TiggerFest!!!

Some of the kids showing appreciation for the guest of honor.

The party to recognize all those that helped bring Simon and Tigger together was a HUGE success (and I mean that literally -- there were well over 100 people in attendance!). Thank you to everyone that came out to celebrate with us -- It was a beautiful day and a beautiful reason to throw a party.

Me with the awesome band, Confidence in Volume!

Before our awesome band played, I took a moment to personally thank everyone -- here is (more or less) what I said:

This party is not about a dog -- albeit it an absolutely adorable super hero dog. It still isn't about the dog.

This party is about a little boy who, in his first six years, has encountered challenges that most of us would not be able to survive and still be standing; from a stroke before he was born, to three life-threatening status seizures over the last 18 months, to more diagnosis than I care to think about. And Simon has not just survived -- he has thrived. This has been a year of incredible progress for Simon.This year he had a favorite color, deepened his love of all things pirate, and taught everyone some new songs. He also wrote his name and read his first book. This year, in kindergarten, Simon made his first friends. He had his first play date and he had his first ever birthday party (that he helped plan! Pirate themed...). Most recently, Simon got his first dog and with it his first responsibilities in helping to care for Tigger.

Simon has had an incredible year, and we are profoundly grateful. We are grateful for his indomitable spirit and amazing resilience, and we are grateful to the many people that worked with him, cared for him, befriended him, and let him into their hearts to love him.

Which brings me to what this party is really, REALLY about -- the reason it was so important to our family to get everyone together that has so positively impacted us this year -- this party is about YOU. Our family, our friends, our community.

One of my many faults is not knowing when, or being able, to ask for help. The people that love me know this and, as soon as we started to talk about a seizure dog and said the word "deposit" my parents and the rest of our family were there (as they have always been), this time literally with cash in hand and not taking "no" for an answer. I am grateful that they did.

Mom and Dad chasing the kids!

Our friends, also knowing how hard-headed I am, went right ahead and called Noelle's Dogs for Hope to find out what they could do to help us get Tigger. They shared our story with their own friends, and their families, and without me ever knowing about it, they collected funds to cover Tigger's travel from Colorado as well as a significant portion of the cost. And then we went out for dinner one night and they waited for me to finish a glass (or two) of wine before they told me what they had done. Four months later, I am still speechless.

I am unspeakably lucky in my friends!

Simon's school, Lutherville Lab, not only took amazing care of Simon this year, but have completely embraced our entire family and been right beside us in looking for solutions to make sure that we do everything we can to keep Simon safe. I honestly don't know of another school that would say to a parent (without knowing what sort of legal challenges bringing a service dog into their school would present) -- "Whatever we have to do, we will do it. We are here with you." 

Some of the great ladies from Lutherville Lab

Most of all -- the kids. We spend a lot of time talking and worrying about bullies; especially we parents of special needs kids who worry about our children being particularly vulnerable. But the kids that are here today have proven that they are capable of more kindness, acceptance, generosity, and true friendship than we could ever have imagined. 

At his own birthday party, Jaidon asked not for gifts for himself but for his friends to give him gift cards to Petsmart and Petco so that he could give them to Simon to help buy what Tigger would need when he came home with us (Tigger says thank you for the toys!).
 

Simon with some of the great stuff for Tigger we were able to get with Jaidon's gift cards!

Ridgely Middle found out about Simon and Tigger through Kayla, whose mom is Simon's kindergarten teacher. They used their annual Arts in Action night to raise awareness about epilepsy and seizure dogs, and raised funds for Tigger through the auction of some pretty amazing pop art sculptures. 

"Club Friends" created by a group of students at Lutherville Lab to be a club for kids both with and without special needs to celebrate friendship and share their kindred spirit with the community through good works; waged a "Cents for Simon" campaign that raised impressive funds, awareness, and an amazing affection for Simon throughout their school and beyond (we have heard fifth graders describe Simon as the most popular kid in the school -- I have a feeling that Tigger is going to totally lock that in for next year, too!).

Simon at school with his teacher, friends, and Tigger!

Finally, Simon's kindergarten friends this year, and his teacher and aide Mrs. McGee and Mrs. Natterman. These were the most enthusiastic supporters of the "Cents for Simon" campaign; canvassing their friends and relatives for support, creating lemonade stands and wearing their "Help Simon get a Seizure dog" pins with pride. This year -- seeing how Simon is not only accepted by these awesome kids, but cared for, helped, and genuinely loved by his classmates, has been the most profound gift this mom could have ever received.

People typically throw parties like this to celebrate milestones in their life -- to recognize an important place they have reached and to celebrate with the people that have helped them get there. This year, we have gone from feeling frightened for our son's well-being, to being embraced and uplifted by our family, friends, community, even people we don't know -- together, we have experienced a true miracle, and I can't thank you enough for being a part of it. I will carry this in my heart always and I know that years from now, when Simon is encountering more challenges as we all inevitably do, I will have the story of what happened here to remind him of how loved he is, how great people can be, and how miracles really can happen.

Our awesome school-bus-driver-ice-cream-man made a special appearance with his truck for the occasion. He was just as popular as Tigger!

Beanie Baby Service Pups in Training for everyone to take home!

Simon had so much fun he required a two-hour post party nap.

This about sums it up. :-)

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.  

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.

Truancy

This morning, as I drove Olivia to Sunday school, she remarked that it had been a long time since we'd had our last "Mommy Day." I agreed with her. It has been over a month, longer than we usually go without spending dedicated special time together. She and I tried to plan when our next one would be; and, to our mutual disappointment, we discovered that it would be at least 4 weeks away.

"Oh," said Olivia in a quiet voice, "that's not good."

"No, it isn't" I agreed.

When we pulled up to the church, I found that, due to the adjacent college's open house, there was no parking to be found. I double parked with my flashers on and walked her to the door of the rectory.. which was locked. Everyone was waiting for the person with the key to show up (not an unusual circumstance).

As we waited, I noted the blue of the sky. It was so clear today, it seemed to hold endless possibilities. And yet, there I was locked out of the classroom but still locked into the usual routine, despite the downcast eyes and palpable sadness of my too big little girl.

Suddenly, I saw the signs and refused to lose another minute.

"C'mon, Livy -- let's go!"

And so we did. I grabbed her hand and together we ran back to the car, revved the engine, and streaked out into the world together.

Moments later, seated at Olivia's favorite place to have breakfast in the entire world, she was positively glowing over her hot cocoa and chocolate chip pancakes. I'm sure I was too, as I basked in the warmth of her big brown eyes, and talked with her about her favorite books, her new art class, the silly things her friends have said, and her desire to redecorate her bedroom ("I'm a big girl now, Mommy.")

I've always lived by "the rules." My "wild" youth was embarrassingly tame, and as I'm growing older and looking back, though I am proud of all I have accomplished; I sometimes regret the chances I didn't take.. simply because I wasn't "supposed to."

Olivia and I both knew what we were "supposed to" do today. But we also knew that there was something else that needed attention. I want to teach my daughter responsibility and commitment, so that one day she too can look back at her accomplishments with pride, knowing she has done "right." But I also want her to know that, despite all the supposed-to-have-dones, there is nothing more important than living in love and in the present, and to miss that would leave the deepest regret.

I don't want Olivia to only remember that her mother always did what she was supposed to do -- I want her to know that her mother loved her wildly. That responsibilities and commitments may justly run our lives, but it is love that rules them.

I promise I will take her to Sunday school as scheduled next week. But, I don't regret our truancy a bit. And, somehow, I think God understands, as only a fellow loving parent can.

Dreams

I've had a lot of babies happening around me lately (congrats all you new mom and mom-to-be buddies!), so it isn't too surprising that last night I had a very vivid dream about having another baby. In the dream, childbirth went exceptionally well and all was calm and happy -- sort of the opposite of when Simon was born. And I was thrilled -- until the dream nurse put the baby in my arms. I looked down and saw Simon (his newborn self).

"Wait!" I said, "I already had this baby -- and he is a little boy now."

"I know," said the nurse "but this baby is perfect -- no brain damage. You get to do it over!"

At that point, the dream turned into a nightmare. "No," I cried, "I want my son back -- my Simon. I love him just the way he is, and he is perfect. Don't take him away from me."

I think, for the first time ever, I was happy when Simon woke me up at 5 am to climb into bed with me. The dream faded and I held him close. As he snuggled into me, I knew that I really wouldn't change a thing. Though I both pray for and work towards miracles every single day -- to me, he is perfect, and I will always love him just as he is.