Friday, May 9, 2014

Mother's Day...Get it together family!

Mother's Day. A day to honor the person who gave you life, the person who knows where everything is all of the time, the person who selflessly gives up so many things to make sure her family is happy, safe and feels loved. But flip that coin, and you can get a bitchy side. And I fully embrace my ungrateful, whiny, bitchy side when it comes to this day. For years, I smiled and gushed about how I loved the homemade gifts and home burnt, I mean, cooked breakfasts. I truly cherished any effort made to make this one day a year special. But as my kiddos have gotten older, I have noticed there is no thought, no pizzazz, no EFFORT in doing something special for me on MY day.

I am my family's EVERYTHING- as most mom's are. I am the cook, maid, chauffeur, doctor, lawyer, teacher, warden, confidant, laundress, advocate and cheerleader. I go to every meeting, school function, concert, play, you name it, I do it. I know right where that shirt you NEED is, and I will stay up late to wash it too. I do all of these things and so many more, and I do it because I love them with every fiber in my body, they are my sun and my moon, forever.

They know what I want on this ONE day to honor me. I like quiet. No video games or sports (unless I choose one of them) playing on the TV. No laundry or cleaning. No fighting among kids. Maybe take me out to breakfast or brunch. Or let me stay in bed all day if I choose with NO INTERRUPTIONS. Make me a mimosa. Or three. A day trip to the spa- now you're talking. But I most definitely do not want:

1)A burnt, partially cold breakfast in bed. First you woke me up. Second, you made a huge mess. Third- I don't like eating in bed. The flower/weed from the yard does not pretty up this disaster. So thanks, but no thanks.

2) Asking me the day before what I want. If you haven't at least THOUGHT about Mother's Day prior to the day before- just forget it.

3) Anything that implies household chores. Vacuums, pots and pans, a 50's style apron. Nope, nope and nope. Save that shit for birthday and Christmas.

4) Jewelry. Yeah- you heard me. I wear my wedding ring, occasionally earrings if I can find a matched pair. But I don't need or want anything else. Now- get my wedding ring cleaned- that would be appreciated.

I would enjoy a day of chillin with the kids- binge watching something on Netflix, taking random naps- and not being responsible for anyone's meals, laundry, or have to play referee. Don't ask what needs to be done- just do it. Don't make snippy remarks to antagonize someone, and don't be sarcastic with The Boy who doesn't get it anyway, and ends up in meltdown mode. Don't ask me where ANYTHING is (unless it is my empty wine glass- I will be happy to point you in that direction) and don't begrudge me MY day. I love you all, and am grateful to have such a beautiful,wonderful family. Me getting a day "off" won't change any of that.
And please- don't forget- this is my 12th Mother's Day without my own mom. I miss her every day. This day is one of the hardest. I might be kind of weepy. Don't ask questions, and don't make a big deal of it if I burst into tears and run upstairs. It will pass. Just have another glass of wine waiting when I return- and everything will be just fine.

Friday, March 7, 2014

Screw you Daylight Savings Time!

It's that time of year, the time when we "spring forward" and gain extra daylight, anticipate the arrival of spring and most importantly LOSE AN HOUR OF SLEEP! In an autism household- sleep is a precious commodity, one that is horded like fine jewels or our favorite wine.  Nighttime wanderings, odd sleep schedules and the like is something that most parents with kids on the spectrum endure. Melatonin is the Autism parent's best friend. But when those clocks change-  at either time of the year- it can send our kids into a tailspin that can take a while to recover from.

The Boy, like most autistic children, NEEDS structure and routine. He doesn't like abrupt changes in plans, although as he gets older that seems to be getting a little better.  But when things don't go as they should- in his mind anyway- it is prime time for massive frustration, irritability and possible meltdowns. The time change   is not just an inconvenient part of life for him. Having extra daylight means absolutely nothing to him. The clock on the wall and his internal clock are now different. While his body (and the Melatonin) are telling him one thing- his dad and I are telling him something different- and it messes him up. 

In years past- the time change has been a source of agitation for the whole family. We have to adjust dinner time, medicine time and try to ensure that the first day of the time change he is resting, relaxing and hopefully prepared the following morning for school.  I can't count how many all nighters we pulled (melatonin and Clonidine would get him to dreamland, but would not keep him there.) He was moody, over tired, and not a joy to be around at all. Our lack of sleep made us just as irritable, and of course that made life just all around miserable for everyone. 

This year, like every other year, we will spend Sunday just relaxing, keeping things quiet and make the adjustments that are needed as unobtrusively as possible. This may help, it may not. Monday is also a delayed start at school, so that may help. 

That doesn't mean that the anxious knot in my belly is getting any better. And all of the worse case scenarios are playing on a loop through my sleepless mind. Not like I don't have enough to keep me awake at night, like the impending IEP, some odd behaviors we have been seeing lately, my work, my school...the list goes on. 

I hope that we have an easy transition like we had 2 years ago, and even last year wasn't the worst. We prepare for WWIII at all holidays, family gatherings, family outings and yes for Daylight Savings Time.  Prepare for the worst, hope for the best- my life's motto. 

I think that maturity plays into all of this, and the older he gets, the better he handles unexpected (or even expected) change. He lives by his calendar, and announces any and all holidays on it. So he is aware of DST, and aware we all lose an hour of sleep. And so far, nothing negative. 

Now if only Mother Nature would cooperate, and stop with this polar vortex and snow crap- then we could truly feel like "springing" into anything. 

Tuesday, February 25, 2014

What day is it? Donna Day!!


It has been 3 years since I read Donna's Cancer Story. In that 3 years I have learned more than I ever want to know about childhood cancer. And by that I mean the things that someone on the outside rarely, if ever, know. The fear, pain, and anger that I can't even fathom. The daily minutiae of caring for a child with cancer. But the one thing that has stuck with me is the HOPE. The hope that Mary Tyler Mom keep alive, despite the fact that she lost her beautiful Donna to the evil that is cancer. Through her pain and sadness, this hope shines through. In her words, in her deeds, and in her daily life. Some days, that light might be dimmer than others, but it doesn't go out. THAT is strength folks. That is amazing.


This time last year, my Teenzilla was preparing to shave her head for the St. Baldrick's Foundation, which began in March, 2000 as the annual reinsurance industry’s St. Patrick’s Day party, held at Jim Brady’s pub in Manhattan. The goal of shaving 17 heads and raising $17,000 turns into 19 bald heads and $104,000 donated to fund the research of the Children’s Oncology Group. 

It was an emotional roller coaster, raising the money (over $1000!) and the event itself.... wow. At the time, Teenzilla was 14, a freshman in high school, and as passionate about what she was about to do as only a teenage girl can be! Mary Tyler Mom and Mary Tyler Son came from Chicago to cheer Teenzilla and her teammates on, and that too was an absolutely amazing gift- getting to meet the woman who's daughter had inspired my girl to shave off her pink hair in Donna's name

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 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. 

My baby girl rocked her bald head, and the kids and staff at the school were incredibly supportive. I am still in awe of what she did, such a beautiful, selfless act, it's simply amazing. And what a difference a year makes!                                                      
                                                        Photo: Wow!! In 3 weeks it will be a year since the St. Baldrick's shave!!

It's a year later, the hair is grown back,  and she still talks about her experience, and has said she wants to do it again- after graduation! 

In celebration of Donna Day 2014- I am asking YOU, dear Wino's, to help out. There are many ways for you to be a hero to kids and their families battling cancer. 

1) CLICK this link-Donna's Good Things  It will take you to the Donna's Good Things fundraising page. Donate $5 or $500- EVERY bit helpsSt. Baldrick’s Logo
St. Baldrick’s Logo

Donna's Good Things at Candlelite Chicago Logo                      

3) Buy one of these super cool shirts! I know that many of you share my like for superheroes and all things geektastic- Teenzilla and I both have one of these shirts, and they are very cool, and definitely attract attention- Marvel Super Heroes Save Lives 

4) Go to the St. Baldrick's Foundation website and read about their mission, their accomplishments and the creative ways they are funding research for pediatric cancer. CLICK this link- St Baldrick's

5) Find a shaving event near you and SHAVE YOUR HEAD!!!

Mary Tyler Mom's family has grown, and they adopted Mary Tyler Baby just last year. And even though Donna has been gone longer than she was here, her story and legacy live on in her mom, dad and two brothers.  Life does go on. 

 Remember MTM's mantra- Always, ALWAYS choose hope.  Hope will help you make it through.