Friday, May 30, 2014

Why I'm not mad at Toni Braxton

Toni Braxton is facing a lot of criticism over her memoir, Unbreak My Heart. According to E-online, Ms. Braxton writes that she believed her son's autism was "God's payback" for having an abortion.  While many are understandably upset about Ms. Braxton's provoking statement, I think what is being missed in the outcry is she states in her book she BELIEVED. With a "D". 

What parent of a child with special needs has not had that thought? That our child's disability was because something we did? That you might be being punished for something? That you did something wrong? Did you have a cocktail before you knew you were pregnant? Did you scuba dive? Were you a bad person? You and your spouse fought. You cried when you found out you were pregnant.

When Boo was first in the NICU I wracked my brain trying to come up with some reason why. Every time some new worry arises with her I wonder why she suffers. I still am searching to the ends of Google to find an answer. I have blamed myself for not wanting a second child. I blamed myself for knowing that I probably had a glass (or two) of wine before I knew I pregnant. I blamed David, thinking surely something he must have come into contact with at work did this. This thing that no one could explain to us.

If not one parent has ever had that thought, I call bullshit. Yup, I just swore at you. Because it is impossible for me to believe that when told your child had XQZ you handed out cigars and said how proud you were that your child may have to struggle more than others. That not once did you second guess yourself, your doctor, your medical history or your God.  It is easy to blame God for a lot of things. He very rarely comes to the witness stand. He is kind of busy.
Photo Credit: Finding Ninee

He is blamed for war, for famine, why not question him for your child's disability or illness? Or your own. I imagine there are many cancer warriors who wonder why they got sick. What did they do or not do?

In Ms. Braxton's memoir she is recounting her feelings. What she went through as a parent of a newly diagnosed child. I do not agree with everything she states in her book. But am I outraged that she once thought God was punishing her for a decision she made? That she went there and bared her feelings? We might write in our diary, our blog, our book about our feelings and fears. We cry to our friends, our partners and our moms. We go through a period of grief of the child that might have been. That is natural. Am I sometimes fearful that one day Abby or Bridget might read a post I have written and be hurt by it? Of course! But I am also aware that my love for them will overshadow any fears or thoughts I have had, they will read the whole post/entry and not take a line or two out of context.

Did Toni Braxton set autism awareness back a decade with her memoir? Nope. Not buying it. Only if the crazies out there start using it as an anti-abortion statement. I can see it now, don't have an abortion your next child will be punished. Let's face it, there are idiots out there who use whatever sound bite possible to defend their position. Even if there is a thousand reams of information to back up the opposite position. Of course I wish she spent more time talking about how wonderful her son is, how proud she is, how she realizes that autism (or any disability) isn't a punishment. That life with a child with special needs is a life-altering journey. 

But it's not my memoir. 

Most parents would never, ever, tell her child that she wondered why her child was born with a disability. We tell them that they were born perfect. There is nothing "wrong" with them. We lobby for inclusion. We shout from the rooftops our advocacy. 

We believe deep in our hearts that our child is perfect, beautiful, amazing and we are astounded by their will.

But at one moment in time, each and every one of us wondered why "it" happened. Then our hearts grew ten times too large and we stopped wondering and began living. 

At least I'm honest enough to admit it.

Special thanks and a shout out to my friend Kristi at Finding Ninee who drew God on the Witness Stand with three hours notice, never asking why I needed it! And to Tia who pre-read this post and encouraged me to post it knowing others may disagree.

Thursday, May 29, 2014

Throw Back Thursday-Turning Right

Welcome to my version of Throw-Back Thursday, blog style. I'm taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

Tuesday, May 27, 2014

The Box

It started innocently enough. We took Boo to see Frozen. Not once, but twice. She fell in love with the music, the movie and Elsa. When it was available on ITUNES we downloaded the soundtrack and the movie.

Monday, May 26, 2014

My DIY guide

I am not a do-it-yourself type of gal. I semi-joke that is why I am married: I don't have to kill bugs and I don't have to do projects around the house. The bloom fell off that rose very quickly and I now kill bugs. However I have successfully managed to avoid any home projects since the time I picked up a power drill and missed the wall...

Thursday, May 22, 2014

Throw Back Thursday--Comparing

Welcome to my version of Throw-Back Thursday, blog style. I'm taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

Tuesday, May 20, 2014

The joy of language

Boo gives me a lot of atypical milestones, moments, frustrations and joys. Every once in a while, though Boo gives me that typical parent moment when I realize even special children are typical in ways never imagined.

Monday, May 19, 2014

Children's Hospital Boston

Last year our family kicked off the NSTAR Walk For Children's Hospital in Boston.
We have walked every year since Boo was discharged from the NICU. Last year, over 25 of our closest friends and family joined us.

We walk to thank everyone from the doctor to the nurse to the technician to the janitor how makes every visit as painless and comfortable as possible.We walk for the parents who are scared out of their souls that their child is in pain.  We walk for the children who cannot.
Boo in 2011 Walking across the finish line

I am asking everyone to join me this year in supporting the hospital that saved Boo's life. Not once, not twice but every time.

If everyone who reads this post donates as little as $10 you will make an impact on a child's life. Click here to donate

Please consider sharing via Twitter and Facebook.

I thank you. Boo thanks you. Her Brigade will be thinking of all of you when we walk together on June 8th.

Friday, May 16, 2014

I Run 4

I have written before (insert too much!) about the importance of creating a village of support when you have a child with special needs. Heck, even with a typical child a support system should be included with every birth certificate.

Thursday, May 15, 2014

Throw Back Thursday Blog Version

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.

Wednesday, May 14, 2014

The lighter side of Hell

My friend Dana had a great post the other day. I told her I was stealing her idea. She gave me permission, so I am saying that I am not stealing her idea but rather participating in a finish that sentence kind of thing (another steal). There are supposedly seven layers of hell, right? Or is that just deadly sins.

Either way, my personal version of hell would include....

Saturday, May 10, 2014

Thanks Mom

Dear Mom,

It's Mother's Day. The day that only exists because you are my mom. Not to be too self-important but if it wasn't for the children this would be just another Sunday. You would probably be doing yard work or groceries.

Thursday, May 8, 2014

Mom in the elevator

Dear Mom in the Elevator,

I'm sorry. I apologize for leaving so quickly. I saw you and your husband in the elevator at Children's. You were wearing the badge of the NICU. You had hit the elevator for the respite floor. You looked so spent. So wiped. So scared.

As I left with Boo for her cardiology appointment I turned and said, It gets easier.

Then I left.

What happens...

What happens when you begin to lose faith? In perspective we haven't been on this journey long. Five years is nothing when compared to other children's battles. Having a child undiagnosed with unexplained ailments compared being a parent whose child is fighting a life threatening illness is insignificant in comparison.

Tuesday, May 6, 2014

Dear Disney Pop Tarts

Dear Disney Pop Tarts, ahem, Stars,

I like you. I honestly do. I think you are cute. I think you have talent. I think you are doing a great job. There is nothing like watching your previously non-verbal daughter belt out the chorus of Come & Get It by the former princess of Waverly Place. It's even nicer when your older daughter learns about dyslexia because you are willing to be outspoken about how you succeed with a learning disabilty.

But when you 10-year old who thinks Selena Gomez is the BEST SINGER EVER quickly followed by Zendaya, Bella Thorne and the rest of the Disney pop stars asks to buy a poster of her favorite singers, it is a tad alarming.

Friday, May 2, 2014

No interest

I have no interest in being a person who wallows. I do not want to be a blog that focuses on one theme. I think of this blog as my therapy. If I am lucky it is your therapy too because you realize you are not alone.

Whether your child is healthy and ornery like Abby or challenging like Boo or your house has a crazy puppy who is equal parts loving and destroying your house. I want all to feel welcome and to feel a connection.

Thursday, May 1, 2014

Therapy with love

Every month we have "workshops" at Boo's school. It is a time when we get to be at her school for an afternoon and observe her various programs. All of her therapists are there, along with the head of her program. We find it a very rewarding, if sometimes heartbreaking, experience.

It is an opportunity for us to ask questions. To provide input on what is happening at home and seek advice. We are able to see the techniques corrected by the head of the program and adapted in ways to promote Boo's best chance for success.