Incompatibilities

• My daughter and a full bottle of kiddie shampoo. Five minutes alone and she will empty that thing onto any surface she can find, swish her hands around and call it science.
•  A migraine and taking care of three children. I just stole one of Jake's Maxalts because I got the little aura so badly I almost couldn't drive home from the car wash.
• My kitchen counters and organization. No matter how diligently I sort the mail or put things away as they come into the house, our kitchen is a thoroughfare and a drop zone for things moving from one place to the next. 
• My Internet connection and consistency I have had the spinning wheel of Mac death every time I click, despite rebooting. I can't even play Bejeweled because the connection keeps dropping...but only for 2-4 seconds at a time.
• My body and sleep. Okay this is not entirely true. I love to sleep. Actually I love to nap, but the only time I feel like I can have any peace in my mind to work is after the children are asleep, and by then I am tired, and my brain doesn't work as quickly, so things take longer...and it is a bad cycle.
• My son and clean hands. That boy loves to eat, and he loves to play in the dirt. Between the two I have yet to see a day when his hands did not require a reservoir-draining amount of water to get to a non-hazard state.
• My dining room table and dining. Right now the dining room table is my desk and Cross Country adventure headquarters. Two chairs have boxes on them where we have been tossing items  we need to remember to pack, like headlamps and kid sunglasses and toothbrush covers.
• My blog and consistent posting I think I can finally say I have too many things going on, and I am not nearly keeping up with some of the most pressing things. Descartes and I will launch our big adventure on www.haveautismwilltravel.com, well I suppose it's already there. So I do hope I will post more content before we leave, and that you'll follow along on our trip.

************

I wrote this list earlier in the day, in about 11 minutes, possibly less. This was the only time my daughter and her girlfriend were unsupervised. I heard them go downstairs to play dollies in Lucy's room. I was just going down to check on them when they re-appeared at the top of the stairs. 

They were naked, giggling and  

covered in toothpaste. 

bright blue, bubblegum scented (and flavored) toothpaste.

playdate over. 

mommy. all. done.

Whose Life is This Anyway?

He did not put any cake on me because he is a very nice man.

I'll admit, I thought being married would be easier.

In this day and age I thought that gender boundaries would have been quashed. I thought, that since I had clearly married the most romantic and kind man in the world that the sparks that flew in the beginning would be only the base for the fire of our life and that the sweet man I chose would never have a mean thing to say. I thought I would always, and in every way find him charming.

I knew we were better together than separate, and that once together we would be unstoppable in our careers, our travels and our desire to have adventure and novelty. Upon meeting us, I was certain I would continue to hear from new friends what an amazing couple we were.

And having found such an amazing guy from such a solid family,  it never occurred to me that parenting would be anything but joy and pride, with the brilliant little offspring we would create. Our children would be perfect, and well-mannered, and their successes would only bring Descartes and I closer and closer together. Our family would be a vision of success, and happiness. Our parents would be so proud.

yes, I DO have red hair in these photos

I thought I would always be a loving and caring wife, who thrilled at pleasing my spouse.  I thought I was perfectly suited to being married to this man, and when we smiled at each other throughout the entire ceremony I truly thought I would always be that happy. The optimism that surrounded us like a rosy bubble of delight could never be burst, and the people we added to our life would only be more successful and wonderful than we are.

 *******

Our life is so very different than I imagined, and yet we are so much better than those people I thought we would be. Our marriage is so much more real, and raw, and I love my husband so much more deeply than I ever thought I would.

And we are much better together than apart; Descartes and I know each other now. After 12 years we really do know each other, but thankfully we are still learning too; what it looks like to truly support someone in their life and career, how to care for each other when we are both in despair. What we have learned is that we travel well, and we're not scared of really anything when we are together.  Between the two of us, with his strength and my map reading skills, we can get out of almost anything, or into anything, like this cross-country adventure we are almost done planning.

We like each other too. Even when we don't get along, we are good roommates, except for the dishes, which apparently no one wants to do, and we continue to negotiate after 14 years of living together.  I genuinely like my husband, a lot. I think he's funny and smart, and handsome. And the way he builds things, and knows things is amazing to me. Just this morning, he 'hacked' a camera, breaking in somehow and changing lines of code so it would do what we want it to do-- the only obstacle he faced was our four year old daughter sitting on his head.

1998

I'm not as 'nice' as I used to be. I don't think I was ever nice actually. I think I've always had a dark sense of humor and a bit of a snarky streak, but I used to have more optimism. I used to track fewer things, so it was easier for me to remember what is actually important. And I'm sure I am not easy to live with because I demand that you read my mind and prioritize life in the exact same way I do.  I think I am more demanding, but perhaps that happens to many people as they age and know better what they want from life. Descartes is a patient man, tolerant of my drama, but he's figured out how to bust me out of my perseverations, and move our family on to better things.

2010

Parenting has done more to strengthen this marriage than just about anything else. Holding hands during a sonogram while we wait to see if Lucy was growing with all of her parts in the right places, holding each other in a parking lot when we got Jake's first batch of diagnosis from the first official place, helping each other through 52 days of Jake not sleeping, taking turns swinging him or driving, trying to not to yell at each other or our child. Many couples have a few months, maybe a year of disturbed sleep patterns, then they can look back and laugh. We have a life where hard things happen often, but we have learned not to wait to laugh; or at least we try. I think many big, sad things are behind us, and as much as I am rather pragmatic these days, I think I may be coming out of my pessimistic days. Descartes has just been waiting for me, patiently, ever the realist with the ability to take stock, reassess and move on.

I know that my life would be different had I chosen someone else to marry, if someone else had chosen me, but I am so glad Descartes and I chose each other, and that we have this life. I know it's not all perfect. But I think our parents are still proud of us, and I'm pretty sure Jake and Lucy will grow up to be decent human beings under our watch, so at least we know we've maintained one small piece of continuity in this world.

****

I love you my precious husband. 

Thank you so much for another year of life, this wonderful life with you. 

xoxo, 

me

p.s. please consider this your anniversary card. I was not able to get to the store.

That Rush

• Singing Pat Benatar Love is a Battlefield in front of a crowded bar...or singing just about anything in front of a crowd.
• Coasting in to the yard in Tahoe after a bike ride home from the beach.
• Booking a dinner reservation for ten people in New York City to break bread with great people at BlogHer '10
• Watching my son, who appears to be walking aimlessly on the periphery of the group, laugh just before the punchline of a story I'm telling about him, because he's heard me tell the story before, and knows what I am going to say next.
• Looking at a map of our Great Cross Country adventure we are planning.
• Discovering vegetables growing in bounty in our mildly neglected garden.
• Hearing my daughter tell me I am "beautiful candy-sweetness", because I know how much that girl loves candy.
• Making dinner for my family and friends, and watching everyone tear into my homemade cherry pie.
• Just thinking about taking the train from Washington D.C. to Penn Station, by myself.
• Dancing with my husband.

Resistance and Resilience

Four years ago we were sitting in a hospital room. That's Jake on the floor trying to feel the cool of the hospital floor, and that's Lucy, nursing, and that's me, tired, scared, and trying to smile, knowing that these were the baby photos Lucy would see someday.

Lucy was 4 weeks old and Jake had  Methicillin-resistant Staphylococcus aureus (MRSA).

The only isolation room they could find for us was at a hospital in a town 25 minutes away. We didn't know any of the doctors at this hospital, though the doctor who cared for Jake was in residency with our regular doctor. We had never been to this hospital before we checked in, and were immediately escorted to a room across from the nurses station. They placed us in a wing where pediatric patients who needed constant monitoring, but were not ICU, were housed. Because we were so contagious, and they assumed we all were carriers, we were not allowed out of our room except to leave the hospital directly, without stopping. We couldn't even get our own coffee from the room across the hall. We were not allowed in the cafeteria. People gowned and masked before they entered our room, speaking to us dressed as yellow papery ghosts, and I had a newborn. Jake had a wound that grew so fast, and had such a hard time going away that they drew a line around it in black permanent marker so we would know how we were progressing or not. Descartes slept on a tiny little fold out cushion chair for three, or was it four, nights in a row, while I drove back to our house each night with our tiny baby girl. It was horrible, and because of the wound placement, we were all fearful that it would get into his hip bone.

I have never been someone who is scared of people in the medical profession. I am not afraid of blood, or guts or gore. It takes a lot to make me queasy, and I always want to know why. My whole life I have wanted to know why, and figure out a way to fix things. I have tremendous respect for the medical profession, but I have figured out that I actually am as smart as some of those people, I just chose a different path, and this hubris served me well when Jake was covered in horrible wounds that would not heal. I was also so very lucky to have a doctor in the practice who knows us, outside of the office as well, and she knows I am not a sissy mom who brings my child in for the sniffles. When I took Jake to her that day, on only day three of the second round of heavy duty antibiotics, she trusted me when I told her it was getting worse, not better, and that the drugs were not working. I had been watching those red patches, counting them, and I knew. She trusted me, and she made the calls and found us a bed a 6pm on a Friday. Under normal circumstances she is a great doctor, in a crisis, she is an amazing doctor.. (and I will have to ask if I can link to her before I actually do. Can you please ask her if I can M.D.? I know you read this;) )

After we checked in, got Jake settled into some regulation jammies made of some crazy non-flammable material, a doctor came in to see us. She was kind, and greeted us with the proper amount of decorum and an air that let us know she was in charge, because of course she was in charge. Then she told me that Jake would need to have seriously heavy-duty, one-step-down from military grade antibiotics. Fine. Of course. And then she said he would need to have an I.V. for 40 minutes every two and a half hours.

Oh dear.

This post-partum mommy went nuts. I was holding Lucy, possibly nursing her, and I know I raised my voice. I'm sure of it... and I said something like,

"ARE YOU KIDDING ME? HAVE YOU EVER HAD A PATIENT WITH AUTISM IN YOUR HISTORY IN THE MEDICAL FIELD?"

and I continued...

"WE NEED TO KNOCK THIS KID OUT TO BRUSH HIS TEETH, AND YOU THINK YOU ARE GOING TO GET HIM TO SIT STILL WITH A NEEDLE IN HIS ARM FOR 45 MINUTES EVERY 2 1/2 HOURS?"

She looked a little bit, uhm, surprised, and hurt, and stunned, and miffed.

I said, "YOU ARE GOING TO NEED TO GET CREATIVE HERE. GO FIGURE IT OUT!"

and she walked out of the room.

My precious husband said, in the nicest way, and with only a little bit of fear that I might have a knife and be okay with using it... "Honey, that's the person who is going to be responsible for helping our son get better, perhaps you could go a little easier on her?"

A few, not many, but a few minutes passed, and the same doctor came back in...with a book in her hand, open to a page three quarters of the way in.

"What about a shot of the same drug every hour and half? A muscular injection. And we could put it closer to the site of the wound?"

And I clapped my hands for her and gave her every amount of praise I could muster. WHOO HOOO!

Of course I then had to convince the nurse, and the next doctor, when our first very smart, creative doctor had to leave, that we should only put the shots into one side of his body, the side with the big wounds. They said it would be too painful, and I while I understood that, I had thought this one through. I explained that my son only had one side he could still rest on, only one side that did not have a 2+ inch nasty, open wound, and if they took that away he would never sleep. The doctor rolled his eyes at me...literally rolled his eyes, and the nurse, he said, "Wow, I've never thought of that. So the patient can actually still rest comfortably, at least on one side."

I nursed my baby and rocked her to sleep.

It took 3 1/2 more days for the last wound to go down to a level that we could leave the hospital. We watched that last wound slowly shrink from its black outline, reminding me of an atoll on a map. When it looked like we were headed towards health, they let us go home, but his treatment was not over for another week or so. We drove him back to the doctor for a few days after that, twice a day, so he could get additional injections. I think he was on antibiotics for nearly three months by the time he was finally healed.

He has only a tiny scar on one hip, so small now most people would never notice it, but whenever I see it I remember how scary it was, how deeply infected my poor boy was.

*********

This part is bragging: We have never had the MRSA come back. This is pretty rare, because it is really hard to shake. We put a bit of bleach into Jake's bath for nearly two years. We still do not reuse towels (on the kids). We have hospital hand pumps with anti-bacterial at the back door, and in several other places around the house. We swabbed our noses with a special ointment for months. We use gloves for diaper changes. We hot, *hot* dry our sheets, blankets and towels.

Every Dog Has His Day

a girl and her dog

We are a lucky family. There's really no other way to see it, at least when it comes to dogs.

When I first met my husband he had two dogs, Buddy and Shadow. Buddy, a golden retriever was sweet and was a snuggler, always wanting to put his snout under your hand to encourage you to pet him. Shadow was a border collie, and a princess. She was in charge, and one of the smartest gals I have ever met.

I remember going to Descartes' boat, where he lived, and walking the dogs for him when he got stuck late at work. It was the most frightening thing to take those two beloved animals out to the field, and let them run without their leashes. It wasn't scary because they were in danger, it was a safe place where dogs were allowed off leash. No, it was scary because I knew that if anything had happened to those dogs, my relationship would be over. The dogs were in his life before I was, and I knew that if push came to shove, at least at the time, I was fairly certain they would win.

Buddy and Shadow were our first kids. We cared for them together in our new marriage. I cried when I dropped them off at the kennel for our three and a half week honeymoon. Their presence in our life dictated where we lived (not San Francisco, because in 1999 rents were sky high and no one had to take a couple with dogs, no matter what their income or credit report scores.) I think we actually live on the peninsula because of those dogs...we just kept heading south until we found a decent city that would let us rent with animals, and when it came time to by a home we started with the familiar, which was this neighboring city.

Buddy and Shadow were Jake's first dogs. They loved him, and never flinched as his hands clutched fur, his variable grasp not ever knowing how hard or softly to hold things. They made him laugh. When Buddy got liver cancer we were devastated. We went through several surgeries, each one getting us a few more weeks with him. He passed away at home on the cool of the tile in the hallway when Jake was one.

Shadow moved back on to the foot of the bed, and reigned supreme at our house. We fed her steak and rice with melted cheese. I pulled ticks off of that dog, and she loved my little boy.  Shadow lived until March 20, 2003. I remember the day because or entire house had fallen apart slowly; first a horrible stomach virus swept through, then we had a broken microwave, a broken rice cooker, and a broken computer, then the tub backed up into the sink, the sink drained into the wall, flooding our downstairs, war broke out in Iraq, and then the dog died.  She just closed her eyes, sighed and died in my arms at the vet's office.

Dog free, our house was cleaner, with uncomplicated travel plans, and it was quiet, and clearly we were missing something. It was difficult, but we decided to wait awhile to get any animals. Looking back, we had also decided to wait to get pregnant again. By this time it was increasingly obvious that Jack had significant disabilities. That fall he started early intervention preschool and rode the short bus for the first time. Our plans to have a second child were back-burnered for the foreseeable future while we figured out what kind of life we we were going to have. Jake had intense sleep issues, and some self-injurious behavior, and could barely walk independently, even at three. Our life felt a little bit out of control. Someone used the word "autism". We did genetic testing. We saw neurologists. We went to a million different agencies and doctors, and I started this blog.

Lucy adoring Bilbo (with family friend V.)

Somewhere in there we found out about NorCal Golden Retriever Rescue. We somehow, swiftly and happily became owners of Chandler and Bilbo. They came with the names okay? Chandler Bing and Bilbo Baggins. They had not been mistreated in their previous home, just neglected a bit in a "we have a newborn and a small dog, so we don't want anything big around our little tiny things" way.

Bilbo had a snaggle tooth, Chandler had a block head. They were both a beautiful red, and friendly to all they encountered, unless you were a raccoon or a deer or a black cat in the front yard. Bilbo was a love, patiently standing nearby lest you felt the need to scratch someone's head. Chandler was happy being a pillow, a wrestling bear or when unmonitored children were nearby, a step stool.

They were a great pair, brothers from different litters. They happily curled around each other in the back of our van and rode to Tahoe, or any other place, mostly they played with our children. They were Lucy's first dogs, and they loved her.

Bilbo died last summer, after several procedures to drain the fluid from around his heart. He was 9 years old. After the last big procedure we thought we would have some more time with him, but he passed away only five days later, choosing the same cool spot in the hallway that Buddy chose to spend his last hours.

So then there was Chandler. We thought about getting him a companion, but he was fine being solo. He was so easy going and friendly. He would sprawl across the living room floor, letting Lucy use him as a pillow as she watched TV. He was a joy to travel with, and loved playing in the snow when we went to the Sierra Nevadas. Big and fluffy, the ice would stick to the bottom of his coat when he shoved his nose into piles of fresh powder. He got along with other dogs, little children, puppies, old people, everyone except the black cat and the deer in the front yard, and as he aged he would simply put his head out the dog door to bark at them. He couldn't even be bothered to push his whole body outside to tell them to go away.

He got old fast. In a matter of weeks, he went from a little bit of a slow, chubby, dog to an old man who couldn't see to walk down the stairs at night because his cataracts were so bad. He stopped coming upstairs last week, then he stopped coming down the hall, then he just laid down in our room, at the foot of the bed.

Chandler 2000-2010 

He was a good dog. They were all good dogs. Friendly, loving, good to our children, and guests. We've been lucky, so very blessed by all the good natured doggies in our life. I keep trying to think of these furballs as 'animals' and they keep finding a way into my heart. I can't imagine our life without them

Lucy noted, "We can always get a new dog, but we will always miss Chandler." And we will. Thank you Chandler for being such a lovely, treasured part of our family.