Thoughts

Since this is pretty much a journal for our family I wanted to put some thoughts down regarding an amazing opportunity I had today of attending a 'Celebration of Life' with Justin for one of his patients.  I hadn't planned on attending until Justin asked me to earlier this week.  I am SO GLAD that I did.  This little girl and her family are simply AMAZING.  She was diagnosed with mitochondrial disease at a young age after being in and out of the hospital since birth.  This disease simply put is the inability for her to eat and process food.  She has had a feeding tube and various 'lines' in and out of her body, but these things didn't stop her from living.  With the diagnosis of this disease came the word 'terminal' - the fact that she wouldn't live very long.  She was 5 year 10 months and 33 days old when she passed away.  And boy did she LIVE!  Her family made sure of that - several trips to the beach, 2 trips to Disneyworld (one of which was decided upon 10 days prior to going), lots of time spent with family, doing her favorite 'messy' crafts, exploring outside, or simply laying on the floor so she could play with her siblings.  Her mom actually spoke at the celebration - although she knew it would be difficult she said she thought it would be 'inappropriate' for her not to speak at an event celebrating her daughter.  Her mom is my new IDOL!  Talk about strength, determination, loyalty and faith!!!  After debating on a topic she chose to talk about what it was like to be this little girl's mom.  One of my favorite words she used to describe herself was as or rather THE advocate for her daughter.  She became and expert on this disease, she chose to be the BEST at taking care of her daughter, whether it was changing her dressing, doing her lines, and many other medical terms I have no idea what mean!  She was CONSTANTLY emailing her doctor, talking with the specialists, reading new articles and such.  My favorite quote of hers was "not doing something because it was too hard was NEVER an option."  I LOVE that!  Too many times I think, or rather choose NOT to do something or go somewhere with the kids because I can only imagine how hard it will be.  Well, NO more.  Life is meant to be lived.  I hope that I NEVER have to plan the 'celebration of life' for my children, but I also don't want to feel like we haven't truly LIVED while here in this life.
I am so grateful for the Plan of Salvation and the knowledge I have that families are forever.  I LOVE being a mom - exhausted, frustrated, stressed, loved, and HAPPY!  Throughout the celebration the music playing in the background was a beautiful arrangement of primary hymns.  The first time Justin met them they had the same music playing.  The mom of another patient had given this particular arrangement to them to be a 'constant' source of peace for the little girl.  They could play it in the car, at their home, but more importantly at the hospital so that she would feel like she was in a safe place.  As a gift when Justin left his rotation on her floor he gave the family The Children's Hymn Book.  The celebration event was held at their church, not sure which denomination besides Christian.  It was very powerful and spiritual. I am so glad that I went and was able to get a glimpse into this little girl's life with her family.  CHILDREN are simply amazing!