Grit, truth and profound gratitude

The spring and summer of 2025 have been

a dizzying blend of so much both/and that

even I, who loves both/and, am craving a few

minutes of just one singular feeling…

Yet that is not how it works, is it?

Unfortunately, we don’t get to

choose our feelings. Brene Brown

teaches us that we cannot armor

against the difficult feelings AND

get to feel all the blessed ones. We

must be open to it all if we are going

to be open to at all, or if we are going

to armor up, and we only get to feel the good to

that level as well.

I never dreamed that when I made the

decision to have a pain pump implanted in February

that I would be still be learning, adjusting and

at times struggling with this new normal in August.

And, I could not have known the growth, gifts,

support and levels of emotional and spiritual intimacy

I would gain because of it.

“Has the pump been worth it?” A close friend asked.

With no hesitation, I answered yes

and mean it to my bones.

From the test dose and the wonder of relief from the spasticity I have always known, to the kind registrar for the surgery, the new medical knowledge I’ve gained, nurses who are the very grace of God in human form, and getting support from the brilliant and compassionate Dr. Rush,  I’ve seen so much beauty in the journey than I could’ve dreamed, after a lifetime of surgery, medical procedures, trauma and hope.

Yes, so worth it…because I believe that once we get the medication leveled out, my quality of life as an adult with cerebral palsy will continue to improve. That is a wonder to me, even in all the frustration of learning to walk again and medication changes that have certainly put my body on a Mach 10 roller coaster in 2025 (so far.) But there is a bigger, better story of grace at play…

You see, my beautiful kids and my miraculous husband have been the truest images of God’s love and provision in this season. They have been absolutely fearless, steadfast and full of so much grace and mercy that when I really stop to think about it, I often weep.

It is so mind-bendingly difficult to expose our biggest vulnerabilities, even to those we live with and love deeply. I think we all have levels of comfort in this area and levels of “there is no way I will let anyone see me this way, know this about me, expose my true thoughts,” etc. It is so difficult, on many levels to face the fears we carry, let our masks down or really truly give in to being entirely seen.

Yet, when you have an outward disability, not only are you entirely exposed, ALL THE TIME, but you must also face asking for help more often, enduring a massive lack of control and having to work so hard to get to the “starting point” that most others arrive at effortlessly.  Please don’t mis-understand, I am not feeling sorry for myself or my fellow CP Warriors. I am simply pulling back the curtain on how the world feels to me.

This season has challenged me in more ways than I thought possible. It is virtually impossible to explain what it feels like to be “the same,” but not recognize the feelings in my lower half, especially from my knees down. To feel scared these legs will buckle with each unfamiliar step (and sometimes they do) and not be able to trust or recognize the body I am housed in. It has been vulnerable to say the least.

Then there are the moments where I JUST want to be FINE, in front of my kids and husband. Yet, I can’t keep my balance, I don’t know how to use these muscles so I MUST again ask for their help. (There has been so much of all of their beautiful assistance AND so much longing for my independence and not wanting to burden them.)

Even in all my insecurity and angst about “wanting to be normal,” they each in their own way, have been the perfect picture of acceptance, never-ending faith, love and trust that I am in awe. There has not been a hint of annoyance, embarrassment, impatience or feeling burdened from any of them. They are each unwavering…and if I see them as a representation of my Jesus, I am leveled.

I love them so….

And I am so, so grateful for their love, devotion, fierce protection and unconditional positive regard.

I am so grateful for the challenges in which I get be the recipient of all that grace, and mercy….

I suppose this in part is my grateful love letter to my loves. I don’t have the words or ability to explain what your love means to me. I don’t know how to thank Jesus for every good and perfect gift, even in the midst of pain, halting steps, muscle spasms and fear.

It is also my testimony to the intimacy and love of God that I am given in the 50ish years I have loved him. In the days of intense muscle spasms like I’ve never know a few weeks ago, I literally cried, asking him again, to take this disability. I was tired, in pain and scared. I really had so little left to fight with and was at the end of myself.  The way my kids and Matty prayed with and for me, held me, distracted me, sang to me and shared their own faith to lean on was ultimately the way I most experienced Jesus. I don’t know if I can do it justice in these words.

What I know for sure in this season is that I am more loved, provided for and seen than I ever thought possible. God is so present in the worst and most beautiful and everything in between. The blessings of Matty and our kids is akin to love in its’s purest form; and I am so very humbled and more myself than I ever have been.

Thank you for praying, encouraging, reading and supporting. I am sure the best is yet to come because I know Jesus is already there.

Both/And

xoxo