Friday, June 15, 2018

I'm okay with Holland

Raising a special needs child (even one as "easy" as Lucas) is challenging. It means a lot of acceptance, a lot of changing one's expectations of parenting, a lot of not caring what other's think and tossing out a lot of advice. You also get real good and (fake) smiling and nodding and real good at rolling your eyes behind peoples' backs. But you learn to enjoy the ride and hang on tight. You learn to roll with the punches and find joy in things nobody else might. I'm often reminded of this little essay by Emily Perl Kingsley which so succinctly describes what it's like to be parenting a special needs child (no matter what those needs are).


Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, March 17, 2016

Stick to the Script

I had something of an epiphany today concerning Bear's speech patterns. He often likes to ask questions we've already established the answer to such as:

Q:What does Hi Ming do when I'm not there?
A: He takes care of me so I'm not lonely.

Q: Who took the "W" off Michael's computer?
A: Elmo did

Q: What happens if I don't listen?
A: I'd be very sad and disappointed.

And so on, and so on. There are dozens of questions, all with a prescribed, "correct" answer. Dependent on the day (or the hour of a particularly trying day) or mood, we either go along happily or get frustrated and say something like, "You know the answer to these questions!"

But after watching a video from the amazingly fantastic Special Books by Special Kids, I came to my epiphany. (Click here for the video!) Luke is simply trying to engage me in communicating. He's looking for me to play my part in his scripted conversation - which is comforting, safe, and predictable. He wants me to be a part of his world and be an active participant in this. I should be thrilled and excited! Kids with an ASD diagnosis want the repetition because it's safe and comforting, and why shouldn't he want his mama to be a part of something that is safe and comforting? Here's a reasons why he might break out his trusty bag of questions:

  • Inability or difficulty adequately communicating ideas via oral speech.
  • Difficulty knowing how to initiate or maintain a conversation.
  • Lack of other strategies for gaining attention in a positive way.
  • Need for information.
  • Need for reassurance.
  • Need to escape a situation that is boring or unpleasant.
  • Need to avoid transitioning to a new situation.
  • Desire to be social.
  • Need to be in control of the situation and/or attempt to keep the social interaction within his/her level of understanding.
  • Fascination with predictable answers.
  • Desire to demonstrate knowledge or competency by content of questions.
These ALL sound like Bear! It may seem like a "duh" moment - like, how could I as an ASD mom not even think this way up until now? 

Friday, January 15, 2016

Survivor Guilt

This week(ish) saw the loss of three creative souls. All to cancer. Any time I see someone has succumbed to cancer I always pause. Always. And I think:

Why am I still here?

Why is an insanely talented musician gone who contributed so much to so many different genres and touched so many people gone?

Why is a profoundly talented actor who brought life to a complicated literary character in a way that truly illustrated the complexities of said character gone? (Not to mention the countless other roles he played brilliantly.)

Why is a kind man who was a true partner to his talented wife gone?

And why am I still here?

Earlier in 2015 I lost what I called my "cancer mentor". She was my office mate while I was going through chemo. She had beaten cancer twice (TWICE) and was funny and spunky and so damn positive. She commiserated about losing my sense of taste and all the other screwy side effects. She kept germy kids away from me. She was so protective of me and made sure as soon as I looked kind of tired to send me home. She was BEYOND excited when Lucas was born and I think she looked at him (as I did) as triumph over the disease. I mean, if she couldn't beat it, how on earth can I if it comes back?

After cancer, almost any time I'd go for a run or go to a kickboxing class I'd see cancer as an opponent - and one I'd easily run away from or knock out cold. These days, it feels like it lurks in corners almost just out of sight, but letting me know it's still not gone from this world. (I kind of imagine it looking like either Orson Welles in "The Third Man" or the green cloud of death from "The Ten Commandments.")

It makes me worry that some day it will sneak up on me and take me out despite my best attempts at trying to stay healthy. It won't care that I have a son who needs his mama. It won't care that I probably am not done with my career. It won't care that I still have tons of music to make. It won't care that I try every day to do my best.

This is why sometimes I feel like I'm on borrowed time. And that hurts. It makes me try to squeeze too much out of things sometimes. It makes me feel like there's a checklist of things I'm trying to get done or accomplish to be a "good mom" or worthy of having been in the top of my class.

I'm curious as to how similar survivor's guilt is for someone who survived an accident or natural disaster as for someone who survived a deadly disease. And today I wonder,

Why am I still here?

This...Oh, So, Much, This.

I'm sharing this from a fellow blogger (read: way better blogger than me with awesome links and a non-template page) who nailed what a meltdown feels like and all the stages of it.

Thursday, December 3, 2015

What NOT to say to someone dealing with cancer...

While Thanksgiving and the "holiday season" may incite visions of sugarplums and gifts, this time of year ALWAYS reminds me of chemo treatments and hair loss. They are inextricably linked, never to be separated again. And that's okay - it reminds me to think of how much I DO have now, and how thankful I am that a. I was lucky enough to be cured and b. am pretty darn healthy now. But it does prompt me to think of that time, and being that I thought I might see someone in our peripheral world who is dealing with it right now I was thinking of the right thing to say to them. It's hard - you want to seem supportive of them without being glib or trite. I know that people (usually) have the best intentions, but here's a little do and don't list that seemed true to me. That's not to say that what I'm spouting here might be true for everyone - everyone deals with cancer differently.


"How are you feeling?" Because honestly, we probably feel like crap from the chemo, the side effects and the drugs to combat the side effects. Even if we don't physically feel like crap, emotionally it's not a fun place to be. Once I got really annoyed at the umpteenth person who asked and I responded, "Well, fine, other than the blinding foot cramps, the bone pain, the hemorrhoids, the pain from losing my hair, the hot flashes (from the drugs used to protect my ovaries/eggs), the mood swings, and the insatiable hunger from the steroids. Glad you asked?"

"Wow, you don't look sick!" While you may think this is a compliment, I always felt like, "Okay, should I look worse? Do you not believe I am deathly ill? Would you like my last blood count?" It can make someone feel pretty awful that they're feeling like crap inside and having awful (non visual) side effects - that statement kind of invalidates their feelings. INSTEAD....feel free to say, "Wow, you look great!" And elaborate: "You have so much color in your cheeks/Your eyes are sparkling" because quite honestly, it would have been nice to hear that when I had lost all my hair and had a puffy steroid moon face.

"Let me know what I can do to help" or "Let me know if you need anything" Really? I'm supposed to ask you to do my laundry or clean my house? I'm already feeling demoralized and marginalized. I can't take care of my own home and you think I'm in a place where I feel comfortable asking for help? Not to mention, I've got enough on my plate with doctor visits and medications without having to make a list of chores for someone. INSTEAD.......say, "I bought you a gift certificate to have your laundry done." or "I'm having your house cleaned for you" or "I made your favorite dish and it can go right in the freezer so you don't have to think about cooking." or "Here are gift cards so you don't have to worry about cooking". Don't ask. Just do. It will show that you REALLY do want to help. If you don't have the money or time to do that, just send a card. With a happy note or a scratch off.

"My uncle/cousin/brother/co-worker/etc. had cancer and this is what happened....." No. I didn't want to hear about someone else's experience second-hand. Nine times out of ten it was a different kind of cancer and I just didn't care. Sorry. I was concerned about me at the time. Unless the person had the SAME EXACT type of cancer and could give me tips on how to combat the nasty taste chemo would give me or some other helpful fact I really didn't want to hear about it. You never know what the person is dealing with medically.

"This will make you so much stronger." Um, I thought I was a pretty tough cookie before cancer. Yes,  I am a hard-core bad-ass now, but I didn't need some trial to make me stronger. Nor did I need it to bring my family together or strengthen the relationships in my life.

Any minor complaints about anything. No. This is a get-out-of-jail-free time for the person. You do not get to complain about ANYTHING to someone who is battling cancer UNLESS THEY ASK YOU TO. I had gone to a rehearsal and there was an individual whining about their shoulder hurting. Let's say I didn't handle the situation as well as I should.


"This really sucks." It did. And when people said that, it made me feel a bit of camaraderie.

"I'm sorry you're dealing with this." Again, it was nice that someone would acknowledge that it was unfair and rotten.

"Let's go have a cup of coffee and forget about everything and talk about stupid celebrities for a while." I loved escaping the yuckiness. Even if it was just for an hour. I liked feeling human again. In fact, I STILL like this - who wouldn't? :)

"I made a donation in your name to the (insert EXACT type of cancer person has) foundation" It made me feel like my fight meant something and incited a positive reaction.

"I had cancer and I survived." This made me feel amazing. I LOVED (and still do so very much) meeting fellow survivors. Of any cancer. Because no one knows how it feels unless you've gone through it. It's a horrible, rotten club, but one I'm proud to be a part of.

"I'm proud of you." or "You are an inspiration." My family said this a lot. It always made me feel like I was doing a good job of getting better. Which sounds kind of lame, but that was my job at the time. When you're sick, you feel like you can't do anything. You are probably tired and lethargic or feeling crummy.

While this is not an exhaustive list, it's still a start. I'd love to hear if someone was told something that really bothered them when they were sick or were tired of hearing or if someone said something really awesome to them.

Sunday, November 22, 2015

I'm sorry.

Yikes. I've been awful at blogging. So much has happened in this last year. And I struggle with just how much to write about, how much to share. But I still function on the pretense that maybe what I share can help someone else in a similar situation. It's how I felt about talking about my experiences with cancer too. Luke sometimes has some stickiness with transitioning from one home to another. Which is totally normal given the circumstances. We both try hard to alleviate it, but it still hurts to see him hurting. It reminds me of an incident from when he was a baby:

Luke was about 5 or 6 months old. Still in the little bucket. We lived in an upstairs apartment - the second floor of a house. The people who lived downstairs were sketchy - lots of arguing, he didn't let her out of the house, they had 2 kids. She had recently kicked him out. I had gone to dinner with friends and Luke's father was playing baseball one weeknight. I came back to a man screaming and yelling on the front lawn. Upon seeing me, he stopped, smiled, and said, "Hey, it's just me, Gerry". I ran inside (stupid stupid) and locked and barricaded my front door. I contemplated calling the police. I tried calling Luke's father to no avail, placed Luke on the changing table and just cried and kept saying, "I'm sorry. I'm sorry we live in a place where people act like this. I'm sorry you're seeing this aspect of life. I'm sorry."

And it just seems so applicable to now sometimes. When he's sleeping, I'll snuggle him up and whisper in his ear. "I'm sorry. I'm sorry your life is lived in 2 different homes, I'm sorry that sometimes you're sad from my actions. I'm sorry." I think a big part of parenthood is just being sorry for anything that causes your child hurt. And remembering that incident illustrated that no matter what the situation: both parents together, parents apart, no matter how old, there will be unpleasantries that you as a parent feel so responsible for.

Nowadays I try to turn the negatives (or perceived negatives) into positives: "hey! you have so many more people who love you now!" "Wow! Now you get really special time with Mom and with Dad". But sometimes all I still want to say is: I'm sorry.

Wednesday, November 19, 2014

Down Memory Lane

I took the long way to the oncologist this morning. Meandered down Jericho Turnpike to 347. Which meant I passed the following:

-The general practitioner's office where I went countless times during the summer of 2004 complaining of a cough that wouldn't go away, which then gave way to fevers, night sweats....
- The pulmonologist's office where I was told, "That isn't pneumonia" after another chest x-ray, and "you need a CT scan tomorrow". Where I was also told, "Well, whatever it is is treatable and curable" which made me much less fearful of what was waiting for me down the pike. What he saw on the CT scan was so bad that he didn't even charge us a co-pay for that visit.
- The thoracic surgeon's office, where we talked about possible surgery and later talked about a port install. It took me forever to remember how to pronounce Dr. Mohedrin's name.
- The now-vacant site for J&R's Steakhouse where I had my first real meal that tasted divine after months of not tasting food and not being hungry. What sticks in my mind most about that is a beautiful country breakfast (eggs, super thick bacon, biscuits, and potatoes) placed in front of me and just not even seeing food. Ironically these days I'm a (mostly) vegetarian. Mostly.

Then once in the building, I walk by the entrance to the "infusion center" where I spent nearly two (non consecutive) weeks having chemo drugs pumped into my system. I remember so much about those days - tucked under a blanket, PICC-lined arm hanging out to be monitored. I remember that no matter what, I insisted on wearing at least an "ensemble" of comfy clothes and always the brown sweater - big enough for my swollen and tube-plagued left arm- which to this day is comforting and cozy. I remember lots of chicken cutlets and barbecue potato chips (which I now can't even look at). I remember that they called the giant red syringe of adriamycin the "hair killer" and when giving me the (relatively) small syringe of vincristine saying, "here's the one from the beautiful flower!" (Which may be a contender for a future tattoo...just sayin'.)

I walk by the exam room where I withstood a bone marrow biopsy. (Dr. Berger says, "Okay, we're going to do a bone marrow biopsy to make sure it hasn't spread there." Me: "Don't we need to be in a hospital for something like that?" He just smiled.) I walk by the room where at my very last visit with Dr. Berger he met Lucas - just 3 months old and snug in a little carrier.

The exams these days are more of a visit with an old friend than a reassurance that the cancer isn't back. Julie and I share pictures of the kids (born 10 days apart!), talk about theatre and what shows are playing to take the kids to. Oh, and by the way, you're still healthy. I feel more like a visitor than a resident to Belle Meade Road. And that's fine with me.