Category Archives: community

I’m Leaving a Light On for you

When you are the parent of a child who has a disability you can feel isolated. You begin to not go out, to not seek friends and scared of judgement. You don’t complain, because you fear people will think you are not a good mom. You try to promote your life as a Hallmark Channel movie and not a Halloween one. Then the holidays come and you are slapped with the face of reality. How to get through the season when you feel so alone and trapped in this unexpected life. Continue reading

My Challenge: Coach Eli

Untitled

I am so excited that Coach Eli is willing to share his Challenge today. I admire Eli so much. First because he coaches girl soccer. I would rather have a root canal. He is the dad to three incredible daughters. He is the dad you want your kid to have. One that balances being a dad with being a coach with being the soft place for his girls to land.  Okay enough gushing.

Continue reading

TBT-Giving Permission

Do you ever find yourself needing a permission slip? I find myself being a mom first, wife second and Kerri somewhere around 156th place in the hierarchy that is my life. Last year a good friend of mine and I had a discussion about how that happens. On November 11, 2013 I posted the question: do you need permission to be you?
Continue reading

I’m thankful for the GAP

Words I never thought I would utter. But truly, I am thankful for the GAP. Ellen at Love that Max  posted a picture on Facebook of the latest GAP add. Giving them a shout out for including a girl with cerebral palsy.

I had to blow up the add to the full-view to find her.

Continue reading

TBT JUMP!

It’s Thursday so it’s a throw-back day. This post was originally published on 19-APR-2013 as part of the 5-minute series. Where you are given a word and just write, unedited, for five minutes straight.



The prompt: JUMP


Ready, set, go

Dear the Fellow that I fired, remember when you told me that Boo would never walk, talk, know us. She was six-months old. You told her father and I that she had a brain disorder which meant her brain pattern was ‘too slow’. 

I went home and cried. Then I call your boss. You know the head of Neurology. Who told me you had no right, no freaking right to tell me that my daughter might do or not do anything. She has an unknown genetic disorder NEVER SEEN before. That very rarely do you take MRI’s of 6-month old brains. Exactly what would he have compared to Boo too? 

So he told me you were off our case. We got transferred to another Fellow. An awesome doctor who believes in our daughter.

Four years later, after 9 months of therapy Boo jumped. Yes, you freaking jerk, my daughter not only laughs, signs and talks, knows her sister, her father, myself and HER FRIENDS. My daughter also walks and loves her puppy!

Boo not only loving but kissing her puppy!

And this week not only did she jump, she jumped over a line.

What you took for granted in your knowledge of all things is that you knew nothing of my daughter’s strength, joy, heart and determination. You did not know that she has a circle of people who make her more than you ever gave her credit for.

Boo jumped. And I hate that for a minute you made me think she wouldn’t.

Damn you, you made me doubt my daughter. Just once, at 6m of age. After I talked to your boss, I never did again.

Boo jumped.

END

Darn it I am out of time! I had so much more to say on this subject. Obviously I have some unresolved anger at that Fellow. But I am also thankful for the Fellow his boss assigned Boo’s care, who is now an MD. This wonderful doctor who saw the potential in Boo and never told me to give up!

TBT–Dear Ann

It’s Throw-back Thursday. A day to revisit an older blog post. This one is from when I a was a tad, um, infuriated with a celebrity.



Originally posted 23-OCT-2012

Dear Ann,

May I call you Ann? I feel we can be informal since you feel so comfortable insulting my child. I mean, really, only family should be able to make us think that we are not good enough. On the other hand….

You, MS. COULTER, are not my family. You are not of my world, my life, my heart.

Because you, Ms. Coulter, from your bully pulpit are comfortable enough behind the camera. But have you ever had to face the affect of your insults and disparaging remarks? When you attack public figures, I usually give you some leeway. After all, they are grown-ups who have had to develop a thick skin in order to navigate life in the public eye.

But my child? My child, Ms. Coulter, does not and should not ever be the brunt of your pitiful attacks. Neither has her sister. A sister who knows that calling some one a retard is wrong but not why. You, Ms. Coulter, do not have to explain to your 9-year old that her sister is not retarded but intellectually disabled.

You see, Ms. Coulter, in your complete and utter ignorance, do not realize that when you call our President a retard (which by the way, should be treasonous no matter what your political leanings) you are not insulting him. You are, in fact, insulting the estimated 2.5 million US citizens you do not even acknowledge.

That is the sad truth, isn’t it Ms. Coulter? You do not SEE those who are intellectually disabled. You only see your own agenda and how to get your name in the headlines. Doing it by insulting my daughter and others like her, that is heinous.   

I know the arguments for using the word retard. I have this discussion with friends and family members. I am from the generation where you could call some one “gay” but not mean homosexual. I am from the generation where retard was an insult you called your friends in a lighthearted manner.

But, unlike you, Ms. Coulter, I grew up. And unlike you, I am lucky to have an intellectually disabled child who only knows love. But some day, unfortunately she and her sister will come into contact with some one like you. I fear that day. I fear the day when some one looks at my daughter and sees a RETARD and not a beautiful girl. 

I ask you, Ms. Coulter to look at this face:



and tell her sister that her beloved sister is retard. Because that is what you did when you thought you were insulting the President of the United States of America. 

From a mom who knows better,
Kerri

My Challenge — Lizzi

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

A letter to myself

I’m semi-participating in a Summer Blog Hop Challenge meant to show others how the life with a disability, or with a child who has a disability, is a journey. A never ending one, for sure. But a journey filled with triumphs and some tears. Of course per my usual stickto-break-the-rules reputation instead of starting in week 1 it is now week 3. So today we are starting the journey half-way through with a letter to myself. Even though that was week 2’s prompt


Dear Younger Me,

I was going to write to the much younger us. The one who is upset because our first love left us. Or the one who just met David and thought um….not my type but sure let’s go to dinner. To the younger us who on the eve of her wedding and asked David to elope instead. Or to the new mom to Abby who was scared out of her mind at this thing that wouldn’t stop crying and tell you eventually she would no longer seem breakable. 

Instead I am writing this for you to receive after Boo’s birth. She is now four months old and you are thinking Holy Crap not only did I just get puked on from my neck to my toes I am getting a letter from the future. You are also thinking I’m writing to give you good news except you know us by now and realize maybe not.

First I want to tell you that Boo will survive. You can cry and breathe and rejoice. Now the other shoe dropping on your head is me telling you she will survive but it will not be easy. I am not writing to tell you what will happen. Because no matter what I write it either won’t change things or worse give you the magic answer you are looking form. Rather I write this to the mom of four-month old Boo to give you some advice.


Now you know it is really me, right?

Well here it is:

Never listen to a doctor, a nurse, therapist or school teacher that Boo cannot do something. There will be a doctor or two you will want to punch in the nose, but you will refrain from harming them.  

Pay no attention to someone who says that Boo is just like their daughter/son/grandchild and “will grow out of it”.

Never give up hope. In yourself or in Boo.

Do not ever, for one minute, stop searching for an answer. Do not listen to the doctor who says just accept Boo for who she is. It is too important. You and she need the answers and being an unknown neurological syndrome is not an answer.

Keep Early Intervention. As awful as it is you will need them when she is three. But do not listen to them when they say she does not need Spaulding Center for Children. You are right they are wrong and they will deal with being offended. 

As much as you have to fight to make Boo all she can be, you will spend more time loving her than fighting for her. She will impact not just your life but those around her. Boo is making a difference in this world one smile at a time.  You just have to get through the what seems to be unending puke phase. But I promise it does end.

You know all the friends that say “let me know if I can help”? Here’s the thing they WANT to help. You have to TELL them how. Instead of waiting for them to call you, call them. Say I just need someone to come over and sit with me. Call them and say David’s home do you want to go to the canal with me. Call them and say I’m drowning and just need a friend. Cry and laugh with them. You will be amazed at the support just waiting for you. Your future self knows she waited way too long to reach out. Once you do life will become so much easier and less lonely.

Remember that David is there and he is your partner in this unexpected life. Don’t wait so long to include him in Boo’s therapies (yes, there is more than one). You will be amazed at how well he does.

Lastly, give yourself a break. You are allowed to feel tired and overwhelmed. You are entitled to feel like this just isn’t fair. I promise you that this life becomes easier. You will one day brush your teeth before dinner time. You will one day wear a shirt without Boo’s remains on it. You will be amazed at her journey.

I won’t spoil the good parts for you. Be prepared to be amazed.

Love,
Older (but less tired) Me

PS–oh and don’t worry you will not cave and buy Abby a pony.







My Challenge: Eric

I consider myself very lucky today. I have read a lot about autism from the perspective of the parent, the teacher, the doctor, etc…but today I want to introduce you to Eric. A young man who recently graduated high school and entered the work force. 

My Challenge: Autism

My name is Eric and my challenge is having autism.  Sometimes I have a hard time coming up with the words to say what I am feeling.  Sometimes I think people are acting a certain way for a certain reason and my mom and dad tell me that it is probably not for that reason.
I graduated from high school in May of 2013 and I did a lot of volunteer work.  I finally got a paying job last month and now I work as a dishwasher three nights a week.  I really like that I’m finally getting paid.  I am looking forward to my checkbook balance going up.  One day I would like to own my own car instead of driving one that my mom and dad own.

I like being able to drive myself and get around.  I’ve been driving for two years now and I haven’t had an accident.  I am a very good driver.
My favorite things to do are golf, bowling, watching movies, hanging out with my cat, working puzzles, building models and making things.  I created this marionette puppet out of pipe cleaners.
I thought it was pretty cool and brought it to school to show off.

I need people to be willing to explain things to me different ways so I can understand, but then I am just as capable as any other teenager to do jobs.  I like being useful at home and at work.

It is a challenge to have autism and sometimes I wish I didn’t have it but I am learning to live with it.

************
Wow. Eric. Just. Wow. Thank you for being so cool and honest about living with Autism. How it makes you, well, you but it also changes how the world perceives you. Here’s the thing, though. Almost every one of us knows some one with Autism. They are learning next to you in school but then they grow up. Just like you. They get jobs, they have a fulfilling life.  A person with autism has just as much impact on the world as one who doesn’t, thank you Eric for showing that. And good luck on your new job!

To find more information about Autism, please visit The Organization for Autism Research

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