tHERsDay: Prepping for Prom

Tomorrow will be CB's last prom. 

It will close a week of flying solo on the home front. A busy week filled with work, multiple doctors appointments for me and CB, after school activities, middle school orientation, buying and returning 600 prom dresses that didn't work, and CB's shenanigans like escaping the house in the early morning with no pants on... breaking plates... having seizures... not sleeping through the night...you know. The usual.

But tomorrow is PROM so none of that matters!!

It will be bitter sweet.

Her first prom was MY first prom. When I reminded my husband of that, he looked at me and said "I didn't know you were such a loser!" Of course, he was joking.

Truth is, I was a total loser straight through high school. Who cares? It was seven years of my life. Thank goodness no one asks you for your popularity score at a job interview, on a date, or when embarking on a new friendship as a grown-up!!

And, guess what? I have attended six proms since my "loser" days with the best date I could ever ask for. I guess that makes me a winner... in more ways than one. 

tHERsDay: The Devolution of an IEP Mom

Today was CB's very last IEP meeting. The last one I will attend EVER. 

I've been going to these suckers since she was three. At least once a year. Every three years, twice. 

So, here's the evolution - or devolution - of me as the IEP meeting Mom. When I first started attending these things, I was a 29 year old overwhelmed mother and full time graduate student. I'd sit with my pens and legal pad, ready to take notes. I'd read everything prior and think of questions to ask. I was on top of my game and ready to take on the world. 

Then, these meetings just became rote. I'd lug my other little ones with me and they'd color while the Child Study Team and I talked. It became a social time, actually. She had the same teacher for many years in a row, the same therapists, the same administration. They all watched my kids grow up. They watched CB grow up. 

I never missed a meeting in 18 years. Until today.

Her Senior Exit meeting. The final IEP of my life, and I never wrote it on my calendar. I freakin' MISSED IT like a giant idiot.

So....Yeah. 

It's been that kind of week. Don't even get me started.

Well, 18 years of IEPs have come to a close. I mark this monumental day by leaving her team sitting and waiting and wondering if I'll ever show up. Like the awesome Mom I am. 

It's kinda funny when I think of how I rolled into this new world and how I'm rolling out. 

Well, CB... I guess we both have a case of Senioritis. 

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CB with her babysitter of over 10 years. 

I guess you could say they've become buddies at this point. 

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CB got her summer haircut and was able to donate 9 inches to 

Pantene's Beautiful Lengths.

     

A special thanks to Patti who is an aide in CB's classroom (with a background as a hair dresser) and offered to cut her hair right there in school. She, along with the whole staff, are simply incredible. These small gestures of kindness make life so much easier!

               

I love it!

I think CB loves it too!!

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It's nearly impossible to believe that someone is turning 20 this weekend.

Unbelievable.

tHERsDay: The Guardian

I triple check the forms, finding and correcting errors, re-reading the long and complicated directions for the umpteenth time. When I am finally (relatively) certain I have done everything correctly with the pile of paperwork in front of me, I secure the stack together with a paper clip and write a $200.00 check to the County's Surrogate Court. I have spent a total of four days on the paperwork alone - two hours just this morning in review. The entire process of just completing "Step One" has been two years in the making, 99% of that time due to procrastination.

As suggested, I am hand delivering the paperwork instead of sending the packet certified mail. I make the 20 minute drive, a straight shot down a busy four-laned pike filled with lights and lined with endless strip malls. I am a little edgy, almost nervous, and slightly sad... all of which are very silly emotions to have over filing paperwork. Perhaps it's because anything to do with  the legal system makes me nervous. Even when I see a cop car, or walk through the security detectors positioned at the doors of retail stores, I get a case of the cold sweats. Maybe I always feel like someone is gonna see right through me and know I'm not as good as I seem. Or maybe, I'm just weird.

I park around back and try two different entrances before finding the right building. I get my purse searched and walk through the metal detector (cold sweat!) then head for the Office of the Surrogate Court. This is the place where you go for a great many things, one of which is to petition for Legal Guardianship of your adult daughter who cannot make decisions as a fully emancipated adult. I am here, weeks before her 20th birthday, to start the process of taking away all of her legal rights to make any decisions. I will forever be her decision maker. Plenary Guardianship, they call it.  The fact is, if I don't do this, she is screwed... because she can't make any decisions for herself. So I'm doing what I should have done almost two years ago. I haven't done it yet because it's a long, complicated, daunting, somewhat expensive process.

I haven't done it until now because above all, it just makes me sad. Not that surface sad, like "Oh yeah, that's sad."  It's like a deep, deep, profound sad. The sad that sits in a pit of unresolved grief. The sad that has no bottom. The sad you never acknowledge you have until you're standing in the waiting room of the Surrogate Court with your stack of papers and your sweaty palms and your $200.00 check and your goofy fake smile and your string of dumb questions that are just filling up the space between you and the nice administrative staff who assures you that they will call if they have any questions.

Step One is completed. The papers are filed. Soon, I will receieve a certified letter with a hearing date and yadda yadda. I try to feel a sense of accomplishment for this huge milestone, but all I feel is a little empty.

I drive back home and half way there I figure I'm probably going to start to cry - and almost do - but then stop myself and just decide to turn up the radio and sing some stupid pop song out of tune instead.

tHERsDay: Shades of Blue

It's been a human rainbow around here the past few weeks. I was wearing purple for epilepsy, then I was wearing crazy socks to support my buddies for Down Syndrome Day. For months I've been wearing a pink Bravelet for breast cancer awareness. Now, today we gotta rock the blue for World Autism Day.

I'm not necessarily 100% behind the Autism Speaks mission (creators of World Autism Day from what I gather), but I appreciate any type of rallying. If that means lighting sh*t up blue, I'm not gonna be a downer. I deeply appreciate all the companies and organizations that have been on board. If we can continue to raise awareness, increase funding and help support families, children and adults living with ASD, that is cool by me. A little show of solidarity never hurt anyone.

So, CB lit it up pale blue today with a sweater matching her eyes. Here's to World Autism Day... which is every day 'round here.  So, we just continue on - business as usual. Showing the world every shade of our blue.

tHERsDay: Purple Day

Today is Purple Day for Epilepsy Awareness.

So here are some things I'd like to share:

* There are TWICE as many people living with epilepsy than people living with Multiple Sclerosis,  Cystic Fibrosis, Muscular Dystrophy and Cerebral Palsy combined.

* Epilepsy has no cure.

* The medications used to control epilepsy have nasty side effects.

* Often, epilepsy cannot be controlled, even with meds.

* At least 1 million people in the U.S. have uncontrolled epilepsy.

* 1 in 25 children under the age of 5 will have a febrile seizure (fever related).

* You can die from epliepsy. Risk of SUDEP (Sudden Unexpectant Death In Epilepsy) kills about 1,000 people each year. Another 42,000 die secondary to prolonged seizures, or Status Epilepticus.

* People don't swallow their tongues during a seizure. Please PLEASE never stick anything in a person's mouth during a seizure. Learn More About Seizure First Aid HERE.

* Seizures suck. There is no silver lining on this. Sorry.

This has been a Purple Day Public Service Announcement on behalf of CB and the 62 million individuals world wide living with epilepsy. 

Thanks for reading!

tHERsDay: My First Little Valentine

Nearly 20 years ago, when I fell in love for the first time.

I've fallen more times since then, but she will always be 

my first, precious little Valentine.

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Tomorrow is the big day - surgery day and the first major step in becoming cancer free! By this time tomorrow, I will have hit a major milestone in the recovery process. Though I'm not looking forward to the actual surgery itself, I AM looking forward to closing the door on this chapter. 

Plans have changed a little. I have breast cancer in my right breast, but a biopsy of a suspicious area in the left  indicated that I had something called Lobular Carcinoma In Situ or LCIS. Though it is NOT breast cancer, it is a cluster of abnormal cells that increase a woman's chances of developing breast cancer from 12% (average woman's chance over a lifetime) to a 40% chance. So, since I'm going under the knife anyway with the right sided lumpectomy, my surgeon suggested that she excise that tissue from the left as well. It makes sense and hey, it beats having to go back in again later! So, basically, I'll have two lumpectomies so both sides can feel nice and even!

I was at my pre-op appointment a few days ago down at the cancer center. After it ended, Dr. Fabulous ducked off to the restroom while I finished checking out with the administrative staff. On my way out to the lobby, I passed a woman not too much older than me with a scarf wrapped around her head. She was talking to the front desk woman and I heard her saying "I'm so blessed. There are so many people who have it worse."

I smiled to myself, knowing that this woman obviously has been going through chemotherapy (a bullet I have dodged) and likely will go through radiation too. I was smiling in appreciation of her gratitude despite her circumstances. She sounded so sweet and upbeat it almost made me cry because I would have looked at her and felt sorry for all she had to endure, seeing that scarf on her head. "It could be worse," I would think to myself." "I could have to go through what she is going through."

Dr. Fabulous wasn't back in the lobby yet, so I ducked into the restroom too. When I emerged, he was sitting there staring across the room with a face full of emotion and a sad smile.  

"What? What's wrong?" I asked. 

He shook his head and said nothing, but he still had that look.

"What?!?" I pressed. 

He told me that the woman across the room with the scarf on her head was with her young adult daughter who had Down Syndrome.

I glanced over nonchalantly, and it was her. It was the same woman who I overheard talking about how blessed and lucky she was and how many people have it worse. She was a caregiver to a disabled child.

There were no words at that point. 

There still are no words.

All I can think of is this. That in some way, being a caregiver to a child can sometimes tear you down, challenge you, exhaust you. Yet, at the same time it makes you a fighter. It makes you less concerned about yourself because you are so concerned with another. It makes you find humility and gratitude in the little victories embedded in the bigger stressors. 

So, even today when I got that phone call about the surprise of an additional surgical procedure? I went through a myriad of emotions but landed on this - there are so many things someone can hear, and if this is what I hear? I'll take it. I'll take it, run with it, be glad that this is all I get right now. And I'm grateful for everyone and everything that has made me stronger along the way. 

Tomorrow is game day. Look out cancer, you are getting your ass whooped. I take no prisoners. 

tHERsDay

"Sisters function as safety nets in a chaotic world simply by being there for each other." - Carol Saline

~~~~

CB with her two smallest sisters sometime after Christmas. Rella and Tink sometimes struggle with connecting to CB, much more than Pink does. Pink was just born knowing and it came quite effortlessly. The two smaller girls? They're finding their way toward a deeper connection. 

As they grow they are learning that love has many languages and sisters have many roles. They're finding their way to each other's hearts... slowly, surely, eventually. They're finding their way. 

tHERsDay: O, Christmas Tree

CB spent the Thanksgiving weekend with her Dad and grandparents in Maryland. We waited until her return to trim the tree.

I haven't spent Thanksgiving with her since she was 8. It's ... I don't know. It's not ideal. It is what it is. It feels a bit more relaxed when she is in Maryland with the other side of her family. I'm not going to lie and say that her absence doesn't come with a little bit of a lightened load around here. But with the lightened load comes a bit of a heavier heart.

It is what it is. I'm glad she was here for the Christmas Tree Decorating.

Though she doesn't take part in hanging any ornaments, she seems to enjoy being in the room with us and soaking up the holiday energy.

The other girls take turns hanging CB's ornaments on the tree. They know she will attack the tree every day from here on out and there will probably be at least one broken ornament at her hands.  But for this one day, the tree is decorated and lit without incident.

All is good, merry and bright. I even got several shots with all four kids looking at the camera. Unprecedented.
A blessing, each and every time it happens.

 Oh yes. A blessing.

tHERsDay: 44 Staples

The dermatologist came in quickly for the procedure. He had only met CB one other time, but she was obviously memorable. Routine biopsies from her annual dermatology visit revealed that one area on her abdomen was pre-cancerous and needed surgery. The surgery for a mole half the size of a raisin involved cutting an inch and a half long, half inch wide area of porcelain tissue from her body, dig down deep and remove all the layers then stitch her back up. I've had it done and it doesn't hurt, but it leaves an ugly scar.

It doesn't hurt but I'm not CB so I understand. CB DOESN'T understand. She's already aware that something is up by her reluctance to enter the room. She hates laying on her back but unfortunately that is the position in which she finds herself, a nurse at her head, a nurse and I at her feet and a doctor leaning over her with hypodermic needle in hand to numb the crap out of the area. 

She's not happy and shows it with some mild struggle. Her un-attended hand goes up and smacks the doctor right across his freshly shaven face, the thwack echoing off the walls. I am mortified, apologetic but he hasn't missed a beat. He shows only compassion without a trace of pity - he doesn't flinch or flush. I hold both her hands so tight and turn my head to not see the cutting and the blood and the chunk of flesh get lifted off of her skin. I think at one moment that I might cry, but it passes. Crying really wouldn't help anything. Thankfully, no one notices my momentary lapse.

The tall, thin, blond nurse at her head is rubbing her arm and talking non-stop to CB, a calm soothing voice reminiscent of motherese. CB calms as if a cloak is being lain upon her.

She gets 44 staples to close her wound. His deft hand lines them up like a picket fence. A Frankenstein-looking scar, but the wound is closed.

"You are so good with her," the blond nurse says after it's all over and I'm getting CB dressed.

"No, um, YOU were so good with her. I'm amazed. I'm grateful. Most people don't really take the time to talk to CB the way you did," I say. "And she responded to you. It comforted her."

"I think people are afraid of saying the wrong thing," the nurse offers, and I agree wholeheartedly. It's true, but here's the thing. If you are guided by your heart and come from a place of compassion, you can't go wrong. You just can't, at least that's how I see it.

This morning could have been a hot mess, but it wasn't because I wasn't in it alone. Neither was CB. We had three people right there with us, knowing exactly what we needed and unafraid to show it. Nothing in the world feels so good than to be seen, understood, and accepted just as you are. Nothing.

A little time and a deft hand. How little it takes to close a wound.

tHERsDay

Mother-Daughter Selfies From the Autism Walk

tHERsDay: Before

This is a photograph from CB's second birthday party back in 1997.

This is a photo from "before."

I labored over that Winnie The Pooh cake, hunched over it for nearly an hour with my icing bag, painstakingly lining up the frosting stars. Because, that's what I did in before. 

Before her diagnosis of Autism and Cognitive Impairments, which came only months after this picture was snapped. Before the OT and PT and Speech and the train of seizure medications with their nasty side effects.

This was in before, when she "only had epilepsy" and I was still gloriously naive.
When she was gloriously perfect and mine.

Despite all the things that have changed from before, that has been the only thing remaining constant. 
Perfect and mine, before and after.

tHERsDay: At The Table

I had a whole post about the chaos that occurred after I came home from the soccer field last night.

"I can't be all things to all people," I spat out to Dr. Fabulous, 10-seconds after he walked in the door at nearly 9:00 pm. I had a giant smelly bag filled with dirty diaper in my one hand, an emotionally distraught daughter in the kitchen who I had to ignore, a pile of soiled linens upstairs and a child to be scrubbed sitting in the tub. The day's work not close to being done, like the frayed ends of unraveling yarn, and I was tired from a restless night of little sleep.

But, I erased that whiny post when I found this photo from last spring. A photo of a girl who prefers to hang in the margins and avoid the crowds, sitting amongst the group. Enjoying the rowdy conversations over food and drink. For that moment, fitting in.

Because, all that crappy other stuff? It comes and goes. That stuff happens. It happened before, it will happen again.

Then, there are fleeting moments of magic where the thing that seldom happens, happens. That's when everything else sort of fades off into a colorless midst and I am reminded that I can always chose. It's not always as easy as a pinky finger hitting "delete" on my keyboard. But today, it kinda was.

Today, I pick the magic over the mayhem.

Here is tHERsDay's photo. I'll title it:  "CB at the table with friends and family." 

The Olympian

I enter into the humidity of an indoor pool and find the races have just started. The students, each coupled with an aide, are already bobbing in the water, floatation devices strapped to their backs. She sees me, eventually, across the expanse of blue and splashes in some version of a doggy paddle to get closer.  I see it in her eyes — the moment she knows I'm here — but my wave and smile are not returned.

It is Olympic week at her school, just as there are "track and field days" for my other three. CB's school does it up "big." There are t-shirts made, opening and closing ceremonies, the running of the torch, a week of events and actual trophies for taking "the gold." Olympic week is big stuff, but it seems pretty much off of CB's radar. If anything, it's disrupting her normal routine. Nevertheless, she loves swimming. More importantly, I can see she's glad I'm here.

She wants to get out and get to me, but is coaxed into lining up with her peers for her "heat" — a swim across the shorter width of the pool. Rella and I cheer for her at the opposite wall along with an enthusiastic staff. The boy who wins is filled with glee just to be swimming. CB touches the wall second with a casual indifference, registering no emotion about the competition aspect. She just wants to climb out of the pool, though isn't strong enough to pull herself up.

She is escorted to the pool steps and slowly ascends — dripping and chilled, drenched in chlorine. Her sudden smile could light a galaxy.  I'm embraced in a wet hug.

 Wrapped in a towel, side by side we sit on the bleachers together and watch the rest of the races, her hand gently clasped around my arm. It matters that I showed up...to both of us.

tHERsDay: House Rules

There are many unspoken 'house rules' of living with CB.



Perhaps we could needlepoint them upon a very large pillow.

~ Leave NOT thy ipad or iphone anywhere lest she pick it up and start banging it on the table.

- Leave not thy giant, expensive, flatscreen T.V. turned on and then exit the room lest CB walk up and smash it with her bare hands.

~ Leave NOT thy child's art work, homework, or important papers on any counter surface lest it get scribbled upon, crumbled and ripped or possibly eaten. This is especially true if your children are prone to being intensely devastated by the loss of a favorite drawing.

~ Leave NOT thy clothing, hair accessories or other such sundries with ribbon or string attached ANY where or it will be destroyed. Same goes for ear buds, headphones, or anything with a long cord.

~ Leave NOT thy spray or spritz bottle (such as hair spray, sunscreen, hand gel, and the likes) out in the open. The top will get chewed up beyond recognition.

~ Deck NOT thy halls at the holidays with any type of garland, beads, ribbon , string, wreathes, or things  that makes music or a sound. It. Will. Be. Destroyed.

~ Open NOT thy windows in the nice whether or you shall invite a stimming CB to smash your screen right out.

~ When driving in ye minivan, refrain from putting CB in the passenger seat lest she try to repetitively knock the car out of gear while driving, hit the flashers, and f--- up all your controls on the dashboard... particularly if you are going 65 miles per hour on the turnpike.

Yet, refrain from putting CB in thy back seat where she will try to break the DVD screen and open the car door and beat up her sisters.

~Always have a diaper bag and change of clothes. Always and forever.

Ye shall do these things at your own risk, oh brave souls:

Put up curtains.
Bring home a balloon.
Set down any beverage.
Set down a book or magazine.
Wear a long necklace.
Have your 90 year old grandma wear a long necklace.
Leave your wallet in plain view.
Hang wind chimes.
Suspend anything decorative from any wall or ceiling.
Leave anything remotely sentimental or old anywhere in your home. She has a knack for finding that stuff.
Leave a box of tissues, box of baby wipes, roll of toilet paper, stack of napkins, or a pocket book unattended.
Let her anywhere near a pile of gifts meant for someone else, particularly if there are ribbons and bows on them 'coz that stuff will be torn apart!
Put your child's water bottle, soccer ball, or drawstring sports bag within a 20 foot radius of CB when on the soccer field. It will be swiped.
Forget to trim her fingernails (they draw blood).
Run out of hot dogs or cheese (oh, mercy no!)

~ Lastly, if your offspring and neighborhood children are playing outside with a box turtle they found in the yard, do NOT let thy CB anywhere near it.

She'll walk over, scoop it up, and start shaking it around like a freakin' maraca to the hysterical screams and cries of 8 little girls.

No actual turtles were harmed in the filming of this event. 

If you forget any one of these rules, just remember this one rule of Life With CB (which also applies nicely to toddlers): If it's quiet for too long, there is most certainly trouble.

But the Golden Rule of Life With CB?  When she hugs you, never let go first.