Category Archives: empathy

My Challenge: K

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

My Challenge: Julie

I would like you to introduce you to my friend Julie. Other than Julie being addicted to scrap-booking and crafts I never notice anything different about her. Julie has the best personality.One of those people you think must be faking it because she is always happy. She has a gorgeous smile, a quick laugh and an awesome sense of humor. 

On top of it all she is beautiful. The kind of beauty that radiates from the inside out. This is why I was beyond surprised at her challenge.


My challenge: Self Esteem

I was born with Dwayne’s Syndrome. Dwayne’s Syndrome is a dead nerve in my right eye which has paralyzed one of the muscles responsible for movement. I have perfect 20/20 vision in both eyes, but I don’t have binocular vision as my right eye has a 5 degree from center inward position.

As a child, I used to be called the cross eye trash can. Kids wouldn’t let me sit with them on the bus. My self-confidence was attacked. But I learned to forgive those kids for what they did to me because I know they were hurting somehow.

I continue to hear the voices of that childhood bully. I don’t see the beauty that others see. My hubby, kiddos and friends tell me all the time how beautiful I am. WHY can’t I see me through his and my kids eyes? !!! It makes me so sad….:(

With that being said don’t feel sorry for me. I don’t. I have a wonderful husband, family and friends. The bullying of the past makes me appreciate their love for me.  I do sometimes wish things could have been different, but then again, maybe I wouldn’t have become the kind, accepting and open-minded person I am today. 

I pray for a day when children are no longer bullied because they are different.

****************
Go back for a moment and look at Julie’s picture. Is her eye the first thing you see? Me, not so much. I see such a happy, beautiful lady. I can hear her laughter. I know Julie, personally. She is quite incredible. Well, once you get past the craft obsession. By the way, Julie…Abby still wants a craft-date. 

To learn more about Julie’s craftiness visit her blog The Cape Cod Scrapper. She will give you great ideas, even if you are as untalented as I am. She is even willing to tutor.

Dwayne’s Syndrome is a rare form of strabismus, or misalignment of the eye. Where most forms of strabismus leave side-to-side eye movements intact, in Duane syndrome the “wiring” of the eye muscles gets jumbled, and movement of eye(s) is limited in certain directions. To learn more about Dwayne’s syndrome please visit The Boston Children’s Hospital information.

What’s your challenge is a series that was inspired by a program I created at Abby’s school. To submit your challenge, please e-mail me at firebailey@gmail.com

Throw back Thursday–On Display

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 posted on 30-JUL-2012)
Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kidswith Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot .  It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.

In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.

Not only did the parents lose any hope of privacy, so did the other children.

It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.

The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.

But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!

When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.

We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.


When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.

I better make sure Boo’s socks match. 

My Challenge: Laura

Today’s challenge comes from a fellow warrior mom: Laura. Her son is gorgeous. Like a mini-Elvis gorgeous. You know before he got old. Laura is an incredible photographer, gorgeous inside and out. Her smile lights up a room. Like many of us, she has a challenge that I am so thankful she is willing to share. 


My Challenge : Undiagnosed Postpartum depression.






My challenge is a common one. One that crops up among new moms
everywhere. But many of us who experience it are completely unprepared. Sure,
we all read the books. We spend months agonizing over what colors we should
paint our nurseries. Should we nurse or bottle-feed? What kind of diapers
should be buy? Moby wrap or Ergo Carrier? There’s a thousand decisions to make
concerning BABY when getting ready to have a child. But a little known thing
happens to us once that baby comes out.. Our hormones go haywire. And
sometimes, they stay that way. It’s shocking and unexpected. I say it’s
unexpected because “THEY” don’t warn us. “THEY” meaning the baby experts. There
is a 500+ page book on all of our bookshelves talking about every detail to
expect when you’re expecting - but the chapter on the postpartum baby blues
isn’t given any real fanfare. And, well, maybe it should.




Like most moms in their last trimester, I was anxious for my baby
to come early. I really wanted to deliver somewhere around the 38 week mark.
That didn’t happen. 41 weeks and then some, I was induced. 24 hours later, we
were talking c-section. So, right from the start nothing was going as planned.
I was fine with that knowing soon I’d have my little boy in my arms. I cried
the next 4 days in the hospital. The nurses assured me it was normal to be a
little ‘weepy’. But I was totally confused.. This was such a joyous event and I
was full of anxiety and was on the verge of a meltdown anytime someone new
walked into my room.. I stuffed it down - not wanting to appear weak. I got
this. I can handle motherhood. Whatever this emotional shit is, it’s gonna have
to take a hike.




We went home.. The crying continued. I looked at my husband
sleeping soundly next to me as I had a 6 day old infant attached to me. I
quietly thought to myself, “What if I just returned him to those nurses... They
know so much more about how to handle this.. We are completely unprepared” and
I cried some more. 




I went to my follow up OB appointment. She asked me how I was
feeling. It was the first time anyone asked me that.. I choked back the hard
lump of tears that was still so readily available and said, “I’m ok. I cry a
little. But I’m ok”.. It was a lie. I was a mess. But I was terrified. The
crazy hormones in me made me believe if I showed her I was weak, she would take
this baby away from me. And I wasn’t very much in love with motherhood yet, but
I didn’t want to be fired from it just yet.




The days turned into a blur. I started to walk outside. I found my
way to a nursing support group and that helped a ton. But every night the
anxiety would return. Was this really for us? Did we make the right decision?
Yes, of course we did. But I would obsess over whether I could do a good-enough
job. All these other mothers around me all seemed to have it soo together. It
just seemed an insurmountable task to be a good mother.. 




Somehow - we made it through the first year. And then another. I
casually accepted my emotional status as just ‘a mom in love with her kid’. It
wasn’t that. I had postpartum depression. Big time. I never was formally
diagnosed because I never admitted it to anyone but myself. 




Being in a baby group has it’s advantages in that you can watch
your child’s development alongside other children their age. For us, this was
another trigger for my depression.. My son was no where near where these other
children were in every area of development. It was no surprise when he was
diagnosed with autism at age 2.5 . But those waves of anxiety were flooding
back. Except this time, my son was really relying on me to keep it together so
we both could get the help we needed. 




In my frenzy of setting up a list of therapy appointments for him,
I found myself a therapist whom I still see today. And a girlfriend introduced
me to the world of essential oils (which I originally passed off as hippie
juice for a while - but I’ve since turned the corner and am now addicted). I
can self-manage the anxiety when it hits hard. My down-swing periods are not
nearly as frequent and I recognize them when they’re coming. 




Postpartum
depression is a very real thing. It’s not a fun part of preparing for a baby,
so, nobody really gives it a good discussion. But it’s worth reading that
chapter in the book. And to be honest with your doctors about how you feel
afterward. I may not have been prepared for what came following my son’s birth,
but I know now that I can overcome some serious stuff. 




And that’s a beautiful realization. 




******************************

Isn't she wicked awesome? For those not from New England there is no higher compliment. I am so happy to know Laura and to have her be open and honest about her challenge. Approximately 15% of women suffer from postpartum depression. That is ONE in every SEVEN women. With that statistic you probably know at least one fellow mom who need your help. I am very grateful Laura found her village. 


I am proud to call her friend, thank you Laura.


For more information about postpartum depression see your doctor as soon as possible. Help is available, even answers if you feel concerned about yourself or your child. There is also an enormous amount of information available online. It is most important to remember: you are not alone, you have done nothing wrong and you should never feel ashamed. Please visit Postpartum Progress for more resources.



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

Actions matter

It happens, a lot. A child will see a person/child different from them and in the loudest outdoor voice possible they will ask:

“Why is that person black”

“Why are those two girls kissing” 

“Where are his legs”

“What is that thing in that boy’s throat”

As parents we think we are doing the right thing by saying “don’t look” or distracting the child. But it’s wrong. When you redirect the child, when you do not answer their questions instead of teaching empathy you are teaching them that there is something wrong with the other person.

You are teaching them that person is not to be looked at, to be approached and most hurtful to be friends with.


A child will befriend anyone. Heck, Abby will befriend a squirrel if they make eye contact. Before Boo I might have been that parent who tried to redirect her attention. My actions could be justified, I might have been hoping to spare the other mother embarrassment.

But why should she be embarrassed by her child? 

Is she not supposed to leave home with her child who happens to be in a wheelchair? Is her child to be locked away like he is something to be ashamed? Should the father of a child who is deaf not use ASL because another person might stare? 

I thought we moved so far from the time when children were put in sanitariums. Instead parents are made to feel they should not go grocery shopping or to dinner with their child not to spare themselves but to spare others. We begin making our home their institution.

I hope you remember my friend Julia from the What’s Your Challenge Series. This past weekend her mom took her grocery shopping. Julia loves being out in the car. She and her mom endured stares while shopping. As Lisa said, “you get used to it”. It was such a beautiful day they decided to stop at Starbucks. A young girl approached Julia, Julia lit up. Her mom, Lisa said hello to the little girl. Then sadly the girl’s caregiver rushed over. Took the girl by the arm and told her to “not to look” at Julia.

Like Julia is a freak and should not be looked upon. That is how I am sure her mom felt. I know it is how I would have felt. Instead of enjoying her coffee in the beautiful day, she took her daughter to the car and cried the whole way home.

In the interest of fairness I want to give the caregiver the benefit of the doubt. Even professionals that work with people who have special needs wonder if they can do it, can they take on this care. I am sure this woman thought she was sparing Lisa and Julia hurt by any questions the younger girl might ask. She might not understand that Julia understood a potential friend was whisked away. That her mom was made to feel unworthy. That her sister, had she been there, would have asked why the caregiver was so rude.

There is the rub. So many of the uninitiated don’t know what to do. Do you let your child approach and ask questions?

Here is the answer: YES! A resounding YES!

Because here is what makes children awesome: the question they ask might not be the one you would. But they open the door for you to approach the parent. We are approached all the time with Boo. Abby tends to take the questions from the kids. I am consistently amazed at how few questions are asked before acceptance is born. (My favorite answer of Abby’s: Her brain just works differently than yours).

Kids just want to ask the questions. It’s the parents who want the details. That is okay too. 

Ask away. Do it with respect but ask. If you are not comfortable asking, how about just saying hello? You will be teaching your child an important lesson. That we are not all the same but it is our differences that make our community. You can teach your child what empathy and acceptance means without ever having to say a word. Or you can teach them the opposite, it’s your choice.

Your actions will show that Julia is not a freak. She is not something to be locked in her parent’s home. Julia is the miracle of her parents.  She is the younger sister of K who adores her. She is her daddy’s princess, her mom’s warrior. She adores her two German Shepherds. She loves swimming, horseback riding and driving in the car. Julia has inspired a runner in the I RUN 4 organization. She is the reason why her runner gets up and runs every morning. 


You should get to know her and others like her if given the chance.  It just might inspire you to teach your child acceptance rather than avoidance. You just must learn something more about yourself.

My Challenge: Missy

It is my pleasure to introduce my friend Missy. Missy is a true warrior mom. She coaches, brings her daughter to cheer leading, gymnastics and any event featuring Sofia the First. In addition to keeping her princess happy, Missy has two sons that keep her on her toes with (pick any sport) practice.

Missy’s challenge? Anxiety


Truthfully her challenge should be that she is a Peyton Manning fan, but we are friends anyway. Missy doesn’t let anxiety stop her from being awesome at her job, working with children like Boo every day. She channels her anxiety into showing her charges that just because they have more challenges than most, with hard work and dedication they can defy expectations.


Anxiety is tough. It is a silent challenge. One that many are afraid to share for fear of misjudgment. Yet an estimated 40 MILLION Americans are challenged with a form of anxiety. Sadly, only one-third is estimated to seek assistance. Thank you, Missy for sharing your Challenge. I am especially thankful for the care you show Boo every day. For more information and resources on anxiety please visit the Anxiety and Depression Association of America.

What’s your challenge is a series that was inspired by a program I created at Abby’s school. To submit your challenge, please e-mail me at firebailey@gmail.com

My Challenge: Kayla

This is Kayla. While I have never met Kayla in person I have come to admire her through her mom Michelle’s blog, Big Blueberry Eyes. Kayla loves to dance, act and participate in Buddy Walks. Kayla has not yet met a stage that she cannot dazzle. 

Kayla has Down Syndrome and with that comes some challenges. Somethings are harder for her to do and some things take longer for her to learn. Yet having Down Syndrome doesn’t define Kayla. She is defined by her beautiful heart, the friendships she has created and the activities that keep her mom on her toes.

Thank you, Kayla for sharing your challenge. I hope one of these days to see you dancing with Boo on the beach!

There are over 400,000 persons with Down Syndrome in the United States. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all. To learn more about Down Syndrome please visit the National Down Syndrome Society.


What’s your challenge is a series that was inspired by a program I created at Abby’s school. To submit your challenge, please e-mail me at firebailey@gmail.com

Throw Back Thursday-Turning Right

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.

Throw back Thursday-Blog style



(Originally posted 15-JUL-2012)

Although Boo is not autistic, she exhibits a lot of similar behavior. This weekend I read an article in Outside magazine titled “Little Boy Lost” by Dan King (http://www.outsideonline.com/outdoor-adventure/outdoor-skills/survival/Catch-Me-If-You-Can-20120801.html?page=all) . It is about an 8YO autistic boy that was lost for five days in the forest. In the article they state that it is estimated that “40 percent of children with autism will go missing at some point in their lives” (page 75 section 4 of the article). 

It happened to Boo this week.  She not only escaped from her classroom, she wandered quite far from the class into the hallways of the school.

For a little back-story, when Boo first started this program I repeatedly warned them that she needed a one-to-one dedicated aide. I also warned them of her tendency to wander. She would not be misbehaving, just something may catch her attention and the next thing you know she is down the street. 


Fast-forward six-months and Boo’s teacher not only requests an assigned aide, an updated IEP and a transition to a dedicated special needs class for half the day. This new program began this summer. Again, we expressed to the teachers & aides of Boo’s tendency to wander. It was agreed that all doors would be shut and that Boo would have a person assigned to her well-being.

Thursday it happened. One teacher thought the other was working with Boo, when they notice the door was opened (handicapped, so much easier to open for Boo!) and no Boo to be found. They were unsure how much time had elapsed, quickly got coverage for the other children in the class and went to on a Boo hunt. 


This is when I know that Boo has a guardian angel looking out for her well-being. As this is the summer, the school is not locked to the public and the front doors were wide open. Had Boo taken a left out of the classroom she would have been a short walk to the great outdoors. Had this been during the traditional school year, there would have been students milling around and she might have been tripped or run down by an energetic child.  


But she took a right turn and ended up in the middle of the school. Quite a distance away from her class, but still a right turn. One that led her into the relative safety of the indoors. Thankfully her teachers found her in short-order, thankfully she is fine and this was a lesson learned for all of us. 


Her daddy, rightfully so, went nuclear when I told him. He didn’t understand why I was calm about the incident.


First, I have been waiting for this to happen for six months and was just thankful that it happened in a somewhat controlled manner. Secondly, we are not saints and it has happened to us! In the front yard, blink for a moment and she is gone. Sure the teachers were warned but until it happened they would not believe us. Lastly, I do not want to ever think the teachers cannot tell us something. I want them to know I not only will I not ‘overreact’ I will work with them to figure out a solution that will work in the school and home too.


I wasn’t going to post about what happened on Thursday. But after reading the Outside magazine article, I felt compelled to share the story. Boo was missing for, at most, 10 minutes and I was completely unaware. Because Boo is virtually non-verbal, had her teachers not told me, I would have never known. Had Boo taken a left-turn and been found by a stranger she would not have been able to give them any information. Even scarier, had she taken a left and gone unnoticed she very easily could have run into the busy street. She is so petite, a driver may not have noticed until too late. The what-if scenarios are endless and nightmarish.

If 40% of autistic children ‘elope’ how can they not figure out why? With all the money in medical research, they can figure out how to keep a man happy but not our children safe. 


Personally, I am going to see if they can get a door alarm for Boo’s class. I am going to look into a medical alert bracelet for her to wear with her name and number (the trick will be making her wear it). I may even go the extreme and start labeling the inside of her clothes! 


I would be very thankful for any other ideas. What do you do to make sure your child is safe if they wander?

40% of autistic children go missing. Thank God Boo took a right-turn. 

My Challenge: Julia




All of us have challenges. Each and every person has to struggle to do something. This Spring at Abby’s school we charged the staff and students to share their Challenges. From the cute (can’t catch butterflies) to the heartbreaking (my mom died) every child and teacher shared.  With sharing came hope. Sharing led to compassion. Sharing led to being free to say that while the child might have a challenge, the challenge wouldn’t stop their dreams.

After I posted the program my friend Kristi at Finding Ninee encouraged me to make a Challenge Series. In reaching out to a few friends the response was amazing. May I introduce you to my first guest, Julia.


Julia is a wonderful little girl. We first met her and her family at the Pediatric Therapy. She spends hours each day working in school to learn how make her cerebral palsy work for her. This little girl is a fighter. Defying the odds and expectations of anyone foolish enough to try to put limits on her. Julia loves swimming, horseback riding, picking her sister up at the bus stop and bike riding.

Julia is 5 years old and her challenge is Cerebral Palsy. But don’t feel bad for Julia’s challenge, she just needs some extra time and help. Her smile says it all: Her Challenge makes her stronger.

There are over 800,000 persons in the US with Cerebral Palsy. Cerebral Palsy is a group of disorders that can affect movement, learning, hearing and thinking. Like many other syndromes, children and adult with Cerebral Palsy are as unique as their personalities. To learn more about Cerebral Palsy please visit United Cerebral Palsy

Thank you, Julia for sharing your smile with us today.

This is the inaugural post for the My Challenge Series.  To submit your challenge, take a photo holding a sign that says, “MY CHALLENGE IS X” with a short about how you do not let your challenge define you to firebailey@Gmail.com

Throw Back Thursday–Comparing

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.


(Originally posted 05-JUL-2012)

I really TRY no t to compare Boo to other children. I just don’t often succeed. Take last yesterday. While other children (including Allie) were enjoying the fire department muster, Boo was to overwhelmed to participate. I tried to take her off to the side to play in the foam, but she could not over come her fears. Too many people, too much foam, too much noise. I don’t know which of these factors were too much for Boo, because she cannot tell me.

It is so difficult not to think, look at those little ones rolling in the field. They are having so much fun. Watching the utter joy on the other children’s faces as they played with the water and foam I had to continually remind myself of Boo’s progress this year. At least this year, she watched from afar. She kept calling for Allie to come out of the fun, certain she was in danger. But she wasn’t crying or clinging to my arms. She just wanted to watch and laugh from a safe distance.

It was the well-meaning family members that bothered me. Trying to force Boo into a situation she wasn’t comfortable. Trying to force her to touch the foam or play in the water. They were trying, I know, to help. 

But they were not helping. 

They just think this is something Boo will outgrow. They do not understand that the hours of therapy a week are necessary. That Boo needs to explore the world at her own pace. You cannot force Boo to do anything. She has to wait and make sure it is safe (thankfully Allie is a willing guinea pig). Boo does not like for you to take her shoes off and make her walk onto the grass. That it took me a week for her to be able to wear the crocs in the first place, so please do not remove them!

They do not truly understand that the doctors, surgeries, procedures, therapies are essential for Boo’s life. And that they are probably unending. A friend actually said to me that Boo was a typical 3YO, why is she in so much therapy. Then I pointed to the actual 3YOs that were playing with the firemen in the muster.  The ones who were playing on the playground unassisted, going to the ice cream truck and eating without a problem. If Boo wasn’t in so much therapy she wouldn’t be rolling over let alone walking.

I understand that all children reach milestones at different times. I just wish well-meaning friends and family would begin to understand that Boo’s milestones may be in the distant future. They should rejoice in where she is, not where she should be.

And so should I.