Saturday, January 8, 2011

Day 12: Memento Mori

We are officially post holidays, and the normal extra-curricular schedule of activities has resumed. Which is good, because today it meant I got to have coffee and a chat with a dear friend while our girls were in dance class together. M and I have known each other since we were stylish young career gals -- before husbands, houses and children. Ten years later, we're still stylish, just a bit more seasoned.

As long as I have known her, one the many wonderful things about M, is that she is an amazing listener. We haven't seen each other in a few weeks and (though I am sure she has tons going on in her own busy, full life) she let me yammer on about Simon's progress. Of course, this blog came up as a part of our conversation, and I got to talking about why I started writing it in the first place.

Aside from the reasons I've already mentioned: to provide some information for other families like ours, and to use it to reflect on our experience as a family -- I've had another reason in the back of my mind. Since the rather dramatic events of early November (pre-blog), when we came so close to losing Simon, something in who we each are as individuals, and how we work together as a family, has changed. A shift, of sorts, and I feel like I have been looking to define it. To understand it.

I was trying to explain this to M, and she tried to get me to explain what the heck I meant (with good reason, what the heck do I mean?). I stated that I thought coming so close to losing my child left me altered (maybe shaken is a better term), and I don't think I've gotten over it. I said I imagined any such event (illness, financial loss, accident, death) would have a long-term, lingering impact on a family. I said a few other things that were probably equally vague, and then (finally), it sort of clicked for me. What changed is as simple as our perspective.

For years, we been pushing and pulling, predicting and prognosticating over what the future will be for Simon, what we should do, what may happen... and the fact that there was so much unknown and unknowable was infuriating at worst and frustrating at best.

If I don't know what is going to happen, how can I plan for it?

Truthfully, I know that no one can predict the path of a child, much less the path of one with brain damage. With any child, wanting to know what high school or even college to prepare for is a shot in the dark -- an optimistic and hopefully well-aimed one, but still unknown. With a child like Simon, there is no way to know what progress will be made in a month, much less a year. Will he be ready for inclusion kindergarten or still need special ed? In a few years, can he go to a regular school with his sister? Maybe not, maybe so.. wait and see.

I hate wait and see. I am not a wait and see person. I have sub categories on my to-do lists, and sometimes put things on them that I have already done, just so that I can check them off! I like to know what is next.

Until November. I can tell you the exact moment it changed. November 3rd at about 2 am was the first time I picked up a pen to write down my thoughts in many, many years. It was our second night in the Pediatric Intensive Care Unit with Simon. He had been unconscious for over 24 hours and we did not know if he would wake, or, if he did wake, if he would still be.. well, himself. Brian had gone home that evening to be with Olivia (who was also upset), and I decided to stay by Simon's side in spite of the fact that there was no sleeping allowed in the PICU and I hadn't shut my eyes in two days.

I had a notebook in my bag that I used to write down meeting notes on the fly. I'd been sitting staring into space for hours at that point, so I pulled it out and thought that maybe writing down what was in my head would make it more bearable (and keep me awake). Give me a purpose if only for a moment. This is what I wrote:

Here, alone, in the PICU, the best thing I can do is not think. Keep my mind empty, blank. Be ready to absorb any new information as it comes, but not ponder the larger sum of the experience. Just take away the lowest common denominator, and in the interim, remain neutral. 


I can't think or even describe what led us here without feeling my face flush, my bones chill and shake, and my eyes fill fast with overflowing tears. Nor can I speculate about what is next. What will the future hold, how will it be altered for my little family, without losing touch with solid ground. Even turf becomes lost in the dark. Like quicksand, the more I try to think it through, figure it out, the more it pulls me down.


I can't process my surroundings, or absorb the suffering of the parents and children around me. Frozen with fear, or resplendent in robes of denial, we all sit here together in a sort of stasis. We are all blank, really, because there is no way to grasp the whole of it. We are not looking forward, we are simply being now.

Being NOW. I really did learn that. Finally. I learned not to keep looking ahead, but take what I have when I have it and try to simply be there. For years, Brian and I looked at the future for our son with a mixture of fear, denial, and what we liked to think was optimism. Now, we don't talk about it so much. We do what needs doing (of course), we forge ahead, and put what plans in place we can. But now, when the concept of Simon as an adult comes up, we don't start to bicker over whether or not he'll be able to be independent, we don't tense up with fear and worry. We shrug. We actually smile. Brian teases me about buying a hideously huge RV and roaming the country with Simon as a navigator, and I feign horror at the thought of becoming a "snow bird."

And then, we say to each other that what will be, will be. For now, what do we want to do today?

Friday, January 7, 2011

Day 11: Vibrators

Hey, I never promised this would be a PG blog. 

Today, Brian took Simon to KKI and I joined him there later to meet with the therapists and discuss progress. It turned out that we didn't have time today to talk about everything in full, but we've scheduled a meeting for Monday to review goals, progress and plans for the week ahead. Needless to say, I am really looking forward to that.

On a related topic, this morning Brian was asked to be part of a survey about how KKI could better serve the parents of the patients. Our request (and really our only issue): provide some way for parents to observe the therapy sessions without getting in the way. The kid's swimming class manages to have a 2 way mirror, and I am a lot more interested in this program than I am in the doggy paddle (no offense meant to swimming instructors anywhere). Hopefully, the fact that they asked the question shows that they are planning to make improvements to the facility in that area, and in future it will no longer be an issue.

Brian said that Simon was actually happy to go into "school" this morning, quite a switch! However, when I got there, you could hear him crying from down the hallway. They were working on another new theraputic method to strengthen and stimulate the muscles of his left arm -- electrocution.

That's right. They were electrocuting my son. And I actually thought it was a brilliant idea.

Now, before we go all "One Flew Over the Cuckoo's Nest," let me explain that this is pretty benign stuff. The therapy involves taping small electrodes over the muscle you wish to stimulate, then applying a very low electronic current which causes the muscle to contract. The goal is to build strength and send a message to the brain to help it "wake up."

It is referred to as EMS, and it is one heck of an alarm clock.

I know from experience that this doesn't hurt. (How, you ask?) On our cold, bleak, and rainy 5-day Caribbean cruise last winter, Brian and I made full use of the ship's spa since there was no sun to be had. There, I tried a treatment that was purported to eradicate cellulite using seaweed wraps and electronic pulses. This was, of course, a complete waste of money, but in my defense I'd had several pina coladas at that point, and hey -- now I can say that I know how my son's therapy feels. I no longer feel like a complete idiot for letting an aesthetician slather my tush with green goo and then electrocute my butt.

Still an idiot, just not a complete idiot.

EMS is something that we have actually tried before in a much milder/less direct way. Simon's wonderful OT from the "Infants and Toddlers" program (a state program providing therapy services in home for little ones in need) had several vibrating therapy tools she would use to work on his paralyzed side. The intense, rhythmic stimulation was key to getting the brain to make the connection to the unused muscles.

Now, I would tell you to keep your mind out of the gutter here, but that is exactly where mine ended up.

About this same time, a newlywed friend of mine hosted a "Slumber Party" -- sort of like a tupperware party but they weren't, um, selling plastic dishware. They did have an interesting assortment of other items, however, and one of these seemed to suit our need particularly well...

I had often thought that using vibration on Simon's arm and hand was effective. I noticed that he seemed more aware of the limb after I used a toy, or even an electric toothbrush over the area for a few minutes. I hypothesized that if a little vibration was good, maybe a more sustained use of constant stimuli would have an even greater benefit. The trouble was finding a way to do that.

Well, a one-year-old's wrist is about the same diameter as... something else. And they make little, um, bracelets, with vibrators and batteries built in -- completely encased in a soft, safe plastic. In rainbow colors! And waterproof! Perfect for a teething, hemiplegic baby!

You should have seen the hostess' surprise when I ordered a dozen (for safety reasons you couldn't replace the batteries), and told her they were for my kid.

Anyway, past success with EMS has made me optimistic about this new course of therapy. The PT said that sustained use of this type of machine can have serious long-term benefits. If it really works for us, I may even be able to get insurance to help pay for us to have one at home (heaven knows we've more than met our deductible this year!) for continued therapy.

In that case, maybe I should give the cellulite reduction "therapy" another go...

Thursday, January 6, 2011

Day 10: Epiphany



Today is the feast of the Epiphany, or "Little Christmas" as my Dad calls it. It is when the three wise men, or magi, visited the infant Jesus with their kingly gifts. (It is also when my Mom says I can finally take down my Christmas decorations). Part of me thinks it can't be a coincidence that today I received three beautiful gifts from some very wise people.

At breakfast, I was leafing through the CB2 catalog (I love catalogs with my coffee), and a particularly colorful spread caught my attention. The furnishings were playful, and exuded happiness. When I read the description, I found out that they were the work of a special collaboration between the corporate Crate & Barrel and Creativity Explored, a nonprofit arts center for people with developmental disabilities. (www.creativityexplored.org). I loved the art, but the fact that there was even this little bit of prime-time focus on individuals with developmental disabilities made me feel a little hopeful.

Later, I got a package from a nonprofit I do some pro-bono design work for; L'Arche of Greater Washington D.C. (www.larchewashingtondc.org). I first came into contact with L'Arche about a year after Simon was born. They found out about my work via word of mouth (I love it when that happens!), and they were interested in having me design an invitation, so I went to meet them. I was completely impressed, awed even. L'Arche is a community of homes in the D.C. area for adults with intellectual disabilities. The homes aren't facilities -- they are true, loving homes where the "core" people live with the L'Arche staff as a family. At the time, I had no idea that Simon was affected cognitively, but I had been through enough to know how grateful I was that a beautiful place like this existed to care for one of our societies' most marginalized and yet most innocent populations.

Anyway, I have just completed their annual report and, true to the grace of their organization, they sent me a lovely card and mosaic light made by some of their "core people" as a thank you. The card has a star on it, and I can't help but think that this paper star represents something that I can truly follow to find a way to peace.

Simon, my sweet baby, gave me the third gift of the day. Using his left hand and some bingo daubers (and probably a bit of help) he made a beautiful picture, which feels like a miracle in and of itself, simply by way of its creation. He was very proud of his work too, waving it about with a joyful "Look! I made it!"


A declaration of pride. A declaration of accomplishment. A declaration of self. I made this, therefore I am. I made this, therefore I have something to contribute, a gift to give to those I love. Isn't that what the Magi were said to have done?

How clearly I understand the need to create to be whole. Creating allows me to work, to be relevant, to exert some control over the chaos, and to express myself and my love through my creations. Making things has been a form of work and recreation my life long. After my daughter was born, and I was deep in the mire of postpartum depression, it gave me a way to pull myself out -- whether I made a pot of soup or crocheted a scarf for a friend; it was tactile, real and proved that I could do something of worth. I still cook when I'm under stress, the immediate gratification and the fact that I can make something good are soothing. Today, when a loved one has a baby, I crochet a blanket (fortunately for them, my crocheting has improved over the years). It is the most valuable gift I can give. Through the time it takes and the work of my hands it is my way of showing love.

Throughout history, philosophers have discussed the idea of the artist being divinely inspired, but I think inspiration is more basic. I think that creation comes from the humanity within us. By making things, we concretely show that we are part of the grand, varied and endless tapestry of being. We make, we do, we think, we love, we are. I can't imagine anyone else for whom this act might be more meaningful than the developmentally disabled, that most marginalized yet innocent group of wise and magical people.

Wednesday, January 5, 2011

Day 9: Training Wheels on a Tricycle






Daddy took Simon to KKI today, and according to both of his Therapists he did 1000 times better. No tears, an overall happy mood, cooperation and lots of good focused work. I noticed the difference immediately when he came home for lunch. He was relaxed and pleasant, and was even using his hand without hesitation to grab at some grapes (um, wow!).

This morning, he rode the therapy trike all the way down the hall, something he refused to attempt yesterday!

I'm trying to simply be happy about this positive progress, without taking it personally that I am a problem. Apparently, right now I'm a major distraction. This issue has cropped up in a minor way in the past, and Simon does cry a little every time I part with him for preschool. However, since no other therapy program we have participated in has been so intense (in activity or duration), I guess that Simon's desire for an "out" hasn't been quite as strong, either.

Ultimately, this means that it is better for Daddy to take Simon to therapy the majority of the time. Though it never sat well with me, this was the loose plan from the beginning. When we were initially talking about our participation in the program, I was worried that I wouldn't have enough time to work if I was at KKI all morning, all week, all month. I'd only get about 3 "business" hours in a day (the kids get home at 4 in the afternoon from regular school), a potential problem.

As a designer, I'm fortunate enough to sustain being self-employed (aside from my teaching appointment), and therefore I have a lot of flexibility. It is because of my children that I set my business up this way (though I do occasionally entertain fantasies of growing the business, moving it out of the house, hiring staff... sigh. I digress...). Anyway, for the past four and a half years, I've been able to wrap my work life around Simon's therapy schedule and other appointments (sometimes as many as 6 or 7 a week). Most of my real creative work happens in the "off" hours, anyway, at night and on weekends, so any business hours I am able to devote to client contact -- meetings, etc. Despite my acrobatic flexibility, I knew that being gone so much would be difficult. I can't tell my clients to hold onto projects for a month, and I do like to give at least the vague impression of professionalism...  having office hours is key to that facade.

Fortunately, Brian has a wonderful, family-friendly employer (shout out to Loyola University Maryand) who was willing to let him be flexible with his hours for the duration of this program. Believe me, we both know and appreciate what a gift this is, especially having had "agency" backgrounds (the exact opposite of family-friendly) in our past.

So, I'm very grateful for this help, and in general for the awesome, amazing co-parenting my spouse is happy to participate in. Deep down, however, I have to admit that I am also disappointed at the thought of not being there the entire time. Like I said, I've done this for four and a half years and stepping back does not come easy for me. What I really want is to be in the classroom, observing, learning, and being as active a particpant as possible in Simon's growth and progress.

But I have to accept that me being there (heck -- me being in the building), isn't helping either of us. In this situation, "Mommy" is a crutch and a distraction. I need to limit myself to the designated meeting times throughout the week (fortunately, that is a big part of the program), and the "homework," as the best ways to help and be involved. 

Letting go. Is there anything more confusing in parenthood than knowing the difference between when to push yourself in and when to pull yourself back?

Employing this concept with my "big girl," who has excellent communication skills and is all around an over-achieving, social kid, has been tough enough. Two years ago, despite the fact that I had every confidence in her ability to navigate any challenge ahead, the separation anxiety I felt when she went to elementary school was staggering.

With Simon, knowing when to let go is even more confusing. The decision is filled with trepidation, and the act almost physically painful (for both of us). He is so very vulnerable and we have been through so very much, that every cell in my being aches to protect him.

I know that holding on so tightly is not the way to help him grow, learn, and become the best he can be, whatever form that will take. But where is the distinction between holding up and holding on? Being an advocate and being a hindrance? And how on earth will I find it?

Tuesday, January 4, 2011

Day 8: Wits and Wills

The official score is -- Simon: 2, Therapists: 1, Mommy: 0

As I mentioned earlier, Simon is starting to get a bit more frustrated. He's also starting to get a bit tired of the constant therapy -- something we all could see coming since he far prefers independent and self-directed play. Our infernal meddling is really starting to irk him.

Yesterday, Daddy took Simon to KKI for what we are starting to refer to as "Morning School." There were some tears at separation, but they were reasonably short lived. The general grouchiness persisted. The OT would pull out toy after toy, trying to spark some interest in our taciturn little guy, but he flatly refused to play.

OT: Simon, how about Potato Head!!

Simon: No, no, no. Shakes the head vehemently. NO.

OT: dumping the pieces out onto the table -- "But look at all this great stuff! Let's play!"

Simon: NO, NO, NO!!!!!!!!!!!!!!!

OT: "You don't want to play? Ok. Let's put it away. Can you help put it away?"

At this point, Simon thinks he has scored a victory. What he fails to realize, is that the entire time he is satisfyingly removing the offending toy, the therapist is getting him to stretch, pull, grasp and release the objects using his left hand and arm. In other words, he is working on therapy.

Simon: 0, Therapists: 1

Today, I took Simon. There were a LOT of tears at separation. But I kissed him good bye and closed the door. I then proceeded to wander the halls of KKI, passing by his door every few minutes to (let's be honest) torture myself by listening to his building melt-down. About 20 minutes in, I couldn't take it anymore and knocked. The therapist cracked the door (I think she knew it was me) so Simon couldn't catch a glimpse, and said she wanted to give it another ten minutes. I told her where I'd be waiting.

Sure enough, a few minutes later, a red-faced, tear-streaked little guy came out of the room to go and "find Mommy." The deal was he had to carry a bean bag turtle in his left hand the entire way. Finding the terms acceptable, he came to get me and tearfully fell into my arms. I'm pretty sure those final sobs were simply to punctuate how awful I was for leaving him in the first place.

Together (with the turtle), we made our way back to our classroom. With me hanging out in the background providing encouragement and an occasional cuddle-break, we managed to get through another hour or so of "work."

Simon: 1, Therapists: 1, Mommy: 0

However, when the PT switched with the OT, Simon took the opportunity to up the ante, and raised his price. I was still in the room with him (and, honestly, I really enjoy watching and participating -- I learn so much that way, though I know I am a distraction), but he was melting down again and wasn't interested in further cooperation.

It went down like this:

Therapist: Simon, let's play with this Elmo microwave!

Simon: Moooooommmmmmyyyyyy........

Mommy: Come on, Simon! You can play with Elmo! How fun, let's see what we can do!

Simon: Mooommmyyy.. want to go? Go bye-bye in the car?

Mommy: After we finish here. Simon is a big boy, let's play!

Therapist: Look Simon, Mommy is here! Let's make her something to eat with this fun Elmo microwave! You can push the buttons! What food should we make?

Simon: (Ignores Therapist, looks at Mommy) Go get some food? Go bye-bye in the car? Get a BAGEL? Want some Turkey Bagel? Go? Get a BAGEL! In the CAR?!

Mommy: (Sigh.) Okay, Simon. You play like a big boy and after we are ALL DONE I will take you to get a Bagel.

Simon: Turkey Bagel?

Mommy: Yes. Turkey Bagel.

Simon. Okay!

We got through the rest of the day this way. He'd complete a task, remind me of our bargain, and then we'd get through the next task.

Repeat, bribe, repeat, bribe, repeat.

Finally, we were done for the day and, true to my word, I took the little guy out for lunch to his favorite place to get a bagel with turkey. He was thrilled, and I don't think I was imagining that he was just the tiniest bit smug about it.