I Can Fly!

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Running is a strange thing.  Sometimes, for no reason, it goes terribly.  Sure you can train and eat right and not wear new gear and warm up properly, then for no good reason you fail miserably (see my attempt at a marathon).  Other times, you expect a huge failure, and somehow you gain wings.  Every single time I’ve PR’ed, or even just run fast/easily, it comes as a huge surprise to me.  Maybe I don’t have enough faith in myself as a runner!

I mentioned the other day that running has taken a bit of a backseat lately.  Adjusting to the night shift has complicated running for me, and I have a nagging Achilles issue that I’d like to fully resolve before something serious happens.  I have been running the 1-3 treadmill miles that often opens my Orangetheory classes, but that’s it.  Today I thought, “Hey maybe I should try a run on the treadmill?”  Before I had the chance to talk myself out of it, I headed to the gym.  It was almost 100 degrees today, and my run at noon was happening no where else.

Part of the key for me is not overthinking it.  When I spend all day worrying about my run, I talk myself either out of the run or in to problems.  Hopping on and getting going was the best thing I could do.  My base pace has increased over the past year from 5.5 mph to 6 and finally now to 6.5.  I did 1 mile at 6.5 mph, 1 at 7 mph, and 1 at 7.5 mph.  The final mile I did splits: 0.2 miles at 8 mph, walk for 0.1 miles.  0.2 miles at 8.2 mph, walk for 0.1 miles.  0.2 miles at 9 mph then 0.2 miles at 9.5 mph.  I felt like a beast!  I don’t know what clicked, but something was magical and I felt great.  If someone could figure out the magic piece to this puzzle, please let me know!  Otherwise I remain a slave to this mystery!

Gettin’ Me Down

Oye.  I am feeling a bit trampled on and down in the dumps today.  Work is rough.  I’m just feeling a bit abused and my confidence is suffering.  I can get whiney from time to time and I feel like whining a bit now.

It’s okay though – we are all allowed to feel down at times, understanding that nothing is this big beautiful life is permanent.  All we can do is feel and move forward.  Sometimes you need to stand still just a little longer before moving forward, and that’s okay too.  Just always keep in mind that something new is around the corner.  If you keep peeking, soon enough you’ll catch sight of it, and before you know it, those good times arrive.

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So I started this post thinking I was going to complain, but I ended up talking myself in to a better mood.  Sometimes things seem so big and important, but when you take a step back, they don’t look so big and terrible at all.  This happens to me a lot when I explain my concerns to someone.  There’s something about saying it out loud that can make you examine a problem a little more clearly.  Often I look back at things I thought were so terrible and they were a drop in the bucket, no big deal.  It’s hard to have that perspective in the moment.

The bad helps you appreciate the good, right?   The saying in Hawai’i is “No Rain, No Rainbows”.  Simple and to the point.  Sometimes it’s more than that.  Sometimes your problems involve people’s perception of you, and that can be hard to stomach.  I’m still figuring out how to handle that part, stay tuned.

Be well, friends!  Sunshine is just around the corner, if there are clouds above you currently.

Droughts

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Life is sometimes a funny ride, and perspective is everything.  I am having a tough time with balancing work and life, and discovering a lot about myself and how I perceive things along this journey.  I often enjoy the challenge of making it all work, but I get frustrated when it seems to not fit.

Running has taken a bit of a backseat for me lately.  I am trying to figure out how to rebalance life to accommodate it a little better…thankfully I am still working out and feeling motivated, but I just can’t quite get back in the groove of hitting the pavement and running a weekly schedule.  Last year at this time I was training for the Marine Corps Marathon.  It was grueling, but so worth it.  Early this year I signed up for the Wine Glass Marathon in October, thinking I could downgrade to the half marathon at any time.  I have “downgraded” – meaning I waited until after the half was sold out, and now I am #421 on a waiting list to change my distance.  Ugh.

Last year, I started my training and just never thought twice about not doing it.  Every week I completed at least three runs, one being my long run.  Sometimes I ran five times.  I just went out and did it without thinking twice.  Don’t get me wrong, sometimes the runs were horrific, but I did them anyway.   Now I have a hard time motivating myself to get out there.  I am in a running drought.

We all experience droughts of different sorts: the bad ones are times where we aren’t exercising, being intimate with our partners, or seeing doctors on a regular basis.  These droughts hurt us physically and mentally, not to mention emotionally.  There are other droughts that help – laying off the bad foods or booze, stopping chronic behaviors that are negative to other people like abuse or using someone, you get the drift.

My point is, when you’re in the drought, it’s hard to imagine that there’s water elsewhere.  I remember not too long ago having a really happy time in my life and thinking, “I can’t even remember what sad feels like!”.   Unfortunately, I also remember the opposite feeling, as most of us to.  So how do we handle this?  Well, we realize that droughts help us appreciate the rain.  Also, we know that in most cases we have full control over our actions.  I know how to run – so I should just get out there and DO IT.  Be kind to yourself, but also push.  Allow for failure, praise success.  When you’ve been in a drought for long enough, you can’t just stand in the rain, you have to ease yourself in.  Know that there is life outside of this current bubble you live in, and you can get there if you try.

 

 

 

Putting Family First

Prioritizing is a challenging task, especially for us parents who often struggle to find the right balance between family, work, and personal life.  I am constantly reevaluating this balance, and trying to find the right one.  There’s no perfect equation, nothing simple that makes everything even and perfect, and the balance is always changing.

One thing that continues to solidify for me is that family really comes first.  I find myself rebalancing my life to accommodate my son and my family time above all, because nothing in this life is guaranteed.  My son has special needs, and can be exhausting at times, but he needs me.  More importantly – I need him.  His existence has defined me in a way I never expected.  In the dictionary, many words have a few definitions.  Harry is just one of mine, but a very important one.

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I’ve talked before about finding balance in life, and how I’m always working to wear all of my “hats”.  What I’ve also realized is that there is always one that is listed first, the most important.  My little nuclear unit, boy how I love them!  We can do anything as a tiny little army, united as one.  Our wavelengths work together (most of the time).  We balance and complement each other.  My husband and I can hand things off sometimes wordlessly.  There’s nothing better than this well oiled machine.  Sure, sometimes one part isn’t working as well as the others, but that’s the beauty in the system.  When one piece isn’t working properly, the others can pick up the slack!

I didn’t spend time as a young person dreaming of this family I was meant to have.  Some people do, and what a great thing to know what you want so early in life.  For me, I didn’t know what the future held and I was okay with going along and seeing where life took me.  I was open to a husband, a family, and all that goes along with it, but not sure if it was in the cards for me.  It happened more as a happy accident, and I was surprised by how much I wanted it after I had my little family.  Now it’s mine.  I built it from the ground up, and I want to be in it 90% of the time (the rest is me time!), even if it’s tough.  The tough stuff is often the good stuff, the stuff that sticks with you and teaches you something.  When I’m away from my family I feel like I’m missing something, like no one has my back (even though that’s not true).  No matter what’s going on, I need my unit, my buddies, my men!

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Chasing the Inevitable?

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One of the most touchy subjects in the life of someone with muscular dystrophy involves mobility.  People with muscular dystrophy don’t fit a mold.  Each one is unique, with their own set of strengths and weaknesses.  Not all fall under the categories of “walker” or “wheelchair”.

Needs also change over time.  The path of muscular dystrophy most often robs its victims of abilities – sometimes slowly, other times quickly.  What once was easy can change to hard, if not impossible.  These quirks and variations make it difficult to help support mobility, and as a parent, it complicates my job tremendously.

How am I supposed to best set my child up for success?  I spoke to a friend today about these worries, and the questions remain unanswered, as they have for so long.  Most parents ask themselves, “Am I doing it right?”, and I am no different.  Every choice I make for my child effects him, and that’s a heavy task to take on.  I find myself struggling most in the choices that surround my child’s mobility.   Currently, I am doing everything in my power to keep him as independently mobile as possible, but at what cost?  We don’t own a wheelchair, yes, but now I’ve opened my child up to the world of falls, as well as an environment where he cannot keep up with his friends.  How do I satisfy all of these needs at the same time?  There are more questions than answers.

I do know this: no one knows the “right” answers, we just do our best day by day, with goals in mind that we head toward.  My goal is to keep my son out of a wheelchair as long as I can, and I am sticking to that.  It’s our decision as a family, and we must feel secure in the decision, right or wrong.  Are we delaying the inevitable, possibly chasing after it?  Perhaps.  Most likely.  But for now, we live one tiny, slow footstep at a time.  Harry will not, for a long time, be able to tell me what he really wants.  He cannot fully understand the picture, only what he knows.

Tomorrow we visit our physiatrist, who has remained incredibly positive and is one of my favorite people to meet.  He likes Harry light to increase his ease of movement, and I agree.  He’s very good at what he does, and he’s a minimalist.  Tomorrow’s visit may not be a good one, though, because Harry’s gait has changed to where he wants to swing his legs rather than engage his quad, bend at the knee, and lift it.  I’m not happy about it, and I’m sure he won’t be either.  We will move forward, one slow footstep at a time, and do what we need.

Harry is a happy little boy.  He loves to play hide and seek, to march, to take his trucks and place them high up on counters he can now reach, and to splash in puddles.  I am a happy mama, who is just over analyzing the decisions she makes, like most mamas do.  I thank you all for allowing this vent session, as usual.

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Not Much for Talking

I haven’t felt much for talking lately.  No particular reason why, nothing terribly sad or awful, just feeling a bit quiet.  It’s been bubbling since hubby was in the hospital in March.  Life has been crazy busy, in a good way, and I’m trying to logically rearrange everything to accommodate my family and my time with them.  Harry’s schedule is super busy, and we are squeezing in time together every day.  We are also obviously at the beach as often as possible!   So forgive my lack of words, and enjoy some pictures instead.

 

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Harry and his boys on the boardwalk

 

 

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Finding Dory!

 

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The Spring Lake 5 Kids Race

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Silliness at the beach

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More silly – see where he gets it from?!

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Some friends at the Ryan’s Quest 5k!

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Our favorite summer nights – bonfires on the beach

Cleaning Up

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I feel like for the past couple of months I have been in a change phase of life.  There have been many changes for me, and for once I’ve embraced it.  I think as humans we all innately fear change because it takes us out of our comfort zone.  Living with a child with muscular dystrophy makes me, and my family, fear change even more – change can make Harry fearful, and it can also mean disease progression.

My life often feels safe and comfortable, but my needs change over time.  I was talking to someone the other day about taking my therapy dog to the hospital, and they exclaimed, “HOW do you have time for all of this??”.  The honest answer is that I don’t, and I’ve often spread myself very thin to do all of the things I like to do and all of the things I am used to doing.  Don’t get me wrong – I am still doing things I like to do, but those activities are changing.  I’m refocusing and cleaning up life to make sure that the important stuff gets the most time and attention.

What I deem important changes, too.  Obviously I’ve always put my family first, but I really have solidified that lately.  If I could spend 90% of my time with them, I would.  My hubs and Harry are my sun and moon.  They make my world go ’round.  Sure, I need me time, and I make sure to get that time, but time spent together as this nuclear unit is everything.

Often at the gym I hear the phrase: “If it doesn’t challenge you, it doesn’t change you”, and I’m not sure I’ve ever heard truer words.  Change and challenge push you toward new and exciting things; we certainly don’t get there by sitting around and waiting for it.  It certainly doesn’t call for constant challenge and change, either.  We need to create some calm and enjoy the stillness once in a while.  I think the moral of my babbling here is that I am changing, and that’s fine with me.  See you guys on the flip side!

Forge the Warrior

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The past three years after Harry’s diagnosis have been a whirlwind for me.  In some ways, I feel like a different person.  Looking back to the beginning feels like looking in to the dark ages, and I feel like I’ve been molded in to a warrior (see above picture) in the process.   Well, maybe not molded – that gives the impression it was a gentle process.  I have been forged, through bending, breaking, and ultimately set in strong metal. It hasn’t been easy, but my foundation is solid.

The same process has gone on through my assembling Harry’s team.  Over time, I fought to find, edit, and keep certain professionals around Harry to support him in the best way possible.  It’s a learning process, and it’s constantly changing.  Insurance never supports me unless I fight, but good for me (and bad for them) that I love a good fight!

For my BSN capstone project, I knew I wanted to support families in a place that I didn’t and still do not feel supported.  I know there are countless families out there who are not as tenacious as I, or as medically educated.  I set out to gather members of Harry’s team, and people like him, to put in one place for parents to get more information from.  I hooked up with the special education department in Harry’s school and joined one of their parent nights.  We set up an exposition where parents could visit different professionals that might help their child.  I was proud of the event, even though it was lightly attended.20160509_184632

It’s so hard for parents of any child, let alone a special one, to find their way sometimes.   Kids don’t come with a manual, and we often have to claw our way through difficult times figuring our way out as we go.  First children are the guinea pigs – especially if you find yourself having the first child out of your group of friends.  Eventually we figure it out, and we are stronger from the struggle.  It’s hard to look back on at times, but I am certainly proud of the warrior I have become!

The Town

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A good friend moved to Philly and we are so proud of her for taking big steps in her life.  Also, Harry and I are happy to have reasons to go to visit and explore Philly.  Every time we drive in, I say “Harry, we are going to the city – I mean, Philly!”  Harry asks why I correct myself, and I explain that people from New Jersey call New York City “the city”, but Philly doesn’t have a slang term.  Harry has now taken to calling it “the town”, which I love and now will be calling it that.

The other day we took a day trip to visit our friend.  We didn’t have much planned –  a little shopping, some yummy food of course, and then we needed to head back to Jersey for Harry’s aqua therapy.  As we drove in, Harry caught sight of a billboard with Buzz Lightyear on it and began to scream with joy.  I knew we just had to go see the Pixar exhibit at the Franklin Institute!

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Museums are so much fun for me, and I have been so delighted to introduce my son to them.  A lot of the exhibits are over his head, but Harry still enjoys seeing all of the cool stuff.  The Pixar exhibit was interesting for the adults, and Harry loved seeing the characters he loves so much, larger than life!  He also really, really liked pushing all of the buttons.

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Philly is so cool because it’s so historic, and our buddy lives in Old City so there’s so much history to see.  Right by her apartment is the first bank, and all around are cool cobblestone side streets.  Harry thought it was funny to try to lock me behind a gate – he looks a little too serious about it here.

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We debated grabbing a bite or ordering in, but eventually opted to skip aqua (we never skip!) and take a short disco nap before going out for dinner.  Harry had the most amazing 1 hour nap where he went to sleep, and after an hour popped up refreshed and delightful (well, the delightful part was after some food).  Look at this nap, doesn’t it look heavenly?  All in all we had a great time in the town!

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Mother’s Day Fun

Can’t stop, won’t stop!  That seems to be the motto lately.  Also “no rest for the weary” would be appropriate, but I am having a good time too.  A little update: hubby’s eyesight continues to improve, inch by inch (literally).  He is feeling pretty good, and we hope this progress will keep up.

That was really what I wanted for Mother’s Day – a happy, healthy family, and to enjoy them along with a little bit of time for myself.  I firmly believe that having some time and a life outside of your family duties is essential for being a good mom.  Wearing the “mom hat” is one of my favorite ones to wear, but I also need to wear others, and I have many – wife, sister, daughter, friend, and most importantly, the “Gloria” hat.  You can’t lose yourself in the roles that you play for others.  Keeping contact with who you are is essential and makes you better at playing the other roles.  I had a great balance of switching roles on mother’s day, and it made me very, very happy.

Mother’s Day was just perfect!  The boys have been so attentive, helping me finish my semester and get in to the swing of working overnights.  They let me sleep in, which was nice because it was raining and is there any better sleeping weather?  Thankfully the rain helped us opt out of Harry’s softball game and we had a nice relaxing morning full of breakfast and delicious coffee.  I got some great gifts, including some awesome handmade stuff from my little man.20160508_145012

 

After that I went to the gym and had a killer workout, then met the boys and my Dad at the beach for acai bowls.  The sun had come out and it ended up being a spectacular day.  Is there anything better than warm sunshine after a couple of days of cold rain?  I could have sat outside all day.  We chased the waves a little, grabbed some handfuls of sand, and then made our way home. (reluctantly)

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After that we all relaxed and napped, me in the hammock of course.  That was my mother’s day present last year or the year before and it’s one of my favorite things.  Later we finished up with dinner for my Mom and I – everyone came over and enjoyed pulled pork that hubs smoked all day.  It was a really, really good one.  Hope yours was great too!