Author Archives: firebailey

About firebailey

I possess many titles: wife, mom, advocate, runner, Bruins fan, lover chocolate and Parrot Head. I believe you can conquer any challenge in this world with family, good friends and wine. I write about most of that and more while keeping my sense of humor in this life I never expected.

My Challenge: Bron

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My friend Bron is sharing her Challenge today. Bron is a fantastic blogging friend. She writes about her families travel adventures. Let me say that I am in awe of her courage and sense of adventure!

When Kerri mentioned the challenge series to me a million little words came to mind.

Disability, parenting, cerebral palsy, lifting, access, advocating, parking, therapists, school…..then typical stuff like toddler tantrums, watching Dora a million times and homework! Oh and listening to Mine craft walk throughs via Coopers ipad.

Then I started thinking about daily challenges like getting out of bed and making school lunches. One word kept resurfacing and it was balance, I feel as though I am constantly trying to balance everything with my head just above water.

But I wanted to put a positive spin on challenge and look at it as something that is challenging but something we tackle head on.

So I am going to talk about travel. Travel with three kids, one of whom has cerebral palsy and uses a wheelchair.

It’s a fun challenge most of the time!

We love to travel as a family and have been on many adventures. Our favourite destination is South East Asia being only 8/10 hours from Australia. We are currently in Europe for six weeks. We have been on 2 planes, 7 trains, 2 boats, 4 taxis, 1 gondola and 1 cable car. We have stayed in six different apartments and heard 5 different languages. We have eaten French pastries, German sausages and so much pizza and gelato.

Our kids are 9,6,2.

In London

Access using a wheelchair has been really tricky. At one stage I lifted Cooper and his wheelchair off a train by myself while Andrew tackled the bag and sleeping toddler. The many bridges of Venice in Italy are full of steps and so many toilets seem to be below shop fronts. The roads are full of cobblestones and buildings are historic and not accessible.

However…..

On his Dads shoulders Cooper hiked along a mountain path 2200m in the Alps of Bavaria. He climbed a castle built in 1345 on his Dads back. He got a lift up the Eiffel Tower and rode a gondola on a Venice canal.

Best view, from Dad’s shoulders

We do it because we can and because we want to show Cooper he can do anything. We also want to show the world he can do anything. We want to make disability more visible and we want people we meet to remember that family on the train who didn’t let using a wheelchair stop them from discovering the world.

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Isn’t this family amazing? I get anxiety taking Boo to the Zoo and they travel all over the world with their three children, one who has wheels. Her blog is amazing, for the pictures, the travel tips and the honesty of traveling with a child who has a disability. That yes Cerebral Palsy makes adds a few obstacles to getting on the train, but it doesn’t stop him from seeing the world. Or surfing it. At 9, Cooper has visited more countries than most adults I know.

Bron & her family are currently recovering from jet lag induced by their six-week holiday. Traveling from Australia to London with so many stops in between. With ONE bag. That is six weeks and one bag for five people. And they are still talking to one another! Check out their adventures at 3 kids, 2 parents, 1 backpack & 1 wheelchair.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

The most amazing thing my body has done is….

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When you think about your body, I bet you see the flaws. Okay I see the flaws (of my body, not yours). I avoid the mirror after a shower better than a deer avoids hunting season. I would rather talk or write about anything other than my body.

So with the first Finish that Sentence in over a month I almost skipped. I truly could not think of one amazing thing my body has done. Let alone the most amazing thing my body has done.

I know, you are thinking: CHILD BIRTH. But well, I didn’t do that too well. Pregnancy, sure. That was easy. Heck it wasn’t until month 7 with Abby that I even thought of maternity clothes (don’t hate me). Yet, I don’t really think that is the most amazing thing my body has done. Every mother, after all, has done it.

So to be amazing, it has to be unique. Right?

I was stumped. Truly stumped by this week’s prompt. What is the most amazing thing my body has done?

Crickets.

How’s that for self-confidence?

Then I realized it was simple, really. The most amazing thing my body has done is provide whatever Boo needs. I have held Boo down (physically) during a truly invasive, painful procedure yet she willingly runs into my arms. I have comforted Boo during moments of epic meltdowns and moments of a Hallmark-commercial sweetness.

This body is the one Boo clings to more than any other. This body, my body, is the one most likely to soothe, to make secure, to always be there when needed. At 3 in the morning or at 3 in the afternoon.

It amazes me, with every test I have held her down through, she prefers my body over all others.

My cheek is the one that rests against hers for a kiss.

My ear lobe is the one she rubs for sensory comfort.

My mouth the one that advocates for her.

My shoulder is where she rests her head when tired, when sad, when happy and when content.

My lap is the most comfortable seat in any restaurant.

My hips are the one she rests her head against as I do dishes, just wanting to be close to my side.

My legs are the ones carry her when she wants to walk but is too tired.

My hand is the one that held as she slides down the ‘big’ slide.

My arms are the ones that picks her up when she falls and lets her go when she flies.

The most amazing thing my body has done is something not for me, but for my beautiful Boo.

Throw back Thursday–a year ago

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

TBT, blog style

(Originally posted 10-AUG-2012)

A year ago today Boo had surgery to release a tethered spinal cord. I will never forget how this one thing devastated me. All her other health crisises were just that, a crisis. I had to keep calm, carry on and be the rock for not only Boo but for every other family member too.

But this, it just took the rug out from underneath me. I am still not sure why. I remember when GI (of all specialities) wanted to do the MRI of the spine to see if, by slim chance, Boo had a tethered cord. Her doc had recently been to a conference where they found that children who have extreme bowel issues ended up having an undiagnosed tethering. For some reason (medical, beyond me) the nerve endings interfered with the bowels.

Since Boo had to be sedated anyway, I e-mailed all the docs and asked if anyone else wanted something done to schedule it for the same day. Neurology decided to rescan her brain to see if there was any change to the corpus callosum (the white matter in between your gray matter, Boo’s was too thin).

Since we were told that the corpus callosum could not ‘grow back’ I expected to hear that Boo’s brain still showed evidence of a lack of CC. I figured the spine MRI would be fine.

I couldn’t have been more unprepared.

The brain MRI showed that the corpus callosum had completely grown in. That it was, for lack of better terminology, perfect. BUT the spine MRI showed a tethered chord and she would need surgery.

Here was the kicker, unlike all the other crisises, the decision for surgery was up to me. Not the neurosurgeon (whom I despised) that went to an actual medical school, but me. The mom. The one without a medical degree. Sure it was up to husband, too. But let’s face it, this was a decision that I had to make.

We were told that the tethering was “POSSIBLY” affecting her bowels but they didn’t know for sure. What they did know was between now and when she was in her late teens she would most “PROBABLY” need to have the surgery. It was up to me to decide when and if. That the surgery was “no big deal” he did it all the time. (yup, I still dislike him) I replied that he didn’t operate on MY daughter’s spine every day of the week and this was major surgery for her, if not for him.

Hello, can I say again that I do not have a medical degree?

Since I (inappropriately) despised the neurosurgeon we met, I got a second opinion at another hospital. Where, I basically got the same diagnosis. However Doctor #2 felt that the tethering was more severe than what doctor #1 thought. She said that if it was her daughter she would do the surgery sooner rather than later. She went in to all the risks associated with waiting. She emphasized with how hard the decision was to make. I loved her.

But off we went to our local Pedi for his opinion. He told us that when the number one doc in the country tells you your daughter needs surgery you don’t go against his recommendation. And as much as I loved doctor #2, our pedi (correctly) felt that since Boo’s 13 other doctors were at hospital #1 we should stick with doctor #1. Because in the case of Boo, if something can go wrong it will.

I went home and broke. Literally fell to the floor and broke.

That was when I learned how strong and how much I depend on my BFF, Tia. She let me break and was strong enough to carry me through the hardest (at the time) decision. It was then that I realized that without my ‘village’ life with Boo is impossible.

I decided to do the surgery sooner rather than later. I felt that the pain would be more easily managed, that because she would have to stay flat in bed it would be easier to do at 2.9 than 18 years. That if something went wrong, I would rather have her not know. My rationale was Boo had just started walking independently that week. If she was unable to go back to walking afterwards, in my mind, it would be better not to have walked. I was probably wrong in all of these thoughts. But they were mine, honest and true.

So a year ago, on August 10th Boo had spinal surgery.

She made a speedy recovery. On day 2 of laying flat, the minute she was allowed to sit up, she did. And promptly tried to break out of the crib. She loved the Princess Carriage (I put in a lot of miles walking the halls).

So, Doctor #1 was right. The surgery went fine. He was wrong about some things. Turns out that Doctor #2 was right, the tethering was much more severe than he thought. The surgery lasted much longer and was not as “quick and easy” as he thought it would be.

The nurses at Children’s Hospital Boston are simply the best. Not only did they not let doctor #1 discharge her when he wanted at post-op day 2. They went over his head to keep her to post-op day 3 as per protocol and she was beyond constipated. They were loving, supportive and thought of everything. Even her bandage!

The surgery also did NOT fix her bowel issues. Although she did grow an inch, so while she is still “short” she is growing. Hey, I take my side benefits where I can. I still cannot stand him, but my daughter can still walk so it’s all good.

The surgery went so well, in fact, that as soon as we got home Boo was climbing on top of my kitchen table. The next week she fell down the stairs and gave herself a nice concussion. But the spine was fine.

And so was Boo. We survived not only the surgery but the experience. I will never forget how happy I was to be discharged from the hospital. I will never forget how when I needed strength Tia was there.

I will never forget that it okay to break once in a while. As long as I have Tia.

Sorry I don’t have a process.

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My first ever for-real blogging friend Kristi recently tagged me in a post for me to explain my writing process. I thought it was cool she thought I had one. Kristi is not even in the same stratosphere that I am in when it comes to the blogging world. But she pretends even though she started blogging three months after me and then became wicked famous we are on the same planet.

Kristi is the mom of Tucker, a quirky artist, the founder of Our Land (which I get credit for telling her to go for it) and the person most likely to be sitting next to you in jail after a Billy Idol concert.

Okay here are the questions I am supposed to answer.

1. What am I working on? Well I was working on trying to do the Twisted Mix Tapes correctly for my friend Jen Kehl. But then she got retired the series. I hope it wasn’t my fault. It was either that I messed them up for finally got them right. Either way I have some Catholic Guilt going on about the end of the series.

Seriously though, I am working on making the What’s Your Challenge series a phenomenon online and in real life. I love that people are being so open with how we are all so freaking similar in our struggles. That all of us have a challenge (or two). But that our Challenge doesn’t define who we are deep inside. I hope it makes someone stop for just a moment and instead of assuming or judging they stop and say, “how can I help”.

2. How does my work differ from others of it’s genre? Truthfully it doesn’t. I think all bloggers share a commonality. We blog about families, for example. Even blogs dedicated to special needs have a common focus. For my blog I think it is a mix. I try to educate via the Challenge. I try to show that there is both heartbreak and joy in parenting Boo. I didn’t start my blog to share about Abby. But she is just too hysterical not to share. I also try to show that you can survive anything with a little bit of humor.

Most importantly I try to use my blog to show that you are never alone. You just have to find your village. Through this process my village has grown to be a small town of support.

So I think my work differs because it isn’t about one thing. My blog doesn’t fit a niche. Instead I just share the everyday moments that make up our life with Boo.

3. Why do I write what I do? I can’t help myself. That is the honest answer. David always says I have no filter. That carries over to my writing. I feel like I have to write. To show people that Boo is not just a child with special needs. That Abby is not just the perfect big sister but that she also comes by her sense of being sarcasm naturally.

But more, that it is okay to break now and again. That it is okay to say this sucks sometimes. That when your child goes five years without a diagnosis and then some doctor says they think she is autistic it is okay to flounder. I believe so many warrior moms think they always have to be strong. I write to show them yes be strong, but also break and lean on others.

I also write because David and the girls give me so much material. I mean really, how many moms can write about the time their husband who swore the math problem was a trick question?

4. How does your writing process work? Okay, still cracking up that Kristi thinks I have a process.

I seriously do not have one. There are just moments that resonate that I have to share. If the post is controversial I will usually send it to Kristi with a “should I” or “would you” hit publish? If it is a post I think will make my mom cry I send it to Tia first with the same question.

I do not do a lot of editing. What you read is exactly how a conversation would go if we met in public. I want my blog to be authentic. To be me. If you saw me in the supermarket we could begin a conversation without awkwardness. There are some posts that I write in my head first. Then I get in front of the keyboard and BAM. It’s either great or not.

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And now it is time for me to give a shout out and tag my fellow bloggers to ask them about their process. I’m totally cheating and stealing Kristi’s questions.

First up is my friend K from Transcending CP. K is beyond awesome. She is one of the reasons I started the Challenge program at Abby’s school. K is a college student who enjoys fried clams and making my heart grow ten times to big by reading her blog. If you ever feel that life might be unfair but it something worth living this is the one blog you should read.

Next up is Kate from Another Clean Slate. One day I asked Kate to run a Mullet race. She ran but refused the mullet. Funny thing is she still talks to me! Kate is like me. Kind of an open book, which we both love to read. She is a super cool urban professional and writes about everything life is: wine, books, food and fun.

Last up at bat because they are hitting a home run is my boyo Isaiah at Isaiah Dot Com only because I have to know how he comes up with the way that makes his mom reply there is no maggot season. I cannot wait to see how he replies to some of the questions. He can think of it as summer homeschooling for kids of bloggers.

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And that is is. That is my writing process which means there isn’t one. With a few tags in the mix to keep the game going. Thanks, Kristi for being my go-to girl.

My Challenge: Janine

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My Challenge: Trying to do it all during summer vacation

Sometimes in the blogosphere, you get to know other bloggers and mothers through their compassionate and inspirational writing.

This happened to me, when I got the chance last year to check out Kerri’s blog. I was hooked from the first post, I met and try my best to read and keep up with each of her blog posts about her life with both of her daughters.

As a fellow mom to girls, many times I can relate on some level or another. Other times, Kerri leaves me feeling truly humbled by all she has been through with being the mom to her extraordinary daughter, Bridget (Boo) and how far she has gotten Boo to come in her short life so far. I have no doubt Kerri will keep on pushing the limits to help Boo overcome her undiagnosed diagnosis to become the absolute best Boo that she can possibly be.

For that alone, I feel like a bit of a fraud to complain and share my challenge here today, because for the most part I consider myself truly lucky to have all I have in my life with my husband, my two girls and a thriving blog and design company, too online.

That’s right I work from home and for the most part it is just crazy here on any given day, but we just took the craziness to a new level by now being on summer vacation. That is right I have two little girls 16 months apart under the age of 5 (my oldest doesn’t turn 5 until July 17th).

Plus, as if that wasn’t enough to keep my days jam packed full, we just got a brand spanking new golden retriever puppy only 2 weeks ago.

To say, my days are insane these past few weeks would be an understatement. Not going to lie and sugarcoat it, I have found myself many days just in over my head. I am just doing all I can to stay afloat.

Somehow, I have gotten to all my recent requests, but will tell you I haven’t sought out any new opportunities, as I am just trying to make sure all I have committed myself to indeed gets done.

Janine with her new pup

So, if I had to name one challenge right now, I would have to respond and say that it is working from home on summer vacation with my two daughters home with a new puppy to train, as well.

Yup, fun times here and definitely not quiet nor easy by any means, but still it is my life and just do the best I can right now.

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Like many moms out there, Janine is trying to do it all. Going from being a teacher to a stay at home mom is challenging enough. But then starting an at-home business? Let alone trying to run your business from your home during summer vacation? And write a daily blog. YIKES. Thank you, Janine for your kind words and for letting other moms out there know we all struggle with trying to do it all. You can read more from Janine at Janine’s Confessions of a Mommyholic and if you need assistance with website design visit her at J9 Designs.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

When did that happen?

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Last weekend I went to a bridal shower. The bride to be is gorgeous, happy and in love. Her groom to be is perfect for her. Together they make the perfect team. Yet as I sat at the shower I realized something.

Something that had nothing to do with love or weddings or the cake.

It occurred to me sitting there that I was not, technically (she might disagree) a “friend of the bride”.

I was a friend of the (gasp) mother of the bride.

When did this happen? When did I become that person, the friend of the parent and not the friend of the bride/groom?

More importantly, when did this little girl I have known since she was in diapers become a woman?

It is true that in a blink of an eye your child goes from crawling to driving the family car. When it is a friend’s child it is even faster. We do not see their milestones, their tantrums, their growth.

You see them around town. You go to their birthday parties and vacation with them. You see them off to college and graduate.

Then you see them meet their love and wonder…

How the hell did time pass so swiftly that I became the friend of the mother of the bride?

TBT–Out of the Mouths of Babes

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Welcome to Throw Back Thursday, blog style.

(Originally posted 18-JUL-2012)

Abby is taking some summer help in math at a local school. This morning when I dropped Abby off she was telling me about the kids in her class. Some were from her current class and others she didn’t know. Abby said that there was only one other girl, a bunch of boys and one weird boy.

Weird boy, I asked, do you mean the boy with Down syndrome?

What’s that? Abby replied.

Well he is special needs, like Boo, I explained

Oh, is that why he has a teacher just for him in the class? (Yup) That makes sense now. I thought there was something different but couldn’t figure it out. Why didn’t they tell me so I could help him?

This conversation floored me on many levels. First, Abby has intuitively known that there is something special about Boo and has accepted her without conditions. I automatically assumed that she would recognize and accept it in another child. Second, Abby attends enough of Boo’s therapy appointments to see other children like this boy. I was completely astounded that she even had to ask, or worse in her mind label this boy as “weird”.

Abby has been a staunch defender of Boo. She would never let one of her friends use that term with her sister, so why did she do it with a boy she just met? Have I failed in some way in to prepare and nurture her to accept all others like she does Boo?

Of course, I asked Abby. Not that specifically, but why she did she not understand that this boy was special. She thought because he was so big and not little like Boo he was just a boy. I asked (just to make sure) that she hadn’t made fun of this boy. She was quick to say no, but that she wished that the teacher had told her because the other boys in the class did. Abby was so cute, telling me that she would make sure it didn’t happen again! We had a long talk about Boo and how would Abby feel if one of her classmates called Boo “weird”.

But it made me think, is inclusion working? Are the teachers and other parents explaining to their children that not all children can run, read, speak like others. Whose responsibility is it really? Mine, in some way because while I can educate/prepare Abby and she can then teach her peers. But neither Abby, her dad or I can go into Boo’s class and wake up the other children/parents. I can only be responsible for the children who interact with Boo in my presence.

Is it the teacher’s responsibility? Certainty, but how can they do this without embarrassing (not the right word, but hopefully you get my point!) the child in question. Abby thought the teacher should have let the kids know. But by privacy laws, they cannot.

I think the biggest obstacle is that the other parents are not on the playground or in the classroom with their children. So they might not even be aware, like me, that their child may be prejudging some one. Think about it, if you do not have a special child would you think to educate your ‘typical’ child about a child with Downs, CP, and autism or like Boo one who is undiagnosed? I will admit that before Boo I cannot honestly say I would have said something to Abby until she asked/made a comment in my presence.

I think as children get older they may become more aware (and yes, mean). But at Abby’s age it is just a sense of innocence where they don’t really notice differences in others until the difference is glaringly obvious.

Boo is in an integrated preschool with a not so equal ratio of special/typical kiddos. Even there I notice that some parents look at us askew when Boo is not participating like their ‘typical’ kid in the class. Once a child asked their mom what was wrong with Boo and the mother, instead of educating, told the child to ‘hush’.

So I don’t know what the answer is, if integration is worth it or how to educate the world at large that Boo just has a different sense of typical.

I am the Dr. Jeckyll and Mrs. Hyde of Parenting

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Unless you are the parent of an only child, most of us will admit to parenting our children differently. You naturally parent a boy-child one way and a girl-child another. You could be the helicopter parent of the first-born (don’t touch the stove!) and the seasoned professional of your youngest (touch the stove, that will teach you).

This weekend I realized that I am the Dr. Jekyll and Mrs. Hyde of Parenting.
It is not that I am taking what I learned with Abby and using (or not using) my infinite knowledge with Boo. Instead I have discovered I am two completely different personalities with each of the girls.

For consideration:

Recently Boo and Abby started swim lessons. When Abby has hers I leave the pool area and (try to) ride the spinning bikes. When Boo is in hers? I hover and sit on the bench with an eagle eye. And she has a 1:1 ratio with the “Y” instructor. Last week when there four children and one instructor I was the captain in charge of leading the other moms to unite and explain that this was not safe or fair. Abby’s lesson? The instructor doesn’t even get in the pool with her.

Abby must finish her dinner. Everything on her plate, no exceptions. Unless it is a new food then she has to at least try it. Boo? If she is tired and fussy she gets cereal for dinner. Even if I have to spoon it into her mouth.

Boo has to shower every morning. Abby? In the winter she might go a day (or ~~two~~ three) without. In my defense, the only way to get a comb in Boo’s hair is when she is in the bathtub.

Boo goes to bed no later than 7pm every night. Abby has been known to stretch her bedtime an hour (or two).

I talk more with the moms of Boo’s classmates. I don’t even know some of Abby’s friends or their parents.

I don’t worry about what Abby eats. She is a grazer like her mom. But she mixes it up. She knows for every piece of crap she has to have a piece of fruit or veggie. Boo would eat from the time her eyes open to the time they close. I monitor her diet and what she eats more than I do my own.

I worry less about Abby. She recently went on a sleepover with a friend to a house I had never been to with a mother I had met once. Boo? She is not allowed to go to pool parties, ice skating parties or anywhere that she might not be safe. Although David did ask the guy who invited her to the skating party if he was on drugs.

Boo makes me cry more. Abby makes me want to pull my hair out in frustration during homework.

I attend every doctor’s visit of Boo’s. I share Abby’s with David. Until this year’s physical when they both refused to go with the other one.

I will stop, sit or dance with Boo. I am more likely to tell Abby to wait until I am done the dishes.

Abby must make her bed every morning, no exception. Boo doesn’t but she has Abby make her bed, too. I tried getting Abby to make mine and failed.

The only time I am a mom of one brain/soul/heart with the girls is in my love for them. I hope it balances out, because there is no way in hell Abby is getting a pony.

How about you are you a Jeckyll and Hyde parent?

My Challenge: K

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Today’s Challenge is from my friend “K” who prefers to remain anonymous. She is a young woman who one day soon will change the world with her writing, her heart, her well just awesomeness. K was a contributor to the Challenge program at Abby’s school. Allowing us to use her essay, The Little Dancer, that had such an impact on the Junior High students.

“K” has Cerebral Palsy. She is one of the reasons the What’s Your Challenge? program at Abby’s school was so important to me. I wanted people to stop looking just at a disability and see the person first. I thought for sure I knew what her challenge would be. Of course, per usual, she surprised the heck out of me.

I sat in the corner of the shoe store and broke.

“I can’t do this anymore.”

I was surrounded by boxes and boxes of shoes, shoes that weren’t made for people like me.

Somewhere in the background, the sales associate was staring at me, and there was an odd expression on her face. Pity? Revulsion? Embarrassment? Or maybe she was just grateful that she wasn’t my mom, who stood over me with an armful of rejected shoes.

It was 5:00 p.m., the evening before I was to give my senior project presentation, a presentation that determined whether or not we would graduate from high school. The rubric for the presentation included a phrase that made my heart sink: “Must wear formal footwear.”

To make matters worse, as I was leaving, my teacher called over his shoulder: “Remember, no boat shoes and no sandals! The guys should wear dress shoes and the ladies should wear something like a nice pair of heels.”

Many girls my age owned a closetful of shoes that fit that description, but I only had two pairs of formal shoes that I could wear safely: a pair of boat shoes and a pair of sandals.

“I can call the school in the morning,” my mom offered, “and ask them not to penalize you for your shoes.”

“I don’t want them to make an exception for me,” I said, my tone desperate.

So my mom took me to the mall for a last-minute shoe-shopping trip, my own personal version of hell. Each store was the same…the sales associates approached us with their fake, overly-cheerful smiles, all too eager to help, and returned with a pair of shoes for me to try on. Then they’d hover over me, watching closely as I tried to cram shoes on my feet, and their chipper smiles would fade into blank stares as they watched me walk.

I had told myself that I would be strong, and I managed to keep it together for four stores in a row. And then, at the fifth store, the associate brought out a pair of heels.

“She . . . those won’t work for her,” my mom said.

Tears sprang to my eyes, and I turned away to hide my face.

“It’s not fair,” I whispered. “I just want to wear pretty shoes like everyone else, and I’m tired of people staring at me like I’m some kind of freak.”

My mom set down the shoeboxes and looked me in the eye.

“Listen to me,” she said, just loud enough for me to hear. “This is your challenge. I know it’s hard, but I’ve seen you overcome so much in your life and I know you can overcome this. Shoes don’t matter. You could wear a pair of sneakers with your dress and you’d still be beautiful.”

With that, she took my hand and turned to the still-gawking sales associate:

“I think we’re all set, thanks.”

The next day, I slipped on my boat shoes and presented my project to the panel of judges: a teacher and three members of the community.

As I presented my project—I had joined an acts-of-kindness group whose mission was to help others with theirchallenges—I spoke of Tanner, a boy with cerebral palsy who was homebound after surgery. His mother didn’t have the financial means to purchase Christmas presents for him and his sisters, so our group banded together to buy them gifts. I bought Tanner’s present—a basket brimming with DVDs and popcorn, because he was a movie buff—and signed an anonymous note explaining that I had CP as well and I understood what he was going through.

When I finished, one of the judges looked at me with tears streaming down her face.

“Thank you,” she said, her voice breaking. “For Tanner. My daughter has CP too.”

Just then, I knew that what my mom had said was true. Shoes don’t matter. Shoes don’t define us.

People do.

****

Alright, who wants to take K shoe shopping with me? As in shop til she cannot shop anymore. And if we cannot find shoes that are beautiful and comfortable we knock on Manalo Blahnik's door and demand he design something immediately. Or some other famous shoe designer's door. I'm sure we can find at least one.

"K" is one of those gorgeous people. Inside and out. She is the reason I wrote the letter for Boo. I am happy to call her friend and hope that my daughter Abby grows up with "K"s character. You can read more of "K"'s writing at her blog, Transcending CP: Shattering the Limits of a Disability.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

TBT–The Perfect Day

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. I hope you enjoy the trip back in time.

(Originally published 24-JUL-2012)

Yesterday I took the day off. Completely off. No work, no housework, nothing but spending the day with Abby.

First we dropped Boo off at her school. Then….

We went to Dunkin Donuts and discovered the joy of the new Oreo donut. We went shopping. When offered the choice between doing our nails or going to a playground she chose the playground. We went to lunch, her choice where she could make our own pizza.

I was told I was the best mom ever (I am writing it down to remember when she is 16). I was told that we ‘have the most fun together’ (I am saving this for the college years).

Then I was told something was missing. I’m biting my tongue to not tell her to be selfish when she says:

The only thing missing was Boo.

So we went to get Boo from school and finished the perfect day.