There was a time when the Israelites finally came through the desert. The 40 year journey was coming to an end. A time when they could smell the change in the air. Feel the shifting in the wind. And, with their own eyes... could see in the distance the Holy promised land.
I have so much I want to tell you. So much I want to share about what Father is doing in this season. Writing was my space. My place to dwell in His goodness.
But this is His story.
His story to fufill.
His timing.
His Glory.
There will be a time of testifying. If we don't, the very rocks will cry out beneath our feet. And my God, my Abba Father, what a story there will be to tell. Now we continue to dwell in His faithful word.
Standing on the outskirts.
The 40 year journey was coming to an end...
All they had heard generations before talk of...
The physical representation of their unshakeable God.
The faithfulness of their Father...
Finally being brought to sight.
Even with their lack of faith,
Even with their lack of endurance,
Even with their complaining...
He covered it all.
With His faithfulness,
With His provisions,
With His grace.
He is enough.
Please hear me from the deepest part of my bones...
HE IS ENOUGH for all of it.
I was invited to speak at a conference last week. February 28th, Rare Disease Day, kind of perfect, huh?
A close colleague at MUSC was helping host the SCRDAC Rare Disease Symposium and asked if I would share about our journey.
There would have been a time when I sought out these opportunities. The opportunity to speak about our disease, all our efforts at the Drake Rayden Foundation, all our plans for change for NKH and how massive support through funding and volunteers were the only way to bring forth the change we needed.
Opportunities like this allowed for buisness networking and connections to be made. It also allowed us to show our validity in the space. It validated to the public we were who and what we said we were.
Don't get me wrong, all these things have value and are needed. We fully believe in transparency.
It is just, nine years in now, and I think I get a bit put out with the "show of hands" that consumes industry some times.
There are still a lot of good in the industry, especially the people that surrounded me in that room. Their hearts were pure.
But over the years, we have been exposed to a lot of industries spending more time talking of what they are doing than actually doing it.
Dying daily changes a lot of things in your life, and how you spend your time is one of them.
Time is all we have to make an impact.
This time it felt different.
When God called me home years ago, it reset a visual. It forced a reload of what following Him felt like.
"Build it they will come", felt good because I am a fixer. Doing was my love language.
Ok, lets go!....I'll bring the shovels...digging to China if we have to! "1..2..3..TEAMWORK!"
"Leave it, because I said so"...
Wait....WHAT, Lord?
You just said build it...they came...how do I pull back now? What does that even look like? What if we lose it all...all the hard work???
Do
You
Trust
Me?
. . . . . yes, Lord.
I don't understand.
But I trust you.
When I was originally asked to speak at the conference, I first said no...
I am in a different season. I don't think this is the time, a lot of moving pieces right now.
"Putting it down", did not mean slowing down, ironically, but rather redirecting....letting go to let God have space, rather.
So I sat in it. I asked Him..."is this an opportunity to speak about you?"
If so, then I will go.
Last week I drove to Columbia, by myself as Eric stayed home to be with the kids, to present in a room full of doctors and scientists from around the state, patient advocacy groups, care-givers and warriors of rare disease viewing in person and online.
I had 28 slides... 15 mins followed by 15 mins of Q & A.
I spoke of our family, my precious children, all of them, their courageous fight to live...NKH disease metabolism, charts, publications, what we have found through God's leading, the ability to influence research through what our small foundation is discovering...
But this time..
our main objective...
TO MAKE FATHER KNOWN AND TO HIM BE THE GLORY
for all He has done.
Gosh, the weight lifting and excitement I felt to tell of His story through my children's lives.
It reminded me of why I started this journey in the first place. Not shouldering the weight of what industry expects us to be, or what high expectations I had straddled us with all these years.
It was all good intentions...just smothering at times trying to keep up.
We have talked a lot in church about coming back to our first love.
Using my time, my opportunity to speak of Christ and what He has done through this journey...that was it.
That is what all this is about.
Him bringing healing....
A testimony to His faithfulness.
Him sustaining our efforts, our family, our marriage, our babies....
All for His Glory.
I left there so encouraged, so reminded....so full of peace.
Which if you know me personally, I really do not like public speaking. I am so hard on myself, I normally leave feeling drained physically.
This time, no pressure, no stress. Butterflies of course, but the difference was palatable.
I CAN talk about Father's faithfulness...
because I have watched Him resurrect my son!
I am living the story of manna in the desert!
I am standing on the outskirts and can tangibly taste and see with my own eyes the promised land!
I had people come up afterwards and compliment the presentation which was very kind, but one sweet sister, I remember her face specifically.
She came up and waited patiently as I spoke with another doctor about a future project.
I turned to speak with her and she grabbed my arm and looked me in the eyes...." It is truly Him through it all....As I watched you present I just kept saying...Look at God...You can SEE God in it all."
I looked back at her with that same excitement and said, "I know...He deserves all the Glory for what He is doing and what is to come....I hope to come back next year, that wasn't even the half of it!"
Please be in prayer for all of it.
When you think of us, if God brings us to your mind...
Pray for His will to be done...
His name to be glorified...
and for our boldness in sharing about Him in every opportunity He presents us.
To God be the Glory...
Forever.
-Amen