Friday, April 22, 2016

The Evident Decline.

Tonight has been the first night that I haven't felt completely encompassed in grief. I know it will come and go but we are keeping ourselves busy which is helping. The funeral is over and people are dispersing but I am very lucky as I said last night to have so many people still checking on us.

When our family arrived home tonight I again came to the realization of how much our lives were dedicated to Jude. Literally everything we did worked around his schedule, his medications, and his needs. I am so glad we did too. I can also clearly see how much Emily lost and gained during these last seven years. It's very odd for us to not be on a schedule and it's almost disturbing.

When Jude was initially diagnosed 12/5/2008 (I will never forget the day) I remember feeling grief. I mourned the baby I thought I was going to have but there is nothing like losing the actual baby you had. I remember comparing Jude's situation to other special needs children. I hate to admit that but I did it and I remember thinking his diagnosis wasn't that bad. Jude could smile, eat, babble, hold his head up, roll over etc. The doctors thought the very best.  However as the years passed all that went away........well everything except his sweet smile. Now that I am standing back looking in I can see just how very sick Jude was from 2015-2016. I think we all got so used to his situation that we couldn't see past the medications and his precious smile. Now I can flip through pictures and video's from infancy through current and see the progression. I really blame the surgery in 2013 we subjected Jude to installing the pain pump but I know we did what we thought was best.  I remember telling someone this was a rapid decline and although Jude passed quickly this was actually not a "rapid" decline. Jude's oxygen levels had started to drop, his congestion had increased, his heart rate had increased, and his pain was evident. I remember getting a sinking feeling one morning before I left for work that Jude was fighting something extremely serious this time, but he still smiled when I kissed his sweet hair and I dismissed the thought. The pictures I took of Jude showed him growing ever more pale and I can see him growing more tired. I am eternally grateful that something divine intervened and let us know that putting in a trach and breathing tube would only prolong Jude's suffering. Although there are those that can benefit for a breathing tube Jude's pulmonologist made very clear that Jude would NOT be that type of candidate. I am happy he was so frank with us. He made Jude's last few months as comfortable as possible.

I know I will continue to miss Jude but my head is beginning to clear some. I can look at situations more realistically and realize just how hard this baby struggled and how blessed we were to have him. I also see new flowers being dropped off at the cemetery and I thank those that stop by to visit him.

1 comment:

lilbets said...

Thinking of you. Jude was so lucky to have you all as his family xx