8 Days...

Eight days that have felt more like 2 weeks. Ugh. Two recovery events have happened in the past two days, maybe three. First, yesterday I had the, "What if this is my new normal?" thought and conversation, with myself in my head. "What if it's not going to get any better than this?" "What if I traded waking up 3+ nights a weeks to twice or triple that?" "What if my healing is not typical and a, b, c, or d end up happening?" Thankfully, two things happened shortly after that unproductive though process (like this past week has been so productive otherwise).
The next recovery event was realizing that I am now able to drink liquids using consecutive swallows, instead of pausing while gasping for breath in between each sip. Phew, an obvious improvement, I am getting back to "normal." The third event, so yes there were three, was realizing that it's only been 8 days. I was looking forward to sitting around and doing nothing while my sister took care of my kids, and my husband took care of me until my mom arrived to take care of us all. The plan was to rest up, enjoy this time off. It's not really time off if I can't do things I like to do during my "time off", like read, catch up on tv shows, hang out, sleep, and eat.
Eat, I can't wait for when I can do that again. First of all, eating all the ice cream you want? Not okay, at least not in the first 5 days. Lovely, bubble burst by receptionist, nurses, doctors, etc... Losing weight? True, though I won't say how much at this point because the plan is to gain it back, as soon as I can eat real food. I'm looking forward to graduating from placing slippery food stuffs in my mouth so that it can slide down my throat and provide me, I'm not sure what, hydration? Once I can eat food that needs to be chewed and swallowed, it may take me the rest of the summer to get through the list of all the food I will be reintroducing to my tonsil free lifestyle.
For now, I will try to remember that it has only been 8 days, and not the two weeks it's felt like. I will be patient and hope that the time to enjoy my "time off" activities is near. I will do my best not to think about all the great food I'm missing out on, even with the holiday and barbecues. And I will look forward to full recovery which I"m hoping will gain me more full nights of sleep and less sickness during the year. Now, I think it's time for another bowl of sherbet!

Parenting is hard.

Parenting is hard. I think it's even hard for parents of "typical" kids, though I wouldn't exactly know. I know we're all exhausted, that's a given, right? Yet because of the idiosyncrasies of my children and the unique challenges they face, it's difficult to give up their care, even to the most well intentioned village, if only for an evening away. We're ever vigilant, always on guard, and yes, definitely over protective.

I also imagine that all parents worry, mine still do and I'm grown with children of my own! But maybe parents of typical kids have a little less to worry about. I know there are commonalities among what parents worry about, I just feel like parents of kids with disabilities have a greater number of those worries at any one time. I'd start a list, but I'd like to maintain some semblance of denial.

I can imagine that raising kids is like a roller coaster ride for most parents. There are enough highs and lows to go around, though I think that parents of "special" kids might be experience higher highs and lower lows. Milestones are not taken for granted or expected, instead they are hoped for and celebrated. We flinch when parents joke about the "agony" of having a mobile toddler to chase around. When our kids can stack 3 blocks we jump up and down, much like a parent might do when their child learns to ride a bike. And a milestone as simple as shoe tying may be something we never witness. I'm actually still waiting for that one, and my boys are 13 and 7. Yes, in the grand scheme of things, not such a big deal, but an example of the little things we don't get to take for granted.

The lows on our roller coaster are followed by loop-d-loops, aka the grief cycle. We grieve for what our kids are not or will not be able to do. We grieve for the future we imagined, then turn to the task of creating a new one. We learn quickly that there really are no guarantees, for reals, no joke, seriously. And though coming to terms with that makes life "easier," we're still sometimes resentful about it.

I'm not sure that I'm doing a good job of articulating what it is that I'm trying to say. The emotions I'm experiencing at this moment come and go, in various degrees and for various reasons. Tonight it's because I, along with a few dozen parents, sat through a 3 hour meeting with the special education directors and superintendent of our school district. The purpose of the meeting was to address parent concerns regarding reorganization of special education services due to budget cuts. 

What this boils down to for me, right now, is that I am faced with making a decision of where Parker will spend first grade. Will he continue in his cluster class? Or will he go to his neighborhood school? We also had to make this decision last year. The question isn't as simple as it may seem, there are several factors to consider. I know it's just first grade, but it might as well be college, that's how the weight of it feels to me. I'm afraid to choose because I don't want to make the wrong choice, if that makes any sense. And it's only in hindsight that I will know if it was the right choice, or more accurately, the better choice. 

So yes, to wrap things up before my venting turns into droning, I believe that my experience might not be too different from what it is now if I was parenting typical kids. And though most parents of typical kids probably don't have over a dozen doctors, therapists, clinics, etc... listed in their contacts, I do know one thing we definitely have in common, love for our children.   

My "Instant Happy" Happiness Tool

Happiness abounds, or does it? For me the answer would be yes! I prefer to live happy, and it is a preference I work on, though not as much as I used to. I've always been optimistic, a resilient sort who views the glass half full. Just as I went from running to becoming a runner, I nurtured my optimism and grew into a full blown optimist. The quiz I took even says so! (LearnedOptimism by Martin E. P. Seligman, PhD)

There have been events, situations and people along the way that have shaped my positive perspective. Most have come in the form of challenges namely my sons and their disabilities as well as my own battle with breast cancer. Others have come in the form of inspiration such as Ellen Degeneres, TeamHoyt and YouTube sensations like Kid President and Arthur, the paratrooper turned yogi .

I also use what I like to call inspirational quotes, aka words of wisdom. Just a few of the right words can give an attitude adjustment in just a few seconds. Just a few of the right words can set the tone in a classroom, opening young minds to endless possibilities. Just a few of the right words can give perspective on life or compassion for the life of another. Just a few of the right words can bolster strength and fortitude in order to accomplish the seemingly impossible.

I would like to share some words of wisdom that summarize how I evolved from being optimistic into being an optimist. In her book Instant Happy, Karen Salmanshon says, “Much of the pain in life comes from having a life plan that you've fallen in love with, but that doesn't work out. Having to find a new life plan hurts. The trick is not to become attached to any particular life plan and to remember that there is always a better, EVEN-HAPPIER life plan out there somewhere.”

It wasn't in the plan to have two children with disabilities, but it happened. It wasn't in the plan to have breast cancer, but it happened. Over the course of a decade, I learned that I cannot count on any plan, best laid, well-intentioned, or fool-proof. What I can count on is my ability to patiently and lovingly embrace any plan as it unfolds in front of me. 

To illustrate, two years ago I put in for a transfer which I would call blind. I was requesting to leave one school, and with that request I had to be okay with ending up wherever they found a spot for me. I didn’t just throw caution to the wind, I threw my hat in the ring, I signed on the dotted line, I was all in. I was a little taken aback at colleagues who were afraid for me. Why be afraid? The new prospective job did not scare a little ol' optimist like me because I knew I was taking me to go do it!

Ski Lessons

After Porter's incessant requests for ski lessons, he got his wish. Last week was his first lesson provided by the National Ability Center, a world renowned program that allows for people of different abilities to participate in recreational activities. We are very fortunate to have access to this service so close to home.

On our way up last week, Porter assured me that he was going to be awesome because he is "one-of-a-kind." He definitely has had quite a one-of-a-kind determination and persistence since birth. Not being able to something the "typical" way has never been a deterrent. Porter just finds another way, a different way, an alternative.
After arriving at the ski resort, checking in, and picking up equipment we finally met the instructor. Both of us were surprised to see that Porter's instructor has a physical disability and skis using adaptive equipment. Truthfully, I was surprised, Porter thought it was cool.
There were many different physical and intellectual disabilities among the ski and snowboard students. It was such great reinforcement for Porter, who seems to notice all that people are able to do, and not just in spite of their limitations. I think it's great that Porter can see in others what he sees in himself, ability.

He's such a great kid. I'm lucky to have such an inspiration as a part of my life. I am grateful to watch him tackle his latest conquest. Cheers to lesson number 2!

Blurry

I'm not referring to what extreme nearsightedness has done to my eyesight. I'm also not talking about the snowy blizzard that has decreased visibility and increased driving time.I'm commenting on the line dividing 2012 from 2013, a line that appears blurry. The demarcation of time between "then" and "now" has come and gone and little has changed. It's difficult to explain, probably because I don't quite understand it myself.
I don't believe the blur comes from a lack of resolutions. It's not that I'm not big on resolutions, I just set them throughout the year. Though the first of a new year is a great time to start being a number of things (healthier, more responsible, etc...) so is every other day of the year. The new year can be a catalyst or an excuse to wait "until then." People do it all the time, procrastinate action "until then." Maybe it's the revolving door of resolutions that has blurred the years together.
Last year I resolved to celebrate my birthday year, and have figured out a way to make that year equal 15 months. A celebration of my birthday year would include the whole year in which I turned 40 as well as the year counted from my that birthday to the next. Since my birthday is the last day in March, that gave me all of 2012, plus the first three months of this year. It's been a wonderful celebration of life so far, my best year yet!
Since my 5 year breast cancer survivorship coincided with my turning 40, I also resolved to celebrate just being alive. My gratefulness led me to take my running to a different kind of level and run a race for each of my 40 years, from one birthday to the next. I'm 75% of the way finished. I completed two 5k races on New Years Day, bringing my current total to 30. I'm registered for 7 races, have another couple picked out, and am looking for one more. Check out my tentative schedule and feel free to join me.
I also had one other resolution, more of a wish, a birthday wish. What do you get a girl who has more than enough wants and is fortunate enough to need for very little? Tickets to the Ellen show! That's right! It took  work, faith and patience, but all totally worth it. I can't wait to share my upcoming experience with you!
I'm not complaining about the blur. It's not the where-did-the-time-go blur. It's an everyday-is-a-celebration kind of blur. Each day really is special, enjoy it, and the next and the next and the next.

Easier?

I know life isn't easy, but could it be a little easier? Just every once in awhile? I'd even take every once in a long while.
We started meeting with an orthodontist over 2 years ago, suggested by our dentist. So 2 1/2 years later, with a mouth full of more teeth than he has room for, Porter is still not any closer to being a brace face. We have been ping ponged between his dentist, orthodontist and oral surgeon. It has been recommended that we pursue more expertise, possibly out of state, which we started doing.
In the meantime, I switched his dentist who at his check up wondered why we hadn't been in contact with an orthodontist. When I explained the run around we'd been getting, he set us up for consultations with two different doctors. We had one of those appointments today.
The recommendation: go to the craniofacial clinic at Primary Children's. BIG SIGH.....
It seriously took almost 3 years to figure this out? And I'm not just blaming the doctors, I blame my seemingly intelligent self too. We are essentially back to square one, going back to where Porter started and stayed the first few weeks of his life. He's seen more than his share of doctors too, so we're all wondering, why at 12? Why not at 6? or 4? or 9?
I'm obviously oversimplifying the story, but I don't have the energy to rehash all the mixed messages and incomplete diagnosis we've dealt with over the years. I'm just hoping for answers, Porter is too.
I just need to vent and rant just a little. I know that there are others struggling much more than we are, with challenges much greater. I just wish that every once in a long while, something could be easy. Until then, I will focus my frustration on whatever needs to be done to get Porter the answers he so deserves.

Mom, Mommy, Mother...

As the beginning of the new school year approaches, and I prepare to return to work, I must reflect on an age old argument. And by reflect on, I of course mean to get on my soap box about. Sorry, but I must vent, just a little.
Let's start with a question: When your kids address you, do they call you "Stay-at-Home Mom" or "Working Mom?" I think not, so why do we do that to each other? We're all moms, right? Stay-at-moms work hard and working moms don't love their any children less.
The saddest thing about these assumptions and others regarding different types of moms, is that they mostly come from moms and are directed to other moms. We are harder on each other than our children and spouses could ever be.
Being a mom is not easy, no matter the forum or circumstances. I have been fortunate enough to experience both sides, working during the school year and staying at home for summers. Motherhood is a tough, 24/7, tiring and rewarding job for ALL mothers.
Let's end with a question: Why aren't we more supportive of each other in this challenging yet magical endeavor?