Sunday, March 17, 2013

The one where my daughter shaves her head

My brave, awesome girl!

March 16, 2013 will forever be one of the most amazing days of my life. That was the day that my 14 year old daughter shaved her head for St. Baldrick's Pediatric Cancer research.  If you don't already know the story behind this amazing thing she did- you can read it here, Would YOU shave your head for a great cause?

How many teenage girls would do such an amazing thing? I mean- 14 years old, a freshman in high school, at a time in her life when girls are usually obsessed with their looks, wanting to fit in, and dealing with the hell that can be high school?  Frankly, I am still kind of surprised she went through with it. But she did, and now I am in absolute awe.

This is really something to be proud of, for everyone involved. Everyone should be proud of the very brave folks who got into those   barber chairs and then allowed strangers to shave their heads completely bald with hundreds of people looking on.  This is a HUGE thing to do, from the men who may not have a lot of hair (I also saw a lot of beards getting shaved off!), to the young kids who aren't as concerned with what they look like yet. But most  especially for the women and girls who shave their heads.  It is a powerful statement to make to the children currently battling cancer, and have no say in losing their hair. and to those who love them.
It was an exciting day full of emotions for everyone. Our team, Donna's Good Things Michigan raised almost $4000, and Teenzilla raised $1150 of that.  The event, St. Baldrick's of Romeo MI raised over $230,000 this year, and has raised  raised over $760,000 in just six years of hosting events for St. Baldrick's.  This year there were 520 shavees....520!!!   It was a literal assembly line of people shaving their heads.  It was HUGE!

The story behind the pink spots on her head: Mary Tyler Mom had made a comment when we first began this journey, and my Teenzilla had hot pink hair, that "Donna would have been enchanted with her pink hair" Since that pink was long gone- Teenzilla was ADAMANT that we do a quick dye job before shave day. I di my best to keep the dye of her scalp, but failed in spectacular fashion!   Between baking soda and peroxide, she has gotten most of them off now! But it has been a HUGE source of questions. So now you know! 

Meeting Mary Tyler Mom 
Teenzilla was amazing through it all. She brought a friend with her- which was so great- I think that really helped keep her calm and they danced to the music playing, and checked out the cute boys. ) And when Mary Tyler Mom  showed up- wow! Teenzilla was so excited to meet her, the mom of the beautiful Donna who was her inspiration to do this, and when I found her and said "She's here!" , Teenzilla's face lit up like Christmas and she rushed to go and meet her.  After a big hug, MTM presented her with a "Swag Bag" and the most heartfelt thank you I have ever heard.

When they called her time (3:27) to come to the staging area, I went with her and the captain of our team, Danielle, to get in line. When it was time for me to walk away, I lost it. I started sobbing, hugged them both so tight, not able to put into words how proud I was of them. Not since each of my children made their entrance into the world have I felt so overcome with pride, and emotions. I seriously felt dizzy with all the feels. There are no words to describe it.

When the time came for her to climb into that barber chair, I was shaking, crying and laughing all at the same time. Then came the next huge moment I will never forget.  A man told us that she was amazing, and how he had lost his young daughter in September and how proud HE was of our daughter for what she was doing. Again- the flood of emotions that came over me was literally staggering.  I lost my mom to cancer, but I have no idea what it means to move to "Cancerville" as MTM says, and to lose a child. I call myself a warrior mom, dealing with autism, but these parents, and kids are true warriors.

Teenzilla goes back to school tomorrow- and she is nervous. Even though a lot of people knew she was doing this- it will still be a shock to see her beautiful bald head.  I will be nervous for her, and have already told her if she needs me to come get her- I will be there in a hot minute.  But, I don't see that happening. This kid of mine is one of the strongest people I know.  When I asked her how she felt about what she did she replied, "Pretty damn awesome, mom".  I think she  is going to be just fine.

Love this look!


Monday, March 11, 2013

Holy crap! My daughter is shaving her head!

You know a year ago, when my Teenzilla said she was going to shave her head for St. Baldrick's, raise money for pediatric cancer research, and in memory of Donna Hornick, I indulged her. As parents we all do this, our kiddos say they are going to do something BIG, or something CRAZY and we smile and humor them, knowing that the fancies of kids, especially teenagers are fleeting.

Now we are 5 days away from the shave event, and she has not wavered once. At least not out loud, or in front of me. Her conviction is strong, her ideals are overwhelming, and her passion is that which only teenage girls have.

But, until the other night, when talking to my dearest childhood friend, I had not thought about how I felt about it. Other than knowing without a doubt that I could never do it, I have only really felt fierce pride in my girl. But now it's stuck in my head, all the feelings that I have not even thought about. My baby girl is going to be BALD.  BALD. A part of me cringes at the thought of my very pretty daughter not having hair- I mean, isn't hair one of the ways how we females define ourselves. If we have a bad hair day, it really puts a damper on the rest of our day. If we get a bad cut or color, it really upsets us. Unfortunately, we live in a society that bases everything on how we look. If we are overweight we must be a slob. If we choose not to wear makeup we must be a hippie. If we do something out of the ordinary to our hair (like when Teenzilla went shocking pink) there are stares and judgmental asshats to contend with.  And being a teenager?? In high school?  Fuggedaboutit.

I have been told "I can't believe you are LETTING her shave her head. she is going to be teased so badly"  Letting her?? No- this is HER decision. This is not some whim of a fickle teen girl- this is for an amazing cause, something bigger than she is. It takes guts and heart to do what she is going to do. It's amazing, it's life changing, and not only am I "letting" her do it, I am her loudest supporter! But there is the part of me that is scared for her, and worries about any teasing or bullshit she will have to endure. She is a strong kid, a good kid, but I don't know if she has, or if she is even able to really process what going bald means. Aside from the amazing sense of doing something awesome that is.  I don't pull any punches- I have told her repeatedly, people are going to stare. People will make comments, and not all of them will be nice. She says "Bring it on". I hope that attitude stays intact- she's gonna need it. I am very nervous about the reactions, and most of all, how my girl will handle it. It's gonna be hard. Oh- and did I mention she is also in the schools Spring production of Cinderella?  Yeah- she is going to be in the spotlight- shiny bald head and all. Well- she will wear a wig...but still!

I have caught myself reminiscing about her hair when she was little, long, curly and beautiful. She cut it off in first grade for Locks of Love, and I cried. Not in front of her, and I cried not only because she cut off all her hair, but because even at the tender age of 6, she had a big heart. And....she wanted to have a haircut like Dora the Explorer! I have always been the mom who encourages trying different things, from wardrobe to hair. Especially hair, after all, it does grow back. And I can't say I have loved every hair decision she has made, but I raised her this way- and she is her own person- and a damn good one at that. I get compliments all the time, what a great kid I have, and what a great mom I am, having raised such a great kid. And I will take credit for raising her to be the way she is, but she deserves the lion's share- she is not a little girl, she is a beautiful, funny, smart young woman who made this choice all on her own.

Today, I had a comment on my FB page- and I just have to share:

A year ago Jan, I had to shave all my hair off for a brain surgery. My hair was to my boohiney, I braided it, cut those 5 thick, long braids off & donated them as the clippers inched their way over my scalp, I felt a new me emerge! At first it felt like my identity was being stripped from my grasps, I felt naked, vulnerable & honestly, a little lost! I think it was harder on my best friends than it was for me! Then a saying came to mind as tears were streaming down my face "If you don't like something...Change it...if you can't change it...Change the way you think about it!" That's what I did, changed how I thought about it! I began to think of the process of the wigs being made, the ladies that would receive them (I had THICK, long hair so def made at least 2 wigs! ), how it would effect their lives forever & suddenly I had peace! Sure people stared at me where ever I went, women (most of them!) were THE worst & the men were surprisingly wonderful! I received A LOT of compliments & support! Im not sure why Teenzilla is shaving her hair, sounds like its just for donating it & that is plain AMAZING!! I want to thank you, as her parents, for raising such an AMAZING daughter!! Thank you! As I would tell myself, its just hair & it grows back! It did in fact change me, it strips you down to your core & thankfully I had been working on myself in order to become my best self before having to be naked, vulnerable & bald in front of the world, I was taught to be comfortable with WHO I am not the identity of my long, thick hair! Bald ROCKS!! Rock it out Teenzilla!! I will be bald agn soon, another brain surgery, you what tho! I GOT THIS & BRING IT ON!! P. S. she will be really cold, a friend made me the best beanie ever & it became my favorite accessory! Go beanie shopping before or make one with one of those knitting looms (WalMart $13) and she can pick her color of yarn! Rock it out Momma & Teenzilla! YOU got this & BRING IT ON! Much Love! -Nicole Johnson

While she is not donating her hair, the money she has raised, that all goes back to St. Baldrick's and the solidarity for those who don't have the choice to go bald or not- it's mind boggling to me. 

And once again, I have to thank the indomitable Mary Tyler Mom for sharing her beautiful Donna's story with us.  The sad reality that is childhood cancer, and the lives taken much too soon has a face, a name, a story, and is not just another sad statistic for us.  It's amazing how one family's story changed our perception in such a huge way.

Please check out the links here, about St. Baldrick's, about Teenzilla  and share!

St. Baldrick's
I'm shaving my head!
Rylee's Donation Page
Michigan's Team Donna's Good Things

Friday, March 8, 2013

Bring on the IEP!

Springtime brings a lot of wonderful things, sun, new beginnings,and  longer days just to mention a few. If you have a child who receives Special Ed services in school, it is also IEP season. That time of year when you sit in a room, surrounded by those who are supposed to be helping your child be all they can be, reviewing goals, setting new ones, perhaps transitioning to new schools (like we will be- middle school YIKES).  The IEP is supposed to be an  opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. If you are lucky enough to be working as a TEAM and not fighting tooth and nail for any and all accommodations your child needs. 

Courtesy of
I remember the first time I  walked into a meeting room filled with those who proclaimed to know what was best for The Boy (educationally speaking anyway) and feeling intimidated and so much  like the awkward girl that wanted to sit at the popular kids table, to the most recent encounter when I went in to do battle and was caught off guard at how easy it was to present MY goals and not be met with "we know best" attitude. Of course that was all blown to hell at the beginning of the year when I found myself fighting for the mainstream instruction that had so readily been agreed to just a few months prior.  It didn't take me long to learn that miles and miles of red tape surround our special children's education, and that really, the IEP really is a bullshit document. Oh sure, it's "legally binding" but the loopholes and confusing language really work in favor of the school and the district- NOT your kiddo. 

You never REALLY get what you think your   child needs and the services never seem to be quite enough. 

This is supposed to be about the CHILD's education,and the fact that kids CAN learn, and need to be challenged,  not written off, assuming they can't do something without ever trying.  It's not supposed to be a PRE-WRITTEN document that they slap down in front of you and then rush through everything and hand you a pen to sign it.  

It is supposed to be a commitment to a child, MY CHILD... not a number, or a budget. The living, breathing human being who has unlimited possibilities if given the proper support and tools. It shouldn't have to be this hard to secure our children a free appropriate education. 

I have followed all the major rules for successful meetings, and for a couple of years, I actually was happy to go to the meeting, talk with everyone and would leave feeling like things were accomplished, that The Boy was in good hands, that my concerns and ideas were listened to, and there was no pressure to sign a document if I had ANY kind of reservations. That changed when we moved The Boy back to his home school district  Great schools, if your child is average to above average.  Great schools if your child will do well on standardized tests. Not so great for the child with Autism. 

The biggest argument we have had the last two years is the argument for inclusion. Children with special needs CAN be accommodated within a regular education classroom. In our case especially. The Boy is high functioning. He has been shielded for so long, not given the chance to grow his potential. The lack of faith from teacher's and unwillingness to push him just a little bit harder has him doubting himself and his capabilities. The truth is ALL children benefit from the experience of an inclusive classroom, including the reduced child to staff ratio that makes it work. It's possible. And, it's right. It breaks my heart that there are thousands of children all across America being treated as second-class citizens because they are different.  They are in "special ed" they are "weird" they "can't learn". It's all bullshit I tell you. 

This year- we will be discussing the transition to middle school. I am beyond worried for The Boy. It is going to be a HUGE shock for him. The homework, the expectations- I foresee many, many meltdowns.  I have A LOT of info I am going to be breaking out, accommodations that I will INSIST on- and will sign NOTHING until these things are included.  Things like a "Early Pass"- getting to go to his next class just before the rest of the students, to avoid stress and bullying. A "safe place" to go in case of sensory overload. Reduced homework, use of the AlphaSmart, or the opportunity to use computers and printers for assignments with a lot of writing.  These are just a few of the things I will be insisting on.  Well, those and a big bottle of wine. 

Friday, March 1, 2013

Celebrate Donna Day 2013 with me!

This smile!

When I found Donna's Cancer story, I admit- I didn't want to read it. Not at all. I knew it was out there, I saw links to it every day in my Facebook news feed, but I didn't want to read what was sure to be a heart breaking, sad story. 
As I looked at my own kids, I told myself that I could never endure the story of a beautiful little girl living through 31 months of cancer treatment and the pain her family endured. I didn't want to get to know this family, only to lose a precious member of it. 
The day came, when I decided to just start reading. I had already saw several re-posts on my Facebook of  number 16 Relapse, and I started reading. And I didn't stop until I was caught up. And   And I cried. Ugly, snotty crying. And I kept reading, stopping only when I couldn't see the screen through my tears.  
 I have never felt such a connection, to Donna and to her family who until that day, were total strangers to me. Just another sad story of a child with cancer. But it was so much more.  I was blown away by the raw, honest beautiful way Sheila, aka Mary Tyler Mom, wrote about her daughter, her family, her fears, her hopes. This was written TO me, FOR me. This was written in such a way, I felt like I had been sitting with Sheila having coffee as she told me this story. That is powerful my friends.
The feelings evoked in me after reading Donna's story ran the gamut from sadness, to hope, to anger, to fear and to guilt. Guilt that my kids would be home for me to hug them, guilt that I complain about dealing with autism, about teacher's and IEP's. The same guilt I sometimes feel when I read a blog written by a parent dealing with a child who doesn't speak, when mine does.The Boy is autistic.He is not like the other kids. He may be a 7 year old in a 10 year old body. He may be wild, unpredictable and sometimes make me want to scream. But I get to  hold him every day. My struggles are a cake walk in comparison to what Sheila's family lived through, what Donna endured.  I was extremely humbled by Sheila's words in installment 30 Choosing Hope:
"When all of this began so long ago and I first typed the  words 'choose hope,' my guess is that most folks assumed the hope was for Donna's cure.  If I'm honest with myself, it probably was for a time, but as much as that mantra is for Donna, it was for me as well.  To remind myself that hope comes in many forms and, more importantly, it is a frame of mind, a choice one makes.  For so long, and to this day, it is the only way to live.  Without hope, how would I wake up in the morning?  Without hope, how do you continue to be with Donna, laughing and playing and so brightful, knowing that she will be gone much too damn soon? "
It is completely amazing to me how Sheila's family fought. How in the midst of it all they welcomed a new life into their family. How they coped,how they survived,how they “chose hope” in the face of such despair.
After hearing her dad and I talking about this amazing blog, my Teenzilla decided to read it too. Her reactions were filled with all the vehemence and anger that only teenage girls can muster. "F**K CANCER. What bullshit!"  
My Teenzilla
It was around that time that I first heard of the St. Baldrick's FoundationSt. Baldrick's began as a head-shaving event and continues to be the signature event of the Foundation. "Shavees" ask friends and family to make donations "on their head" and in return, they attend one of thousands of volunteer-organized events around the world where they have their heads shaved in solidarity with kids fighting cancer.mSince 2000 more than 230,000 shavees—including more than 22,700 women—have shaved their heads at 5,500 events, raising critical funds for childhood cancer research. 
I watched as several of my friends made their way to Chicago last year, and prepared to shave their heads. I donated and cheered them on. I followed their blogs and their Facebook pages. And I shared all of this with Teenzilla.  She looked at me after seeing all the pictures of the newly bald, and said, "I want to do that". I chuckled, and I said, yeah, right. She looked me straight in the eye and said- "I am serious mom. So many kids have to go through chemo and lose their hair and they don't have a choice. I want to do this. It's just hair. It will grow back."

I told her that I would support her 100% if she wanted to do this, but secretly I thought she would never do it. The next event was a year away- that was a lot of time to think about it. And being a fickle teen girl- I expected her to forget about it, and then change her mind.  
And now here we are, 17 days away from the event, a little over $1000 raised by her, just over $2000 raised by her team, Donna's Good Things Team Michigan and she, while a little nervous, is still as determined as ever. If I could bottle that passion- I would be a millionaire! 
What I need you to do now is: 1)READ DONNA'S STORY!  Statistics are scary- this story will make you see beyond the statistics, into the life of an amazing family, and a very precious little girl. You will BE in the hospital rooms with them, you will SEE Donna's gorgeous smile and amazing blue eyes, you will KNOW her love to dance, you will FEEL all the feelings. Do it. 
 2) Please please please visit, Donna's Good Things at Candlelite Chicago, and click on the GREEN BUTTON  to donate. $5, $10- it is ALL helpful and goes to an amazing cause.  
3) Watch this wonderful 3 minute video

4)Watch Donna's Radiothon story Song...