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."

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. 

The CB Diaries - Part II

A few years ago I attended my niece's baptism.  It was a double baptism, actually. My sister-in-law and her sister Amanda had their first babies within weeks of each other and decided to baptize them together. 

After the ceremony we all congregated outside before heading to a large, joint celebration at a restaurant. Amanda looked over at me, coiffed and beautiful after posing for a milllion pictures in the church. She rolled her eyes and laughed while balancing her son over one shoulder and a diaper bag over the other and said with slight exhaustion "This is just like a wedding, except you're trying to do it all with a kid on your hip." 

I blurted out a half-stiffled laugh.  "Oh, you mean... people can DO that? That's a real thing that happens?" She furrowed her brows a bit at me.  "I mean... sorry," I giggled, clearly the only one laughing at my private joke. "I never had the luxury of getting married without a kid... either time."

Awkward pause occurred right about here.

I was married twice - the first time with a three month old and the second with a significantly cognitively limited, 8 year old on the Autistic Spectrum.  Well, technically the first time I was married it was in a court house seven months pregnant in a five minute ceremony conducted by a Justice of the Peace.  So, I guess I was technically freed up for that one.  The big ceremony with a wedding dress, proper vows, rings, first dance, cake and reception occurred three months after CB was born which is what I "count" as my wedding because the whole City Hall quickie wedding thing was sorta depressing for me. 

Anyway, I've never planned, shopped, primped and preened for a wedding while not simultaneously being on mommy-duty. There was always the stress of taking care of a child on top of the stress of almost single-handledly planning a wedding (I have seen the latter alone render near nervous break-downs in some young women). At my first wedding, CB being so little so it was easy to find lots of people to hold her and help me. It was much more stressful at my second wedding. CB was older and more wild and unpredictable. There were medications to give, diapers to change, and a non-verbal, easily frustrated child with fluctuating moods with whom to contend. I actually considered not having CB attend and participate in my wedding at all. It would have been easy - VERY easy to let her go spend the weekend with her biological dad.  Certainly everyone would understand.  It was almost too much. I wasn't sure I could manage it all.  

Yet, I just couldn't picture my happiest day without her by my side. We had been through so much together. We were becoming a new family. She needed to be there, so she was.

She was with me in the hotel room, along with my bridal party, as I readied myself in the hotel. Then she rode over in the car with me. I remember I was in the passanger seat, she in the back.  I turned around as we sat out front waiting to exit the car and line up outside the church door right before I would go in and get married.  I turned to her and pleaded "Please, just make it down the aisle.  Just walk down the aisle.  That's all I want you to do.  That's all.  Just please, please, please do that for Mommy."  She hummed and stimmed and stared into a void.  

I guess on some level she knew what I was begging for, and she gave me the only gift I asked of her that day.  She walked down that aisle, escorted by my sister. That is about all CB was capable of that day and I know in my heart she did it for me. 

Though I was still hiding outside and couldn't see this big moment, I heard there wasn't a dry eye in the house.

Sometimes I think that Baby Girl doesn't understand a word I say. But then, I remember our language goes beyond words.  It always has, by necessity.  It always will.

The CB Diaries - Part I

One day CB disappeared.  I mean vanished into thin air, without a trace. 

When CB was about 6 years old her father and I separated. I voluntarily left our home once reconciliation was clearly no longer an option. I rented a two-bedroom apartment a few towns away. This was a garden apartment, not a high rise building, out in the suburbs of Towson, Maryland. Garden apartments are not tall, they are only about three stories, and what they lack in height they make up for in acreage. My complex sprawled for blocks and blocks and blocks to look like a red brick neighborhood. To conjure that "community feel" there were a few common lawn areas and a small playground which was located conveniently behind my building.

This playground was both my saving grace and the kiss of death. CB was obsessed with this playground, though I don't quite know why. She didn't do anything on it but sit at the top of the slide and spin her beads around and around for hours while I sat on the park bench. There were many "flip outs" by my front door morning, noon, and night because all she wanted to do was go out on that playground.  She'd sit there screaming... SCREAMING her head off and in an apartment complex it is difficult to hide a child's tantrum so I'd end up caving in. We'd sit on that playground in the rain and cold, dusk and dawn.

One day after we sat out there for an hour, CB had her fill and we were ready to head around the building to the front door. I saw her walk off the playground apparatus, heading toward the front of the building in our same old routine.  I turned my head to grab my purse off of the bench but it slid off and my phone fell to the ground so I picked it up. The whole diversion was about 20 seconds. When I reoriented myself I didn't see her so I figured she had just made it quickly to the front of the building. I jogged up there thinking I'd see her form standing by the big glass door.  She wasn't there.

So I scoured the parking lot with my eyes, but saw no blond-headed little waif prancing through the cars. I opened the front door to the building - no one.  So I turned around and ran back to the playground scanning the big lawn.  No one.

Not a soul anywhere.

I started panicking while trying not to panic because who disappears into thin air like that?  So I ran back and forth, from the parking lot to the playground area over and over calling her name, then screaming it, then I basically freaked out.

When a child goes lost, a second feels like an hour and five minutes like a day. Ironically I had looked at my watch RIGHT before I got off the bench to head back in and so I had an accurate perception of time.  It was fifteen solid minutes of looking for her, calling her name, running in larger and larger circles. Fifteen minutes feels like an eternity.  It feels like she's gone and you're in your worst nightmare.

Random people started helping me, people who trickled out of the parking lot who may or may not have been my neighbors.  In the midst of an unamicable divorce and potential custody issues I was scared to call the police and report what could be construed as my lack of supervision, but I knew at this point it was time to panic. I dialed 9-1-1 and was preparing myself to tell them my child must have been abducted by aliens because that is how fast and nonsensical it all seemed.  What could have happened in SECONDS?!?!

Then I saw a woman with white hair, maybe in her late seventies, bent over like a willow.  She was walking toward me and next to her was CB, holding her hand, looking at the ground, flapping her free hand and humming.

After my tearful reunion I of course had a million 'thank yous' and asked a million questions. The long and short of it was this.

CB paid this woman a visit.  The woman lived on the other side of the big central lawn and had been alone in her kitchen when she heard her sliding glass patio door being thumped.  She looked outside and saw CB kicking it with her size 11 Keds.

"I knew when I opened the door that she had Autism," the woman said. "I had a son like her.  I had a son like her who I was just thinking about when she knocked.  I was just sitting at my kitchen table remembering him."

CB diverted her path, perhaps pulled by some force. She needed to give that woman a message. I don't know, maybe it was all a coincidence.  Maybe not.  All I know is that at the very moment an old mother was sitting at her kitchen table remembering a son just like my CB, my daughter uncharacteristically changed her direction and sprinted over to bang on her door.  To show up unannounced. A wordless visit heavy with meaning.

CB has disappeared on us a few more times since then. It's scary - beyond scary.  That day was the scariest but something good came of it, and I don't just mean finding my daughter to make the story a happy ending.  Something good always comes from those who many believe have the least to offer.  They are here to teach us many things, sometimes in the midst of stress and mayhem, grief and fear. They are here with a message.

Over the past 18 years I'm learning to listen for that message more.
It's difficult, but I'm learning.