Weekend Wrap-Up: Partying Like A Mutha'

So, this Mother's Day weekend, we had our typical full docket with the girls and their sports. But, the  POURING rain cancelled all three travel soccer games on Saturday! It was a Mother's Day Miracle! Sunday night swim was cancelled too, because the coaches have a heart for Moms. So what did that mean? All the annoying stuff (a-hem, I didn't say that) was OFF and all the fun stuff was ON like Donkey Kong!

My Mother's Day gift came early. It was a special night out with the girl who made me a Mom.

Friday night we had CB's 10th Anniversary Reunion Prom. 

When I got the invitation in the mail several weeks ago, I was so happy that I almost audibly squealed with delight and jumped up and down. At first, I thought maybe she got the invitation by mistake. She did graduate last year, after all. But, after checking with the school, I learned that for this 10th anniversary, all alumni were invited back. 

This invitation made my year. Seriously. I haven't blogged about how difficult things have been since she graduated. Life had been very stressful since she graduated. She was totally out of control for many months and was without any program or supports. Things have improved immensely over the past few months, and this prom was kind of like a little celebration of how far we've come. 

Her prom has always been a really special night for us. It's the ONE night where CB and I can do a mother-daughter thing together without ANY stress. Dr. Fabulous missed her Senior Prom last year, because he unfortunately had to travel for work, so I was stuck with (a-hem, I mean hanging out with) my ex and his girlfriend for her final prom without my man. Mildly awkward, but fine. We're all good, so it's really no big deal. 

While I truly enjoyed having her biological Dad there to share her special night every year, selfishly speaking I really loved having just one prom with just me and Dr. Fabulous. He is such a loving and involved step-dad, but when her bio dad is with her, he really tries to respectfully stay to the side and let them have their time.  

But tonight, they could hang out like usual. 

I cannot explain how excited CB was when she walked into the prom and saw so many familiar faces. She doesn't have the language ability to understand where we were going and who we would see, so it just hit her all at once when we arrived. She started rocking back and forth with vigor, yelling "ELLOH! ELLOH!" which is her version of "Hello" and what she was taught to say during her 18 years of circle time at school.

She never stopped smiling the entire night. Smiling and squealing and laughing and jumping up and down and swinging herself around like she was being attacked by a swarm of bees (that means she's super excited and happy, by the way). I mean, she was totally freaking out, but the reason I love this night is because no one cares. We're all the same here. Everyone "gets" it. No one is judged. No stares, only smiles. I was seriously laughing so hard all night long. 

Her aides were there. Old teachers were there. Administration was there. Kids she probably recognized were there, but she shows no interest in her peer group. She did, however, react to all the staff who came up and hugged her and talked to her. She made her rounds, visiting multiple tables, plopping herself down and stealing everyone's water. I enjoyed seeing all the staff almost as much as she did. They were part of my family for many, many years. I sincerely missed them. 

I know she did too.

***********

Saturday we got to lay low due to all the cancelled soccer games. The downpour finally let up in the late afternoon, and I had a fun Girls Night Out with friends, eating Indian food and drinking wine. Although I stayed up a little too late, I got to sleep in, uninterrupted, on Mother's Day. 

I awoke to the smells of breakfast cooking.

Breakfast was mostly Pink's handy work: a homemade pink fizzy drink, a Taylor ham, egg, and cheese sandwich, and loads of fruit. Dr. Fab ran out early that morning to get me my favorite coffee, because breakfast isn't complete without a good cup of Joe.

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

It's a rare occasion when I'm in a photo with all four girls. It's never the best picture of all time, but I'm always grateful if everyone is (sorta) looking at the camera and looks relatively clean. I had to crop out Rella's bare feet in this picture because Baby Girl has something against shoes. 

I also found a four-leaf clover ON Mother's Day. That has to be symbolic of something. Perhaps some extra luck? 

Since CB had a seizure later that night, I'm thinking the luck may not have kicked in immediately. 

Hope all the Mommas out there had a very Happy Mother's Day! 

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."

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.

Senior Prom

And, just like that... it's Senior Prom. 

May is her last Prom. It will also be her 21st birthday. 

And in a matter of weeks, she will be a graduate.

 Her school started this prom for students ages 16 through 21. CB was 16 for their inaugural year, so she was there from the beginning. Her first prom was this school's first prom.
And, MY first prom ever too!

Now we're at the end of an era, so to speak. 'Bittersweet' is the closest I can get to describing the feelings I have. But even bittersweet just falls flat. 

This prom has meant the world to me. Probably more so than it should. For parents in the typical world, prom is a huge, kind of surreal, milestone event. They watch their son or daughter get dressed up, giddy with excitement. They lament on how much they've grown and how they are standing on the cusp of becoming an adult. Perhaps college is on the horizon, or employment, or traveling the world, or the Peace Corps. Senior prom transitions to the next phase of life. 

It is bittersweet; the twinge of sadness that they are so grown and they are pretty much independent and not so "needing" of you. The excitement of them coming into their own lives and minds. Their world is full of possibility. You've done your job. You've given them roots to grow, and wings to fly. 

It's different for me and CB. 

At the close of this school year, she will transition into the next phase of life. She will not be stepping into a greater level of independence, though we are always working towards improving this in a relative sense. I will still be caring for her round-the-clock. The close of this chapter will open up another one, but I'm not sure I'd describe it as one filled with promise and opportunity. 

 She will be leaving a support system of people who love and care for her. I'm leaving that support system too.  The teachers, aides, and administration at her school - a place we've been for for 11 years - has become family. But unlike REAL family, when we leave, there are no ties left to bind us.

I am braced for it, when I'm not swimming in denial of it coming. It's a really difficult time, emotionally, for me. But, CB? She's happy as a clam. 

I will say that there is one thing I share in common with the "typical" moms and dads and their "typical" seniors. I am so very proud.

So, enough with that downer stuff. Now, we PARTY!

And by party, I mean drinking water out of a red solo cup like we're at a frat house. 

It IS just water, but the picture totally cracks me up! 

Party on, CB. Party on. 

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. 

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. 

Holiday Wrap-Up: The Merriest and Brightest

Christmas was here and gone, like a whirlwind. The wrapping paper remnants and boxes are overfilling the trash bin, tinsel is scattered throughout the house like glittering dust bunnies, brightly colored cookies have turned stale on the counter, and Jingles, our Elf, has left the building.

And I am exhausted.

And happy to the core of my being. This Christmas felt like the Merriest and the Brightest ... though each one feels that way. One just keeps topping the next, but I suppose that's what happens when you appreciate your amazing (though far from perfect) life with the people you are blessed to have in it. 

This Christmas was a little different in a few ways. One, it was super warm. Like, record breaking warm. It was rainy too, which made it muggy. We turned on the air conditioning at my brother-in-law's house during our Christmas Eve get together. While many parts of the world celebrate a green Christmas, I haven't seen one this mild in the NorthEast EVer. 

The other difference was that CB was with us for Christmas Eve and Day. We rotate years with her dad so last year, she was in Maryland. This year, CB was here... and Cancer was gone. 

We also had a new little itty bitty baby — my nephew!! YAY! 

I love babies. LOVE THEM!

Before I end up confessing that I want another one, let's move on. 

Many of my neices and nephews are now teens and young adults. So, Christmas gatherings look less "kiddie" and more "teeny" if that makes sense. I think this photo speaks to this point. 

They are great kids and I love getting to know the people they have become. They are smart, kind, funny, generous, loving and still... kids at heart.

The old guy included. 

After spending Christmas Eve with Dr. Fab's side of the family, we were still able to make it home to enjoy our family traditions... setting out cookies, hanging our stockings, and reading two vintage Christmas books that my parents read to me and my sisters and brothers when we were small. These books are totally falling apart, but they are awesome. And my kids love them as much as I did.

This year, Rella asked to read The Night Before Christmas. They're getting so big it makes me tear up. 

Pink started her own new tradition after her Religious Ed teacher (otherwise known among Catholics as CCD) told them about it. She made a box that said "Happy Birthday Jesus" and then filled it with little slips of paper as she wrote down the kind things she did in the days leading up to Christmas. Then, she left it under the tree on the Eve of Jesus's birthday, without fanfare. I thought it was so sweet and a good reminder of what the season is all about.

As our family attempts to do every year, we looked for ways to give back during December. We donated a Christmas tree with all the lights and trimmings to a family in need who couldn't afford one. We made shoeboxes for Operation Christmas Child and we sorted donated toys at our church and at a local non-profit. We made several toy donations to different organizations like hospitals and shelters and sent a Christmas card to a girl named Safyre who was horrifically burned in a fire that took the lives of her entire family. 

These things were very small, but they served as touchstones for the girls as they bounded through a time of year where they are slathered with gifts, food, and love. It's my job to allow them to have an AMAZING Christmas and spoil them a little bit... just let them be happy kids. But, it's also my job to keep them grounded, keep them aware, help them understand that they can do a little something in this world to make a tiny corner of it a better place for someone else. 

I stayed up until after 1:00 am, as usual, and the kids were up at 5:00 am. Or, should I say Rella was up at 5:00. This was a huge improvement to the 3:15 am waking last year. They opened their stockings while we waited for CB to rise. I wasn't going to disturb that poor child so early! It also gave me time to get our big breakfast buffet started. When they all were ready to come downstairs and see what Santa left, it was still dark outside. I love that excitement. LOVE it.

Santa leaves a little "rope" across the staircase so no little children can sneak down too soon. Then Dr. Fabulous and I count them down and they make a mad dash into the family room!

I love that Pink stayed with CB to help her down the stairs. This girl is a freakin' angel, I tell you.

Tink's favorite gifts were her new hot pink glittery guitar...

Her "Itty Bitty's" which are a thing. They're at Hallmark. They're tiny stuffed animals. I don't get it. Whatev. 

And, of course, every year she asks Santa for Holiday Barbie.

CB got a stocking full of Cheez-Its and beads, so she was occupied for fifteen minutes until she went upstairs to take a nap. Christmas is exhausting like that.

Our crafty, creative girl Pink loved her cookbooks and art gifts.

She received a gummy bear maker which included this giant mold for a collassal gummy bear. It looks black, but it was really a rainbow of colors layered together, with blue on top. It took the whole family three days to eat it.

Rella's favorite was her long-adored cotton candy machine...

... and a drum set. She asked Santa for a real one, but us parental units forbade it. Santa in his infinite good humor brought her a tiny one and she thought that was quite clever.

Later in the day, CB was coerced back to the tree where her sisters helped her unwrap oodles of clothes.

Then everyone lounged around all low key, playing with stuff and I might have fallen asleep on the couch two or three times.

We had an improptu neighborhood get together which we picked up again on Sunday and just spent a lot of time hanging out and enjoying the aftermath of the Merriest and Brightest time of year.

That's a wrap. Or an unwrap. That's what we call an Awesome Christmas 'round here. Hope your holidays were the Merriest and Brightest too.