enough

When You’ve Had Enough

Robin Uncategorized , , ,
When You’ve Had Enough

I slipped in the back door and left a dixie cup of liquid pain reliever by the kitchen sink.

Yesterday, for the first time in a long time, my mom was able to swallow all her pills.

Today, she had an angry headache.

Progressive Supranuclear Palsy is a terrible, debilitating disease. To the average person, it looks a lot like ALS. In a spinning room, wiping away her tears, she was once given the Lou Gehrig’s Disease diagnosis. Then, months later, given it again—almost. (“You don’t have ALS yet,” the neurologist declared.) 

My mom’s first symptom, slurring her words, began about nine years ago.

Today she can not speak. She has an incredibly difficult time swallowing. She “eats” smoothies and soups, over the sink, using one hand to hold her jaw closed. The other hand, which has nearly no function, claws plastic IKEA cups and throws the food into her mouth; then she focuses and swallows the best she can.

It is brutally difficult. She is gigantically courageous.

The process is hard and messy—she spills a lot. Remarkably, she has maintained her weight for coming on two years and we have had no bouts on pneumonia. 

Pneumonia is our biggest threat.

I take that back. Pneumonia is our second biggest threat; discouragement is the first.

When you are given first an incorrect diagnosis (ALS) then a likely correct diagnosis (A-Typical PSP) that shares one thing in common—a lack of any medical help available—you begin a journey of willingness to try anything. In these last years, we have done yoga, acupuncture, cryotherapy, red light therapy, essential oils, ozone and UV therapy, IV vitamin cocktails, stem cells, crazy patches that supposedly activate your body, a massive list of supplements and CBD Oil.

The fact that I have resorted to CBD oil shows the level of ANYTHINGNESS I am willing to go to. I hate marijuana.

I hate it.

And, yes, I can tell you the difference between CBD and THC. I know the benefits of hemp and the long history of its uses in this country dating back to Mt. Vernon. I know about the endocannabinoid system. 

But I still hate marijuana and every attempt to normalize it in society. 

I have walked a long road and crossed a bridge on this topic and, as it turns out, I want help for my mom more than I hate all things Cannabis related, so in an attempt to help her conquer the (lack of) sleep beast that is haunting her, I patch her with crazy patches, drop CBD oil under her tongue, massage her swollen hand, put drops in her dry eyes and tuck her in—praying that she might rest. “The patches are just a placebo!” Critics say with rage.

Let me be clear, at this stage in the journey a placebo effect that makes things feel better is welcome 100% of the time. (I was kicked out of that Facebook group.) After a few days of using the patches, she could swallow pills again.

That might not last, but it did happen.

We have not found any miracle cure, and while daily life is not anything anyone would actually choose, most people don’t survive the disease as long as she has. And most people, after this long of a battle, are in wheelchairs or have significant cognitive impairment. My mom has no cognitive decline and has never fallen.

In other online groups of people associated with the disease, I am questioned, “Are you sure your mom has PSP?” Because nine years of symptoms later, she can still drive and walk and think. Something we are doing might be doing something to keep the full measure of the disease away. So I keep pounding on the internet and swiping my Dad’s credit card to find help.

And I keep my head in my Bible, steady in the knowledge that THIS IS THE DAY THE LORD HATH MADE.  THE MESSAGE version of the Bible is my best friend as of late. Today I am clinging to His words in Proverbs 1:

These are the wise sayings of Solomon, David’s son. Israel’s king—Written down so we will know how to live well and right, to understand what life means and where it’s going.

I don’t have to understand or even like much of this life. I know where it is going for all who believe, and that is enough for me. I fail regularly at living well and living right—but that is not a surprise to God.

The surprise to me is that EVEN THOUGH GOD KNOWS EVERY SINGLE FAILURE OF MINE, He still loves me. And He loves my mom. 

That is enough. 

The ENOUGH of this life can weigh. Me. down. Over and over in my prayer journal I have typed the words, “Lord, I need to know that I will be okay in YOU if ________________ happens.” I am learning, slowly, to release the things that scare me most. The words from Psalm 18 encourage to keep going, and to encourage my mom to keep going:

God made my life complete when I placed the pieces before Him. When I got my act together, He gave me a fresh start. Now I’m alert to God’s ways; I don’t take God for granted. Every day I review the ways He works; I try not to miss a trick. I feel put back together.

And THAT is enough.

4 Times Is CLEARLY Not Enough

Robin Grace, Growth, Moments, Special Needs Families, Uncategorized ,

I went to yoga for the fourth time in two weeks.

Okay, one of the times was a relaxation/stretchy/destress-y thing and not so much a strength building thing. It was my favorite of the four.

When it comes to actually doing yoga, I strongly resemble a walrus on a tread mill. It is just not pretty. Seriously, I cannot now, nor have I ever been able to touch my toes while my legs were straight. The only way I can put my palms on the ground is sitting on my rump.

Midway through every class I have absolutely no idea what in the love of all that is sane I am doing there.

Something is certain, however, and that is after 4 times at yoga I am not stronger. My clothes don’t fit better. I don’t love it.

CLEARLY it will take more than this to achieve my goals.

At the stretchy/relx-y yoga thing I loved, the instructor said the foundation of her life is her relationship with her Lord and Savior. HE spoke directly, through this perky teacher, to the nagging voice in my head whispering yoga and Christianity were not compatible.

I can assure you, as I am holding my aging body in Downward Dog AGAIN, I am praying to the Lord. When I am breathing at the beginning of class, I am praying for His will and strength to become. 

I am overwhelmingly convinced that for my life to move forward I must become who HE wants me to become; and exercise is part of the discipline in doing that.

This morning the instructor mentioned over and over that yoga is a practice. I hate practice.

I love to do things that come naturally. I don’t want to have to work hard or get better. This is likely why I am middle aged, soft around the middle and less affluent than I wish I was.

Lying on the mat, my mother on one side and my daughter on the other, I must face that life is often delicate and sometimes broken. My mom (who has been losing her ability to speak clearly from a yet-to-be-diagnosed issue) and my daughter (who has not yet learned to over come her disability and still can’t speak) remind me time is fragile. So is hope.

I want 4 times to be enough with every fiber of my being. Enough to get my mom’s brain to start sending signals to the right side of her body; enough for my daughter to fully engage in the practice because an amazing speech therapist once said, “What you see in the body, you see in the mouth,” which means that becoming proficient at yoga poses may help her learn to talk; enough for me to be comfortable in my own body.

Although it may not be enough to arrive, today was a step forward. Forbidden from evaluating results for 6 weeks, I am focusing instead on breathing in His grace. I am practicing focus on Him. Breathing deeply I am praying silently, asking and listening, when conviction washes over.

Slowly the thoughts create an unmistakable picture in my mind, showing me a pattern desperate for change: Rather than asking God what His plans are for my life, I am coming to Him asking for blessings on my plans.

Sigh. Of course four times is not nearly enough. I have to keep coming back…to yoga, to prayers, to listening, to a place of repentance…and remind myself that God’s ways are better than mine.

THAT is going to take practice.