Do you see the light at the end of the tunnel?

Today is National Organization Rare Disease Day!  Honestly, I wish Emily didnt fall into the category of "rare disease".  Sometimes I think my life ~ and hers ~ would be so much easier.  I also find it ironic that its NORD day and five years ago Emily began treatment for her HLH.  Not that its a day to "celebrate" but what a day to bring awareness.


So many other "common" diseases you see foundations, walks, events in raising money to support and to "find a cure".  But have you ever thought about the diseases that so many Americans do suffer from that are rare.  Some diseases where its terminal and some where its so rare that the doctor that is in charge of treating your child ~ has only seen a couple cases and needs to reach out to specialists at other hospitals...even in Canada!  This was the case for Emily when she was diagnosed.  We also have to remember that with any "sick" person, yes the person is the one that is suffering from the disease and has to take all the medication but it also affects the entire family.  Before Emily got sick we just were living day to day as a "normal" family.  We still live as a normal family its just our normal now is different then someone else.


Its hard to see the light at the end of the tunnel.  When Emily was diagnosed and put on all the medications and she did a few different chemos and when she got on her 4th chemo, her doctor said in 18 months she will be coming off it...she will be "cured".  We had our light at the end of the tunnel.  It was awesome the closer the 18 month mark came - knowing we (she) was closer to being finished with her medication and we could go on to the "normal" life we lived before HLH.  The Lord had/has other plans and that is when, a year later, she was being treated for it again but it was showing itself in different forms.  We now live with no light at the end of the tunnel.  We now live with knowing this is her life.  The only light that i can see - is the light we have in knowing we have Jesus in our hearts and when He calls us home...we will have finally reached the light at the end of the tunnel.  There, Emily will be healed for good.  


Even though today is NORD day for rare diseases....it also makes me think of all the ones suffering from diseases that can be treated or are seeking treatment from something.  It makes me think of the women close to me that have suffered from breast cancer.  Even though breast cancer (or cancer in general) isn't rare, I am sure they looked for their light at the end of the tunnel.  People with heart disease ~ again...looking for their tunnel.  I do hope that when you are deciding which light to follow, what tunnel you opt to go in ~ make sure you go in the one where Jesus will lead you.  Where He will follow you, carry you when you cant walk anymore, hold you when you need to cry and need comfort.  He is the light at the end of the tunnel. 


I heard this song today and thought it was a perfect song for the blog today.