Saturday, February 12, 2011

All You Need Is Love



Love, Love, Love.
Love, Love, Love.

Love, Love, Love.



There's nothing you can do that can't be done.

Nothing you can sing that can't be sung.

Nothing you can say but you can learn how to play the game.

It's easy.



Nothing you can make that can't be made.

No one you can save that can't be saved.

Nothing you can do but you can learn how to be you in time.

It's easy.



All you need is love.

All you need is love.

All you need is love, love.

Love is all you need.

In 1975 Valentines Day was simple for this six-year-old boy.  My job was straightforward.  With a little construction paper, a little glue, a few crayons, and a little love, the perfect Valentines card was created.  Like most boys my age, passing that Valentine to the girl at the next desk just didn't seem right.  First of all, girls were still alien creatures at that time and secondly, it had to be saved for that special someone.  That special someone who had waited all day for me to get home.  That special someone who always had warm chocolate chip cookies in the yellow Tupperware waiting for me.  That special someone who seemed to solve all the problems a six year old could offer up.  That special someone named Mom.

I grew up in a large family of six kids with one lucky sister at the top of the heap, four brothers, and then little old me.  Those of you who grew up in big families know that being the youngest had its privileges and its drawbacks.  You were always Mom's baby, but were also the smallest one during wrestling battles so it was either team up or watch out.  Looking back, I find it amazing that even after everyone else was fed, clothes washed, fevers mended to, and homework done, Mom still had time for the little guy.  Being a parent myself now, I struggle sometimes to find that correct balance for three kids let alone six.  Fortunately, somewhere along the line my Mom taught me that when it comes to little ones, despite all the little pains and suffering of life sometimes, all you need is love.

The other day I accepted a Facebook friend request from a grandmother who's granddaughter has Pompe.  Being attached to the Pompe community through Facebook has brought many unexpected heroes into our lives.  Every so often I get a friend request from someone with Adult Onset Pompe who has a happy profile photo, appears to be responding well to medicine, and has a good outlook on the future.  These friend requests are easy to accept as they are another example that down the road my girls will continue to do well.  And then there are the requests from those with Infantile Pompe.

For anyone who may not remember, Infantile Pompe is a bit different from Adult or Late Onset Pompe.  The symptoms usually appear within the first few months of life, an enlarged heart is usually involved, significant muscle weakness is seen, and difficulty breathing is pronounced.  Depending on the uniqueness of an Adult Onset patient, these things can also be seen (usually minus the heart issue), but are gradual, appearing over years, not within the first few months of life.  On top of all that, as the patient is very young, they are not able to tell you where they ache, if they are having trouble breathing, or most importantly how the feel.  I've found this last one so important for our girls as chronic diseases come with many emotions and many questions.

Unlike the profile photos mentioned above, at first glance sometimes all you notice is a young child connected to an IV line.  However, as you begin to follow the Mom's (or Grandma's) narrative, read the supportive comments from their family and friends, and visit the posted photos, you become humbled.  Just like in our house, while their child is fighting their physical battle against Pompe, moms are fighting the physical, financial, and emotional battle.  What's different for those with Infantle Pompe is the severity of the condition and the age of the patient.  But, what's the same is a mom's love, which despite an incredibly unfair situation somehow shines through in every post about their angel at home celebrating a birthday, at the hospital battling pneumonia, or at an IV center receiving Myozyme.

For all you Moms and Grandmas out there fighting on behalf of your little ones be them 6 months or 16 years, I want to thank you for your inspiration.  I also want to thank you for reminding me of a lesson I learned many years ago that despite all the marketing around Valentines Day, all it takes for a child is a little construction paper, a little glue, a few crayons, and a little love, to warm a mother's heart. Please keep those Facebook posts coming and remember one thing for me.  While life will always have its good days and bad days, strong days and weak days, happy days and sad days, be sure to hug that baby and show the world that in a child's eyes...

All you need is love.
All you need is love.

All you need is love, love.

Love is all you need.

Happy Valentines Day!
Matt

Credit to: The Beatles, "All You Need Is Love"