My Journal at 35

As a little girl, I kept a diary. I entrusted my deepest secrets to this silent confidante, my safe haven. My diary was a mute therapist, a free space where I could speak my mind without shame or fear or reprisal. My diary was a little hidden piece of me, tucked away in the dark recess beneath my headboard.

My childhood passed into adolescence, and the stack of flowery little diaries gave way to a neat pile of black-and-white Composition Books straight out of a 1950s high school movie. My diaries had become journals. My journals had become a project. And along the way, I had become a writer.

Today my old diaries and journals are stored away, rarely opened but always held onto, tied in bundles with red satin ribbons, living in perpetual safekeeping like so many baby photos and pressed flowers. I doubt I’ll ever let them go. They are little, written portraits of me. And, when, on rare occasions, I look back at them, I notice one overwhelming trend that holds true from my 4th-grade, Holly Hobby, lock-and-key, 40-page mini-diary to my leather-bound traveler’s journal from my senior year of college: They’re all incomplete. Every single volume has at least one big, huge time gap.

So it should really come as no surprise to me that I haven’t written anything longer than a grocery list, Facebook rant, or Twitter Tweet in over a year. During the busiest times of my life, when, presumably, I’d be likely to have more to say, my journals are silent. Months of nothingness are followed by long catch-up entries showing changes in my penmanship or vocabulary, activities or friends.  And I realize now, as I look at my blog, dormant for this past year, that this is what my diary looks like at 35. My blog is the 30-something version of my Anne-Frank-inspired pre-teen thought purgings, literally poured out to my dear “Kitty.” I still leave huge gaps in my journalling when I’m busy or stressed or both, but now pretty much everyone I’ve ever met knows about it. And, oddly enough, while that public “failing” would have bothered me tremendously at 15, today, I feed on the challenge to come up with something worthy of having made my devoted tens of readers wait a year.

But, a year? Where to begin? I suppose the biggest issue of 2009 in the Cohen household was sleep deprivation. Will stopped sleeping in December of 2008, and for the next twelve months, not a single week passed during which he slept through every night. This translates roughly into Marty and I sleeping about half as much as he did, seeing as neither of us was able to go to bed at 6:30 in the evening. Three, four, and five times a week, he would be up in the night, screaming, crying, and banging his head on the wall or the floor or the doors or one of us.

It took four ear infections, including one double and one ruptured ear drum before we could see the pattern that his night-time tantrums were worst in the day or two before we’d end up at the pediatrician getting an ear infection diagnosis. Given that Will doesn’t speak, and therefore couldn’t tell us what was wrong, that diagnosis would generally come once he sprouted a fever and began screaming in pain and, rather counter-intuitively, banging his head on anything he could find. And as the nighttime wakings became habit and happened without ear infections, it took just that much longer for us to see the pattern.

The head-banging became a full-time problem. Will’s school suggested, rather adamantly, that we put a helmet on Will. This, after I called a meeting to discuss getting more staff in Will’s classroom, having been called down to pick him up twice in three months due to head injuries, one resulting in a concussion and a CAT Scan. A nighttime trip to the ER with a child who cannot tolerate new environments, bright lights, or loud noises was, to say the very least, absolutely awful. Marty and I took turns leaving the exam room to breathe or cry or just not be getting smacked by our completely panicked, confused, injured, darling son. We held him down for the CAT Scan, and I sang his favorite songs while he lay petrified on the table. When it was over, I walked into the hall and collapsed in tears. Overall, not one of the better days of our year. Or our lives.

I rejected the school’s helmet request, despite Will’s head-banging and injuries. Of course they argued with me, seeing potential law suits, but I’m used to having to say, as tactfully as possible, “This is my son, and no matter how long you’ve been doing this, you don’t know him better than I do.” I knew a helmet would only increase the behavior when really what we needed was to teach Will how to express his needs appropriately.  Not easy for a non-verbal child or one with all the social idiosyncrasies of autism. I began photo-documenting the “minor” injuries: goose-eggs and bruises that appeared across his forehead on a weekly basis. I found that fewer than 10% happened at home. This told us that the school, despite having truly phenomenal staff in the room, needed even more staff and better ways to handle his behavior. Will was trying so hard to tell them something, and in the absence of anyone available to listen at a second’s notice, he did the only thing he knew would get their attention. It was also the one thing sure to break my heart.

We worked with the school, Will’s therapists, our doctor, and anyone else who would help. We started working on using iPod Touches with special communication software on them, and this began to help with communication. As a bonus, the iPods became a source of great comfort, allowing Will something to focus on as he flipped easily through games, videos, and music on the touch screen. We were able to go out to eat as a family for the first time in nearly two years. We could go to stores and parks. We were, in a way, set free. Today, Will is rarely seen without an iPod, and there’s always a backup (or two) nearby.

In addition, we found an assertive ENT who was willing to place ear tubes after only three separate ear infections, counting the “double” as one. And then Will had surgery. That’s another blog post altogether, though, in short, he did better than I could ever have anticipated. The tubes worked, and since last June, we’ve been ear-infection-free.

For most children, I suppose the ear surgery would have alleviated the sleep issues as well as the head-banging. But Will has autism. And children like Will are creatures of such habit and ritual and routine. Once the night-waking and head-banging became habits, that was it. And so, despite being on high doses of melatonin, Will continued to wake up at midnight or one or, on a good night, two in the morning, and he would be up for the day. The only way to keep him from screaming and banging his head was to let him stay up, and so Marty and I took turns dozing on the couch, manning the remote control, for the next five months until finally, we trudged, exhausted and bleary-eyed, to the pediatrician, and begged for drugs. For Will, that is.

But Will is not our only child. By September, Julia, 2, was still showing a significant speech delay after a year of therapy. Her therapists agreed with us that pre-school would be a wonderful way to give her age-appropriate role models in a language-rich environment. Already cash-strapped due to Will’s constant medical expenses, instead of putting Julia in early pre-school so I could go to work, I literally went to work so we could put Julia in pre-school. I was running constantly on two and four hours’ sleep and four and six cups of coffee. My days were a blur, and until Will (and Marty and I) started sleeping again in mid-November, I truly didn’t realize how tired I’d been.

Even with Will sleeping well for a couple of weeks and Julia showing great improvement, a year of sleep deprivation and tremendous stress had taken a massive toll on me. In December, I collapsed at work and was taken by ambulance to the same ER where Will had spent that awful night. I even found myself, ironically, in the same CAT Scan machine, lying still and telling myself that at least it wasn’t Will on the table. I watched my husband watching me, and I knew I had to get better.

I quit my job and we gratefully accepted help from our families. I made getting my health back in order a top priority. I listened to my doctors’ diagnoses and instructions. I followed their orders. I rested. I went back to the gym. I took care of myself. And somewhere in there, I woke up. I started to write again. Little snippets and ideas, stories and remembrances flowed from fingertip to keyboard. But nothing was cohesive. Nothing came together. Until today.

Today, I realized that it’s ok for a blog post to be just that: a post. Not every single article I put out to the world has to be deep and profound. Sometimes, it’s just good to keep letting people know what the world looks like from the cheap seats.

So, here it is:
I’m 35. I have a husband and two kids at home and a stepson in college.

My daughter Julia will be three next month, and she has a speech delay and some texture issues. She’s delayed, yes, but not disabled. She’s adorable and sweet and curious and nurturing and kind. She takes care of her brother. She looks exactly like me, loves books and animals, and must have just the right accessories for every outfit. She’s as stubborn and funny and impulsive as I am. She’s the payback my mom warned me about. She’s everything I could ask for in a daughter and then some.

Will is five now. He has severe autism. He’s not potty trained. He needs to be spoon-fed. He eats about a half-dozen foods. Period. He eats jar baby food. He doesn’t speak or write or read or answer yes-or-no questions. He’s cute and happy and loving. He’s curious and silly and smart. He’s resourceful and tenacious and really, really funny. He’s the greatest challenge of my life. And he’s one of the two greatest things that have ever happened to me.