Monday, July 25, 2011

Have your cake, and eat it too

One of the best things about being a special needs parent (yes, you read that correctly) is that you don't take the little things for granted. Small advances, so minutely incremental in the development of typical children they go practically unnoticed, is the stuff of miracles for a parent that has been praying for progress.

This past Sunday was full of such miniature miracles, and a lot of zucchini. Actually it was the zucchini that started the marvelous episode -- I had a plethora of the veggie lying about, so I decided to bake it into a chocolate cake (something everyone will eat!). As I leaned over the oven to check the done-ness of the cake, Simon wandered into the kitchen and the miracles started rolling.

Miracle #1 (which actually started a couple months ago), Simon ASKED A QUESTION;

"What are you DOING Mommy?" He asked.

"Baking a cake," I replied.

Miracle #2: Simon expressed interest in the task, and MIMICKED what I was doing. He took some oven mitts and put them on his hands, and he peered into the oven expectantly.

"Look, Mommy! Wow, cake! You want to make a cake!" (sometimes he gets his pronouns mixed up)

Miracle #3: Simon PRETENDED. Since the cake was already in the oven, I pulled out some play food and pots and Simon "made" a cake. "Look, Mommy! I make it!"

Miracle #4: Simon told me he wanted to add sprinkles to the cake, but he SPECIFIED that he wanted to do this on "Mommy's cake." I quickly iced the real cake and pulled out some rainbow sprinkles. I put Simon on a chair and handed him the sprinkles and he HELPED decorate the cake. Afterward, he was PROUD of himself. "I did it! I make it!"

Miracle #5: We cut the cake, and Simon ate the whole slice WITH HIS FORK. Slowly and carefully, he speared each bite and even closed his eyes as he chewed.

Miracle #6: To wash down the cake, I'd given Simon some milk. Instead of grabbing the cup one-handed as usual, he actually grasped it with BOTH HANDS and raised it to his lips, taking a long sip (an appropriate reward for a job well done). Then he set it down, carefully and evenly with both hands.

Best cake ever, don't you think?

Monday, July 18, 2011


Sometimes my life is so exciting. I'll recount a little just to make you jealous.

This weekend, for example; I went to a yoga class. I shopped at two grocery stores and Targét (that's right, with an accent, I am THAT exciting). I hosted a play date and tried out a new frozen yogurt joint. Very swanky. I did all the laundry -- and folded it. I did some work and watched Harry Potter and the Deathly Hallows part one on on-demand. In bed.

But the true highlight of my weekend was sorting through the toys in the playroom. I was possessed with a passion for organization -- a deep need to clear the clutter, and so I conquered my own personal Everest.

It only took all friggin' day.

I don't usually let it get this bad. I'd like to say that I'd let things get out of hand just because I've been busy -- which is true, but not wholly. The whole truth is that I've been avoiding this particular clear out because of what it means.

It was time to let go of the "Pretty, Pretty Princess" game. The little bouncy ride-on caterpillar. A lot of the baby books. Many of the stuffed animals.

It means that my babies are growing up.

It also means that maybe I need to slow down a little. I work so hard to help the children grow, and worry so much about how they are doing that maybe I am missing the things I will miss.

I think, next weekend, I'll put the work and chores off a bit and spend a little more time playing with the toys in the playroom. Now, that would be exciting.

Wednesday, July 13, 2011

Get Away

There's nothing quite like packing for a beach trip with the kids to make me long for simpler days. Days when going to the beach meant throwing a bikini, a toothbrush, and a sundress into a cute little bag and dashing off to lie on the sand, work on my tan, and listen to the waves; occasionally breaking routine by reading a novel or going out dancing.


However, despite having to literally pack everything including the potty seat; I was looking forward to our trip to the beach last week. A change of scenery, time with family, and a chance to break a bit with reality -- namely work, chores, and therapy appointments five times a week. I even imagined that I would be able to mentally relax, simply enjoy the kids, and take a time off from worrying so much about Simon's present and future.

And, it was nice to get away. I needed that whiff of sea air, and I think the kids did, too. It was great to see our big, boisterous family, and I did manage to get a tan. But, my fears followed me to the shore. In truth, I was forced to face some things I'd been dreading wholeheartedly.

One thing I was prepared for. One my nephews is only a few months older than Simon, and watching Olivia play with him in a way so different from the way she interacts with Simon hurt my heart a little, dredging up unwanted "what would life be like if the stroke had never happened...?" thoughts. But, I had known this was coming -- and I was more prepared this time than I have been in the past. I let the thoughts come, and go. I checked myself when making comparisons, reminded myself to be positive. It was a little tough when the five year old cousin started asking questions about Simon's age and ability (and was in complete disbelief when I revealed that he and Simon were both 5); but, no harm meant or done. Simon is doing well, I remembered, he's okay.

Until he wasn't okay. Monday night, after a day full of parades, swimming, parties, and fireworks; Simon fell asleep in his car seat while we were stuck in traffic on the way back to the beach house. Sitting in the front passenger seat I found myself dozing off as well, until I was woken with a jolt by a horribly familiar rhythmic gurgling noise. The last time I'd heard that noise was November -- it was that strange sound that had alerted me to Simon's first seizure, the one that had lasted 2 hours and ended up with him unconscious in the PICU for days. I whipped around in my seat to see my fear confirmed -- Simon was having another seizure.

Though I was completely terrified on the inside, and I know Brian was too, we were -- to our credit (I think); completely calm outwardly. Brian pulled over and started to watch the clock (we've been told to administer Diastat if the seizure lasts more than five minutes), while I climbed into the back seat to unstrap Simon and lean him over so he wouldn't aspirate if he vomited (which he did). I looked into Simon's wide-open, vacant eyes and spoke softly to him, and to Olivia (who was freaking out). I told them what I didn't really believe -- that everything was alright. Then, just as we were getting ready to give Simon the medication and head to the hospital, he stopped. His blank eyes suddenly met mine, and he recognized me. He took a drink of water, and went right back to sleep. We took a collective deep breath. Brian merged back into traffic, and I sat in the backseat all the way home; holding Simon in one arm, and Olivia in the other. No one spoke.

I dialed the Neurologist on call when we got back. She told me not to worry. Kids with epilepsy are going to have seizures and not all of them are a big deal. They increased Simon's medicine a little since he has grown a bit, and they told me to call them if anything else happened. We have an appointment later this month.

So, all is well that ends well. We enjoyed the rest of the trip; swimming, biking, shopping, and playing in the sand. The kids had a blast with their cousins. I did get a great tan.

But, I didn't get away from my fear, I was forced to face it. I didn't get away from worrying about Simon -- especially with the increase in Keppra, which makes his mood swings volatile, something both hard to watch and to mitigate. Instead being relaxed, I was edgy. I had moments where I simply had a hard time keeping it together.

It has been a week since that episode, and I'm coping better. Coming home felt good, safe. I've tried to remind myself to be positive, and strong, and recognize the fact that the medication and the seizures are just a part of our life, they are our normal and I have to accept that. But I also recognize that there is a part of me that doesn't WANT to accept it. I don't want this for Simon. There is still a part of me that longs for a simpler time, and I may always wonder what life would be like without the stroke.