living her best life #39:…pit stops along the way

Posted on May 11, 2015 by hugmamma

That’s what the weekend was for Pat…and Brad, her husband.

A pit stop.

An evening with my husband and me was just one of many pit stops along the race car track that is now Pat, and Brad’s, life. On their way to The Mayo Clinic in Minnesota, they paid us a brief visit…to recharge and refuel…for the road ahead. It’s sure to have many challenges, both known and unknown.

As we made our way to where we would meet Pat and Brad in the baggage claim area at SeaTac Airport, I hurriedly scrambled for a piece of cardboard I’d stashed in my purse. It was the backing for a Mother’s Day card my husband had bought for his sister. While walking along, I managed to write their last name on the cardboard with a pen. Thank goodness there were only 4 letters. I filled them in with squiggly lines trying to make the name more visible. Beneath it I drew short, squat arrows, filling them in as well.

I kept a lookout for them at the top of the escalator. Hubby meanwhile wandered off to check on something. Spying Pat and Brad at the foot of the escalator I quickly called for my husband to “Hurry up! They’re here!” Holding the sign above our heads, we pretended to be their limousine service come to pick them up.

Walking towards one another we all laughed at my crazy antic. There were warm hugs all around as we exchanged our hellos. Moving toward the luggage carousel, the guys ahead of us, I motioned for Pat to join me in sitting down on nearby chairs. I did so because she seemed on the verge of tears.

Pat revealed she’d been frustrated and angry the last couple of weeks. As she said later when we again had a few moments to ourselves…Pat realizes “I am fighting for my life!” And she is. The prognosis for multiple myeloma is 7 years. I was reminded of that in a recent TV piece about Tom Brokaw, a former news anchor. He too is battling MM.

Something else Pat said which resonated with me. After spending time with family and friends, she said “They get to go back to their own lives. I’ll never go back to my life as it had been.”

It’s true. Pat’s new life is still unfolding.

The most important people in my sister-in-law’s life now are the doctors and other health care providers who are working to save her life. They are her lifeline. Literally.

Unlike my husband, I am a fatalist. Beneath my positive veneer lies an acceptance that life is finite. I can only credit it to being raised by a single parent, a mom whose love seemed conditioned on how she was feeling. If things were fine with her, she was fine with me. If not, her love could be taken away. Nonetheless, she was all I had so I made the best of it. A survival mechanism that has served me well. As well as can be, despite some obvious drawbacks…like trust issues.

In a text message sent off to Pat this morning, I wrote…

Thinking of you. And you’re wrong. I haven’t been able to go back to my life. Physically, yes. Mentally…you’re always…and I mean always in my thoughts. Keep wondering what you’re doing…how you’re feeling…what you’re thinking. Same way I was with my daughter. If I lived in Hawaii, I’d probably make a nuisance of myself. Hope you can come and spend a few days before you go back to Minnesota for the transplant. Let me know how it’s going…

Earlier I’d texted…”Call me if you need to unload or just need a boost. Think of me as your booster shot.”

In response, Pat texted…

Can’t thank you enough for last night. It was just the boost that I needed to be able to face this coming week. I feel like this is just the beginning which is hard to fathom after 16 weeks of chemo.

We appreciate everything you’ve done so far and your unwavering support and love. I look forward to seeing you and my brother again and I can’t wait to see your remodel. And yes…I can pull weeds! (In my text I had said she could help me pull weeds when she came again. And I’d pay her!)

A little levity is just the “spoonful of sugar to help the medicine go down…the medicine go down” as touted by everyone’s favorite English nanny, Mary Poppins.

When you think about it…we’re all dying. A few know when and how; most have no clue. The lesson for all of us?

…live our best lives…right here, right now…

…after all…the glass IS half-full.

……..hugmamma.

gentle courage…

Posted on January 19, 2015 by hugmamma

Earlier this evening I was on the phone speaking at length with a young woman of 50. She is the one whom I described in my previous email as having multiple myeloma and amyloidosis. I had called to offer my love and support during her hour of need. Instead we carried on with hilarity as we usually do on the rare occasion we’re together. You see she lives in Hawaii. I live in Washington State.

Fifteen years her senior, I marveled at my relative’s matter-of-fact outlook on her future. She’s taking each moment as it comes, doing what she can as opportunities arise. She’s taking supplements prescribed by a naturopath which were okayed by the attending medical doctor. She’s had accupuncture and will soon receive massage treatments. Obviously she is continuing a healthy diet, which includes veggies and fresh- caught fish…straight from the Pacific Ocean by way of her husband’s fishing pole.

Grateful not to receive any special treatment, my younger relative was taken aback when the day after she informed her coworkers of her health crisis, her office inbox was piled higher than usual with paperwork. No slacking there that’s for sure. And yet it’s good to know she’s valued for what she brings to the workplace.

Her husband too seems intent upon the family carrying on as usual. When I asked where he was, I was told “Oh, he’s at the beach.” Now how can anyone shed tears when these two refuse to let a couple of dumb diseases burst their bubble. In fact, when I asked if she was still working regular hours I had to laugh when the answer came back as a resounding “I worked the whole month of December, while my husband was off.” I asked what he was doing. “He went to the beach.” With their son.

Life goes on…as it should. Something about which we wholeheartedly agreed, my relative who’s a very dear friend, and me.

Half the battle is deciding to actively participate in getting better. Maybe having children gives moms no choice in the matter. And that’s a good thing. A great thing, in fact. We give life to our children, and they give us a reason to go on living.

A stem cell transplant may be the eventual route taken on the road to complete rehabilitation. Guaranteed family and friends will sustain our loved one as she goes for the championship in…the Mother of all Super Bowls. I for one will be right there with her, pummeling the enemy into mush. Without hesitation, she exclaimed she’d bet on me to win the fight. I called to lift her spirits, instead she gave my ego a boost.

I promised some comic relief for it was made clear that…

…sadness was not part of the game plan.

………hugmamma.

friends affect us…

Posted on November 22, 2013 by hugmamma

Found an interesting post Nine Signs that Unhealthy Friendships are Fueling Your Fibromyalgia at http://asethaviens.com/

I’d go so far as to say that unhealthy relationships of any kind aren’t good for fibromyalgia sufferers. Then again, Asetha is correct in placing so-called friends, at the top of the list.

Friends have quick access to our innermost thoughts and feelings.

We trust friends to offer us words of wisdom.

Aren’t friends the first to whom we turn for compassion…praise…support?

Friendships can, however, become the breeding ground for discontent. Remember the old adage “Familiarity breeds contempt?” It’s sad when that happens. When friends begin to envy our lives in one way or another.

I don’t suppose even friends realize when they begin to cross the line. Ones who take a dig at you every now and then, thinking you won’t notice or that they’re only thinking of what’s good for you.

What’s good for me.

I believed my mom when she said that to me. However, even she could lead me on a merry chase that way. Nonetheless, she borne me so I knew she had my back. Most of the time, at least.

When others tell me, or imply, that they know what’s good for me. They go too far. Even I don’t always know what’s good for me, so how can someone looking at me on the outside know what’s going on inside?

Companionship with folks like myself who are tentatively making our way through life, humble about our strengths, forgiving of our weaknesses…that’s more my style when it comes to friendships.

Although I can probably count my good friends on one hand, I enjoy the moments we share…and relish seeing them again, whenever.

Not judging others because we don’t walk in their shoes seems the best advice any friend can give another.

…that’s what i offer you…dear friend…

………hugmamma.

a parent’s worst…nightmare

Posted on October 2, 2013 by hugmamma

…or at least one of them…a child with a debilitating disease like…cystic fibrosis.

I’ve been trying to catch up with visiting other blog sites. After all, many so generously take time to visit hugmamma’s mind, body, and soul. You know what they say…”what goes around, comes around.” And I sure as heck like it when folks come around.

Once-in-a-while one post catches my attention, forcing me to pause and take a deep breath. Victoria’s “A summer of CF” did just that.

How much is a parent able to give as a caretaker, especially for one’s own child, without succumbing to depression? I don’t know, not having been there myself. I can only think to offer up prayers for someone in Victoria’s position, and ask that you do the same…after you read what she shares at http://thevoicefromthebackseat.wordpress.com/2013/08/26/%f0%9f%94a-summer-of-cf/

…i’m sure you’ll be moved to say a prayer for this family…and be very grateful for the blessings in your own life…