Mr. PilgrimageGal here, a.k.a., Clive, Jeffrey, Mr. Tall Guy, Big D., and various other names.
I’m the guest blogger today. On Valentine's Day Kathryn wrote a love letter post to me. She asked that I write a blog post, to give the “other side” of the story. I'm not ready to bare my soul on the internet like she did, but below is my initial attempt to crack the door slightly ajar and tell my side of the story.
You must accept responsibility for your actions, but not the credit for your achievements.
I encouraged Kathryn to start this blog and I’ve seen the positive results as she has expanded her reach, her interactions and felt the support and love of other chronic disease sufferers located across the globe. I’ve been a little embarrassed by some of her posts, since I feel she has piled on some undeserved praise and exaggerated my good acts.
I just do what I hope, any normal father and spouse would do…
I’m always a little surprised when people praise me for taking care of my family. My own father, a man who worked full time, helped raise three kids, while he went to night school to get his Bachelor’s degree, was the Boy Scout leader, fixed the cars on the weekend and never seemed to tire of helping his kids with homework or taking care of his family, on a recent visit said, “Jeff, I don’t know how you do it…” Really Poppie? Perhaps you just forgot all the things you did. The example you set, the role model you are...
Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.
Every morning, each of us has a choice. Pull the covers over our heads and hide, or start our day and do the best we can. When the most important job you will ever have is, “taking care of your family”, really the choice is already made. You pull on your big boy pants and you do what you have to do.
23+ years ago a socially awkward introvert, met a young extroverted bartender and we started a journey together.
At one point, when Kathryn was having a difficult time deciding what to do with her life as she was stuck in our little apartment, I said, “Honey, you are like a black lab, you need to run free…” Most husbands would get clocked over the head for comparing their wives to a dog, but she actually thought the comparison was apt, and we’ve used it on and off over the years.
Later, a close friend of hers, came up with a new nickname for me, she called me “Grandma”, since I always seemed hesitant to hit the road, go to the hot nightclubs or get out on other excursions.
So, in a nutshell, that’s what we expected our lives to become, the black lab pulling Grandma along in new and interesting directions. Two opposites, working semi-perfectly together, on a loving journey through life.
We must let go of the life we have planned, so as to accept the one that is waiting for us.
Of course, things changed, as all things do. There were hints of imperfect health along the way, stomach issues, gastroparesis, gallbladder removed, unexplained nausea, tiredness and good days and not so good days, without much explanation or pattern.
We had a good life, brought two beautiful bundles of joy into the world. There were post birth complications, pulmonary embolisms, bells palsy and then the long road of specialists and doctor visits and symptoms that slowly got worse and worse as the years went on…
Our life headed down an unexpected path. What to do?
In short, regroup. The body may be imperfect, but the mind is strong, the love still burns, you adjust and find ways to stay connected. Long walks at sunset holding hands, becomes holding hands on the sofa. Nights out on the town, become Champagne on Tuesday on the screen porch. All parents make adjustments after kids arrive, when sitters are rare and energy is hard to find, ours was just a tad more complicated, but we regrouped and adjusted.
You do the best you can, day by day, and relish the joys, big and small that come your way. One of my favorite posts is when Kathryn talked about the “exquisite moments.” How you need to keep your eyes open, recognize them as they come and file them away forever.
The exquisite moments these days often involve the two amazing kids that are growing up way too quickly in our house. Hearing them giggling together when they don’t know we are listening, taking them for a hike, laughing together as a family watching a silly show, dinner together... If the bank gets too full of kid moments, then it's time to call Grandma-ma to steal the kids for a night, so Kathryn and I can get a few more intimate moments filed away.
We've got this gift of love, but love is like a precious plant. You can't just accept it and leave it in the cupboard or just think it's going to get on by itself. You've got to keep watering it. You've got to really look after it and nurture it.
Love is the thread that binds us together and keeps us going. Love for our spouse, love for the kids, an amazing amount of love for this family “unit” that is unlike any other.
Nurturing the love of marriage is easy at the beginning. Love notes, flowers, weekends away. It gets harder as the years pass. Work gets more stressful, kids suck up your time and energy, but passionate love turns into something deeper, more intimate. After the first several years, Kathryn and I stopped worrying about Valentine’s Day or making an overly big deal about birthday’s or other “big event” days. We realized they were just days on a calendar, often promoted by card companies and restaurants. If the only time you bother to nurture your relationship is when a card company tells you to, then trouble is on the horizon.
We all know the type (usually a man) who is really good at the big events. Flowers and fancy restaurant for the Anniversary, working the room at the first communion, making a big deal for the big day, but the other 360+ days of the year, he isn’t around or helping much.
I’ve always thought that it is much more important to be present each and every day. Make the cup of tea in the evening, help cook the dinner and do the dishes, put the kids to bed, do some laundry. Showing love a hundred tiny ways each and every day, instead of one huge act, a couple times a year.
As we both age, the black lab doesn't run as fast or far, but the heart and mind is strong, dazzling and she is still filled with surprises that continue to catch me off guard, make me laugh, curls my toes and makes me want to marry her all over again.
It's not denial. I'm just selective about the reality I accept.
Kathryn loves to tell the story about how after Ian was born and the bells palsy was starting to spread, paralyzing half her face, I told her, “don’t worry, you’re just a little tired and hungry, let me make you some oatmeal…” Later that afternoon, we were back at Holy Cross Hospital for a multi-night sleep over.
Together we usually work things out in the right way. Things are never quite as bad as she thinks, but perhaps never quite as good as I think. Together we usually meet in the middle and come to the right decision.
Another way, our two imperfect halves meet together to make a near perfect whole.
The more I expect, the more unhappy I am going to be. The more I accept, the more serene I am.
Michael J. Fox
Together, Kathryn and I have come to the realization that we can’t expect a miracle cure, a complete recovery or even a remission… But, we accept that fact. We can work around an imperfect body and make an amazing wonderful life for us and our kids.
For a lot of years, when I tucked the kids into bed, I said a quick prayer after the, “now I lie me down to sleep” part, I said, “...and God bless Mom, Dad, Ian and Norah and keep us healthy, safe and strong.”
If we can accept that He will keep us healthy enough, and safe enough and strong enough, it may not be what we expect, but it truly is usually more than “enough”.
I drive Norah crazy, when she is in a whining mode, I start singing, “You can’t always get what you want. But, if you try some time, you just might find, you get, you get what you neeeeeed.”
No one has said it better.
In three words I can sum up everything I've learned about life: it goes on.
Tomorrow will come. Maybe worse, maybe the same, maybe better, but come it will, with new chances, new opportunities, hopefully a new exquisite moment to file away.
Kathryn wanted me to write this post as a guide to the spouse of a chronic disease sufferer. I've probably failed on that account, since I don’t have any secret tips or special advice. Certainly as I read over my words, I realize that the main motivation to stay positive and keep moving, revolve around my immediate family, my wife, my kids. I guess that shouldn't be a surprise. That's the role models I had growing up. Nuts don't fall far from the tree.
If you aren't that lucky? Certainly I've seen others punch out when things didn't go as planned, or they realize that relationships and families take a lot of work. I don't know what to say to them.
For me, I've been lucky to meet a Gal who is just the right amount of crazy, who I can see the love for me in her eyes everyday, who makes this journey feel natural and meaningful and not all that hard.
For the folks who look at me and feel sorry for my plight, my struggle, the extra work I need to do, don't fret.
I've got it pretty good. Not perfect, but pretty good is more than good enough and I certainly get what I neeeeeed.
Life is really simple, but we insist on making it complicated.
It really is simple.
That’s not to say it isn't time consuming, exhausting, frustrating and difficult.
Love is the common denominator, it makes the difficult easier, gives me strength when I’m exhausted and gets me through the day to hopefully do better tomorrow.
Love for my wife, who I'm still amazed she agreed to marry that dorky introvert 22+ years ago.
Love for my kids, who deserve all that I can give.
Love for our crazy family of imperfect broken individuals who together somehow make a near perfect whole.
Do the best you can each and every day, and if you fall short, no worries, tomorrow is a new day to try again…
Peace be with you.
Jeffrey, Clive, Mr. PilgrimageGal.
Quote credits: www.brainyquote.com
Photo credit: PilgrimageGal