Friday, March 24, 2017

The Right Kid

A few weeks ago, a solar panel sales guy knocked on my door. At some point during his super annoying sales pitch (no offense to sales people, he just wasn't good at it and was overly aggressive in my opinion) CB came bounding up behind me to try and get out the front door. Or say hi to him. Not really sure what her motivation was. After a brief interaction with her and successful redirection, I turned my attention back to the gentleman at the door and gave my one sentence "elevator pitch" explanation about CB... as if he probably couldn't have figured it out already at that point.

He took this as his potential "in" because, lo-and-behold, years ago HE worked at a group home for young adults with cognitive disabilities. We chatted about it for a few minutes, I asked him where he worked and how he liked it, and all those niceties (of course, still not interested in buying his solar panels, by the way). Then, he tells me that after about a year working there, he was burned out and left. His exact quote: "I couldn't take it anymore."

"I couldn't take it anymore." He even chuckled after saying it, as if we were compadres, commiserating together. I'm not even going to pontificate on how it must be nice to just decide you're "not going to take it" anymore and walk away when sh*t gets hard, but that's not really the road I want to go down right now.

It wasn't about his "job," (the administration, the pay, the benefits or lack thereof) it was the CLIENTELE that he couldn't take anymore. He made that pretty clear when he talked about "their" behavior and "their" level of care. I'm not one to be overly politically correct or nit-pick over semantics, but honestly... he could have explained himself in a variety of different ways. He could have said it was a rewarding but very emotionally draining job. He could have said it was tougher than he realized. He could have said it was a challenging population and he learned a lot that year, but realized it wasn't the right job for him. But, instead he chose to say "I couldn't take it anymore."

I mean, are you that clueless or that insensitive of a human being? Are you seriously going to say that to a mom of an adult daughter with severe disabilities? A daughter you JUST saw come up to the door? Then he added, as if throwing me a bone: "I don't know how people like you do it." Oh, thanks. Was that supposed to be a compliment?  Perhaps he was trying some version of compassion. Except it wasn't compassion, it was pity. I'm the pitiful mom who had drawn the short straw. Someone who was blessed in all these ways - big house, great husband, three smart, sweet, kind, beautiful and healthy children... but then there is the "other" one.

And, while there are moments where I feel like I truly can't take it anymore and there are moments when I sincerely don't know how I do it, that's not the lens through which I see my daughter nor the relationship I am blessed to have with her. That's not the narrative of my life.

A few days after that jerk knocked on my door, I went to do my volunteer work with a group of women who started out as strangers but whom I now hold near and dear. One of these women, a mother and grandmother, started telling me a story about something she saw on television that had to do with Autism. She began asking me questions about CB, truly caring questions. I could tell she was so genuinely interested in knowing about our relationship, and what it was like to be CB's mom. I love when people really want to get to know me and truly know my family, not just the glossy exterior. No pity. No canonizing me for sainthood for doing nothing more than loving my children.  Just seeking knowledge and understanding.

As our conversation came to a close and we said our goodbyes at the front door, she became momentarily choked up and said warmly: "Your daughter... she got the right mom."

And I told her, "No, you got it all wrong. I got the right kid."

Wednesday, March 15, 2017

Night Storm: Reviving the Long Neglected Blog

The snow wasn't as bad as they projected yesterday, but the kids still enjoyed a snow day. The winds were gusty, the trees encased in ice. I know it's not safe to have frozen tree branches, but it sure makes the world outside my window glitter quite beautifully. We had a subdued, unstressful, relaxing day. At one point, there were 5 extra friends in the house playing board games and watching movies, but that was the extent of the excitement. I stayed in my pajamas and tried to work but was minimally productive.

At about 11:00 pm, there was another storm. The kind of sh*t storm that has been occurring once to twice a week for the past several months. The kind of storm that we have been weathering, off and on, CB's entire life.

As I made my rounds, doing my nightly "peek into the girls's rooms," I heard CB coming out of a grand mal seizure, and transitioning into one of her psychotic post-seizure episodes. I liken the sound of this to a bull getting ready to charge. There is a lot of snorting (literal snorting) and huffing and puffing , body rocking and a growing sense of agitation that fills the air around her until she rises, unsteady, hell bent going SOMEwhere and doing SOMEthing, but I swear she doesn't even know what it is. She is just driven by fear or hallucination or God only knows what. She only knows you are in her way and you are to be taken out by any means possible. Before I can get to her, she's careening out of her bed, whacks her hip into the corner of the dresser and nearly falls on top of me. Still uncoordinated and floppy from the seizure, she is unsteady on her feet but determined to flee from the room.

I position myself between her and the door and try, knowing already that I will fail, to calm her down. But there is no reasoning with her. There is really no reasoning with her even under the best of circumstances because of her cognitive abilities. But now, she is not herself. It isn't her. It's like the invasion of the body snatchers. I can't see her too well in the dark, but I hear her screaming and crying, and I smell the fear and the aftermath of a seizure. I kid you not, a severe seizure smells like something was burning and you try to forget that that burning was your kid's brain.

She's still on fire with this post-ictal psychosis. She's wild. She's violent. She's heartbreakingly afraid and while I am filled with compassion for her, she has no compassion for the fact that I have a face and that face can feel pain.

In a flash, I'm struck hard on the side of my head. I'm okay. Of course, I'm okay. She hits hard, but she's not a prize boxer. It's just the sting of a good smack. Before I can recover there is a sharp burst of pain in the dead center of my face. She's struck me again, as hard as I've ever been hit by her in my life (a tie with getting kicked full force in the nose by her while attempting to get an EEG last summer). I'm hit so hard, I see a burst of light in the dark room, like a momentary flash of a starburst, then feel the crackling pain. I know I'm not hurt, as in 'for real, need medical attention' hurt, but I scream from the surprise of it all and next thing I  know Dr. Fabulous is knocking on the closed and barricaded door. She gets in two more whacks to the head before I can let him in.

Let me say this, before we go any further (because some people want to hear only what they want to hear and want to know what they think they already know): CB is a sweet and loving child. She can sometimes act out, but she is generally well behaved and isn't malicious. I am not afraid of her. It breaks my heart to think that people are afraid of her, and I hope I am not feeding into any of this fear by telling this story. She is not, in general, a violent person, but I cannot lie and say she doesn't have her moments when she gets ticked off and can give you a good smack. Or throw a plate across the room so that it smashes into 10 pieces. These are exceptions, not the norm. I have never, ever been afraid of this girl. I have been afraid FOR her, but never OF her. And I'm not afraid of her this night either, because this is not who she is. She is not herself in these moments.

So, I want to make it crystal clear before continuing the story that 1. CB poses no risk to me, her family or herself, 2. She doesn't belong anywhere but here so please don't even hint around at any alternative, and 3. I am not trying to evoke any concern over me. She is the only one who deserves concern. Most importantly, 4. I neither want nor need any pity... so save that sh*t for someone or something else, please. Nothing tears down my spirit more than pity.  

Continuing on....

So, Dr. Fabulous and I take care of the business of stabilizing this child whom we love, who is no longer a child, really, but a young adult. Together we wrestle, physically wrestle with her in the dark, trying not to hurt her or let her hurt herself. The next day, I will wonder if he ever pictured his life as a parent quite like this. I didn't have a choice, but he did. And he's still here, wrestling in the dark with demons, demonstrating a love more ferocious than fear. Love that somehow keeps regret from worming its way into his mind. He's here, for me and for her, as she is screaming like someone is throwing acid on her skin, and kicking and trying to hit us. She might have gotten a few more cracks to my head... I lost count. At some point, I think I hear one of the other girls in the hall during the whirlwind. I pray they aren't hearing this upsetting scene. If they do, I'm pretty certain they won't even tell me.

Things calm down. We can finally leave the room knowing she's asleep. My face is throbbing, my head hurts, and I'm tired. I could sleep for a thousand years. I know Dr. Fabulous and I could have a mini therapy session and talk about this for 20 minutes, or an entire lifetime, but we don't. Instead, we hug each other until we fall asleep. There's such a sense of peace knowing there is one person in the world who knows everything without you having to say a word. I never need for him to read a Facebook or blog post, or explain my day over a cup of coffee.  He gets it. He lives it. And, he hasn't run away yet. Thank God, because I couldn't do this without him.

When I woke today, the ice had melted from the branches and the world was light. My face and head throbbed, but when I looked in the mirror there was not a trace of bruise or swelling. No evidence of pain for a single soul to see. Already healed, at least on the surface.

Perhaps that's why I write this blog. Why I share too many awkward stories with friends over lunch. Post with a bit too much detail on Facebook. Without these stories, who would really know me? Know my family? Know how our love for this young lady has changed us into the people we are? All the hurt and pain would be invisible. One could argue that there is an upside to that. But you know what else would be invisible?  All the love and devotion and joy we have in this family. You can't know one without knowing the other.

I'm grateful for this space to write my stories. I hope to revive this blog, and share many more. For those who are still reading, and listening, I thank you.

Friday, February 10, 2017

Cookies for Charity

The girls and I found this AMAZING non-profit in our area that does a ton of great charitable projects. One of many that are very family oriented is their Cookies for Charity program. Once a month, volunteers can come to a local church and spend a few hours mixing the cookie ingredients, baking them, and packaging them up for distribution. Our first month there, we made (as a group) about 800 cookies! We made 500 the next time. It's so fun, and the girls love it. 

The cookies are bagged up and given along with small care packages that include toiletry products. These bags are distributed to women and men who are experiencing homelessness in Camden and/or Philadelphia. I am hoping to take the girls on one of those outings soon. I think they will really get a lot more out of that face-to-face contact and see the impact of what one small act of kindness can do.

In the meanwhile, we'll be trying to bake as often as we can with this amazing group! Please message me if you are local to South Jersey and would like to learn more about getting involved. 

Thursday, May 12, 2016

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 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. 

Monday, May 9, 2016

Weekend Wrap-Up: Mother's Day

One more year, one more great Mother's Day. Can you believe I've been a Mom for almost 21 years? That's a lot of Mother's Days under my belt, and I look forward to many more to come.

After a week's worth of clouds and rain, the skies turned blue and the sun finally came out! The fields were so saturated, however, that our three soccer games on Saturday were cancelled. Due to Mother's Day there was no swim on Sunday. What I'm trying to say is that the weekend was totally chill for once.

And I got my annual Mother's Day picture. Yay!

We had our North Jersey contingency down for the whole weekend, which was very nice. My girls went to the Children's Theater with their little cousins, we had dinner together as a great big bunch on Saturday, then reconvened for Mother's Day Brunch on Sunday. It's great to spend that quality time with everyone.

You know, I've had Mother's Days when kids were sick and puking, Mother's Days where there was a stream of dirty diapers and night wakings. 

I've had Mother's Day in the vineyards with wine, breakfast in bed, and afternoons at the spa. I've spent Mother's Days completely alone with a non-verbal CB, and Mother's Days rubbing my belly waiting to meet the little one inside me. No matter what I do, where I go, what I get... it's all good. 

This year, CB got up at 6:45 am, but at least she slept through the night so I was happy.
And, unlike other random days, I got a few pretty things just for being a Mom...

Of course, I cried reading the cards the girls made me. I got through two before I broke down. Big improvement from years prior. Yes, I AM a total freakin' sap.

The above silver bracelets were given to me at dinner on Saturday night by my entire family. It was in  celebration of my one-year "Cancer Free" anniversary. What a huge surprise, and a very sweet one. Mother's Day will forever come on the heels of this anniversary and I can't think of a better way to remind myself of what I will forever fight for. 

The day came to the perfect end when Dr. Fabulous picked up sushi and some beer. After the kids went to bed, the paaaarty started. And by party, I mean watching the Antique Road Show snuggled on the couch with my man, drinking a few of these. 

That, my friends, is what I call another perfect Mother's Day!

Friday, May 6, 2016

The One Who Made Me A Mom

Today I attended a sweet Mother's Day Luncheon at CB's school. Our last school luncheon, as my "senior" is graduating this June! It's a year of "last times," and a year of new adventures. I will miss this stuff.

How lucky am I that I get to do these things with my 20 year old, though? When my little ones were in preschool, they always had a cute Mother's Day Tea or Luncheon. Once they hit the first grade, that whole scene was pretty much over. But, with CB I got to enjoy these fun times for the good part of her 18 years of school. 

What I'll miss the most is walking into her class and watching her face light up. Today, she practically tackled me with the longest, warmest, most heart felt hug. I could have cried on the spot, but I was too busy laughing!

I love all my girls, and each have a special place in my heart. With CB, she's the one who made me a Mom. It was just me and CB against the world for nine years before her sister came onto the scene. We have a lot of history between us. 

I'm glad she came first because in all honesty, she has made me a better mother. 
I learned how to give without expecting anything in return. To care for another so completely and intimately. To trust someone loves you even when it's never spoken. To appreciate the little things because they are the big things. To chose happiness even when things suck. 
To accept that things are what they are. 
To accept that people are who they are and not love them in spite of it, but because of it. 
To understand that motherhood isn't about YOU. 
To understand that we can't control anything, really. And that's not only okay but it's good. 

And that sometimes people make you go without sleep for weeks and you still love them anyway. Even more than coffee.

And for that, and more, I am the luckiest Mom. 

Wednesday, May 4, 2016

Dear Cancer, Bite Me. A 1-Year Anniversary Post

Today, May the Fourth, marks my "One Year Cancer Survivor" anniversary. I don't know how these anniversaries technically work, but this is the day I selected. I didn't want to pick the day I was diagnosed, since that day was a total buzzkill. Not feeling like celebrating THAT bull crap. I could have selected January 20th since that was my surgery day, and the day technically all cancerous tissue was excised from my body. 

But, I always thought the day that most commemorated me kicking Cancer's stupid a** was the final day of my 30-day radiation treatment. The final step in a five month journey. The. End.

I'm not gonna lie. It was also cool to have it on Star Wars Day. "May the Fourth Be With You." You know I love me some metaphor and serendipity.

The past few weeks, I've been seeing those "Facebook Memories" pop up on my page. You know, where they show you a post or picture from one, three, five years ago and you're all like "Wow, I remember that!" Well, the posts that have been popping up are reminding me that this time last year, I was coming to the end of my 6 weeks of daily radiation treatment. I affectionately refer to it as "Bell Ringing Day." 

Yeah, I rang that mo' fo'. 

When I read those old Facebook statuses, what stands out to me is an immense feeling of gratitude, even then. I remember that gratitude with such emotional clarity. In fact, it is still present today. Grateful for amazing friends, for a supportive and compassionate community, and the family that came to support me when I needed it. If I was strong and positive during it all, I deserve little credit. Strong is easy when no one ever lets you fall.

So, in celebration of the tremendous support I received throughout that five month journey, I volunteered with Hearts United Against Cancer this morning. I remember receiving one of their beautiful Care and Comfort Bundles right after my surgery and how loved I felt. Last May, I began volunteering with the organization so I could be a part of paying that support forward. It's been one of the most rewarding things I have been a part of. 

Dr. Fabulous has to work really late tonight, but I'll be celebrating my "One Year" with these little clowns. 

Grateful. Happy. Strong. And far better now than I ever was before. Because every bump in the road just makes us stronger. And being together makes us the strongest. 

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