What HE does, Who HE IS…

We have all heard the phrase, “hindsight is 20/20.” I think it is inevitable that at some point in our lives, when we reflect on what could’ve been, we look back and see things clearer than we did in the middle. Most often, I think we beat ourselves up because of choices, immaturity, the things we didn’t know at the time, and we leave out the grace we so desperately need.

It has been a holy, growing season for me since the last post. I am so thankful for the connections, thoughts and prayers after I published it.

I wanted to do a bit of follow-up.

The journey to getting a baclofen pump was two years in the making and as I look back now, two weeks out of surgery, hindsight is indeed, 20/20.

I have spent a lifetime managing the needs, challenges and downright pain of this disability however possible. The list of support, people, ways, how’s and trying is so long, I wouldn’t know where to begin. The ways that God has been consistent, present, and never gave up on me would take me days to write. The impacts of people in my journey would take even longer…

But what I want to tell you post-surgery, is that for the last two weeks, I have had virtually no spasticity, very little pain because my muscles are clinched and 2 very minor muscle spasms. Yes, you read that right….

I write this and shake my head. Honestly…..

For as often as I have begged, prayed, sobbed, pleaded and agonized why this is my story, dreamed of relief, played the “if I could have one day without this,” game or even tried to “be good enough the God would miraculously take it away,” I think that I didn’t really believe it was possible. I suppose, why would I?

Miracles are well documented in the book we love. For much of my teenage years, I imagined being like the woman healed in the BIBLE by touching Jesus ‘robe. I desperately wanted that chance! I vowed to give God every bit of the honor if it would all go away….

It never did. I worked through the grief, anger, “betrayal,” that God would not relieve this.

And I just kept living. The blessing of my love, marriage, having three beautiful, healthy kids. These things were not lost on me either, I had often wondered who and how would life be with my disability and having a spouse. In the beginning of our marriage, I pondered an element of “did he get the wrong end of the stick,” marrying someone with a disability?” I didn’t have a context for my body doing things “right,” so there were so many unknowns with pregnancy, each time. And at the end of each, by God’s grace, a healthy babe and the reality that my body does do it well.

I walked, hiked, biked, moved, studied, swam, I just kept going. The career I love? The friends and family who I invest in? It is all the parts of what makes life so good.

Yet, for all of these 51 years, the pain, agony, tight muscles and everything having to do with  it, have been held with a level of fear of aging, fear of it never going away, fear of being a burden, embarrassing my people, hurting myself with a fall. The joy in my life and the pain felt like two polar opposites…

at least until 3 weeks ago.

If you read the last post, you already know that the “test dose” for the baclofen pump was a life-changing moment. I did not know it was possible to feel less pain.

In the 45 minute window of getting that lumbar puncture and beginning to feel that dose work, it was like the world suddenly got much wider.

I have NEVER, and I do mean NEVER…said this, but, after that dose, I could not get this surgery soon enough.

Even coming out of anesthesia was different this time, using my own voice with regards to my tendency toward nausea, making that a primary goal following surgery and waking with virtually none…all things of miracles.

I got home from that surgery only with pain in the areas of incision, not spasticity.

In the two weeks since, I have had virtually none of the crippling muscle spasms that have plagued me for the greater part of my life.

Part of me sits in wonder as I write those words. And the other part must acknowledge that I may have had relief sooner if I had gotten out of my own way a bit.

Here is what I mean…

Because I have become so accustomed to “just living with it,” I blew past Dr. Rush’s expert opinion the first couple times he brought up, intrathecal baclofen pump to me. In all transparency, that was all my pride. “I don’t have CP severely enough to warrant a pump,” my brain told me. “You are fine.” “Surgery? NOT on your life! I can live with this. It would be too costly. I don’t have the time to take off work.”

Can you hear all my pride, (as well as my terribly masked fear?) Me too…

It is ironic that I writing about not beating ourselves up, those were my honest and very rigid thoughts.

And, oh, my stars…am I glad that God does not give up on me or leave me in the place that I am ok with.

You see, this surgery, is, where I got to finally touch the hem of his robe.

He loves me so much, to not leave me in the place that my humanity settles for. No. finally, this time, he allowed me touch him and feel his provision in the best way.

We could argue faith and we could argue science. Or we could argue about both together AND separately. But what is undeniable to me is the fact that he sees and hears and will provide, no matter what, because HE ALWAYS DOES. Even when I am “fine,” when I feel unworthy, when I am scared, doubting, when I am nasty and when I am broken.

HE always does.

Here is my thought…

How often do we all settle, talk ourselves into, good enough, tolerating, or making due because we can’t see anything better, because we are scared, worn out or disconnected from hope? How often does our pride override our trust in the Creator because we believe we just need to keep trying, enduring or managing?

I often think of the woman in the Bible, that one desperate and faithful enough to chase her Savior through the crowd, even in her illness and weariness. The woman so filled with fear, faith and hope that desperately, she reached out, probably just to feel the fabric of his robe slide through his fingers.

It’s no small thing that he knew, that her felt his power go to her. I imagine her collapsing on the side of the road, feeling all was lost as she felt that robe go by…

Can you imagine with me, how he came back, crouched down and looked at her? It must’ve been a moment to realize her torment had come to end, in so many ways. The holiness, hope and longevity of it all absolutely levels me.

I am praying that however, wherever you are, that you can take just a second and imagine touching his robe, the peace and with-ness that he has for you. It IS near, even if it feels like it is not. If it feels dark and lonely, whisper his name. He is near. If it feels like you have been in pain longer than you have not, I know. I am so sorry. I promise you HE has not left you…..he continues to draw you in, craft things working for your good. Lean into those who can hold faith and trust in him with you. Acknowledge your fear, stubbornness and (ahem) pride. Allow yourself to surrender and watch what he can do with and for you. It is so worth it. Years and years into this journey, I can tell you that for me, it has only begun anew. But HE…is tireless, everlasting and love infinitesimal. This is not only what he does, but who HE IS…

Both/And

Xoxo

Psalm 16:9