Good Things to Come

I am SO excited! Over the past couple of weeks, Simon and I have found out about so many cool things, heard great news, and have gotten the ball rolling for lots of awesome stuff just over the horizon.


On the cool things front, this potential development in treating status seizures has me really excited.

Super speedy life saving meds!

It is an epi-pen like device that a caregiver could use to deliver effective medication as soon as a seizure goes past the 5-minute "normal(ish)" window. As you may know, the sooner you can treat a "status" seizure, the better chance you have to stop it before it becomes life-threatening. Right now, the options for this sort of immediate treatment aren't great (rectal diastat is what we've been given) and aren't totally effective in practice. A different medicine in a more convenient and effective delivery method are a really awesome advance that I can't wait to get my hands on!

Footwear with awesome hardware!

Another cool thing is the new AFO (ankle foot orthodic) that we have ordered for Simon. Simon has had an AFO for a couple of  years now, and we replace them as he outgrows them. This time, instead of being directed to our usual (slightly sketchy) orthodic equipment shop, we were able to get our casting/fitting done at Kennedy Krieger. The difference in treatment and options was like night and day, and I am (again) feeling so blessed that we have access to such great resources for Simon. Our new AFO will be hinged (articulated) and should allow him a greater range of movement. Of course, this also means he may run faster and be harder to catch... hmmmm....

Torture.. I mean, therapy!

In more cool bionic Simon news, we have been "restarting" the CIMT (constraint induced movement therapy) program with our therapist at KKI in a reduced capacity. Since completing the program last winter, Simon had been using lefty as an assist pretty frequently, and he had maintained the gains for what we were told was a record amount of time. However, over the past few months, we've noticed the tone in his hand re-tightening and he has been using it less and less. So, with the support of our amazing KKI therapist, we've made a new cast for his "good" arm and (instead of wearing it for a month solid) we are having him wear it for therapy sessions and therapy "homework" sessions a few times a week. The really amazing thing is how quickly he is regaining the ground he lost. The last time we participated in this therapy it took weeks to manage a pincer grasp, this time he was pinching and dropping marbles and goldfish crackers within hours!

Super dogs in training!

In the area of great news -- guess what!?! TIGGER IS PAID FOR! Yes, I thought it was a mistake at first, too. But no, through the incredible amazing awesome mind blowing humbling I-cry-every-time-I-think-about-it contributions of our friends and family (and their friends and family), and some folks I don't even know but who have heard about us and our Simon, the CEO of Noelle's Dogs Four Hope was able to call me last week and tell me that (barring a grant we are in line for from the Chelsea Hutchison Foundation), Tigger's account is settled.

AND THAT'S NOT ALL! The art students of a local middle school voted to donate the proceeds from their upcoming auction of student work at the school's “Art Night” towards Tigger. We are going to use those proceeds to help pay for Tigger's final training trip to Colorado (where he will complete training and take the official test to become a certified service dog!).

I am (in a rare moment) struck speechless by the incredible way our community has embraced us and our little guy. As I said in an earlier post, the most surprising and amazing thing to come out of this journey has been to find out how blessed we really are, and how much love surrounds us. THAT is what I know is going to keep me going when times get tough. One day, when Simon can understand, I cannot wait to tell  him the story of how Tigger came to us by way of love for him. (damn, now I am crying again.)

Love Triangle

And, finally -- awesome stuff on the horizon! Simon qualified for Music Therapy at school. I found out about the therapy almost by accident, I just happened to be in the classroom when the therapist (who is only at our school a day or two a week) came in to work with another student. I was intrigued -- Simon LOVES music and has a great memory for rhythm and rhyme, so I the idea of using those strengths to work on other therapeutic and academic areas of need seemed just plain brilliant. I did have to push a little to have him evaluated, but once he was it was immediately apparent that it is a great fit for him. Being able to incorporate it into his IEP feels like a mini victory and I could not be more thrilled to see what benefit this brings him.

Another exciting thing to come is an inclusion summer camp! I've been struggling with what to do for the kids this summer -- our fantastic babysitter is headed to Thailand (!), and Simon may be participating in a 4 week "booster" program at KKI with the dates still undecided. I've been thinking about looking for a new sitter to help in the interim (I probably should do that no matter what), but I also really wanted both kids to have a chance to get out of the house, have fun and interact with other kids for at least part of the summer. Camp seems a natural choice ... finding a camp is the problem. For Olivia it is a snap -- if anything there are too many options (art? math? music? adventure?), but finding a camp to fit Simon is a bit more complicated. Last year, I attended camp expo (where we found League of Dreams which I am SO looking forward to this year!) without much luck. Since then, I've continued to search, but so far the options I have found for kids with special needs like ours are few and far between (sometimes literally far). Just make things MORE complicated, I really didn't want something exclusively special needs -- Simon has done so well integrating with his typical kindergarten peers that I was hoping for a mix of kids where everyone was, well, included, but still cared for as needed.

I was starting to think that this didn't exist UNTIL I was in (another) IEP meeting last week discussing ESY (extended school year) options with Simon's team. While expressing my concerns about typical ESY (which are another post unto themselves) a couple members of his team had an "aha!" moment and suggested a grant-based inclusion camp through our school system. Our new music therapist is one of the primary instructors and (I've already decided I love her) she was nice enough to tell me about the camp and get BOTH Simon and Olivia onto the list. I am over-the-moon excited. This is a true inclusion camp with lots of fun activities, camp themes, and cool stuff to do. In addition, many of the "typical" kids are sibs who not only get to have fun alongside their "special needs" siblings (not a situation you always encounter), but they get to meet kids from other families like their own. Seriously, how cool is that?!

SO, stay tuned Simon fans! With so much progress, so much support, and so much to look forward to it is going to be a very exciting Spring!

Love is

It is Valentine's Day, and (like everybody else), I have love on the brain. The thing is, in more recent years, with handmade paper Valentine's becoming more important to me and days of wine and roses fewer and farther between (though, if you are reading this, Brian, I still like wine and roses, and chocolate, and jewelry...), I think about love more in the context of my entire family, less as a solitary couple. 

When I think about love, I am also reminded of this biblical verse (1 Corinthians 13:4) read as a part of our wedding ceremony, almost thirteen years ago:

Love is patient and kind. Love is not jealous or boastful or proud or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. It does not rejoice about injustice but rejoices whenever the truth wins out. Love never gives up, never loses faith, is always hopeful, and endures through every circumstance. 

At the time, we read it simply because it is what you read at Christian weddings. I honestly don't think I have ever been to one and not heard this verse. It is pretty, it talks about love, it bears a hopeful sentiment for a lifetime of uninterrupted marital bliss.

However, like most couples, I learned early on that there is no such thing as uninterrupted marital bliss. There are plenty of interruptions. There are irritable moments, rude moments, and many times when you keep record of who did what (and maybe even boasted about it).

After a few years (probably after hearing it again at someone else's wedding), I started to think that maybe that verse had it wrong. I mean, really, what did an ancient guy named Paul know about marriage? I don't remember him talking about his wife (or even a girlfriend) anywhere in the text. He never once mentioned that time he promised not to leave his toga on the floor without being snarky about it. Maybe, I thought, like the priest that had given us "pre cana" marriage counseling, he meant well but had never experienced the reality.

Real love, I found, is messy stuff. And, when we had our first child, it got messier (literally). There was much record taking (I did the last 2 diapers, thankyouverymuch), and maybe even a little rejoicing in injustice (thank goodness I wasn't home when that diaper exploded). When we had the second child, it got even messier. When we heard the terms stroke, and brain damage, and hemiplegia, and unknown outcomes... we lost faith. It seemed that we had encountered more than we could endure.

Bad news, surgery, sleepless nights, fear, anger, and anxiety came and demanded its own way. We lost track of the record. We held onto each other until we cried, we cried until we fought, we fought until we talked, and we talked until we finally learned how to really support one another.

 

From Simon's infancy, each developmental milestone slowly missed, then eventually met; through our encouragement and his unflappable determination, taught us that love really needs to be patient. It learns to be. The prayers, help, cheers, and support, of therapists, doctors, teachers, family, friends, and even people we don't know, has taught us over the years that love really can be kind. It finds a way to be.

Perhaps a just little to our surprise, Simon's sister showed us that love doesn't have to be jealous. From the beginning, Livy embraced him without complaining about the extra time he gets, or attention he receives. Instead, she chose to help take care of him with us. She protects him against injustices (like when she thinks her parents are being too tough on him), she teaches him things (like how to play her DS games, and get his own goldfish crackers), and she parties on with his triumphs. 

Of faithfulness, Simon himself is absolute proof. He never gives up, it has never occured to him to lose hope. At the center of his being, it is his complete faith in us, in the love of our family, that will always endure through every circumstance. Simply by being himself, Simon has taught me what love is.

Maybe, after all, that old guy Paul had it right.  

Mommy Guilt

 

Midway through this afternoon I was already tired and grumpy. I was trying to cram about 2 days of work into a half-day because I needed to take Simon to KKI at 3; to be examined and casted for a new AFO (Ankle Foot Orthodic) brace since he has outgrown his current one. After this, we were to have an OT appointment. Needless to say, I did not finish my work and knew that I'd be playing catch up after the kids were in bed (no, I'm not caught up yet... working on it... sheesh.)

I finally stopped feeling sorry for myself about mid-way through Simon's casting. I think it is fair to say that this process is one of his least favorite, and I can't blame him. The kid never knows how long we're really going to leave that cast on (see earlier therapeutic activities for his justification). He is upset, freaked out, and overall majorly stressed-out by the whole affair. 

I couldn't help but feel badly for him. To regret (yet again) all that he has to endure. My head knows it is all for very good reason, and as he cries and asks for help, and struggles to be good and stay still despite his apprehension, I repeat this mantra to myself for sanity's sake. But my heart still aches for him. 

For such a little guy, he copes with so much. Today alone he managed a full day of school, including speech therapy and even physical therapy during recess. Then, I picked him up (he optimistically asked if we were going home, though he knows that it means an appointment when I pick him up from school) and took him downtown to Kennedy Kreiger. There, he was examined by PT and casted for a new brace. Directly following, he participated in a particularly tricky hour of OT. We came home, had dinner, and did a bit of his homework. Then time for a bath and bed. Tomorrow, back to school and therapy, and after school (you guessed it!) another session of private therapy. Speech, this time.

My tough guy is developmentally only three. It's hard for me to realize that and compare his "3-year-old experience" to what I provided his sister -- half days of utopian montessori preschool followed by plenty of mommy time, grandma time, and lots of fun outings and activities. Sure, education was important, but Livy's life was largely about being little, being loved, and having fun. It was a blast for both of us, and a sharp contrast to Simon's day-to-day.

Yet, Simon does have fun; he's a happy guy and a lot of effort is made to make learning and therapy playful for him. But his days are long, and he struggles to get through them. He often tells his aid and teacher that he misses mommy and wants to go home. And Simon is definitely loved, by just about everyone --- his family and friends, as well as his teachers and therapists. In turn, he loves everyone around him with a no-holds-barred-open-hearted affection. Everyone works hard to find the best way to help him, to work with him, to help him grow and develop. But, Simon works hardest of all -- today in OT I watched his entire body contort with effort as he struggled to pick up a jelly bean with his left hand. He is so tough, so resilient, so determined and persistent.

I know that Simon making great progress, and we all have so much hope for him to go further still. I know that we are doing what is best for him, but I also know that he is just my baby, and sometimes, I wish I could do just that -- simply let him be my baby. To be little, to have fun. To be free.