Sometimes Nothing is Easy

There are cobblestones in Old Town, ruts and bumps between every curb, 6 different ways upstairs but only one that is handicapped accessible... A bone might be broken but a trip to the urgent care for someone who has spent the last six months in and out of the hospital is not an easy trip to take. We've gone to the beach a thousand times, but have never spent weeks trying to get a beach wheelchair rental or a van that might carry a beach wheelchair. There is a path along the waterfront but only half of it is paved... we want to go to a memorial for a friend this weekend but might not be able to get there because there is no place to park or walk safely with a wheelchair. A shower is an arduous process that takes more time and strategy than a game of chess some days.

I'm tired and sad because this is exhausting and change is at every corner... change that none of us asked for and none of us could ever have predicted. The hardest part of it all is watching Mom with tears in her eyes after it takes her minutes instead of seconds to cross a parking lot or seeing her defeated look at a bowl of soup she cannot carry from the kitchen to the table because she needs both hands on her walker.

One of the most disillusioning of things is the voice in the back of my head that constantly reminds me how much I've/we've taken for granted... how impossible it is to know how impossible things can be within a matter of hours or days. It is like briefly catching glimpses of it when you watch a sad movie or see someone shuffle into restaurant, visit a sick friend in the hospital... but seeing and doing it every day hurts like hell and I am humbled by what I did not know before this. Of course, no one can go back, no one can know until they've "been there", but it's almost painful for me sometimes to think about how oblivious I have been to just how good we've had it.

Mama Marian is tired today. I messed up her medicine last night and gave her the morning doses instead of the evening ones. It was after a three and a half hour trip to the Urgent Care facility, where I made her go to get x-rays, only to learn that there was nothing broken, nothing fractured... just a badly sprained ankle and knee. It was during the bath I tried to give her to relax last night afterward, only to find that I would end up terrifying her more trying to help her out of the tub later. Nothing is easy sometimes. I want things to be magical and times to be special. I want to have the best of memories and give Mom every smile, every laugh, every hug that I can... so I took her on a walk by the water today only to make her fall out of her wheelchair onto the pavement. I can't make any of this go away and sometimes it feels like I can't even make it any better or easier. I want to so much.

I suppose this is one of those times that is only made tolerable by knowing that life is not supposed to be easy. As M. Scott Peck said,

"Life is difficult. This is the great truth, one of the greatest truths—it is a great truth because once we see this truth, we transcend it.”

I know that this is why life is so precious; it would not be if it came easily and quickly and if it lasted forever. So I will try to celebrate the beauty of what is and what has been and try not to get held down by what is lost. It's just a bit harder some days than others.

Memorial Day Weekend

Well, it is early on Tuesday morning. I heard Dad leave this morning around 5am and got up to check on Mama Marian still asleep in the guest room shortly after. We had a great Memorial Day weekend together, including an off-road wheelchair trip to the dog park and a brief stint at the Falls Church Memorial Day Parade/Festival (followed by a long recovery nap!)

On Saturday night we hit up our favorite spot in Vienna for dinner with Mama Marian's friend from high school, Sue Ellen, and her husband Walter. It was hilarious to get the other end of some high school/college summer/newlywed stories and to hear about the "forgotten" drive to Asia as well! :) By the way, Ellen, we have been inhaling your cranberry scones; they are AWESOME!

So, I get Mama Marian for the whole week while Pops returns to CT for work! We will be driving back on Friday sometime and will be back in time for Tracy Sigman's memorial service this Saturday.

Mom is doing well overall, but continues to have daily falls with her walker. Jody and I think she may have a break in her right foot that is making things harder. She fell on Tuesday at home and is pretty bruised up all along her right side. Her foot has been really swollen this weekend and I noticed last night how black and blue it is on the inside. So, when she wakes up today we will make our way to Fair Oaks Hospital for some x-rays. Mom is in agreement as she has been feeling a lot of pain in that leg and foot and is "so sick of hurting", as she has said with each fall.

She also continues to have some very general confusion most of the time... like a delay in processing or word finding. It is hard to describe and I know that it is frustrating her quite a bit. However, it seems to be okay for the most part. I think the most frustrating piece of this is our never-ending quest of "why?" Some things just don't make sense because they have no clear-cut cause and effect. We don't know what is happening as a result of the tumor, effects from the surgery, lack of rehabilitation/atrophy, side effects of medications, seizures, or just plain exhaustion. And, sometimes I guess it's okay not to know why but you don't want it to be the time when you could have, would have, should have taken the steps to get it "figured out". It's hard to know when that time is versus any other time and that, in itself, is stressful.

I do know that Mama Marian really cannot stay at home by herself at all for right now, which even she has admitted to recently. The falls are scary and painful and are becoming too frequent. Lifeline may eventually be a great "peace of mind" tool but having someone there at all times is really going to essential for the time being. This is not an easy thing to do for any of us. I totally get Mom's need for alone-time and some sense of independence. In fact, I think we may have all been "getting it" for longer than we should have been. Again, it's hard to know when... There is some relief in knowing that this continues to be a journey of huge ups and downs and that harder things may subside as quickly as other things have. What goes up must go down and what goes down does come back up when we least expect it.

Friday Night at Wolf Trap for Garrison Keillor

Mama Marian made the very long journey from Boston to Virginia this week. She had an appointment and infusion on Thursday after spending Wednesday night at the Hope Lodge. Dr. Drappatz feels that Mom's strength is excellent (however, Dad continues to remind her that he ALSO feels her coordination could be much better with more PT). She does not have another MRI until July as her past two have shown so much improvement.

So, Dad and Mama Marian got on the road early Thursday afternoon to come see their favorite daughter. They spent the night in New Jersey and left the next morning for Virginia. Unfortunately, the Subaru's A/C died out somewhere along the line on day 2 of the drive and they suffered the remainder of the journey in the heat.

We took full advantage of Mom's handicapped access and got front and center parking at Wolf Trap on Friday night, along with a very quick in and out of the parking lot. I packed what food I remembered from what Mom calls our "first date with Jody" and we had a very nice dinner on the lawn while the sun set. It was another perfect night under the stars for "A Prairie Home Companion" and we not only enjoyed Garrison Keillor but also relished in the entertainment on the lawn chair next to us... a drunken old lady downing glasses of wine and cheering like it was a Metallica concert. I'm really not quite sure which show was better!