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: Kara

4 Replies

This is my friend, Kara. She is the best teacher in the whole wide world according to Abby and her friends. Kara is also the mom to Robbie, the best dressed almost 2 year old I have ever seen. Seriously, he is gorgeous. Except when facing a challenge all parents face.

My Challenge: Getting my child to sleep

My challenge is getting my toddler to sleep! My degrees in psychology and education couldn’t prepare me to transition my son out of his crib. Nightly, we would hear the loud THUMP and pterodactyl like scream as he escaped his crib, yet again. I know what you’re thinking, how much of a challenge can sleep training really be? Well, after weeks of sleep deprived nights for the whole family, we realized what a luxury sleep really is. Although this is a bump in the toddlerhood road, we won’t let this challenge define us. Extra cuddles, bedtime stories, and special attention will get us through this challenging time…Oh, and loads of coffee!

I really wish I had the magic answer for Kara and all other moms out there. Abby was that first child that just went to bed. Boo? Holy crap that child would scream for two hours, dose for 30 minutes and then start screaming again. We tried the Karp method, we read the Parenting advice, the cry it out method, the sleep with your child even though you are not supposed to method. Finally she just slept. Yet each time we go away, she returns to screaming herself to sleep for three nights.

I am sure Kara would appreciate any advice you can offer in the comments!

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

Happy Fourth of July!

1 Reply

To all the Veteran’s who make our country free.

To all the women before who gave me my independence.

To all the therapists who work with Boo to make her strong, stubborn but independent.

I thank you.

Happy Fourth of July!

Throw Back Thursday–Independence

1 Reply

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 on 03-JUL-2012)

Tomorrow, July 4^th, we celebrate our Nation’s Independence. The preparations got me thinking of how, as parents, we provide the tools for our children’s independence. Even though it breaks our hearts, a little, every moment we are preparing them for growth.

Allie is already an independent 8 year-old, going on 45. Preparing her to be independent means giving her the confidence to know she can do anything she sets her mind but nurturing the desire to include others on her journey.

Naturally, I wonder about Boo’s Independence Day. Will she ever have one? I know she is only 3! But I am a worrier and a planner. I want to know today what I am doing tomorrow. This is where Boo’s needs fit perfectly with my own. I need to plan and she needs a plan for every day!

One of the difficulties I face with Boo being undiagnosed is I do not know what her future holds. I do know that all children’s futures are uncertain. While I can imagine Allie being a wonderful dictator to a small Caribbean nation (hey, I want to retire to a beach and she loves ordering Boo around!), she may just run a household. And that’s okay. And it is okay that I will always worry that Allie is living a fulfilled life. That’s the definition of MOM, or it should be!

Boo is another worry. I just don’t know what her expectations should be. Should I expect her to be reaching for the stars or just concentrate on her teaching her to hold our hand? A year ago, Boo was using a pediatric walker. Today she is walking independently. This is where I have to stop and acknowledge her success. She may never reach total independence. But she will have moments of independence that I should remember to celebrate in small ways.

I have begun to set short-term goals, rather than long-term expectations.

Tomorrow, while I am attending the parades and fire department musters and watching the celebration of our Nation’s Independence Day, I will also remember to celebrate Boo’s accomplishments. In just a year she has become independent in:

· Walking

· Climbing on-top of my kitchen table

· Signing “I want” and following up with verbalizing “cracker” (or her version of the word)

· Getting herself into and out of her toddler bed

· Opening her bedroom door

· Drinking from an open cup

Happy Independence Day, Boo! I cannot wait to see what the next year brings.

Being okay doesn’t mean being satisfied

16 Replies

A few months ago I wrote a post titled Paging Dr. House. One of the most fantastic benefits of blogging is when a reader might not comment but instead send you a lifeline. To protect her privacy, “T” wrote to me shortly after that post and encouraged me not to give up. Not to despair. But more than a pat on the shoulder “T” gave me the name of a doctor who might be willing to review Boo’s history. She may have found our Dr. House.

So last week we took a little 20 hour road trip hoping to find an answer to what is Boo.

We were worried, to be honest. David was nervous of walking into a Justina Pelletier issue. I was excited, we might have an answer. A little nervous that we were making a huge monetary investment in a hoax. Then I got excited again. Until the day we left and I realized that answer might be that Boo has only five years left of life. I wasn’t quite ready for that news. I sent a panicked text to Tia who replied: BREATHE.

Thankfully our fears never came true. Instead we were given a new hope: finding an answer. We might not, the doctor was very honest with us. However just looking at Boo she said she was confident that not only did Boo have a syndrome but that the answer was out there. Not five years from now, but as near as six months.

For the first time in too long a Doctor got it. A Doctor looked at Boo from her beautiful hair, to her teeth, to her fingers and toes. A Doctor didn’t talk with just me, but looked at Boo and spent time (almost 2 hours) with her. She noticed that Boo grinds her teeth, that her hands/feet are slightly webbed, that she is the best hugger and has bowed legs. She took out her medical books, laid them on the desk and said, “I’ve seen this characteristic before….” and “wait let me think about this…”

She was also honest and said we might not find the answer today but that it was important to never stop searching. She understood the why of it all. That to get Boo the best life possible we cannot be in the dark. We need to be aware of what she has so we give her the best chance at living her life that is this beautiful miracle.

This Doctor was clear: While Boo’s tremendous advances may have “ruled her out” for certain syndromes that might not be true. Without her therapies and schooling she would not be where she is today. Her advances might be in spite of a syndrome rather than because of one. She was also honest: She might not find the answer but that didn’t mean the answer isn’t out there somewhere.

She solidified for us that we have to continue to be warrior parents. That the hole in her heart may be “trivial” but it is important, that her temperature issues might be manageable but they are important, that Boo has dysmorphic features and they are important. In her terms, Boo has “structural issues” and these are due to a genetic syndrome and not by chance. That we need the answers because one day these “trivial” issues might prove to be catastrophic. That it is our job as parents to continue to be the thorn in the medical establishment’s side. She understood on an intimate level that this is our child, the most important child in the universe.

Boo will have to undergo more laboratory testing. The tests take about six months to result. The six months will be worth the wait, even if the answer is we don’t know. At least we found someone who won’t stop looking with us. We will know we have exhausted every option, for now.

Maybe, just maybe I will have to change the name of this blog from Undiagnosed but Okay to something more appropriate.

Won’t that be a cool problem to have?

Thank you, “T”. You know who you are. Thank you for reaching out and “stalking” until you found me on Facebook to offer us a lifeline. When I was in despair and worried you were willing to take time out of your life to offer me hope. I won’t forget it and hope to pay it forward someday.

My Challenge: Julie

4 Replies

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

Bear with me…

4 Replies

This is kind of a Jen Kehl type of post but I hope everyone bears with me. I listen to Pandora at work. This means music goes from Eminem to the Drop Kick Murphys to the Glee Soundtrack. The other day right after I heard a song by Eminem the music transitioned to Christina Perry’s A Thousand Years (theme from Twilight).

It was the instrumental version so I did not have the singer’s voice, just the one in my head. It occurred to me that the song while about true love, to me is about parenthood.

“The day we met, Frozen I held my breath. Right from the start I knew I had found a place for my heart…”

With each girl I literally held my breath when I first held them. I was so afraid I would break them. But I knew in that instant I had found my home. One where I would always be warm and loved.

“Time stands still. Beauty in all she (he) is…I will not let anything take away what’s standing in front of me…”

Time does stand still. It also goes faster than a heartbeat. But there are moments of parenthood where you are lucky to see for the rest of your life. Their first step, their first smile (for real, not the gassy one). The day they drive the car for the first time. The moment they find their true love. No matter how many times you hear “MOOOOMMMMM” and wish they had a mute button. It will erase the moment you heard them say momma the first time.

“And all along I believed I would find you. Time has brought your heart to me. I have loved you a thousand years. I will love you a thousand more”

Children don’t understand. I know I did not understand the depths of my parent’s love until I had my own. Time might march on. We are only “here” for a short time. But love transcends time. It transcends distance. You can have a child half-way around the world and yet your love reaches them.

Your child might be non-verbal. They might be in the midst of an epileptic seizure. They might just be being a pain in the butt teenager. Yet they feel your love.

For a thousand years you get to feel theirs right back at you.

And that is how deep I got into A Thousand Years until Men in Hats came on. So everyone grab your child and do the Safety Dance!

Throw back Thursday–On Display

2 Replies

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.

//www.youtube.com/get_player

(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.

School’s out for summer! (Oh crap)

3 Replies

Today is the official end of the school year for the girls. Seriously I don’t know why they even had to go today. I mean really, a Tuesday and it’s a half-day. If the school God’s loved us school would be year-round.

Apparently the kids bribe better than the adults. Because here is what I get to look forward to for the next 70 days. That is SEVENTY days and nights of
70 days I will hear: why can’t I get a pool?

70 nights I will hear: can I have a sleep over?

70 days I will hear: I’m bored (at the 71st time I reserve the right to go into the bedroom with a Hefty bag to get rid of all the toys that are boring)

70 nights I will hear: but it’s too light out to go to bed

70 days I will hear: why do you have to go to work

70 nights I will hear: please just one more ice cream

70 days I will hear: I don’t like sunscreen

70 nights I will hear: My burn hurts

70 days I will hear: the ocean cleans me

70 nights I will hear: can I take a longer bath

And on the 71st day they will hear me exclaim: TIME FOR SCHOOL!!!

How do you plan on spending your summer vacation?

My Challenge: Laura

5 Replies

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

Thank you

2 Replies

While I have so much to be thankful for this week, I am only going to focus on one person who made a difference in Boo’s life.

Each and every person who works with Boo becomes a part of our family. I am not sure if it happens with other parents, I hope so. Because you are all so important to a child’s success. This is a special thank you to Emily (or Emmy as Boo calls you) who had to say goodbye this week. She is leaving us for a great new adventure and we wish her nothing but happiness.

Emily you will be missed. You have been an integral part of our “family”. Boo’s gains is due to your being a part of her team. Your patience. Your kindness. Your firmness. And yes, your snuggles. Boo (and we) love you “Emmy”. We will never forget what you have done for us.

We consider Boo lucky to be part of a team of teachers and therapists who work together to make her the best. I know your co-therapists will miss you as much as I will. Workshops won’t be the same. Heck, Fridays won’t be the same.

You have helped us navigate feeding issues, potty training, stairs and Boo finding her voice. She has flourished under your care. I have seen you correct her with love. I have seen you stop when she wants just one more hug. You held me up after that field trip of tears. I have witnessed your patience (more than I could ever hope to have). I have been lucky to have you collaborate with others who work with Boo. You have allayed my fears and offered guidance. You do every task with attention and caring.

Thank you from the bottom of our souls for giving Boo your best.