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?

Sorted

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.

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.

Sigh.

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.

Stick a Fork In It

One of the most perplexing things (okay, one of many "most" perplexing things), about raising a not-very-verbal kid with physical challenges is being able to tell the difference between when he CAN'T do something and when he WON'T do something.

Take, as a prime example, our relationship with cutlery. As a parent, I know it is my duty to instill at least a baseline of table manners into my children, so that one day they may be welcome to the table of people with potential import in their lives. Not to mention the fact that it would be nice to have a meal with the kids that doesn't require a bath afterward.

However, after many failed attempts at introducing forks and spoons, Brian and I had sort of given up on it. Besides, there are few things that can't be converted into acceptable finger foods, and Simon is so small that he generally doesn't raise any eyebrows when we dine out and he eats with his hand.

Sadly, we are aware that the clock on this grace period is ticking, and so, this past Saturday, Brian put on a brave face and decided that it was time to re-introduce the FORK. I have to admit, I wasn't completely on board. It was Saturday morning and I had yet to finish my coffee, "Is this really necessary?" I whined. I reminded Brian that, once you start this sort of crusade, you really can't abandon it. It becomes a matter of sheer will, a battle that as a parent, you MUST win (no matter how many years later), because to lose this would mean a lifetime of meals resembling that scene from "The Miracle Worker"...

We know that from a fine motor standpoint use of any tools like this is challenging for Simon. He has trouble manipulating crayons, using scissors, threading beads, connecting legos, etc. We've worked on these skills in OT, and continue to do so, but we haven't really pushed the utensils. It just seemed like making his ability to feed himself more difficult was kinda mean. The kid already has a lot to cope with, why add to it?

But, I had to agree with Brian, the time had come. We owed it to Simon to try to civilize him.

Steadfastly, Brian poured me some more coffee and presented Simon with his favorite breakfast in the whole wide world.. the BIG breakfast from McDonalds, which, believe it or not, my 34lb son can totally pack away, shoveling it in one-handed with gusto.

Exicted, Simon ran to the table, only to fall off his chair in a total and complete tantrum when we presented THE FORK and insisted he use it. We'd pre-loaded it with his favorite part (sausage), but even that wasn't enough and he actually tried to remove the sausage from the fork rather than raise the offending implement to his mouth.

About a dozen tantrums later, we reached a compromise of sorts. I'd placed three forks on his placemat -- each one loaded with a different food. Eggs, pancakes, sausage. "Simon," I chirped in my "Mommy is happy and calm no matter how much you freak out" voice, "look, you can CHOOSE which fork you want. What do you want to eat? Simon can CHOOSE HIMSELF."

Simon was tired, and hungry. This tiny semblance of control was just the olive branch he was looking for to be able to pick up the fork with dignity. He chose sausage. I reloaded. He chose eggs. I reloaded. Pancakes... you get the picture. We did this for a while, and as he settled into the rhythm of it he did something that shocked us.

He took his empty fork and speared his own sausage, thank you very much.

We're still working on it, and it is pretty frustrating for Simon. (FYI, cheese curls are exceptionally motivating and easy to spear). But it is one more step towards ability, and I find that exceptionally motivating for me.

Father's Day

I can tell you the exact moment I fell in love with my husband. We'd been dating for a little while, we'd been friends for over a year, and I knew that I was starting to feel something more than simple attraction -- but, we'd really only known each other in one context. I knew, even then, that it isn't possible to clearly see the complete picture of a person within the twenty-something/work/happy hour/hang out environment. Besides, back then, the bars were still pretty smoky and nobody could really see anything.

That winter, we took a trip to visit his family who lived a few hours away. Having left after work, we arrived very late at night. His parents had stayed up to greet us (and meet me), but his sisters had gone to bed already. Like me, Brian is the eldest child in his family. He has a younger brother (who was in Germany at that time) and two younger sisters. I have a younger sister and brother. Like me, there is about a decade's difference between him and his youngest siblings; and we'd both spent a lot of time babysitting in our adolescent years, taking care of our little brothers and sisters while our parents worked.

After making introductions and briefly chatting with his folks, we went upstairs to go to bed ourselves. But, before we could even put down our bags Brian crept silently into his sister's bedrooms. Without turning on the light, without waking them up, he leaned over and kissed them each softly on the forehead. He watched them sleep for a brief second, and then exited the room with a look I'd never seen on his face before. His features had softened, and his shy smile completed the portrait of the man I'd been seeing, but was just now seeing for the first time.

I knew that, had his sisters been awake, they would have rebuffed this tenderness, as would my brother at the time. No teenager wants to be kissed on the forehead by a big sister or brother. But, I also knew that it was just the sort of thing I would have done. Brian was already a caretaker, just like me. He understood the selfless kind of love, the kind of love that carries you through anything and over any obstacles.

And suddenly, I knew. I knew that I'd found a man that I could marry. I knew that we would understand each other because we understood the meaning and value of family, of selfless love, of truly taking care of one another. I knew I was in love.

And, a few months later when he asked me to marry him, I knew that I was right.

I still am.