Monday, October 28, 2013

A Less than Uplifting Post

Clearly, I struggle to update the blog.  Part of me feels like it's the same thing, different day, so what is there really to share. But, the reality is, our days are anything but consistent. This leg of the journey is not linear.  There are many ups and downs.  There is baseline, a rough patch, a new baseline, and repeat.  And so it will continue until the end.

The end.  Isn't that really what we all want to know? When will this end?  I certainly do.  Not because I want this to end.  No parent wants to lose their child.  But, as Jack's neurologist reminded me when I asked her to please help me get past having to know the why of what is going on with Jack ..... we know the why.  Jack has a progressive neuromuscular disease.  Not a new revelation by any means, but also not something that I've focused much on over the years.  Other than the fact that Jack's disease has never allowed him to walk, talk, eat or breathe on his own, he has never been a chronically sick kid.  For the most part, we just accepted (okay - more like, adapted to) his limitations and moved on with living life the best we could.  In other words, his disease was mostly a non-issue.

Obviously, that is no longer the case.

So where are we at this point in time?  After a very rough evening last week and an after hours call to the hospice team, we've now increased Jack's morphine dose yet again and he's now getting it every four hours around the clock.  No more stretch between the midnight and 8 am dose.  Getting up to give the 4 am dose is brutal.  Mark and I flip a coin to decide who has to get up. Not really. We're actually pretty good about divvying up the job so that we are equally tired. That's only fair, don't you think?

It's important for you to know that when Jack is not in pain, he looks good.  He smiles and he's engaged.  It's not all doom and gloom. However, when breakthrough pain takes over  - it's a challenge to get a handle on it.  It's heartbreaking to see Jack suffer. But, the fact is, Jack isn't going to die from pain, so, in theory, this insanity can go on for a very long time.  Which brings us back to the question of,  when will this end?

I haven't a clue.  No one does.  I think it's safe to say that it's not anytime soon.  It could be months, it could be a year. We will continue to deal with ups and downs and pain management issues.  But,  there will ultimately come  a time in this journey when exceptionally difficult decisions will have to be made. Quality of life and end of life decisions are very personal and very private decisions. But, I'm confident that when Jack has had enough, he will let us know.  As Jack's mom, there will be no happy ending to this journey. But, I unequivocally believe in God and in heaven, and I take great comfort in knowing that when Jack is ready to go - he will be going to a most amazing place.  I believe he knows that too.

In the meantime, we cherish him, we comfort him and we love him.  And, I will do my very best to continue to share him with all of you.



E Fischer said...

The Jack of things is gentle trust
for eternal life we share.
Careening behind the love of us
In parent’s realm and Godly care.

Why sweet? Why sorrow?
blossom is here,
For today and e’er tomorrow.

I cast a glance and if perchance
I feel a twinge,
I know my heart will stay to dance
On love’s well oiled hinge.

Fight with reckless abandon
And throw caution to the wind.
No thought or understanding
to add or diminish,
the love one cannot rescind.

Ann said...

Beautiful Eric. Thank you SO much for this. Thank you for taking the time to do this for me given the challenges of your own journey. All my best.

Mary Anne Perez said...

Dear Ann,
Back when I was a reporter in Colorado, I did stories on a group of parents of special needs kids and learned something that you reminded me of today with this post.

One father wrote a loving story of how many blessings his daughter had brought to the family, and another parent told me her family was better off for having had their son. I now think I understand that this child, these children, give us the chance to love more deeply, more profoundly, than if this child had never come to be.

Thank you, once again, for sharing Jack's journey.

Catherine said...

I am just so sorry that he is in this stage of this disease. What part of this is causing actual pain? Other than the morphine, there is no addressing it? Hugs to you all. Prayers for Jack that he has some good days, that someone can get a handle on this.

Susan said...

Although you may never no for sure what is causing Jack's pain right now (I think the history of kidney stones is certainly suspect) the important thing is to relieve it so he can be comfortable for however long he is here. Muscular dystrophy has many effects to the body so it's hard to know all the ways in which Jack is affected. My father died of pneumonia in his sleep. I think most of his siblings that had MD also did. I know this waiting and wondering must be driving you crazy. I hope you can relax enough to have some special moments with Jack for as long as you can. (((((HUGS)))))