Thank You for Praying

Hello friends,

Thank you for praying for me. Over the past few weeks, God has enabled me to increase the flow rate of my tube feeding (allowing more calories to be taken in), and I have managed to tolerate the higher flow, despite the difficult symptoms that come. I have also been able to sip tiny amounts of water over the past few days. Neither have come easy, but these are both answers to your prayers!

The battle to endure continues to be quite difficult, but God is my Keeper, and He has never failed me yet. As I wrestle through the daily struggles, something I recently read by Joni Eareckson Tada has been a great help, and I want to share it with you:

"God permits what He hates to accomplish what He loves." I can smile knowing God is accomplishing what He loves in my life - Christ in me, the hope of glory. And this is no Plan B for my life, but His good and loving Plan A.

I can rest in knowing that none of this is a mistake. God is allowing it all for my good, and He is forming Christ in me, even when I cannot see it. He is so much wiser than me.

Thank you all for your prayers. I cannot tell you how MUCH they are sustaining me. I have seen a direct correlation between moments of barely functioning, followed by a period of dramatic improvement, and then hearing that friends had been praying at that exact time. Don't grow weary, for He is using your prayers to carry me through! How desperately I need Him, and how grateful I am that He has given me such friends as each of you.

I will do my best to update more once I have details regarding the doctor's appointment, etc.

"And now, O Lord, for what do I wait? My hope is in You." - Psalm 39:7

Blessings Through Raindrops?

I first heard the song, “Blessings,” by Laura Story earlier this summer and was immediately struck by its coupling of honesty and beauty. In the face of unanswered questions, pain, and heartache, it speaks of a deeper Reality, an achingly beautiful hope.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if the thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if the thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if the thousand sleepless nights
Are what it takes to know You’re near

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

I know that thirst well. Most moments I simply long to be free from the suffering, and though this road has grown harder than I ever expected, yet with each aching step, God is gently teaching me that pain can truly be a gift. Whether experiencing heartache or loss, beauty or joy, deep inside us lies a longing that no person, place, possession, experience, or even relief from suffering can fully satisfy. Something is always left wanting. Missing. It is never enough. Yet, every moment of agony, sorrow, loss, and disappointment is a mercy when it serves to turn our gaze to Heaven and increases our longing for what awaits us there. And even the sweetest and most glorious moments of good and beauty in this life merely offer us a foretaste of what awaits. Before we can take hold of them, they have slipped away, leaving us unsatisfied, hungering for more.

God is using our painful roads to prepare us for the Day we will arrive at the doorstep of our true Home –Heaven, the Place for which we were made. The Place we have been dreaming of all our life. The Place where we will see the Face of the One Who made us to know and find unending delight in Him. Forever. The Face that will finally satisfy that endless thirst.

And so, these dark nights, these unfulfilled hopes, these seemingly endless valleys– they are truly “blessings in disguise,” for as one of my favorite hymns so sweetly puts it, “Perish every fond ambition, // All I’ve sought, and hoped and known; // Yet how rich is my condition, // God and heav’n are still my own!” (Jesus, I My Cross Have Taken)

Note: I cannot end this post without remembering my dear friend, Amy, who constantly lived her life with her true Home in sight. She was never happier than when talking about what awaited her in Heaven. And now she is there, experiencing wonders beyond our greatest imagination! If you didn’t know Amy, you can learn a little more about her life here. May we live our lives as she did, longing for Heaven and the glories that await us in His presence.

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Health Update

Dear friends – Thank you once again for your patience! This past Tuesday, my parents and I returned from an appointment with my doctor at Hopkins, so here’s a quick update on where things are.

Over the past few weeks, I have maintained my weight and progressed forward in small increments. My doctor would like to increase my calories, hoping that this enables me to gain weight. This will require that my 24-hour feeding tube move up to a higher flow rate. If I have not gained by our next appointment in two weeks time, we may have to consider moving to TPN (Total Parental Nutrition) – nutrition fed intravenously through an arterial port, thereby avoiding the digestive tract entirely. The feeding tube would remain in place. We hope to avoid TPN if at all possible, due to its high risk of infection and the significant financial obstacle it presents, since it is not covered by insurance. The doctor’s goal is to get my weight up and then proceed with additional testing.

So for now I continue to battle in the strength that God supplies and pray for progress to be made over the next few weeks. The daily struggles with my constellation and complexity of symptoms continues, but there is MUCH for which to give thanks and praise Him.

Praise Reports:

• Over the past few weeks, I’ve maintained my current weight and have seen a slight increase.
• God continues to sustain me through the most difficult moments.
• God blessed me with a last minute, unexpected time away at the beach with most of my family (more on that to come) and has shown me so many mercies and kindnesses.
• God has been teaching me to sing hymns and songs of praise in the hardest moments.
• I continue to be upheld and undergirded by your constant prayers and encouragement. It is amazing to watch how notes and texts from friends and family arrive at “just the right moment.”

Prayer Requests:

• For the ability to tolerate an increased flow rate and gain weight (my body doesn’t adjust easily to higher flow rates, and the last time I tried to increase I had to back down).
• That I would be able to avoid TPN unless that is His best plan for me.
• For endurance, joy, and the ability to continually hope in God, walking by faith and not by sight.
• For wisdom for my doctor, parents, and me as we make decisions.
• For the ability to begin eating and drinking (I haven’t taken anything by mouth since early August) and help to cope with the ensuing symptoms which are severe.
• For relief and ability to endure the symptoms until God brings healing.
• That I might dwell on the goodness and mercy with which God daily showers me instead of the significant limitations I must endure for now.
• That I would rest wholly in the care of my Savior, for “there is no fear in love” (1 John 4:18), and that this wondrous love which I have been given in Christ would take greater root in my heart, bringing a deeper experience and knowledge of His love for me.
• While I firmly believe God has many more years for me on this earth, I want to see my longing for Heaven increase, while at the same time enlarging my gratitude for each gift in this life and making me more effective with the moments I have been given.
• That I would sing to Him, especially when all is darkest.
• That I would trust HIM to be my Deliverer, expecting great things.

Thank you all for your constant care, prayers, and love. I simply do not have words to tell you just what it means.