Category Archives: what’s your challenge?

My Challenge: Mardra

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I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge. 

My Challenge: I am afraid of monsters.

As long as I can remember, I have known that a monster is not the lifelike replication of a furry puppet. I’ve also never really been afraid of Frankenstein or Dracula style monsters, fantasies that were created to emulate the human condition, but in and of themselves began as a figment of a writer’s imagination. 

No, as a young girl and still today my fear of monsters is much more palpable, cynical and real.The opportunity to see and read stories of the monsters that walk among us are everywhere and every day. 

The news is filled with them.  One example that recently crushed me involved high school boys acting monstrously towards two of their innocent and more vulnerable peers. My stomach turns now and hollows; my heart pains as it beats living with the long minutes of rape, exploitation, jeering and confusion. I type through the tears for the parents of the victims, the anger they must feel, the shame, the fear…

I scold myself. I shouldn’t have read the article. The headline told me all I didn’t want to hear or believe. 

What am I supposed to do with these images, at once swimming among and drowning my own thoughts? This being one of the many examples of monsters that look like normal human beings, living among us. And they are everywhere. Both in power and searching for power. On the streets and online. In my imagination and in real life. They have always been and always will be.

For the first 21 years of my son’s life, we lived in our own shell. I went to work and home and kept a close circle of friends. Marcus went to a private school where I felt he was most safe while learning and growing. From the first days of his life I feared that his facial features would make him easily preyed upon; I felt compelled to focus on preventing the possibility of any ill-intentioned creatures causing him harm.

The word overprotective has been lobbed in my direction and that too carries its own weight of parental guilt and consequences.

Less than two years ago I decided to put in a window to our closed off life. I finally embraced the 21st century and Marcus and I claimed our own little corner of the World Wide Web. We launched Grown Ups and Downs, with much thought, trepidation, and coffee.

So far, we are a very small clan and don’t attract much attention from monsters. But I know they are there. And, that is part of why we are there, too.  A song I often refer to for courage is “Hands” by Jewel: For light does the darkness most fear.

https://youtube.googleapis.com/v/AfsS3pIDBfw&source=uds


I don’t have a great arsenal of defenses against potential monsters. I don’t have a superhero shield or a sword of steel. All I have are two things: language and love. Marcus inspires me every day by sharing his stories and his humor. He gives me his love unconditionally and he accepts me when I am curled up and hiding under the blankets. He reminds me when I rant that, “No one is perfect, Mom.”

Monsters feed themselves lies and vomit it upon others. Monsters are even afraid of other monsters, which is why they huddle in packs, and commonly use whatever means available to dull their human senses.

The days when fear pulls on my shirttail and coaxes me to hide, Marcus shows me how his light can shine and warm others who may also be afraid. He tells me dreams the monsters could not believe, and we climb towards those dreams.

I know the monsters’ presence will grow with us and there are days they strike. There will continue to be days the when monsters touch both those I do and do not know and leave me bruised and shaken in their wake as well.

I do not foresee a day when I won’t be afraid of monsters. And monsters, true monsters, will not be changed.

But others, those who are looking for kindness, reasons for optimism and good news. Those who are looking to learn and have opened their minds to a spectrum of human possibility, it is for them that Marcus’ light shines the truths of love and life’s potential. His enthusiasm and ambitions take a little bit of power and energy from the darkness monsters feed upon: ignorance, fear, and misunderstanding. It is with Marcus by my side that we aim to show from our little corner of the world a life of innocence, of ambitions, of love, and try to shine brighter yet these things into the world. These are the only weapons we have and we wield them with hope.
In the end, only kindness matters…
 

Marcus and his mom Mardra

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When Mardra sent me her Challenge I immediately thought of Robert Sayler. Then the horrific parody of the ALS Challenge was done to a young autistic man. Yes, cruelty happens, but when your child is unable to communicate, when their very being is something that can be preyed upon you live with another fear. I send Abby to school every day knowing she could be bullied, targeted and hurt. Yet I know I have provided the tools she needs to alert myself, her father or a trusted adult to keep her as safe as possible. David teachers her self-defense and drills into her the need to be aware of her surroundings. Yet, I know with all the tools we give her a Sandy Hook, a 9/11 or a Boston Marathon could happen. Or worse.


With Boo the fears are different. Boo cannot tell me what happened. For example last week she fell and scuffed her knee. She told me her therapist at school “pushed slide”. I knew that probably didn’t happen. When I asked her therapist the next morning, I said Boo said you pushed her off the slide. David was there and said no, I was walking her to the car and she tripped! We all had a chuckle over it. Boo bruises easily, she is always getting a bump or scratch. Recently she had one on her back. It turns out Abby dropped her. No biggie, but reading Mardra’s challenge reminds me that some day it might be. That Boo needs the language because one day it could be her that some high school bully pranks with a bucket of feces. Or worse. If you have time, check out Mardra’s article on the Huffington Post. It’s not just the monsters out there, it’s the people who say our children need to be hidden. 

You can find Mardra and Marcus on the Grown Ups and Downs Blog, Facebook & Twitter.

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: Allie

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I “met” Allie through the world of the Blog. I am not quite sure how we stumbled on one another but she continues to crack me up with the escapades of her four children, husband and life in general. On top of it all, Allie is an autism activist, an author and a woman with a sense of humor similar to my own.

Her challenge: Organization.

When Allie first sent it to me she wasn’t sure if it was the type of post I had in mind for the Challenge series. After reading her words I was nodding my head and I think you will too.
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My Challenge: Organization



I have four children, with four different personalities. They attend three different schools and each has a different extracurricular activity schedule. I have a husband and a home to take care of. I have freelance writing commitments and a blog. I like to exercise and spend time with my friends. However, there are only twenty-four hours in the day.
An essential requirement of “doing it all” is being organized. Yes, being organized is a must-have quality in people who have much to and many places to be. At one time, I was organized. I really was, although few people in my life today actually believe it. When I was in my early twenties, I attended college full-time, earned good grades, worked full-time, exercised religiously, was responsible for my own personal maintenance and managed a very active social life. I slept little and rarely suffered for it. I was excellent at juggling and few things slipped through the proverbial cracks.
A few decades later, I’m a hot mess – getting by on a wing and a prayer. I’m constantly losing my keys and/or phone. I can’t find my glasses when I need them. I go to the grocery store with the intention of buying everything I need for dinner, leave my shopping list at home and then upon my return, realize that I failed to buy the main course. I routinely forget appointments or fail to be somewhere on time, and show up at events without the required tickets (more than once).
I married someone who’s the opposite of me. He’s a man with a plan who believes that everything has a place and he knows where that is at all times. He has an organized and accurate calendar that dictates his schedule to the hour and three ring binders for the projects he’s completed. He rarely leaves his office at the end of the day without emptying his inbox.
Here is a picture of my office.

How did this happen to me? I no longer work full time, or attend school. You’d think I’d be able to get my act together. Nope. So that leaves me with little alternative other than to blame my children. It’s all their fault. In addition to maintaining my own active to-do and want-to-do lists, I now have to manage the lists of four other people, and deal with all the associated paperwork and transportation.
The first step to solving a problem is admitting that you have one. Dear world, I have a problem.
Yes, I am aware of my weakness and over the years have made various attempts at improvement. I’m on a never-ending quest to “get organized.” I didn’t realize how never-ending it was until a friend pointed it out to me when she needed something that was in my office. The door was closed and before I opened it, I made my disclaimer that I was in the process of organizing. She laughed at me and commented that I’m always in that state. Yeah, I was a bit embarrassed.
It doesn’t help my situation that my office is the family dumping ground. All the school agendas and forms get placed on my desk. Need something to be returned to the store? Put it in my office. Shipping presents out of town? Oh, just pile them in my office. Working on a school project that requires lots of paper and glue? We don’t want that cluttering up the dining room, do it in my office. Items that take up residence in my office have a good chance of disappearing. Currently, the list of items missing-in action includes a baby shower card with a gift certificate inside. If I’m being honest, I should confess that the card is also a few months late. The baby has already been born!
I bet you didn’t know this, but there’s a bounty of organizational resources available to us on the internet. In the last year, my get-my-act-together focus has been in the blogoshere. These sites are so pretty and helpful. Many of them offer free “printables” that will help you get organized with lists, calendars and do-it-yourself (DIY) projects. Side bar: not to go off on a tangent, but those of us who are disorganized, typically are hopeless at DIY! In the frenzy of my getting organized excitement (and panic) last year, I dutifully printed off everything I could find. I went so far as to actually file the documents away in three ring binders, where they still reside today (mostly unread). At the time, I actually envisioned a future where I’d kicked my bad habits and boasted about the newly organized Allie in a blog post, with stunning before and after pictures.

The blog never materialized. Sometimes I think I need to take it a step further and actually hire a professional organizer – or a life coach. But that route can be costly. Still, there’s something to be said for accountability. I did rope my husband into a DIY project last year for an organizational mudroom wall and it looks great. The project turned out to be a lot of work for him, so my guilt has motivated me. Any changes I’ve made over the years have been helpful, but short-lived. I do have a new filing system I’m quite proud of, courtesy of a blog, but it is the exception to the rule. I don’t know if it’s boredom, ADD or the chaos of life, but I always, eventually, seem to go back to my scattered ways. Why is this?

It makes my life so much harder. I also feel remorse about the harried example I’m setting for my children. Does anyone have any suggestions? I’m open and ready to listen, it’s just the execution phase that may trip me up.

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As I said I was nodding my head at everything Allie shared. Last weekend I managed to schedule a camping trip in one state, a performance of Frozen on Ice in another state and we managed barely to do all of it. I have also shown up at birthday parties a week early or late and been known to send a thank you card a year too late (to my mother’s dismay).

Thank you, Allie for sharing. I encourage everyone to follow her of at Latch Key Mom. Her posts are always uplifting and I believe most of you will read and say Hey this could be me!

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: Stacey

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You know when you graduate high school you know, just know, that you will never forget those who shared those torturous four years with? Then you grow up and move on. One of the wonders of Facebook is reconnecting with friends long forgotten. Lucky for me an old friend, Stacey and I found one another recently.   

I am so thankful she is willing to share her challenge today.

MY CHALLENGE: Choosing to truly love all that isn’t perfect

Remembering back to where it all started, trying to have the perfect life. I was on the fast track. Improving my career, I had just accepted another promotion. Things were going as PLANNED. I became pregnant and life was awesome. Then IT happened. I started having horrible pain and realized I had miscarried. Well that was just the beginning…the truth is I ruptured an organ and had 4 cups of blood in my abdomen. I had gone into shock and was practically dead. I picked myself up after hitting my head on the toilet and my husband called 911.
The purpose of this story will become apparent soon and it’s connection to autism.
On the road to recovery I decided nothing would stop me from having that perfect life. Despite the fact numerous doctors said I wasn’t able to have kids I tried again several times. And I failed several times. But WAIT a minute. I wasn’t failing at all. I never gave up HOPE. If it wasn’t for hope I wouldn’t have three amazingly complicated mischievous beings.
I got pregnant with my first child and it was rough. The doctor said try again soon if you two. Not 15 months went by and Matthew was born. I was so excited but during my pregnancy everyone asked if things were okay. I only gained 15lbs and didn’t enjoy food. Being my stubborn self I only paid attention to what I thought was important.
When Matthew was four months old I got my first sign something wasn’t perfect. My son’s left arm wasn’t functioning correctly. To my dismay, he needed physical therapy. Then he was diagnosed with autism. So we worked more and more to pay for therapy he really needed. I think we spent over $20k of our own money. But, I smiled through the exhaustion. I read books, studied online, pulled up maps of the brain (that’s the Psychology major in me).  I talked to my customers who were doctors, teachers, mothers, therapists, anyone who could offer advice. My HOPE was reaching new levels.
I refused to believe the prognosis that Matthew will never speak more than 20 years. I am not going to accept that and neither will God. For He made me super determined. I began researching vitamins, clay baths, speech therapy and anything that might help my son. We went gluten free, dairy free and I found solace with my spiritual life coach, Sister Ita.
To this day I say whatever your challenge, find your inner peace! Find your strength and pray. Find your child and don’t let them go. Don’t ever forget the journey, but focus on the end result, the future. Your child is so much more than our hearts can imagine. Hang in there through the hard times. Reach for the sky and don’t give up your hope.
Love,
Stacey

Mom of Matthew

Thank you, Stacey for sharing. I think all of us struggle loving what isn’t perfect in our lives. But a mother’s love always trumps all. In addition to being a warrior mom, Stacey is the owner of Vivian’s Day Spa in Florida. A place to rejuvenate and find an hour of peace.

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: Sylvia

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I am so happy to introduce you to my friend, Sylvia. I met Sylvia through the World of the Blog a few years ago. She is the mother of nine, that is NINE, beautiful children. All of whom were home schooled and home birthed.  I am in awe of her patience and so touched that she is sharing her challenge with us today. 

What’s My Challenge?  My Changing  Faith
I didn’t grow up in a Christian home,  but for a brief time when I was about five years old my mother did take me to Sunday School.  There I asked Jesus into my heart!   In fact, I asked Him in twice just to make sure He was really there!  And that was the extent of my religious upbringing!

As I grew older during the early seventies I spent my teenage years dabbling in sex, drugs, and rock and roll.  When I found out I was pregnant with my first son I cleaned up my act and straightened myself out because I didn’t want to harm my precious little baby and I was determined be the best mother that I could be.

Then I got married and had another son.   When my sons were two and four my first husband died and I began thinking about my long forgotten faith.  At first I just began dropping the boys off at a local church for Sunday School and Vacation Bible School.  It was during one night as I was retrieving the boys from VBS and heard all the children singing, Jesus is my King, that I felt the Lord’s presence and renewed my faith in Him.
Flash forward thirty years and I find myself in somewhat of another spiritual awakening.  For years I had been content to sit in a pew and believe what was taught from the pulpit having complete trust that what I was being told was the gospel truth.  I never really occurred to me to challenge what I was told or even t to study for myself whether or not what I was  believing was really the truth.

Until now, that is!  The internet has exposed me to so many new and different thoughts and interpretations on the meanings of scripture. I am no longer content to just sit quietly and unquestioningly believe what I have been told.  I have come to the startling conclusion that I am just as capable as anyone else of studying the scriptures.  In fact, there are even verses that confirm the crazy notion of searching  and studying the scriptures to make sure that what we are being taught is the truth!

(Acts 17:11) Now the Berean Jews were of more noble character than those in Thessalonica, for they received the message with great eagerness and examined the Scriptures every day to see if what Paul said was true.

( 2 Timothy 2:15) Study to shew thyself approved unto God, a workman that needeth not to be ashamed, rightly dividing the word of truth.
I realize now that I no longer believe certain doctrines that I just took for granted as being the truth without question.  I won’t lie and say this has been easy to admit.  It’s actually been pretty scary for me!  I don’t want to be  wrong after all!  But after thirty years of holding to a Christian Patriarchal  and Quiverfull mindset.  I no longer believe that men must be in control of everything or that women should just sit back and be silent and submissive. 

Having a child with disabilities has also opened my eyes and softened my heart to the plight of other people groups fighting for equal rights and acceptance.  I no longer believe that it’s the Christian’s job to judge or deny equal rights to our LGBTQ brothers and sisters. 

I believe that everyone is worthy of being treated with love, acceptance, and respect regardless of their race, religion, skin color, social class, abilities, disabilities, convictions, opinions, choices, lifestyle, sexual preference, or sexual identity.

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Thank you, Sylvia for being so honest with how your faith has evolved. I know my own has changed from a little girl who feared God to a grown woman who questions and seeks answers.  You can learn more about Sylvia, her beautiful children, and her faith at her blog, Living with Our New Normal. 


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: Echo

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Today’s My Challenge is from Echo a mom blogger who writes about the joys and tears of home schooling two children, one with autism and one with a diva issue. 

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My biggest challenge and my greatest love…
When Kerri asked me if I would be willing to participate in this series, I was ecstatic. I think that opening up and sharing our struggles and challenges is a great way to help each other grow as parents.
My son. My handsome, smart, charming and stubborn son is on the Autism Spectrum. He has PDD-NOS (formerly diagnosed as Asperger’s Syndrome). He is extremely high functioning, but also has a lot of sensory processing and social interaction issues.
My daughter. My gorgeous, intelligent, dramatic and independent daughter is NT (Neuro-Typical). She has hit all of her milestones and continues to grow and progress.
My biggest challenge is also my greatest love, raising my two children. Raising a child on the spectrum is hard for anyone, add in sibling rivalry and it can be complete chaos. I have to navigate so many issues, that at times, I feel like I am nothing but a referee.
Try dealing with the emotions of an over dramatic 8 year old when he realizes that his 3 year old sister is faster than him. Try dealing with his frustration when his 3 year old sister starts riding her bike and he cannot.
Imagine trying to get your strong-willed 3 year old to stop touching her brother a certain way. Imagine trying to break up a fight between a 3 year old and an 8 year old because the 3 year old took her MegaBlocks back.
Feel the heartache when you watch one child achieve something that the other could not. Feel the confusion because you don’t want to treat them differently, but you have to because of age. Feel the frustration when your 8 year old constantly yells at your 3 year old and your 3 year old constantly pushes your 8 year old’s buttons.
My children are my greatest love and I would not change either of them. However, trying to raise them together, equally is truly my greatest challenge.


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When Echo sent me her post she wondered if it was “right” for the series. After reading it I replied it was freaking awesome. I think all of us with multiple children have the challenge of raising them the same but different. Add in a disability and YIKES it can sometimes (most times) seem overwhelming. 

Thank you, Echo for sharing your challenge today. You can read more about Echo at Mad Mommy where she shares everything from the 100 lb challenge to home schooling. 


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: Lisa

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I am so happy to introduce you, officially, to Lisa aka Tia aka my BFF aka the person who has known me before mall bangs were popular and we wore our jeans up to our armpits. That one person who knows where the body is buried because she probably helped you put it there.

Lisa is mom to Owen. A boy who makes her play Lego’s, X-Box and Laser Tag. He also keeps her on her toes with his challenge. 




My Challenge: Food Allergies

We discovered our son, Owen, had food allergies when he was about two years old.  We had gone to a summer festival and were enjoying the music the Caribbean band playing when Owen began rubbing his eyes.  Shortly thereafter his eyes were swollen, so much so that they were almost closed!  Of course we panicked and didn’t know what to do.  I kept checking to see if he was having difficulty breathing, but he was not, so we left to get him some Benedryl.  On the way home, the allergy went away, but I was terrified of it happening again.

I kept trying to figure out what had caused the reaction.  He had eaten some French fries and a bite of potato salad that he immediately spit out.  After a visit to the Pediatrician, and then to an Allergist, we found out that he had several food allergies, including an egg allergy, and that that small bite of potato salad was most likely what caused his reaction.
I was angry when we left the Allergist’s office.  Angry b/c when he was a baby I thought I had done everything I could to prevent this.  I nursed, even though it was excruciating and did not give up even though I was told it wasn’t worth it.  I also made all of his baby food from scratch and made sure he only ate what was recommended by the Pediatrician and did not introduce high-allergy foods earlier than was recommended and none of that seemed to have worked to keep food allergies away.

Since then we have had to closely monitor what he eats.  I have to send in special snacks to school so that he can participate in his classmates’ birthday parties and other festivities during the year.  Some people, especially teachers, have been wonderful with this, calling me to see if he can have certain things because they don’t want him to feel left out.  Others just don’t get it and have even accused me of overreacting, but I would rather overreact than have him end up in the hospital or worse.

I have explained to Owen what he can and cannot eat and that he should confirm that something he is given from someone else doesn’t contain any of the foods he is allergic to and he really has been great about it.  I remember a couple of years ago we went to an outdoor event in the winter and someone was selling hot chocolate.  He walked up to the woman and asked her if there were any eggs in it.  It was so cute, but even though he is aware of his allergies and what he can and cannot have, that doesn’t mean that the person offering it is aware of all the ingredients.  Such was the case for Cameron Groezinger-Fitzpatrick who died after eating half a cookie that had peanut oil in it.  The friend who gave it to him wasn’t aware it had peanut oil in it.  http://abcnews.go.com/Health/Allergies/college-freshman-peanut-allergy-dies-eating-cookie/story?id=18723777.  

This is our greatest fear, especially as he grows up and is more apt to accept food from someone else. Unintentional exposure can happen so easily. One afternoon frosting a Gingerbread house with his cousin, Owen got frosting on his hand and cheek. He had an immediate reaction. His eyes swollen shut. We never thought to check the ingredients as he wasn’t going to be eating the house. 

I won’t make that mistake again.

Although Owen would say that it’s a pain to have to watch what he eats, especially when his friends are eating cupcakes and he is told he can’t have any because they are not sure what the ingredients are, he would also say his allergies don’t hold him back from living a normal life for a 7 year old, participating in birthday parties, karate, Cub Scouts, summer camp, etc.  I hope he will soon outgrow some of the less severe allergies, but he will probably have to deal with some of them for the rest of his life.

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According to FARE there are over 15 million that is MILLION Americans with food allergies. That is double the population of NY City. Every 3 minutes a person is taken to the emergency room due to a food allergy. That is not just the hives, but something bad enough to call EMS. The most common foods that cause 90% of reactions are: eggs, milk, peanuts,  soy and wheat. 

They are probably in every food in my kitchen. Food allergies can be mild or deadly. 

Food allergies are not just for the young. A friend of mine acquired severe food allergies when she turned 30. Before that she was fine. She expected grey hair when she turned 30, instead received an allergy to shellfish, nuts and get this garlic of all things.
To learn more about food allergies please visit Food Allergy Research & Education 
Not only is Lisa the best friend to hide the body with, she is also an awesome mom and photographer. Check out her photos at Lisa Perez Fine Art Photography. Thank you, Lisa for sharing Owen’s challenge and showing it is your challenge as well.

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 — Lizzi

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Today I would like to introduce Lizzi the author of Considerings where she actively tries to find the good in life. A blog that is sometimes fiction so good you think it is true, some days full of humor and some days despair. It’s a wonderful mix of writing and feelings. No matter what Lizzi faces each week she is determined to end on a high note with her Ten Things of Thankful post. A wrap up each Saturday where she sees the light in all of her clouds.


My Challenge: Despair



Several hours ago:

My challenge right this second, as I write this in an empty house steeped in melancholy and shattered expectations, is not to go to the cupboard in the kitchen and fetch down that shining bottle from the top shelf.

My challenge is to convince myself that it’s a sufficiently slippery path to prove deterrent – that taking the edge off with alcohol isn’t the answer. At the moment the only thing holding me back is the knowledge that I’ll regret the number of calories it contains. Ah serendipity, thou art disguised within even the soft and pudgy linings of low self-image.
My picture speaks for itself, but it doesn’t say how interconnected so many of those things are. It doesn’t tell of the (thus far) unbreakable bonds between an abusive childhood and my inability to disconnect and stop assuming responsibility (or blame) for aspects of my current situation. Or those between spousal illness and miscarriage. And infertility. And rejection, leading to further low self-esteem. And depression, which is riddling our relationship like woodworm, gnawing away at the things we thought we held dear, and now call into question, time and time again because “what if we hadn’t…”

It’s harder after the high of such a wonderful, fleeting day, where a bloggy friend and I met in person for the first time. We stood in glorious sunshine on the beach and let the warm ocean bathe our feet as we talked and talked. And later we went for cocktails and gelato and things were wonderful. And now she’s gone.

And it’s harder because the day before that (my fourth anniversary) I lay crying, once again rejected (because his illness allows him no other option), utterly desolate and we discussed whether or not our marriage would last. Because we ‘clinked’ our fries together in the restaurant in a desperate show of silliness and recognition of the occasion as tears bathed my cheeks and his eyes turned to pools of despair. Because we had cocktails and got buzzed and all that went away for a while, and with the corners of the situation tamed by tipsiness, we hugged and laughed and the shit went away for a while.
And it’s hard because I have to find a silver lining and even though the sun is up and Maslow would be convinced I should be content, at least, I really, really, really want that drink.

Now:

Writing is cathartic anyway, but particularly from a place of hurt and desperation, because it forces some of the challenges to come into stark clarity, their contrast perhaps shocking, as I lift them out of the tangled mire of mind, determined to examine them in the light of day and describe their form.

In writing this, I was able to trace those unbreakable strings which bind me so tight. And having traced them, I was able to explain them to Husby, who *listened* and cried with me as he realised the extent to which his illness and my smorgasboard of challenges crash headlong into one another, leaving us both trainwrecked and licking our wounds.
I reached out, not for a bottle in the end, but for a friend, who was in the right place at the right time to talk me down and just hear me, and make me feel less alone.
The aloneness is hardest, especially when part of what’s trapping you is your own mind, your own thought patterns and your destructive, determinedly negative perspectives. In point of fact, the (seemingly relentless) shitstorm of life is one of the main reasons I’m part of a new blogging initiative – the SisterWives (http://www.sisterwivesspeak.com) – a group of writer friends whose collective history reads like a manual for surviving almost every kind of crap that life can throw at a person. We are damaged goods, but determined to live life in Silver Linings, and *somehow* turn our hurts to helps. We don’t want others to feel alone. We want to find strength in being vulnerable and honest and sharing our truths in the hopes that they’ll somehow be useful to Someone Out There.

Our motto, (the former part I struggle with, but am trying to take on board): Alone we are enough; Together we are stronger.

Thank you, Lizzi for your honesty with your challenge. All of us find moments of despair. When it gets too much. When you wonder if that shiny bottle will dull the pain. Trust me, it just makes you puke if used for that purpose. There are so many challenges interlinked, as Lizzi has shown. But there is support out there for just about anything you are facing. This virtual world is sometimes all you need to realize you are not alone. I’m glad she still sees the hope in all the clouds.

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: 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

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.
My Challenge
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