We choose HOPE

Hello to those of you that read this post.  Its been seven months since I last updated our family blog.  These months have been a blur mostly... so much has happened in such a short period of time.  And until now... I simply haven't had any desire to communicate with the outside world. 

Three weeks after my last blog post, my father was diagnosed with an inoperable brain tumor.  He passed away October 14th.  He was (and still is) a huge part of our lives.  Mason's middle name is "Robert" - named after my father who adored him and did everything he could to help us and encourage us during the initial months of Mason's diagnosis.  They had a special bond - one I really can't describe.  My dad saw more potential in Mason than I could during the hardest days that started this year of 2012.  And my dad also wept for me during the hard moments when I was sleep deprived and too stressed to cry.  I remember the night before Mason's feeding tube surgery - talking to my dad on the phone when I realized that he was crying because he was so concerned about the challenges Mason had ahead of him.  I am so blessed to have had such a compassionate, thoughtful, faith filled man as my father.   My dad had a motto that he lived by and even the final weeks of life, when someone would ask him how he was doing his response was always the same:  "Living the Dream".  His family was his dream... and so we must press on.

THANK GOD... Henry & Mason are doing quite well...

• After 13 months of speech therapy - Mason started talking in early July.  All along the words were probably swirling around in his head but he is finally able to form audible words with his mouth.  He has a long way to go but we are so excited about the progress he has made already.  Henry and Mason have also become more bonded now that Mason is able to communicate.

• Thanks to Hammond Drysuits, located in the UK, we were able to have a custom Hickman Drysuit made for Mason.  He looks like Aquaman in the suit and it takes two adults to actually get him into it but he was able to enjoy the pool on our first family vacation this summer.   
 

• Henry started Kindergarten in the fall and loves school!  We are so excited to hear all about his day when we pick him up.  He seems more grown up all of the time and he continues to inspire us everyday with his kindness towards his brother. 

Our Newest Challenges

Just when we think we have things figured out, life throws us a few more curve balls...

• Mason is currently in his fifth body cast.  The casting is definitely correcting the curvature in his spine however the doctors have warned us that (because of the disease) his spine will worsen the moment we stop treating it.  In February, he will transition from body casting to a 23 hour hard brace.  The brace will give him a "break" from casting and will allow him to take a bath each day during the one hour he has the brace off.

• We also experienced a lot of trips to the emergency room during December.  Two different sets of stitches needed on his head due to falls and one dislodged mic-key button - all in three weeks!  Needless to say, he is back in his helmet full time now:)  This child is seriously aging me... it will be a miracle if I am not completely grey haired by 40.  

• While we are so glad that Mason is finally using words, we didn't realize how hard it would be to respond to things like "I go home" - when we are at the hospital or "cast off" when he is tired at the end of each day.  We didn't plan on fighting with him at night when its time to wear his oxygen tube and his feeding tube.  So now we must navigate these very valid frustrations.

• Aaron has been the most amazing, supportive husband I could ask for.  He continues to show me more grace than I deserve most days and he is an amazing father too.  God has answered a long standing prayer for Aaron this year - he was recently offered a Brand Manager position with Kimberly Clark.  After a long career with MillerCoors, he has decided to accept this exciting new opportunity and will be starting his new role in 2013.  This also means that we will be moving AGAIN but we will be moving home near family so we are certain that the moving insanity will eventually be worth it.  

As for me, 2012 has absolutely been the hardest year of my life so far.  God is working on my hard places, chiseling me, making all things new...grief is the most indescribable pain I have ever experienced.  It's like this monkey on my back... always there.  I started the year of 2012 grieving the life I had imagined for my family and now ending the year grieving the loss of my dad.  Ironically, the latter has helped me realize how truly blessed I am for this life God has given me.  This year God has really been teaching me that I am not in control - he is writing the story.  I never pictured my life this way... but I also don't want to take for granted how amazing this life story is. 

A wise lady a church recently taught me that HOPE is the "confident expectation that good will come".  So we are focusing on HOPE these days... and very much looking forward to 2013 and all that God has in store for our family.  Best wishes to all of you for a HOPE filled New Year. 

Thank you for reading this blog and caring so deeply about our family!