Category Archives: Boston Children’s Hospital

Little known fact

When you have a child with a rare disease or a complex medical condition there are may facts you do not know. You do not know how to navigate the healthcare and insurance systems.  You do not know how many specialists, therapists and pharmacists you will meet. You do not know how many times you will endure ER visits and hospital.

It’s it in those two locations that there are some little known and unexpected facts you will need to learn. Continue reading

Don’t ask what you can do…just do

Have you seen this Facebook post?

Everyone says: ” If you need anything, don’t hesitate, I’ll be there for you “… so I’m going to make a bet (with being optimistic), I’m asking my ” you can count on me friends ” to put this on their wall. You just have to copy (not share). I think I know who I can count on… and I’m sure it will be less than 20!! Write “done” in comments when you’re done. It’s mental illness awareness month and I’ve done this for a friend… I pride myself on being there for my true friends. Continue reading

It’s the end of summer

At the end of each summer, I always feel YES! THEY ARE GOING BACK TO SCHOOL! There is usually a happy dance that quickly follows. Sometimes there is singing. This summer for some very weird reason is different. 

This summer was freaking fantastic. 


Sure there were some hiccups.There was the scare that Boo would have to have a second spinal surgery. There were meltdowns when she was on break from her program. This year there were more joys.

We had company just about every weekend. Seriously the sheets in my guest bedroom have never been washed so often.

When we were not company we were in Vermont. Twice. Once for a family reunion and once for the best ever family vacation where we were a normal family for a brief time.


I had a visit from my best friends from Junior High School and from High School. They got to meet. It was epic. As in spending the night until 2am drinking wine and connecting. And forgetting we are all over 40 and had to get up with our children in the morning. Early the next morning. I knew they would get along. I do not know how I go so long in between visits from both of them. We all agreed we have to be better about reaching out to one another. That although we know we are there for one another, we have to remember to reach out and be needed. 


I did not embarrass myself in any of the obstacle races I ran. Although I did end up in the ER for stitches after a dish-washing mishap. 

Boo rocked her MRI. She rocked it so well that we learned her spinal cord is perfect and she will not need to have a repeat surgery.

I did the ALS Challenge my way, explaining why I felt it was so important that the Challenge be more than just dumping ice on your head. My friend explained to me that it was supposed to be both: donate AND dump. When we looked back over our friends “challenges” though we realized how often the AND was left out. So I stand by my Challenge. Donate and dump ice. Please. Now. 

Abby had not one but three sleep overs. We all survived. My trick? Only one child can come over. That has been vetted with play dates to make sure they are not monsters that will destroy my house.

Boo’s summer program was the entire month of July and some of August. A blessing for all of us. I am deeply grateful for the teachers and specialists who gave up their summers so my girl will continue to thrive.

As I look over this summer I believe it is the first summer since I became a mom that I was present. That I didn’t use work to escape but to pay the bills. I was in the moment. Whether working with Boo to understand she could not have one more muffin or discussing if we would get a bunny. In a moment of weakness (or motherhood bliss) I said maybe. But it’s better than saying maybe you can get a pony.  


At the end of each summer I usually rejoice.

This year I mourn the end of summer. I want to be back there, in Vermont with my family. I want to be back there around the fire pit with friends. I want to be there on the beach watching Boo dance. I want that moment that she was whole. I want to wake up with no agenda other than to bask in the sun.


At the end of each summer I always feel exhausted. This summer I feel fulfilled. It’s a good feeling and one I will remember to recapture.


Finish the Sentence Friday

How would you finish the sentence: At the end of each summer I always feel….

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Boo rocks

A few months ago Boo began serious toe-walking. She could be a contender for the Boston Ballet. It was concerning because this is also a serious sign that her spinal cord had retethered. The neurourologist (yes there is such a thing) and the neurologist told me to call the neurosurgeon ASAP.

Like today.



I was floored. I was told that there was a slim chance Boo would need further surgery. I admit it, I broke. A little. Okay, a lot. Then I called the neurosurgeon and asked for an MRI. I was told that she had to be seen by him first.

And this ladies and gentleman is why healthcare is so expensive. But that is a rant for a different day. We finally got an appointment with the neurosurgeon who told me that there was a ZERO percent chance his surgery resulted in a retether.  Since I really do not care for the man I doubted him (gasp!) and explained the MRI was a non-invasive procedure. That although she would need to be sedated and there were risks associated with that sedation there was more of a risk that if her cord remained tethered we would be facing nerve-loss, muscle loss and a host of other scary things. So order the test.

I won or he conceded just to get me out of his office. Either way Boo got her MRI. Unfortunately for her it was scheduled for 2 pm and she could not eat after midnight. Then her test was postponed until 4:30 pm. Most adults I know would not be able to go 20+ hours without eating. In solidarity I did not eat either. I was crankier.



Boo was a trooper. She didn’t cry at all. That is until the first IV attempt failed. And the second IV attempt while successful was a tad traumatic. Once medicated she fell asleep mid-scream. 


She woke up in mid-scream. It was the first time she was terrified of a nurse. I don’t know who was more heartbroken, her nurse or her. The nurses at Children’s are simply the best. They gave her what comfort they could (me) and kept her safe. Boo calmed down, we went home and waited to hear from neurosurgery.

And waited.

Tired of waiting I called and found out that I was wrong. The neurosurgeon was right. HIS surgery didn’t result in a retether. She will need to see orthopedics and do more stretching.

But Boo doesn’t need more surgery. So he can be right and I will take the hit. 



Because she doesn’t need more surgery. Best end of summer news ever.

Ice Bucket Challenge

Anyone on Facebook  has seen the Ice Bucket Challenge. For those lucky enough not to have a Facebook addiction, a “friend” challenges you to douse yourself with a bucket of ice and water OR give money to a charity. Most that I have seen are for ALS

I was tagged to either donate $100 to the ALS foundation or pour a bucket of ice water over my head.

I am not playing.

I don’t understand why people are outting themselves for being so cheap that they would rather douse themselves with ice water rather than give money to find a cure for ALS.

I have two friends who have suffered and died because of this horrific disease. Watching their families grieve was not something I would like to repeat. So instead of covering my head in ice water I am donating to ALS in their names.  

What bothered me the most was the laughter that ensued when Abby watched the Facebook postings. I understand this “event” was started by an ALS warrior. A young man hoping to spread awareness. Awareness is so important, I get it. But to me it hit differently. Forget awareness how about raising a cure? 


My friend’s husband was aware, to the very difficult end, of what was going on with his body. ALS affects your voluntary movements. For example, jumping. But it does not affect your involuntary movements (heartbeat). His mind perfectly intact while his body refused to move. That is not funny. It is not something to do as a dare, a joke or just because a friend tagged you in a post. 

I explained why I was refusing the ice bucket challenge to Abby and she agreed. It made no sense to a 10 Year Old why a person wouldn’t give to charity. She might not understand what ALS is, but she knows  her friend at school who has MS. She is aware that there is disease and suffering. At 10 Abby gets that it is fine to be aware but that acts should be put into funding. 

My friend who has a family member ALS is killing put it best: 

ALS is devastating.
It is not being able to hold your newborn son in your arms.It is not being able to talk to your daughter about her day at school. 
It is about watching your beloved angry, frustrated, hopeful, hopeless, depressed, anxious.ALS is about losing the ability to walk, talk, breath, scratch, wipe, eat, blow, run, write, sing, climb, drink, type, roll over, stand, sit, open and close everything, drive, swim, step, dance, draw, click, dial, wash, hum, brush, cough.

ALS is not a cold water challenge.It is not a video showing a person getting splashed or feeling the shock of the cold water as it hits a face. ALS is needing to call for help when you can’t wipe the cold water off your face by yourself because you can’t move your hands. 

(Thank you, Jennifer for allowing me to use your tribute)


I agree with Jen. If you have ALS and this is how you want to create awareness, I am so freaking proud of you. What bothers me is that I don’t want it to become a joke. It isn’t funny. You don’t just do the ice bucket. You pay it forward because you are one of the lucky ones that can.

In one week of ice bucket challenges the Massachusetts ALS received more than $168,000 in donations. Abby asked why can’t people do both? Seriously she just wanted to dump a bucket on my head.  Not to be a spoilsport I agreed. 

Here is my challenge to EVERY PERSON reading this post:

(purple glove explained tomorrow)



How about it? Will you donate $1 or $5 or $100  or any amount you can afford to ALS AND complete the ice bucket challenge? Abby will be donating and so will her parents. 

Consider yourself, by reading this, “tagged”.

To find out more about the ice bucket challenge started by Pete Frates, a man with ALS who wanted to promote awareness, read his story here. For more information regarding ALS and resources for assistance, please visit the ALSA.ORG.

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.

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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

Thank you

Thank you to everyone who donated to our Bridget’s Brigade in the Walk for Boston Children’s Hospital. Our team raised almost $3,000 for the hospital that saved Bridget’s life just five short years ago.

We know, in our souls, that she would not have survived without their care. 

Thank you, to everyone who walked. To everyone who donated. To everyone who cares so much for our little girl.