child. But then I became a dancer. I danced competitively performed at the 1988 World Expo in Australia.

Madison will do fine! :)

And I've come to realize that every kid is "different" in some way. My son is on the "autistic spectrum" but I try to avoid labels and hate when our caseworker will look at her DSM and pronounce that he *must* have a particular difficulty just because of his "diagnosis," even if evidence is to the contrary.

Hooray for not doing the EMG. You hit the nail on the head when you said the neurologist was "on a search for a problem to diagnose" Labels, labels, labels. Not worth it!

Enjoy the game (post pictures!)

[joaaanna]

Thanks for sharing that - looking forward to seeing the pictures.

[madge]

Ditto: Good call on the EMG.

My 34-year-old, burly, ironworker husband had one. And, quite unprepared for the pain, punched the neurologist.

They didn't finish the test and we haven't been back. We're not entirely sure it was the first time he'd been clocked since there were no charges brought against my husband. Ha.

[Psycho Kitty]

This post was beautiful. I love that you're a smartass, but anyone who just sees that and has any doubts about you also being a friggin' kickass mom is just blind.

[Liz Cadorette]

You must be so relieved and proud! That's a marvelous story, and I admire you so much for making the decisions for your daughter that you knew to be right for her and for you. I hope we get to see photos of that first game, so we can cry tears of joy and pride along with you!

[Bad Hippie]

Welcome to the soccer mom sisterhood! I'm glad Madison's out on the field and running around. Don't let her take S*!T from the opposing team, OR from her teammates!

[Lena]

What a sweet post. I know you may not have meant it to be "sweet", but you spoke about Madison with such tenderness that it made me cry! Good mommy. I am so happy for Madison that she's in soccer (so is my 4 year old daughter..she hates it). I think running in a straight line will a great precursor to walking it later, what with her Irish heritage. :)

Take care. Post often.

[pinky]

Like Lena said - you write about your kids so tenderly, it bends my bitter little heart to read about them.

I've know many people who had to have casts/braces/what have you on their feet and ankles as little ones, who were well within normal ranges, later. I'm not sure why that is, but my sample size is pretty small, and those with early childhood foot-leg problems is large.

And I am the queen of foot issues myself :-)

[Maggie]

Good for you! I wish more parents would say no to their doctors and go with their gut instincts. Medicine is so highly imprecise and constantly changing; what was considered good treatment 2-3 years ago may be found to be harmful now.

I went against a highly regarded specialist's advice to preform a treacheostomy on my new born daughter. She was born with paralyzed vocal chords and the Dr. felt that she should have the procedure because we lived in a somewhat rural area and if something happened to her it would take a while to get help. However, a treach tube would me 24 hour around the clock nursing/home health care and increase the risk of infection and other probs. I said hell no, I can get her to a hospital very quickly if something happens.

Well, I was right and her vocal cord paralysis went away all on its own at 6 weeks. Somedays i wish it were still there:)

[julia]

You are such a good mom.

We've had similar issues with our son (not the feet, but the hypotonia), had the MRI, but it hasn't gone further. I'm with you, I wouldn't have done the second test. And at (our) Max's 18 mo. appt, the doctor told me that he would probably have trouble learning to ride a bike in the future. WTF? The whole sordid story is here http://tickytacky.typepad.com/tickytacky/2005/06/physician_fuck_.html

Hurray for Madison playing soccer.

[Ani]

That was a lovely post. You're a great mom.

[late edition]

great post ... i have a friend with a 3-year-old son who is verbally delayed ... he has come on in leaps and bounds in the last three months since he went into kindergarten ... but last week he had some comprehension tests given by a speech therapist and failed miserably ... so disheartening ... but i'll better dollars to doughnuts in a couple of years his "problems" will be barely recognisable

[SAJ]

Yay Madison!

[Penny Pressed]

My younger brother was born with a club foot, and my parents went through the same bouts with the cast and so forth. One day in line at the grocery store, an older woman behind my mother took one look at my brother's tiny cast and began shaking her head and clucking with disapproval. My mom turned around, looked the old bitch in the eye, and shrugged: "I sat on him."

And, really, show me something better than that first soccer game--I have yet to find it. You'd better get your camera ready.

[MsShadow]

What a wonderful post. Altho it confused me a little, since I've had an EMG, and it didn't hurt a bit. I actually clinked on your link to make sure I wasn't mixing up my tests. Then to read the comments on how some have had an EMG, and it hurt!... well, it just brought it on home how I really do have MS, and have lost more sensation then I realize. Dammit.

[Jessie]

Good for Madison! What a little trooper. Glad to hear she's doing well, and even if she is a little un-coordinated, there's lots of us out there. Like me. Who broke her foot while walking. WALKING! It can happen to the best of us I guess.

[Sirron]

I'm a semi-retired Mom, waiting patiently to become a grandma (checking her watch, tapping her toe....my daughter has been married for 3 years, now....and never for a moment would I think of putting any pressure on them, cause I had pressure put on me to produce, from the ol in-laws)If you were MY daughter, I'd be damn proud of you, questioning....challenging...and questioning.

I've been lurking for awhile and totally enjoy reading your blog.

[cursingmama]

What a wonderful post Melissa. I can't imagine how difficult it must've been for you, Logan and Madison. Can't wait to hear about her first game.

[erika]

Yay for Madison! And lucky her to have such loving parents.

[styro]

I saw a lot of neurologists as a kid, too, and bravo for you for saying "enough is enough." My parents didn't get there until one of the doctors wanted to cut through the muscle that held my eyelid in place, which would've effectively blinded me in my left eye and left me permanently disfigured.

And i want to stand up and cheer for madison. She is awesome and I am awed by her strength and determination and steadfastness. HOORAY!

PS i am weeping. *sniff*

[GG]

I've had much less serious issues with both my boys and didn't handle it as well...doctors (and specialists) are scary, in that,they can talk you into anything. Good for you and your gut!

[merseydotes]

That was a really touching post, Melissa. My DD is 22 months old, and she's only been in the hospital once - for dehydration. Watching her lying motionless in a tiny paper gown with her hand taped to a splint for the IV was one of the most awful experiences I've had as a mother. I can't imagine what you went through with the MRI and then weighing the EMG. I'm so glad that Maddie is catching up to the other kids, and I'm sure she'll be a soccer star in no time. 8-)

[edithmae]

Thank you. My 18-month-old son has some serious physical problems (he's in PT, too), and next week we meet with four surgeons to discuss possible tests and surgeries. Just last night, I was thinking to myself that I needed to be prepared to tell these "brilliant" doctors "No" if I didn't feel it was right in my gut. I know that for us, surgery will be necessary for some of his problems, but I'm not convinced that we'll need to do all that is presented to us. He's been through so much in the last year and a half already.

Thank you for your story, for reaching out and telling us that it doesn't have to be that way. That I have a voice in this process, too. That my son's emotional needs matter too. Thank you for your courage. I'll be thinking of you next week when we see our doctors and wonder WWMD?

Also, YAY MADISON!

[elisabeth]

awww. sniff. That was lovely. I can't imagine living through those years. I guess my mantra here is becoming "parenting is really hard, isn't it?

[Tammy/averagemom]

You're a soccer mom! That was a wonderful post. Madison sounds like a terrific kid!

[Flippy]

I would suggest that you immediately get photo releases from Maddie's teammates' parents. I fear the return of the faceless children at play. Okay, not really, I loved the faceless children. And even moreso, when they cuss.

[Elaine]

Good for you for saying NO. Pediatric Orthopedists are the devil...my stepson visited THREE of them because of turned out kness. The first one said knee surgery, second said HIP surgery (on 11 year old) and the third said, "ehh, nothing wrong."

[Jackie Joy]

Posts like these are why I check your blog every day for updates. :-)

[Suebob]

I'm not even a mom and your post brought tears to my eyes. That parenthood takes some bravery, that's for sure.

Even if Madison never runs as fast or jumps as high, she will find her own unique way of getting through the world and her own talents and abilities.

[Laurie]

Listening to your mother's (or father's) instinct is sometimes very hard to do. I've turned down a treatment for my son before, because I didn't believe it would do anything for him. Telling an expert "No" is rough, isn't it?

Such a beautiful post.

[Marie]

Yep. Isn't is great how much children show their parents how to become better human beings? Great post, Melissa. I hope Madison has a great time.

[Lily]

Good for you for listening and trusting yourself in regards to a EMG for Madison. (I had a EMG (at 27) and it was some of the worst pain I ever experienced in my life).

Go Madison! What a star!

[Julie]

I'm thrilled for all four of you. How wonderful to see Madison persevere and succeed.

[Amanda]

Crap....having EMG tomorrow...not one mention of pain from my doc. I suddenly don't feel so good.

My brother was born with club feet and was in casts for about 2 years and had several surgeries. I still have images of him crawling across the floor dragging his casts behind him and throwing tantrums by banging his casts on the floor.

Sounds like Madison is doing great! What joy it must be to watch her play.

[maia]

You both did good, damned good!

[Lin]

Beautiful post about a beautiful little girl.

[baseballmom]

What a fabulous post...I can totally relate. My oldest was delayed in small motor areas, mainly handwriting, and I was told that he kept "spacing off" in class. He was diagnosed with petit mal seizures soon after. It felt so good to know that he wasn't just daydreaming! He had EEGs and many other tests. Our neurologist is awesome and I trust her completely, but NEVER be afraid to question, and say NO to procedures. You are Madison's biggest advocate and can speak up for her when she can't. Hooray for you both! Tyler's first soccer season was spent picking dandelions, finding feathers, and watching birds but I wouldn't trade it for anything. He is now on great medication to stop his seizures and is doing great at hardball...go figure!

[margalit]

My daughter turned 13 yesterday and she was born severely hypertonic. We got the CP/spastic quadraplegia diagnosis at 4 months old. We did 3 full years of PT thru early intervention. Not only does my kid run, walk, skip, hop, jump etc. she also does yoga, gymnastics, ropes courses, and TRAPEZE!!! That high muscle tone does have it's advantages. She was diagnosed by the head of pediatric neurology at Childrens in Boston. He's a Harvard neurology god. And he was wrong. So good for you for sticking to your convictions and doing what is best for Madison.

[Susan]

I enjoy keeping up with your blog but I was especially glad I read today's post. We're going through much the same thing with our 4 yr old son. He doesn't have club feet but his legs are turned out slightly at the hip which gives him a funny walk. He also has muscle weakness. We went through neurology and genetics around age 1 when he was so late on the movement milestones (didn't crawl until he was 13 months, etc)and at that time he was diagnosed with slow development. We're going back through all this again at the urging of our pediatrician and now there's talk of an EMG and maybe a muscle biopsy. So far, everything has been normal (blood tests, spinal MRI)and he's now riding a bike and doing much better on the practice stairs that my father built him. We've even got him in gymnastics now. He's slowly but surely making progress and I'm thinking maybe it's time for us to just say "Ok, that's it". Thanks so much for sharing!

[M. Woodland]

sweet post, good mama instincts.

[marian]

bravo--it takes so much courage to say no to doctors, but sometimes enough is enough. what a great post. all kids are different and they all develop in their own ways. at some point a mother has to be able to say "okay, we'll take it from here" without being made to feel like she's committing criminal abuse by saying no to somebody who just wants to use the technology their hospital paid a million bucks for. you're an inspiration and so is Madison!

[Jen the Mom]

That's a beautiful post and I loved reading about your daughter having worked so hard and been through so much and doing so well now. Thank you for sharing that.

[christy]

If you ever feel a lack of self-confidence in dealing with whatever life throws your way, all you have to do is think about how you managed to ge tthrough that without bashing your head into a brick wall. I don't know if I could have come through it like you did.

[Monica]

I hope we get to see lots of pictures from Madison's first soccer game -- I'm so happy everything worked out well.

[mamaloo]

Dammit Melissa! Now you've got me crying!

[Monica]

Beautiful! Well written and just lovely. Yay Madison!

[Jennifer]

Thank you for sharing your experience. We are in the middle of preschool with lots of therapy and battling a gross motor skill delay over here. I've had my doubts as to whether or not my daughter will be attending soccer practicein the future, but this entry gives me so much hope!!!

[Nancy]

When I first read this, I couldn't reply, it moved me so. Sweet, sweet little Madison, yay for her! You are a wonderful mom.

[Uma Andersson]

OK, well there are tears streaming down my face right now, some of sadness and commiseration, some of pride that you have such grace in the way you seem to be able to share this, retell it, such courage in the face of these challenges that make us question ourselves to the very core of who we are. We too have had our share of setbacks, starting from the very first moment, at 13 years old, that a doctor told me I would never have children and at 16 when I had to tell my boyfriend (now husband) that I was pregnant. Well, I'm six children later, and one gone from Juvenille Diabetes at six years old, five healthy ones left. Each like a pea in their way, different, with their own sets of challenges and their own ways of growing, not like the next, not the like the last.

So...Brave Mama, I salute thee!

[a]

I heart you. Today more than I did when we met :)

[Jigger]

I loved this post. It took me right back to some problems my daughter had when she was younger. There's nothing worse than feeling helpless in the face of medical problems. Kudos to you for standing up to that feeling and making the right decision for you and your child.

[angel]

I’m so pleased for you all. It’s so hard to go through all the medical tests and specialists and stuff.

[Psychic]

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