If You Don’t Want the Truth, Stop Here.


I have been absent.  Not only from my blog, but I feel like I’ve been checked out of parts of my life for more than a year now.  Maybe it was self preservation?  Life finally caught up to me.  I wasn’t being honest about the burdens I was bearing.  I wasn’t asking for help – on the contrary, the more I panicked, the more I reached out to others to make sure that they were okay.  As Harry’s Mama, I felt that there was this job description I was required to fill out, and asking for help was not part of it.  Sure, I eeked out little complaints, here and to close friends, but I wasn’t being honest.  An honest call from me would have been: “I am DROWNING.” because I was.  I was absolutely drowning, and I told no one.  I wept tears of pure joy when our friends from Jersey Mikes gave us the gift of our service dog.  I smiled when we went on our vacation to Costa Rica.  I gave and received gifts at Christmas, but there was so much more I was hiding behind there, and it almost killed me.  So here I am to tell anyone who will listen.  Albeit a bit cowardly to pen this behind a computer screen, it needs to be said somehow.  This is the most honest I’ve ever been, and while I’ll leave some things out to protect people, be forewarned that this is from the depths of me, and I need to say it.

Having a special needs child has, at times, crushed me.  People call me supermom, and inside I cringe because I am truly terrible at this.  Don’t get me wrong – I fight like a tiger for my son, and I am very good at it.  The problem is that I slowly let pieces of me fall apart, and I tell no one.  This past winter, I had a nervous breakdown.  I couldn’t do it anymore – I couldn’t do anything anymore.  To make matters worse, I began to deal with some serious health issues that prevented me from not only doing any sort of exercise, but eventually it gave me excruciating daily pain that I could not escape.  My marriage had changed, and without going in to detail that the world has no right knowing, I will say that we decided to be friends instead of spouses.  It was so SO hard at first, but now that my relationship with him is one of the best parts of my life.  Josh and I are best friends, just like we always were, and we are better parents than we ever were.  We will always love each other very much, and I treasure that.  We were also lucky enough to find significant others that are incredible not only to us, but to our main man Harry, and isn’t that what it’s all about?  So that’s what I’ll say about that.  Moving on.

In March, Josh’s job changed, and his insurance immediately capped Harry’s PT visits at 30 a year.  We panicked, we fought, and we got no where.  Our only choice was to spread the visits throughout the year, as we couldn’t afford to pay for them out of pocket.  Slowly,  due to lack of work, Harry lost the ability to move easily.  This was complicated by a minor fall that hurt his knee, where we also discovered an arrythmia in his heart and some severe, chronic dehydration that could effect his kidneys.  He eventually lost the ability to walk forward.  What was already crumbling began to crash down.

I don’t know how to even begin to speak about most of 2017, what ensued after this in March.  These were my darkest times.  I felt helpless to everything that was falling apart around us.  We are good people, I am a good person, why was all of this happening?  I lost friends, I lost family, I lost touch with myself.  It felt like loss was just a part of life for me, for Harry, and I had no control over it (and boy am I a control freak).  I watched my son take his last unassisted forward steps, and I feel like there’s not many people in this world who can join me on that.

I’m not speaking from a place of betterment or clarity here.  Sure, a lot of things have cleared up.  I am, for the first time in a while, living with no pain and no medical issues, which I couldn’t feel more blessed about.   I recently moved out of a very dangerous situation, and I feel safe and loved and taken care of.   We all have love in our life, as well as support, kindness, and generosity.  But why am I blogging again?  The point of all this is for me to be honest, and the first step to that is writing again.  Writing has always helped me, even if it was a little poem I put in a note in my phone, or blogging.  But it has to be honest, both in the written word and in the spoken.  When I was trying to pretend everything was okay, it wasn’t.  I fell in to the deepest darkest hole that I not only thought I would never get out of, but most of the time, I didn’t want to.  I have never in my life felt that way, and I didn’t know how to express it or ask for help.  There is no magic switch to flip where I am okay here, but from experience comes perspective and we can grow and learn from and adapt to that.  I am better than I was one year ago, that’s for sure, but I have a way to go.  On my way, I have to be honest.  I always thought I was an honest person, but I’ve learned that when it comes to asking for help, I am not.

So now, we are here.  Harry broke his leg.  In all honestly, this is a really tough pill to swallow.  I have always lived in fear of any breaks in his lower extremities because that time off his feet would most likely rob him of his weight bearing abilities after the break heals.  So here I am, carrying my limp, crying son, imagining that not only will he never walk again, but he may never stand again.  And I’m going to write this and post this and not worry that I sound negative because this is how I feel right now and it’s swallowing me a bit currently.  We all go through shit as parents.  We need help now and then.  Our kids present challenges and worry us and get us down.  My situation is no better or worse than anyone else.  The difference is, I said “I can be supermom!” and took on all this heavy shit and I let a black cloud swallow me.  I never reached a hand out for help.  I will not do that again.  I don’t know what I need, but being honest is step number one.


Jersey Mike’s Cares!


photo credit Ryan Perillo

It’s taken me over a week now to clear my brain and feel like I might be able to attempt the words needed to tell this story.  I have never in my life been so completely floored and blown away by the generosity of others, and believe me that’s a hard feat – we are absolutely surrounded by amazing friends and family that would do anything for their Harry.

Let’s start at the beginning.  For those of you not from New Jersey, Jersey Mike’s is a sub sandwich chain that is a staple for us Jersey folk.  The sandwiches are simple, consistent, and delicious.  It started in Point Pleasant and has grown, even making moves nationally now.  Beyond the delicious food, I now understand why this small sandwich shop is growing so much – because the people behind it have hearts of gold.  Jersey Mike’s, at its core, is an organization of charity, of giving, and love for the community.  The best is that they do it without need for recognition.  In fact, they would prefer you don’t make a big deal about it.  Well sorry, friends, I will never stop making a big deal about this.

Back to the beginning – I was enjoying a delicious club sandwich (number 9 for those of you in the know) right at the beginning of the birth of Harry’s Heroes, and I saw a fundraising sign.  It told me to hold my event at the shop, and I couldn’t think of a better place to sit and eat, while raising money.  I contacted the store, and set up our first date.  Immediately, I felt like I knew these people.  Kyle and Amanda ran the show, helping me promote and develop flyers, and their staff of high school and college kids were fun and friendly and championed our cause.  Everyone instantly took us in as family, and of course, fell in love with Harry.  Soon he was behind the counter, the guys were donating their tips to us, and I was making last minute extra shirt orders so everyone could get what they wanted.  Wow, I had found something special.

Fast forward many fundraisers (which started as a single day and evolved to whole weeks) later, and Jersey Mike’s is our second home.  I’ve tried to relay to others just how special these people are, but it’s hard to put it in to words.  Recently, their actions were honored by the town.  The Howell Chamber of Commerce named them business of the year, and invited them to the annual dinner.  Amanda insisted that we be there and bring Harry if possible so we could all party.  I obliged and thought nothing of it – I just wanted to party with my friends!

Before the event, Amanda asked me if we could record a video they could play before their award acceptance.  I must be really busy, or half brain dead, because I said yes thinking that they wanted Harry.  I showed up that morning fresh from the gym, frizzy hair and all, and was greeted by a professional camera crew.  With a lot of complaining, I fixed myself and then poured my heart out about a company I love so much.  The video came out and it’s amazing.

So the video is played, and the JM gang brings up a large, flat object wrapped in JM sub paper.  They then call us up to the stage, and for some reason I have no idea why.  Everyone looks slightly emotional and nervous.  (Looking back on it, one of the young guys was sitting at our table, and wouldn’t talk to Josh or I.  I think now that he didn’t want to spill the beans!)  Amanda says something amazing that I could never repeat because I have no idea what she said.  I remember something about watching us chip away at such a big price tag, falling in love with Harry, knowing he needs this dog, who knows really.  I started sobbing and didn’t stop for almost an hour.  We took teary eyed pictures (how Ryan Perillo made me look semi-sane I’ll never know) and hugged.  I took Harry to the bathroom and he said to me: “Mama, do I get my doggie now?  Is that why you are crying?”  Needless to say, we were in the bathroom a while composing ourselves.

I took some extra time to compose myself writing this as well, and I still don’t think I have the words.  People often say to me “You have such a way with words!”, but I think this time they actually fail me.  I don’t know how to properly thank these people, my friends.  I met the COO Mike and, even though we had only first met, the love had trickled its way to him and he already knew and loved Harry before meeting him.  Maybe one day I will find a way to thank everyone, but today is not that day.  All I can say for now is that I love you all, so dearly, so very much.  You’ve given my family and my son something that we so desperately need.  You’ve also lifted an incredible weight off my shoulders, and for that I am forever grateful.  All my love.



Harry has always been a good sleeper.  It was a little dicey in the beginning (which I would assume in the case with most newborns), and I vividly remember a period of time where he would nap nowhere else but on me, but for the most part it’s been cake.  Currently he is a four-year-old who will go to bed at any time you put him to sleep and sleep soundly, never waking, until somewhere between 7 and 9:30am.  He also takes a nap from 1 or 2 in the afternoon until about 5:00pm.  Please don’t send me hate mail or hit me.

Recently, he’s become a bit manipulative about the bed time routine.  He’s figured out that he can claim he’s thirsty, hungry, or needs to pee, and we sometimes fall for it.  In my defense, I usually only fall for the hunger complaints.  Any calorie I can get in to him, I’ll take!  After that was fixed, Harry began to complain to me when I put him to bed that he wanted to snuggle.  This I will almost always fall for, or at least pretend it’s not just his manipulation to stay up later.  Let me explain – my little guy prefers my big guy over me.  I know, I know. I too thought that I was supposed to get a “mama’s boy”, but instead I got a “daddy’s guy”.  This is alright we me most of the time, because I just love to see the two of them together.  Sometimes, however, I feel sad and jealous because I want that kind of connection, but I know my role for Harry is to be tough with him all the time.

With that being said, if he wants to snuggle with me dammit I’m snuggling with him.  This is especially true when I’ve worked or have been at school and I’ve missed his day.  We talk about a few things, recapping the day, and I ask him questions, but mostly we truly snuggle.  We press our foreheads together and we just breathe.  I can remember the exact feeling when we napped so often together, or when he fell asleep after breast feeding.  It brings me right back to that squishy baby and it warms my heart.  The sound of his breathing has never changed – the WHOOSH of the breath through his nostrils sound exactly the same now as it did when he was a little baby, and that noise is music to my ears.  There is a slight whistle to it, and it comes out gently but quickly.  I can hear it now in my head and in my heart.  It sounds silly to be so attached to a noise, but it’s my lullaby.  It allows me to be right there, in the moment, head on his pillow, forehead to forehead, with nothing wrong in the world.

Sometimes when I get stressed I think about being solid in my shoes, feet on the ground.  Realizing I am still here and I’m okay really helps, and it gives me a moment to step back and reassess.  Sometimes, if that’s not enough, I close my eyes and I hear the WHOOSH, like a gentle metronome guiding me with its rhythm, and all is okay again.  One day I’ll be Harry’s mom who loves him a little too much, and talks about these weird things, but I’ll close my eyes and remember the sound of my baby’s breath against my cheek, and I’ll be okay.

Another Spill


Last year we replaced our very old carpet in the bedrooms of our home.  We went middle of the road – nothing too expensive, nothing too cheap – but I like what we chose.  About a month ago, I was putting away my flimsy box that held all of my nail polish bottles away, when the handle snapped and it fell open.  A bottle of very dark teal nail polish collided with another bottle, and it shattered.  The teal nail polish covered my pants, feet, and worst of all, the carpet.  My favorite pair of pajama bottoms met their fate in the trash, but what were we to do about the carpet?  My wonderful husband tried as he might with windex, nail polish remover, and the extractor, but we were still left with a stain.  I was devastated.

Fast forward to two nights ago.  I had chosen a summery coral to paint my toes, and I was putting it away my new and very sturdy box when the top opened and a couple of bottles fell out.  A pretty yellow bottle hit the coral and, before my eyes, cracked open sending yellow nail polish everywhere.  I immediately began yelling and cursing, Josh came to the rescue, but again, we were left with a stain.  At least this one matches the carpet better.

Why am I telling you about nail polish?  Because, like most things, this gave me insight in to other problems I’m having.  I am a clumsy person, my husband lovingly refers to someone “pulling a Gloria” when they have an open drink in their hand and bend over, forgetting gravity, spilling the drink out.  (I do this often!)  Both of these nail polish cases were not a fault of my clumsiness, they were unfortunate luck.  I hopped in the shower to clean of my sandals and began to cry.  Why me?  Why did the second bottle have to break, and also why the first one?  This is new carpet, and we’ll have to replace it again, and soon since we want to sell our house and move.  I went to bed upset and feeling very sorry for myself.

I often get in to a “why me?” spiral, especially when it comes to Harry.  Those “why me?”s are often also “why Harry?” and “why our family?”, and those hurt the worst.  It’s easy to let a black cloud follow you or even over take you.  Some days are easier to brush those feelings away, some are harder.  Maybe it’s fate, maybe it’s in the cards – I don’t pretend to know why things happen to anyone.  I also try to never say “everything happens for a reason” to anyone because I hate that saying.  It doesn’t make anyone feel any better!

So, I ruined our carpet.  So what?  It didn’t happen because the universe has it out for me, even though I felt that way.  I don’t have bad luck either.  It’s just life – a string of sometimes shitty, sometimes awesome, and sometimes mediocre things happening to you and those around you.  Honestly, the carpet was ruined the first time, so it was no worse for wear after the second spill.  I could have laughed hysterically, honestly, but I chose to be angry and then feel sad, hoping the universe would pity me.  You are your choices – this is something I am constantly working on.  Take a moment and choose wisely.

It All Comes Pouring Out


If you know me, you know I like to keep moving.  Look forward at the next step, move toward it, stay in motion.  This quality has done me wonders after having a special needs child, it has become my safety and my coping mechanism.  Even with a child whose diagnosis has no treatments or cures, I can move forward by creating Harry’s Heroes and fundraising to support research for muscle disease.  Standing still is the enemy.  A pause offers too much perspective, too good a look around.

The problem with this mechanism is two fold: first, the nature of having children is fast-paced.  We all know, they grow up too fast!  If I perpetually move, I miss too much.  I have to remind myself to stop and enjoy the moment rather than always looking ahead.  The second problem is the great force that builds behind that dam.  I am not a cry at every small thing kind of girl, I am a “bottle it all up until it explodes” lady.  If I don’t look too hard at Harry’s inabilities or struggles, I can focus on solutions and physical therapy and drive toward better.  It also doesn’t hurt as much if we keep on moving.

Then, I stand still and look, really look at where we are at.  I look at my sweet little boy and assess what is going on right now, and sometimes it breaks my heart.  The dam breaks and my tears flow, for his loss and inability and struggle.  It often breaks me, it hurts and I struggle to get my head above water.

Sometimes a good cry is really all we need.  We purge those pent up feelings, and start with a clean slate.  There will never be a time that part of me isn’t sad because of muscle disease, but a lot of times that part is very, very small.  That sadness also motivates me and drives the happiness.  I do have to learn to vent the build up a bit before it explodes, but I do learn slowly but surely.  On the other side of explosive sadness is usually massive happiness, because after the tears I gain a fresh perspective, and I feel cleansed.  It’s all part of the process, my friends.  Onward and upward, sometimes slow and sometimes fast.


Disabled Disney


Hi friends!  We are back from our very first Disney vacation and I am so excited to tell you all about it.  We were able to go because hubby’s work did a conference at the Disney Swan and Dolphin so the hotel was paid for (for some of the trip).  This is not a vacation that I would normally pick, as I prefer to lounge on a beach or hike in a rainforest, but there are some things we do for our kids!  We certainly didn’t have a bad time, but we knew we’d be tired and broke by the end of it, and that’s the choice we made for our little man who has been working so hard at all of his therapies this summer.

Before we got down, someone suggested to me that on our first day in the park, we go to Guest Services an obtain a “disability card”.  Our first day was just Harry and I and we opted for Magic Kingdom, so as soon as we got there we headed to Town Hall.  I spoke to a very nice man who granted us this card (apparently they are, rightfully so, particular about who gets them) which allowed us to have a sort of fast pass.  Guests can buy fast passes that allow them to cut their wait time in line and pre-schedule ride times.  Honestly I don’t know how anyone goes during a busy time without a fast pass.  The disability card is a bit different – you can only get a wait time for one ride at a time, no pre-scheduling.  You need to approach a ride attendant at the entrance to the ride, inform them that you have a disability card (which they scan), tell them how many in your party, and you are given a time that is 10 minutes less than the current wait time.  After that time, you can return and enter the fast pass line where you wait another 5 to 15 minutes.  This system works wonderfully!  My only complaint is that I had to say “my son is disabled” about a million times, but other than that I was a super happy camper.


Now let’s elaborate on that 5 to 15 minutes you are in line.  My friendly Guest Services employee did not know that my son was physically disabled, and therefore did not inform me that I had one more option.  For half a day in Magic Kingdom I was getting my return time, coming back to the ride, parking my stroller, extricating Harry, and carrying him through the line, on to and off the ride, out of the ride and back in to the stroller.  Compound this with Florida heat and the tons of times we went on rides, and by lunch I was toast.  It took one of only a few jerk employees to help me realize there was another option.

Of course Harry insisted on riding the steam train that circles the park, so when I needed the above mentioned break I headed there.  As I approached the station, I noticed there was no ramp other than the handicapped line, and I could see the train coming.  I had to hurry and we needed our stroller (Mama needed a rest), so I let myself in the handicapped lane, hoping to explain to the attendant my situation.  This very elderly man noticed my security breach and yelled at me.

“Ma’am you CAN’T go through the handicapped lane!  That’s for disabled people, not strollers!”, said elderly attendant.

“My son is disabled…” slightly embarrassed Mama returns.

“Ma’am I said DON’T USE THAT LANE.”

“I heard you,” a little louder, “my son IS disabled.”


“He’s DISABLED.”  Now I’m mad.

“I CAN’T HEAR YOU.”  This is clear.


At this point a very kind engineer (well he was dressed like one, let’s say he’s an engineer) sees my distress and helps me to the handicapped area.  He offers me a hug and I decline, take a deep breath, and am alright again.  The train approaches, stops, and the conductor gets out to help me.  She kindly explains to me that normally they don’t allow strollers unfolded but she’ll allow me on because I look like I need a break.  I explain to her that my son is disabled, and she informs me that I can obtain a tag from Guest Services to use my stroller like a wheelchair.  WAT.

So let my struggle help you (which I did two days later when I met a woman whose two year old was in a body cast), if your child is physically disabled, not only can you get a Disability Card from Guest Services, but you can get a red tag that literally has a picture of a stroller, an equal sign, and a wheelchair.  BOOM.  Knowledge.  Granted, this is not fool proof.  We were stopped many times by people who couldn’t see the tag…Excuse me!  Miss!  Your stroller can be parked over there! *points to the left*….to which I respond with a smile and a point to the sticker, and each time I got an apology (unnecessary but sweet) or something of the like.  Problem solved.  Harry happy, Mama’s back happy.


I also need to tell you one more story.  In Disney there are lots of people stationed around to answer questions, like the people who stand at entrances to restaurants.  I spoke to a woman in front of the Pinnochio Restaurant or whatever it’s called, because I looked confused.  She asked me what I was looking for and I told her my son needed a special cup and I was looking for a tall one with a long straw to refill with water to keep him hydrated.  She informed me there was one inside the restaurant, so I went in.  What they had was this cute Frozen cup, super tall, but it was filled with frozen lemonade and also $12, so I opted to leave and keep looking.  As I was leaving, she politely asked me if she her suggestion wasn’t right, apologizing to me.  I explained I was going to keep looking, and she asked me to wait a moment.  She returned soon after with a cup and a large bottle of water, and gave it to me with a smile.  She has no idea how much she saved us, and how much independence she ended up giving Harry.  The cup was perfect and we used it every day, all day.  Amazing.  A little can go a loooooong way.


That Fresh Feeling

Nostalgia hit me hard this week, and it was so, so strange.  I had some time off from work (I worked the beginning of last week and I work the end of this week), so in preparation for vacation and a new job I spent most of the week running around doing this and that.  The weather finally broke (I’m not complaining, just stating facts.  I like the heat!) and it has been unseasonably cool, to me almost fall-like.  Fall weather always makes me remember my early twenties when I worked at Six Flags Great Adventure.   I worked in the summer too, but the fall was my favorite time to work because we had less open days and more days to work at our own pace.  I used to work with the animals there, and those days, well, they were some of the best times of my life.


Hanging with Tamra at my second SFGA job – The Dolphin and Sea Lion Show!


I always look back on that time in my life fondly.  Part of it is because I was young, carefree, entering womanhood, discovering my passions, and so much more.  I had some great people around me (also some not so great), but all in all it was a good time.  When the weather turns cool I am instantly transported to that time – saying goodbye to summer loves and coworkers and such.  So low and behold, the other day I am driving with the windows down enjoying the cool air, and as I happen to be passing the park my iPod turns on a song that I discovered and listened to during that time.  I had such a physical reaction to the nostalgia, it was incredible.  My heart raced, my breathing increased, my hands gripped the steering wheel, and I felt like I had tunnel vision.  All of a sudden I was back in my trusty orange Explorer, going to work.  It was a moment that I got to revisit that beloved time in my life.  I was doing something I truly loved, learning about love and loss and being a woman, and life was good.  Not that it isn’t good now, but it was just good.


My third and final job at SFGA – Animal Ambassador with exotics, posing here with bosses, coworkers, and Jeff Corwin!


I thought long and hard about those years after my song, aptly titled “Fresh Feeling” ended.  The lyrics stuck with me too, and I felt like I had never really listened to the song before.

Try to forget what’s in the past
Tomorrow is here
Orange sky above lighting your way
There’s nothing to fear

I look back on different times in my life and how in a rush I was to get to the next place, the next step or stage, whatever was next.  It’s not that I wasn’t happy, it’s just that I was curious what was coming.  I don’t want to go back to those times, I’m so comfortable and happy with where I am in my life, but I would give almost anything to be able to revisit and tell myself to SLOW DOWN!  I feel like this as a parent a lot – I want to rush Harry to the next stage, and I have to remind myself to enjoy the now because it is gone way too fast.

Every chapter in your life is important.  Some are more fun than others, but I still find myself looking back and feeling warm from one thing or another in each part of my life.  I don’t have regrets, I have fond memories that will last a lifetime.


My love, Jester!



How to Not Helicopter Parent Your Special Needs Child


So if someone out there could figure out the answer to this question, I would greatly appreciate it.  You expected some great wisdom in here, didn’t you?  Well I honestly thought in writing that title, some epiphany would come to me, but here I am still waiting!

I write a lot on this blog about parenting because it’s the part of me I am in the most, and the part that I work on the hardest, but let’s be real here.  I am a 34 year old woman with one child who is only 3.  I know essentially nothing.  Here I am at just the tip of the iceberg trying to write self help blogs.  The nerve!  Sometimes I have good little tid bits that come out, but honestly I’m just venting.  This brings me to my current concern – helicopter parenting.

You all know what the term means, and if you don’t think of what a helicopter does (hint: it hovers).  I never wanted to be one, but here I am, hovering over my child at times.  But wait!  I have a valid excuse!!  My son cannot get his hands up to his face when he falls, so I am there to protect him and catch him, but where does this all end?  Where does fall protection end and over protection begin.  How do I teach my son independence?

Part of this answer lies in our next step: a service dog.  This is our way of putting an extension of ourselves with Harry, someone to help him with balance and with falls.  Unfortunately it looks like a dog is a couple of years away, so what do we do now?  We are in vital developmental years, and I want to lay a good foundation for my son to rest on, but I don’t know how.  If I am too close too often, he depends on me and is scared if I am away.  If I am too far, he falls and gets hurt and is frightened.  I need to find the middle.  Sometimes I am good at the balance, but when I look at the big picture, I worry.

The natural tendency for those around Harry is to coddle him.  He’s cute, he’s sweet, and he’s manipulative.  He can talk his way out of anything.  He is stubborn, and he is not tenacious by any means, so when he doesn’t want to do something he simply doesn’t, and he usually talks the people around him into letting him get away with it.  I am constantly fielding questions from teachers/therapists.  “Is Harry able to sit up on his own when on the ground?  Because he told me he can’t without support.”  Yes, Harry can sit up on his own, but saw an opportunity to be coddled and took it.  Did I teach him this?

I think I’ve discovered more questions than answers here, and I know it will for sure become more difficult before it gets easier.  In parenting, I know there are no rights or wrongs.  We learn as we go, and we follow our hearts and instinct.  I love my Harry man, that is for sure, and I will do everything I can to give him every opportunity to develop into the wonderful man I know he is destined to be.  For now, I hover.

Becoming a Runner


Me and my friend James, of Jar of Hope, at their second annual 5 k  You should check them out at jarofhope.org !



I am a runner – as crazy as it sounds, this phrase still shocks me.  I never thought I could be a runner, or that I wanted to be a runner.  It seemed to out of reach, really because I had put it out of reach.  But here I am, a runner who is learning how to get faster, and sometimes wins things.  Who knew?!

So what does it mean to be a runner?  It certainly doesn’t mean you are the best, that’s what practice is for.  It doesn’t mean you are so dedicated that you run on a regular basis, let’s face it we all are busy and have lives.  Being a runner means that you care, you try, and you set goals – whatever they may be.  I think that is the single most important thing for a runner to do – set goals.  This allows you to work toward something and feel accomplished when you attain it.  Think about it: does anyone just go out and run in any direction, for any distance, at a random pace?  No, you decide to jog around the block.  Then it’s around your neighborhood.  Before too long you’re doing sprint intervals and following crazy paths through the woods.  It evolves as you go, and can be tailored for any phase of your life you happen to be in.

Running for a reason is one of the healthiest and most rewarding ways to do it.  Me, I started running for my son, who can’t.  You might decide you want to be leaner, or accomplish a goal like a half marathon or marathon.  Whatever it is, let if be your mantra and hang on to it when the going gets rough.  The going will get rough.  Often.  You need something to push you through.  Imagine that bikini, or that medal around your neck!  Whatever helps you put one foot in front of the other is your magic motivator.  Don’t give up.  Once I figured out it was always going to be hard at some point, running became a whole lot easier.

So what’s my point?  If you want to be a runner, go out there and run.  But don’t just do it willy-nilly.  Set goals (so you can push yourself), get proper footwear (to save your feet, back and knees), and celebrate your milestones.  Enjoy the sweat, too.  Sometimes I think that’s the best part of the run.  That and the beer and donuts and pizza and bagels and stuff.


A very sweaty me after a crazy 9 mile treadmill run.  It hurts so good!

Parenting is Special


Parenting is tough, no matter what your situation, and I give all the parents out there some major credit.  This job is challenging, to say the least!  But to my homies, my special needs parents, I’ll give you a little something extra – you guys rock.  This is a crazy club to be a part of.  I would be lying if I said right now “I wouldn’t have it any other way”.  Sure, being a parent to my Harry man has changed my life, and I am proud of who I am today, but I would give ANYTHING in the entire world to give him a normal life.  I would do ANYTHING to change his situation, and give him the abilities he so deserves.

Let’s rewind here – I’m sure all of you parents out there remember life before kids.  You dream about your children, about who they will be.  You dream about your life – what kind of parent will you be?  You wonder if you’ll be strict or a pushover, and laugh when you think of comparing yourself to your parents.  You plan for the perfect delivery, the perfect baby, the perfect family, and then it happens and it’s anything but perfect.  But let me tell you a little secret – that feeling multiplied a thousand times is what happens when you have a special needs child.  When you realize your child is different – it could be during an ultrasound when you’re pregnant, after birth, or even when your child is a bit older – life as you know it comes crashing down.  It takes a while to get adjusted, but we all do it.  We live, we learn, we get tough, and we do what we need to for our kids.  Part of us special parents will always long for “normalcy”, not only for our child’s sake, but for the family’s sake.  Hell, for our sake.  We all have moments that we look back and say “Why me?  Why us?”  This is healthy and normal – we want the best for our kids.

I remember when I was in college (the first time for Equine Sciences, aka horse stuff) it was suggested to me that I look in to therapeutic riding.  I remember a professor trying to talk me in to it because of my medical background.  They thought I was a great combination to help children with special needs enjoy the benefits of horseback riding.  I politely but vehemently refused.  I knew I didn’t have the patience for special needs riders, and knew it was better suited for someone else.  I had no desire to work with special needs children and knew it wasn’t something I was going to be good out.  Well, look at me know!  The big man upstairs works in mysterious ways.

One thing I’ve learned over the years is that life is not on a prewritten script.  The more adaptable we can be, the better life can be!  Change is scary, but change is good.  It rounds us as people, gives us good experience, adds character, and all that good stuff.  Many special needs parents will be familiar with the poem “Welcome to Holland” by Emily Perl Kingsley.  I was just recently introduced to it, maybe a few months ago.  The first time I read it I cried like a baby, and it still often moves me to tears.  It talks about what we imagine as parents, and how we feel when those dreams are taken from us.  I dream of Italy, but am finally feeling comfortable (albeit a little tired) in Holland.  My fellow Hollanders – today and always I send you my love and support!  It’s okay to still miss the feeling of dreaming of Italy, just enjoy the tulips too.