Monday, August 6, 2018

Skating & Cerebral Palsy

It's been crazy!  Cole and I skated his program "Universal Child" (by Annie Lennox) last month and the video post went viral! Not in the millions, but over 200k as of today. I knew it would be well-received, but did not expect this. I'm just happy I stayed upright, and that Cole enjoyed it so much.

Here's the link to the full video, and a 30-second preview:






Saturday, April 15, 2017

Good Bones

Came across this. Beautiful, yet heartbreaking.

Good Bones, MAGGIE SMITH

Life is short, though I keep this from my children.
Life is short, and I’ve shortened mine
in a thousand deliciously ill-advised ways
I’ll keep from my children.
The world is at least fifty percent terrible,
and that’s a conservative estimate,
though I keep this from my children.
For every bird, there is a stone thrown at a bird.
For every loved child, a child broken, bagged, sunk in a lake.
Life is short and the world is at least half terrible,
and for every kind stranger, there is one who would break you,
though I keep this from my children.
I am trying to sell them the world.
Any decent realtor, walking you through a real shithole,
chirps on about good bones: This place could be beautiful, right?
You could make this place beautiful.

Thursday, February 9, 2017

Top 10 Reasons I Should Not Write My Life Story

From the home office in Dubuque, Iowa, here are the Top 10 Reasons I should not write my life story:

10) My catholic school upbringing is boring. Unless you count the infusion of Judaism and extra servings of guilt dished up by both competing organized religions. And grandparents. Nah, still boring.
9) Writer's block.
8) Writer's block again.
7) Hemingway said you should ‘write drunk and edit sober’. I'd be inclined to go the other way. Not sure that would sell.
6) Blocked. Might not be writer's. But at least it's no longer religion.
5) See, nothing to write about.
4) Lots of travel, might be the interesting part.
3) Triplets - this part is just full of poop.
2) No more travel, not much exercise, way less sleep.

And the number one #1 reason I should not write my life story:
1) Dave Letterman sure didn't beat me to it. And now he's off the air. But at least there's wine.

Friday, April 1, 2016

Book Publication!

If I have not yet shared this news with you, I will now. I submitted an essay to an anthology about multiples. It was accepted, and the book is now available for pre-order! The official launch date is May 1. I now have an author page on Amazon and Goodreads! Please leave a review of the book if you read it. It helps. I hope you enjoy it!

Review on Agoura Hills Mom

Here is where you can find it online:

Multiples Illuminated

Amazon

KINDLE

Barnes and Noble (Nook)

iBooks

Kobo

Saturday, March 12, 2016

First & Eight

My kids have spent the night at their grandparents' house a few times. Mostly that was when one of them was in the hospital. I don't consider that a sleepover, certainly not in the traditional sense. When our daughter was five, she wanted to have a sleepover with a friend, and decided it would be better if her friend stayed with us. She was fearful of sleeping elsewhere. It went very well, and no one was more relieved than me.


Now they are eight. Eight. I can hardly believe that part. While I digested this and the birthday presents wrapping paper has barely been cleaned up, two of them were asked to have sleepovers at friends' houses. On the same night. This would be a first. My son worried that he needs to sleep with the light on, and how to deal with that. We figured that part out, and packed both of their sleeping bags and PJs, and . . . off.They. Went. 

Though I was struck by the fact that they are old enough to have a sleepover with friends, I was more struck by another feeling. Sadness. Not because they are growing up. That's a normal feeling that I imagine most of my mom friends have. This was different. I struggled to identify it, and then I realized what it was. My third triplet. He is a very capable child. Smart, SUPER social, impossibly cute (by more than just my 'being-his-mom' standards) and funny. This, in spite of his Cerebral Palsy and having had a major stroke after an 11-week premature birth.

The reality is that he is still in diapers and has some mobility issues. We are so grateful he does not have more severe conditions. However, this does not negate that he still has therapeutic needs and support. This precludes him from things like attending after school programs, play dates and - sleepovers - without support. Thus far, he has been to one home for a play date without one of us. That friend happens to have a mom who is a nurse, a very kind and lovely friend who is willing to help him and change a diaper if needed. This is not to disparage any of our other friends and moms in any way. I just would not presume or even ask that anyone step in this way. 

So last night, as two of his siblings left for sleepovers, his face crumbled. It began to dawn on him that he would be sleeping alone. His sobs became uncontrollable and his face contorted in a way that broke my heart. I swallowed the lump in my throat and managed to get him into some deep breathing to calm down. Then I reframed the situation. This is the approach that seems to work best, but often takes a few tries until it sinks in. 

"Yes, they are sleeping at their friend's homes, but guess what?"

(sob, sob) "Wh-what Mama?"

"You get Mama and Daddy and your big brother who is home from college, ALL to yourself!"

More tears but it slowly sunk in and a smile spread across his wet face. Through his fogged up glasses I could see a small twinkle in his sky blue eyes when he realized he would be getting something the other two have never had. Plus hot chocolate and staying up super late with us watching a movie. I told him that second part once he really calmed down. 

The thing is . . . though his siblings tell me he knows more people than they do at school and has more friends, he gets invited to precious few birthday parties, play dates and certainly no sleepovers. His classmates are a wonderful, friendly and accepting group of kids, so I cannot explain it, other than maybe his social situation is not as in depth as it is wide. From time to time I get reports from my other two that my son does not play with anyone except his aide. Or that he only plays hopscotch or with hula hoops, but not with friends. This makes me sad, to think of him alone on the playground. At this age the boys are definitely more rough and tumble, playing soccer, catch, climbing on things. While I am not a fan of the word 'can't', this happens to be true for my son in relation to those activities. For now. He has overcome an amazing amount of disability thus far. 

Throughout the evening he randomly began crying, as part of his brain trauma affects his memory. He forgets things he already knows and has to be reminded frequently. Other things he remembers produce perseverating behavior. This is where he reminds US all too frequently. He was thrilled to share hot chocolate with just us, and fell asleep on us in the living room. We knew this would be the only way to get him into bed without complete disaster. We had agreed in advance to leave his bedroom door open. Fortunately it all went off without a hitch. This morning he got up and hung out with his older brother, had a donut and played on the computer. Uninterrupted. Once he called out to share something with his sister, and then realized she wasn't home. No tears. Whew.

We made it through this one. But what about the next time, and the next? I should not borrow trouble, I know. In no way do we try to remove obstacles from our children's paths. we firmly believe they need to grow strong by learning how to get past difficulties. But how does that translate to a child with special needs? In figuring out what this means for each of our children, we have learned that one size does not fit all. I have often told the triplets that 'you don't always get what everyone else has'. And I mean it. That was severely put to the test last night. #walkthetalk

What it means is that we learn the best way to describe situations to the kids and help them, and ourselves, learn how to see and approach things in the best light possible. Also, with a healthy dose of reality. Reality is important because no one can be good at absolutely everything. No one can do absolutely everything. You don't even have to try absolutely everything. Finding what you like and what you can do best, that's the thing to do. Football moves at a goal pace of 10 yards per down (try). We may be moving at a goal pace of eight years per try, maybe less. But as everyone woke up this morning seemingly unscathed, and all had an enjoyable night and morning, I'll consider this first pass a touchdown in our own personal Superbowl. 

Sunday, December 27, 2015

Life List & Bucket Items

I've been reflecting a lot on 'if not now, then when?'. I often wonder (when
the glass is half empty) what life holds next for me. Sometimes I also wonder (when the glass is half full) what I hold next for life. I decided to make a list of odd/interesting things I have done and enjoyed thus far, just to see what kind of perspective it would bring me. The spirit of the ah-ha moment means you don't see it coming. So while I do not particularly have a bucket list of must-do items, I do have a few lines yet to fill, which brings me to the ponderment of 'if not now, then when?'.

I have . . . .

- Danced down Main Street in an official Disneyland parade
- Traveled alone through Europe with no plan
- Been selected from the audience to be on a TV show
- Won numerous radio contests (including $1,000, a trip to NY and
   various restaurant cards)
- Sung Jingle Bells at a crowded United Airlines gate to get an upgrade to first class
- Had triplets
- Spent New Year's Eve on the Champs-Elyseés in Paris
- Quit a career on the spot to begin a new one, across the country
- Organized a Locks of Love event that produced 286 ponytails (26 lbs. of hair)
- Threw a dart at a U.S. map and relocated to the nearest big city
- Took a solo driving trip around the U.S. (to get to that city and back) covering 23 states plus the lower part of 2 Provinces in Western Canada
- Camped under the desert stars with strangers I met on I-25 in the New Mexico wilderness (on the way to that city)
- Lived in 11 U.S. cities (as a result of that dart)
- Driven solo through 16 states (as a result of the relocations instigated by that that dart)
- Rock climbed in the desert
- Visited 3 of the 7 Wonders of the World (Macchu Picchu, Christ the Redeemer and the Roman Colosseum)
- Met an odd collection of celebrities in unexpected places (Bill Murray, Harold Ramis, Roy Orbison, OJ Simpson, Hulk Hogan, Sandra Bullock, John Candy, David Hasselhoff, Cheech Marin and more)
- Seen someone die inches from my face (obviously not a bucket list item)

Reading this back to myself, I realize that every single thing on this list has been a spontaneous event. Very little if any forethought was involved. I'm not saying that has always been a positive outcome initially, but eventually for sure. The ah-ha that has now been produced is that if you put yourself in the right frame of mind and place, and allow yourself some freedom, interesting and amazing circumstances can develop.

What's next??

__________

__________

__________

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