Thursday, March 7, 2013

A new kind of anniversary

I wrote this for another publication while I was thinking about this past year.  A year ago we were in the ICU and there were far too many times I wasn't sure we'd be bring Emily home with us.  We've learned a lot this past year.

Always Get Up, Always Keep Moving, Be happy and Remember Your Mother is Always There for You
One year ago, almost to the day I am writing this, my then five year old daughter developed a severe chronic illness I never knew existed.  The diagnosis was Systemic Onset Juvenile Idiopathic Arthritis and my daughter went from sick at home with a fever to the ICU in a matter of one month.  It was a surreal experience and after 57 days in the hospital, when my daughter was finally discharged, I felt like the first time mother of a newborn all over again.  I called the doctor for everything and noted every small physical change as if it was potentially deadly.  After almost losing her three times in 57 days the reality that there is no guarantee for a tomorrow was and still is constantly on my mind.
With a chronic illness where the onset is so sudden and severe the fight for survival overtakes everything else.  Finally when survival no longer seems like a fight there is an emotional wound that was left; almost as if we all had a case of post traumatic stress syndrome.  Every breath at night is registered; every fever, cut scrape or bruise is treated with seriousness and serves as a reminder of the illness. 
Almost immediately after she was discharged from the hospital it was apparent to me that my daughter was sad, possibly depressed because of this disease.  The illness and hospitalization left her unable to walk very well, get up from a sitting position or even pull her pants up after using the bathroom.  I realized how serious the emotional impact was when I asked my daughter what she wanted her physical therapy goal to be and she said she just wanted to be able to jump again.  To me it was as if she was asking if she could just be well again. 
I have no idea what the future holds for my daughter, there is no cure for this disease so while I teach her to live with this illness I’ve also decided I need to teach her four important things:
1.       Always get up. No matter how much pain or stiffness she wakes up with in the morning, what joint bothers her that day or how many times she falls down because she isn’t as strong as she once was; she has to always get back up. 
2.       Always keep moving.  She frequently battles stiffness, which only goes away after she gets up and moves around allowing her joints to lubricate themselves.  It’s the same way with life, she has a difficult road ahead, but as long as she keeps moving things will work out.
3.       Be happy.  We all have trials, this is her trial, but if she’s happy it will be a lot easier to endure.  We focus on finding the good in everything; she may have an infusion at the hospital every two weeks but at each one she gets to visit the prize box after the nurse places the IV and she gets to pick a special meal. I want her to love life; I want her to know how to love life in spite of all the pain.
4.       I will always be there for her.  She may marry, she may not, she may have children, and she may not.  She may live to be one hundred and she may not, but through it all I will always be her mom and always be right there with her, rooting for her.  With a disease that is waging an invisible war inside her body she needs to know that I understand and no matter how much pain there is I will always be there for her.
Reading, writing and arithmetic will come with time and help from great teachers, so if I can teach her these four important lessons then I will have done all I could to fight this disease as a mother.  
So my sweet Emily, this is for you. No matter what challenges you face in life; always get up, always keep moving, be happy and remember your mother is always there for you.

1 comment:

  1. This is so sweet Amber! What a good mom you are. Love it!!