Happy Sunday to all!  We are still enjoying the heck out of Cody's stroller.  And yes, to the many who have asked, this is one of only 2 medical strollers where the child can FACE you!  And this one is FAR superior.  You can find it at this website:  http://www.thomashilfen.de/th/  

It is so interesting, this journey.  And this website is really the documention of 4 years of the 'process' of grieving, living, surviving, and trying to thrive - in the midst of a life-altering diagnosis.  Good, bad, and ugly - it is a runinng commentary on the joys and struggles.  I'm glad for that.  It is the story of our lives.  And there are so many twists and turns.

And one of the biggest take-home lessons I've learned is that it's really my choice which side of the fence I fall on.  So often I am told by people, "I was so mad about getting a traffic ticket the other day.  THEN I remembered what YOU go through!  It gave me perspective."  Or "I was in a panic over my daughter's ear infection - until I remembered what YOU have to deal with on a daily basis."  Or "I am SO tired!  I got no sleep last night!  Oops, sorry Shawna.  You are the last person who I should be saying that to!" 

Yes, it seems I am in the position of being the person people measure their lives by.  Somehow my life makes some people feel guilty for complaining about theirs.  I am always endeared by those comments - because it's just people trying to show me empathy.  And I so appreciate that.  But I always respond, 'Hey - it's all relative.  You may not have a sick child, but you probably have something very stressful or very painfull for you.  And pain is pain, right?' 

But that is definitely one side of the 'fence.'  Acknowledging that this IS insanely stressful, and crazy, and painful.  Feeling despondent, depressed, sad most of the time.  That is definitely an option....and one I take on frequent occasions.  Some days it's totally overwhelming - other days it's just sad - other days it's just depressing.  There is no day that isn't colored in some way by having such a sick child. 

But the more I experience life...the more I realize the 'other' side of the fence.  There are so many others who I can look at and say, "When I feel like complaining, I think of you!"  There's my friend whose daughter has infantile spasms AND leukemia.  There are single moms waiting in the same waiting room I am at Children's - with children as impacted as Cody - who are doing this alone.  There are parents of children like Cody - who have lost their precious little one to this disease.  And beyond that - there are people who would dream of having a fancy medical stroller like ours - but who live in countries where they could never own one.  I live 20 minutes from the country's ONLY specialist in children with mitochondrial disease who have intractable epilepsy!  I know women who struggle with not being able to bear children - and here I am with 2 of them.  There are children with epilepsy all over the world - whose parents would give ANYTHING to have access to the medical expertise we have - and insurance to pay for it. 

It is such a weird game to start 'comparing.'   I have a friend who has a late-stage cancer.  He is near 70.  Now to his family, this is the worst news they've ever received...they've never dealt with death, illness, and have had a relatively easy life thus far.  He, of course, is devastated and my heart breaks for him.  And while I am acutely tuned into his suffering and compassionate without end to staring down the barrell of your own mortality....I can also see things on the 'other side' of the fence.  Oh what joy to be 70 years old, and be able to know I'd had two perfectly healthy children - and all my perfectly healthy grandchildren!  That would be a dream come true!  In fact, if I could swap my life tomorrow (make that today!) in return for Cody being healed?  I wouldn't hesitate.  I would give my life just to take his seizures away - and leave everything else the same!  In a minute I'd say yes to that offer!  It's all perspective, isn't it?  I have a friend who can't have children of her own.  She once said to me, 'oh Shawna....I'd give ANYTHING to have a child just like Cody...because I will never know the thrill of pregnancy and childbirth...and looking into my baby's eyes.  You have all that in Cody."  I have another friend whose child also has mito, but is doing far worse than Cody.  She cannot hold her own head up, can't roll over.  This friend comes to my house and looks at Cody and cries over what her child will never be.  She would give anything for her daughter just to be able to walk as well as Cody does!     

Yet everyone's pain, as I said earlier, is their pain.  And it is all relative.  And Jesus died for all of it.  At times when I receive such a huge blessing as this Medical Stroller - I do tell myself to just shut up and stop complaining.  There are many who would love to be in my shoes. 

Just my thoughts for the day,

Shawna