I’ve been putting off how to even write this
post. At the beginning of my first post, I said I wanted to do my best, to put a positive spin on the Myotonic Muscular Dystrophy – Our Family’s Journey, blog.
So today I decided this would be the day to continue with the posts. I have sad news, yet I am feeling Blessed. On March 1, 2014, my beloved husband (Bob), whom, I described as David,
died, following a courageous battle with complications of Myotonic Muscular Dystrophy.
His epiglottis (the little muscle that
keeps food from going into your lungs but down to your stomach) stopped
working. He was required to have a feeding tube inserted in August of 2013.
Following that first one, he was hospitalized two more times, for aspiration pneumonia. Then, this year, he developed pancreatitis. This was
probably inherited from his Mother, who survived the surgery quite nicely. This
would normally, for everyone else, be a routine stone and gallbladder removal.
He
recovered from the initial stone removal in stint insertion, but because of the need to remain off
food to resolve the inflammation, was too weakened for even limited activity. Because of this, his strength waned.
He was started once again, on the tube feedings and was even up to his maximum daily requirements. Then, one evening he vomited and aspirated. He stopped breathing and despite the hospital’s valiant effort to save him he did not survive the code blue.
He was started once again, on the tube feedings and was even up to his maximum daily requirements. Then, one evening he vomited and aspirated. He stopped breathing and despite the hospital’s valiant effort to save him he did not survive the code blue.
I know this sounds very depressing, but
please, don’t stop reading.
Once we, as his family, came to accept
his death, we were able to reflect on the time we had with him. Bob was very
much, a loving Husband, a devoted Father, a fun loving Grandfather, a cherished Brother, a loved Brother-in-law, an Uncle, a Cousin and Friend
to so many. This was made clear to us, at
his wake, funeral and memorial service.
During these days, we shared how we were Blessed to
have him with us, how smart, funny, kind and gentle he was to so many during his
life with us. Although we will miss him forever, it will be those qualities of
his, that will live on in his children, grandchildren and someday great
grandchildren.
He fought a hard fight, to remain with
us. But there is not one among us, who would wish him back in the condition he
was in, at his time of death.
We will always remember the strong, happy,
teasing and fun loving man he was. We will continue to do our best to honor his
memory, by continuing to live as he would have wanted us to do. All of the
qualities he possessed will remain with his family, for as long as we each live,
until the end of time.
May he now reside in grace and
peaceful rest in the arms of Our Lord.
God Bless you Bob, We will love you and miss you forever.
Now, to find a new normal....
