What Could Have Been

I watch Jelly playing with some nine year old boys at the beach. These aren't just any nine year old boys, these are my best friend's twins. They've known Jelly since birth. My friend and I talk about how remarkable it is that kids of very different ages can play together so well, especially at the beach. There's just something about digging in the sand.

It was a lovely family outing. Except it wasn't really a family outing, not for my family anyway. Jeff and Moe weren't there. Of course they could have come, they were more than welcome. One of the boys even commented that the was sad Moe couldn't come, because he knows how much he likes the beach. They're good kids.

These friends stay at the beach for a week or so every year. The first year we visited them there, Moe spent the entire time running straight into the ocean. It was a little scary but Moe loved it and was still pretty small. The second year was a little better. Two years ago, he just ran and ran and ran on the sand and when he wasn't running in the sand he was eating it and it wasn't much fun for anyone. Last year, we canceled at the last minute because Moe was going through a really rough patch.

So this year, we decided I would just bring Jelly. Jeff would take Moe to the pool so they would have something fun to do as well. Jelly and I had a great day. It was relaxing and fun and everything a day at the beach with kids should be. 

But a story was playing in the back of my mind. The same story I tell myself over and over again. 

Jelly deserves a big brother she can play with.
Why can't we take a family vacation to the beach?
This is how how life is supposed to look.

And then I feel guilty for not just enjoying the moment. For not believing my family is good enough as is. For resenting autism and focusing on all of the things we can't do.

I've been reading a book, "The Reality Slap: Finding Peace and Fulfillment When Life Hurts," based on Acceptance and Commitment Therapy (ACT). This type of therapy is different than Cognitive Behavioral Therapy in that "rather than trying to teach people to better control their thoughts, feelings, sensations, memories and other private events, ACT teaches them to 'just notice,' accept, and embrace their private events, especially previously unwanted ones." (Wikipedia)

ACT teaches that these "what if things were different?" scenarios are just stories we tell ourselves. I don't have to fight them, but neither do I have to give them any weight, especially when they aren't helpful. It's been a good strategy for me.

But it isn't easy. 

It's one thing to tell stories of what might have been in the abstract. I compare our most difficult times with others' perfect social media stories, or some notion of how things could have been. But during my day at the beach, I was experiencing that life. It wasn't entirely easy or perfect, but it was was infinitely closer to the family life I had imagine. The one I ache for.

Thankfully, the other thing ACT teaches is to treat ourselves with kindness and compassion. To recognize these feelings of loss and grief just as a friend would. So this week I'm working on that. On understanding that dealing with a life more challenging that I had expected is hard and that I am a work in progress. I am imperfect, but I am learning.

Overwhelmed

I turned 40 earlier this month. To celebrate, I spent last weekend in San Francisco with friends. I knew we would have fun. I knew we would eat and drink and relax. But what I didn't know was how overwhelmed I would feel.

I am often overwhelmed--with, with stress, anxiety, with too much to do and too many decisions. But this wasn't like that.

I was overwhelmed with gratitude for a husband who gave me a weekend off, just because he wants me to be happy.

Overwhelmed with love from friends - ten! - who spent all or some of the weekend with me.

Overwhelmed with generosity of friends who not only spent their time and money on a vacation, but on beautiful flowers and gifts.

Overwhelmed with delicious food and beautiful weather.

And then, when the weekend was coming to an end, overwhelmed with bittersweet sadness at saying goodbye to two friends who moved far away. The time with them meant everything and life is such that it is hard to visit. But I will try.

So...to New Beth, Beth Classic and Beth 2.0, to Karyn, Cynthia, Lyn, Danielle, Jill, Phoebe and Francesca, thank you. Thank you for the weekend, and for so much more.

A day at the beach

This past weekend, we visited some friends who have been renting a house in Capitola, a great beach town near Santa Cruz, CA. It is an easy drive there, and the beach is such a fun place for kids.

Moe loves the water. Splashing in the water table in the backyard is one of his favorite activities. He is happy as can be in a swimming pool and bath time is such a fun activity that we’ve been trying to correlate whether taking a bath before bed actually makes sleeping harder for Moe. So it was no surprise that he absolutely loved the ocean.

When we got to the beach, Moe immediately took off running. There was so much sand and space! But when he finally saw the ocean, he knew where he wanted to be and made a break for it. He absolutely loved splashing in the water. Unfortunately, he has no sense of danger at all so one of us (usually Jeff) had to be by his side every second. As Jeff put it, if given the  chance Moe would just run straight into the water and keep on running until he drowned.

Capitola is cloudy in the mornings and it was only about 60 degrees out. When we finally dragged Moe out of the water for a snack, he was shivering, trying to wrap the towel around himself as tight as possible. We got him dressed and warm, but as soon as snack was done, he wanted right back in the water. We spent the rest of the day chasing him, making sure he didn’t get soaked. He only sat still when he was eating or when we buried him in the sand (which he quite enjoyed). This seemed, at first, like a brilliant plan, but didn’t keep him still for very long.

While Jeff was chasing Moe, Jelly was digging in the sand and just looking completely adorable. She played ball with Grandma and Grandpa, noticed all of the birds, and generally got very, very sandy.

 

As I mentioned in my last post, going anywhere with Moe has its challenges. I want to take him places, not just because I want him with us, but also because I think it is important for Moe to learn about the world. He needs to see how other kids play and act, and learn what is expected of him even at the beach, a place where it would seem very little is expected of you. Overall, it was not the most relaxing day on the beach, nor did I expect it to be. Moe deserves a chance to have his own kind of fun, and if this isn’t pure joy, I don’t know what is. What more could a mother want to give to her child? 

Why it’s hard

Sometimes I wonder if being Moe’s mom isn’t quite as hard as I make it out to be. Aren’t all three year olds are challenging creatures? Moe can’t talk, but he can jump and run and laugh and what else does he really need to do right now? But invariably, something will remind me that Moe isn’t just any three year old. He is delayed, difficult, “special.” As he gets older, it becomes more obvious, and, over a year into this, it still feels like a slap across the face every time.

Two weeks ago, we were invited to two parties on the same day. The first was a small birthday party for a three year old girl. It was just a backyard playdate, with a kiddie pool. Most of the parents could sit and chat, while keeping an eye on their little ones to make sure they were safe and playing nicely together. Moe loves water, so the pool was great fun for him. He’d play in the water for a while, but then he would get out and run the perimeter of the yard, including right through the rose bushes or along the side of the house where we couldn’t see him. By the time we left the party, he was scratched up from rose thorns, and we were worn out.

Off we went to party #2, a large going away party for friends. After averting Moe from grabbing a huge chunk of cake from the table, we directed him to the bounce house. He’s only recently figured out how to jump but now that he can, he loves it. He climbed right in and had a great time. Jeff and I could actually talk to some people while we kept one eye on him. It was how we imagined “normal” parents are at parties. That lasted about 15 minutes. Then Moe noticed the slide on the side of the bounce house. He wanted to climb up the slide part, rather than the stairs. But of course other kids wanted to come down, and Moe has no sense of danger or of being in the way. So we were back to having to be on top of him, redirecting him away from the slide over and over again. After we leave a party, I’m always left wondering why we bothered to go.

Even at home, things have gotten challenging. Moe is getting taller and stronger, able to climb and generally get into more trouble. We try to keep the house safe for him but he seems to always find something: splashing in the fish tank, turning on the bathroom sink if the door is left unlocked, or throwing the makeup out of my drawers. Today he took a glass of water off the kitchen table and threw it on the floor. In the back yard, he’s started eating mud – only occasionally but enough that we have to watch him vigilantly. When Moe is awake, there is very little down time and it is exhausting. I’m tired of having to tell him no all the time.

I want to take Moe places, but at the risk of sounding completely selfish, it just isn’t fun going out anymore. We do it so he can have some fun and learn socially acceptable behavior, and so we don’t lose all of our friends. But wherever we are, we are all about him. At home, I know that it is best to keep Moe engaged in safe, appropriate activities. But finding those activities is tough, especially with a 15 month old who does not like to share the spotlight.

Autism affects the whole family in so many ways I never could have predicted. Life is hard right now, and it is taking its toll on all of us.

Ten Reasons I Heart My Book Club

My favorite night of the month is book club night. I love my book club. We’ve been together for seven years and in all of that time, I’ve missed maybe two meetings. I make it a priority – it is important that I go. My husband understands that and makes sure to be home early so I can make it. I’ve been in other book clubs, but there is something about this one that just clicks.

I’ve been wanting to write about this amazing group for a while, so today, I give you, the top 10 reasons I love my book club:

10. We have history: This book club has been together for seven years. It has changed over time, with members moving to Colorado, Chicago and even Switzerland. New members have taken their place. But a core group of us has been here a long time, and with any group with some history gives the group an ease and comfort that I love.

9. We are organized: We have an Yahoo! group. We have guidelines (no books only available in hardcover, all books have to be new to everyone in the group, the host suggests the next book), but have broken all the rules at one time or another. This keeps things running smoothly, but isn’t oppressive or annoying.

8. We are diverse: Although every member of the group knew either me or my BFF before joining, we have a pretty diverse group of women. Some work, some are stay at home moms; some of us have kids, some don’t; some are married, some are single, and one might as well be married to her boyfriend of like 17 years but for some reason is not; some are vegetarians; one rides a Harley; our pets include cats, dogs, fish, rabbits and a bird who has provided quite a bit of drama over the years.

7. We laugh: As adults it seems we don’t laugh as much, or at least with as much gusto, as we did we were kids. But there have been times in book club when we’ve lost it. I will never forget the story, told on one occasion when we were out at a restaurant, about one member using an, ahem, “marital aid” to help induce labor. There is nothing a good laugh cannot fix.

6. Nothing is off limits: See number 7. We talk about everything and anything. Sometimes we even talk about the book we read.

5. We eat: We are not officially a food or cooking club, but most of us really like to cook, or at least eat. A few of our members are vegetarians, so for me (a meat-eater) it is an opportunity to try out a recipe I might not otherwise try. Sure, we’ve had a few pizza deliveries, and that’s been good too.

4. We drink: See number 7. There is nothing better than walking into a room where the first thing said to you is “red or white?”

3. We are not about autism: I have a stack of books about autism. Any time I am not spending with an autistic child I could spend reading about other autistic children, and research on autism, and therapies for autism. But book club gives me a reason to read something else, and book club meetings give me a chance to talk about something else. Sure, it comes up, but it isn’t what book club is about and that break is worth everything.

2. We see each other outside of book club: I worked with a few of the book club members at previous jobs. Others are friends I met through moms groups. Book club has been a way for me to stay connected with some of my favorite people who I might otherwise not get many opportunities to see. And by staying connected, we’ve also made plans to see movies, go to brunch, and get our kids together, much needed breaks in between book club meetings!

1. We sometimes read the book: We want to be a committed book club. Really, we do. We all try to read the books and talk about them. Some books provide better discussions than others. But even if someone doesn’t read the book, she comes to book club anyway. Because for us, book club is more than just a book club. It’s about friends. (And wine.)

I wrote this post in list form, as task #2 for the 31 Days to Build a Better Blog challenge. It gave me an excuse to write a post I’ve been thinking about for a long time. Thanks, girls! See you Thursday :)

Coincidence? I think not.

I was talking with a friend this morning and he said "I feel like you were meant to be here today." I'm not an especially religious or even very spiritual person, but I do believe that some paths cross for a reason. It's not quite fate or destiny, but definitely more than mere coincidence.

One of my favorite books is "A Prayer for Owen Meany" by John Irving (later made into the movie "Simon Birch"). That book has a perfect ending. Everything that has happened to Simon throughout his life comes together so that he could be there at one, precise moment, saving a bus full of children. No one else in the world had the unique set of experiences that allowed Simon to save those children. He was meant to be there.

Yesterday would have been my brother's 33rd birthday. Six years ago, he died of a brain tumor. After his second surgery, he was left with very limited us of his left side, and didn't have any fine motor control over his hand. One day, a good friend of mine, who I've known since the first grade, and who knew my brother since he was about 2 years old, came to visit. Since birth, she has only had the use of one hand, and she showed my brother how to tie his shoes. As I watched, I couldn't help but feel that our entire friendship led up to that moment. It felt like more than coincidence.

Another friend of mine, who is like a sister to me, has twin boys. These boys were born many weeks early, on my brother's birthday. Every year on November 19, I am given the opportunity to not feel sad, but to have something to celebrate. It feels like more than a random occurrence: a life is taken, another is born. (Or another two in this case. I always say that it took two people to replace the hole that my brother left behind.)

I'm sure everyone experiences these lucky coincidences. With so many people in the world, we are bound to run into others who happen to be in the right place at the right time. Every decision we make leads to another. But it is so much more interesting to think that there are other forces at work, more than mere randomness that brings us together. Maybe this will be my new religion. I'll call it "coincidentalism."