Sunday, February 4, 2018

Parker's in the Hospital...but We Celebrate Life

As I sit here in the hospital watching my courageous son chat it up with the nurses and docs, I am incredibly grateful for his presence in our lives.  There is an odd feeling that comes over me when people come in to see him because the word on the ward is "Parker's Here".  I use to get really sad that staff knew him because that confirmed that he has had some frequent flyer miles at both our local hospital and at the hospital his rheumatologist is at (2 hours away).  But now, I am joyful that that there are people who love him and seek him out just to say hi.  It is really comforting and a beautiful thing to witness him conversing with these amazing medical staff who truly know the value of life.

And I am so proud of the young man he has become.  Last night, in the midst of all that was happening with him, one of his docs shared that she really didn't understand why Parker has so many health issues and that things are not "easy".  And not only does he have multiple overlapping conditions, but he also seems to have crazy drug reactions and side effects.  But it's what she said next that really touched my heart.  She said that she knows that all this is hard but that she really feels that Parker is making a difference and raising awareness about autoimmune diseases.  

Sometimes, really difficult stuff happens and we have moments of fear and wonder how and why the things that happen, happen...but in this moment, it felt like his voice has purpose.  I shared this with Parker, because sometimes I don't think he realizes that although all this is happening to him, his story is reaching and touching others.  

Recently, PhRma contacted him to share that one of the interview/videos that he did with them as part of their #GoBoldly campaign has been getting loads of traffic.  We went to see just how much and we were completely blown away that this video has over 1.2 million views.  Check it out:

He was telling one of the nurses about it today and that we need to get the word out more that children can have some really difficult days living with juvenile arthritis and that for some it can be life threatening.  So even though we are at the hospital, it is moments like these that just make me pause and really appreciate life, my children, our family and friends, and all those amazing medical staff who have chosen to give back to this world.  I will always be grateful for the people who share in our lives.

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