Scrapping the tough stuff

Some things are harder to scrap than others but sometimes they just jump out of your heart onto the page. I was filing away some beach themed paper (digital paper) and it came to me in a flash. My dil had written a long post on her daughter's CaringBridge site about all the hard things you never think of when a child is critically sick, and sick for over a year so far.

I believe this page was the like the original question Sharlah (and I) had been mulling over this past year.

Same as it Ever Was

I have seiously loved the Talking Heads song"Once in a Lifetime" which I never heard till the late 80s, having been out of the US when it first came out. For me it means that no matter what is going on on the surface (of my life) there is water underground. There is a flow to life that exists and manages the process but it is invisible to me.

Now that our friend Gloria has finished this earthly segment, we are still mentally and emotionally involved in the long term prospects for our granddaughter Bekah. My dh has finally said that he feels she is likely to succumb to an infection at some point. I know that was really really hard for him to come to grips with. With her continuing ups and downs, it made me realize we have never known anyone, especially a child, who has a chronic, life threatening illness. (I am excluding active addiction here.) We don't know what it means to go thru this day after day, month after month...year after year?

Looking at Bekah trying to have a normal life and yet have her temperature taken every hour boggles my mind. When I said to my dh that I thought that might be excessive, he finally told me what he had been thinking. I've watched so many of my friends suffer as they tried to maintain hope for Gloria that it leaves me in a dilemma. Do I continue to have hope for Bekah? and encourage my dh to? only to make a possible sudden decline seem all the worse? Or expect the worst and hope for the best?

Each time I think I have come to grips with the concept of letting go, I find there is another deeper level of acceptance to master. It reminds me of the wonderful discussions we had in sophomore hs Religion class with Mother Helen. How do you balance an omniscient God with human free will? I know I have had those times of complete understanding, but right now is not one of them. At least I do have a history of 'getting it' and that gives me strength thru these murky days.


So, my dh dives more deeply into reading and bike riding, and I find solace in the digital. Maybe that's all I really need today. That and a phone call from a friend that helps me understand I truly do believe what I say to her. There is a plan and it's ok if I don't know the details right now. It really is ok.

Still in Limbo

Cold Roads to Nowhere

Well, days go by and nothing has been resolved with our friend who is dying but hasn't yet, nor with our granddaughter who keeps getting infections and fevers but not well. It's really hard to keep mentally and emotionally in the moment and not wish, want, Expect! things to be resolved.

It seems so cold to wish a dying person was finished with this transition, but it's hard for friends to not be able to visit any more while family keeps this vigil that 'they' said would be a couple of days. It's over a week, and people have gone back to their out of state homes, and yet... And yet, we know she'll never come back as she was, that her death is what she chose in her Advance Directive, but when?

Our granddaughter seems to be having a brief day of being ...ok is not the word...but at least home. Then after about 24hrs, she gets a fever or an infection and it may be back to the hospital for another week or ten days. The updates go on, but there is a pattern of briefly out of the hospital but for what purpose it seems? As soon as she comes home, her immune system gets hit by something/anything. We are grandparents almost the whole country away so if we are frustrated, what is it like for her parents? What kind of plans can they make for their lives and how can they parent a little brother when this child needs so much time and attention? I know she isn't the only one in this kind of situation but she is the only one in our family.

I could pray for patience. I could...and yet, the ego says "I want it resolved now." I can deal with the known, it's the unknown, and waiting on a timetable that isn't mine that's the killer. I guess I better pray. That decision is mine, so I'll make it.

It never rains but...

It seems like it's almost pouring.

1.When I came home from the cruise I learned the details about a 40sumthin' friend who had a heart transplant.Gloria was only on the list for two weeks (!!!) when she had the transplant May 22nd. She has yet to wake up which is not a good thing at all. It's possible her husband may have to make one of those terribly difficult decisions. I visit and talk to her but it's hard to know if she is still 'there'. What must it be like if she is still in that silent immobile body?!!?

2.We found out about a week or so ago, that one of our granddaughters has aplastic anemia. She is getting frequent blood transfusions while waiting to see if her little brother can be a bone marrow donor. Such little ones with such serious, life threatening issues. Bekah and Michael are out in Arizona but their mom has put a journal up on the web for all to follow the daily ups and downs. I shake my head in wonder at the idea of trying to keep a home sterile to avoid infections when Bekah is home.

3.Another friend is very very sick and may be on the liver transplant list. She too has a compromised immune system and is prone to getting sick at the drop of a hat.

4.And what is that you saw at the start of this post? Half a tooth. I broke a tooth when I came home from Charlottesville today. It does feel as tho a lot of things are falling apart right now. I know it all will pass but some of these situations seem mighty heavy right now. The tooth just seemed to be a symbol of not being able to get a handle on so many of the other things.

Payers and healing thoughts are so very welcome.