But He is Good

Dear friends,

It's been a while. Many of you know by now that life has grown even more difficult since my last post, and I recently got home from spending a few weeks in the hospital. I don't have time to go into all the details right now, but I wanted to ask for your prayers as my parents take me to a doctor's appointment tomorrow morning at 10:30.

I am currently unable to eat or drink and am receiving all my nutrition through CPN (also known as TPN where you are fed intravenously). I am struggling immensely with it, but God is still sustaining my life and caring for my needs. I am praying that the doctor tomorrow may have some insight, and I also hope to meet with a nutritionist in her office. But honestly, she may not be able to help. God alone must be my ultimate Hope.

A friend recently shared a song with me about one of my favorite literary characters, the great Lion, Aslan, from The Chronicles of Narnia who is a Christ-like figure in the stories. These lyrics by Kendall Payne really hit home for me:

But He won't say the words you wish that He would
Oh, He don't do the deeds that you know that He could
He won't think the thoughts you think He should
But He is good, He is good.

That is my hope right now. He is not acting in the ways or the timing that I would like or hope for, but He is good. He IS good. He is GOOD.

Thank you for continuing to pray and stand with me. I know it can be wearying to continue on in prayer for someone when the road grows long and the end isn't yet in sight. It means more than I can say to know you are doing this still, and God is truly using each prayer to sustain me.

I look forward to sharing more in the days to come, and thank you for praying for me tomorrow.

Not Unredeemed

Dear friends,

Once again, I cannot thank you enough for your prayers that carried me through my recent stay at Hopkins. God specifically enabled me to undergo tests which I thought nearly impossible. 

During the course of those three days, I saw neurologists, an occupational therapist, a physical therapist (who, it turned out, used to play soccer with my sister in middle school!), a speech therapist, and both medical and GI doctors. The CT scan of my abdomen required ingesting a liter of barium as well as IV contrast. It took a few hours to get the barium through my G & J tubes (since I had difficulty swallowing it), but I made it. They ran a large number of labs to check vitamin levels among other things (I honestly don't even know all that was done, as I have yet to receive my records.). The swallowing study was probably the most difficult test for me overall, but once again, grace was there for the exact moments I needed it.

Results? Well, the short version is simply that the cause of my symptoms remains a mystery. I am scheduled to meet with my doctor on June 20th for a follow-up, as he was out of town during my hospital stay. The CT scan was normal and was unable to pinpoint the source of my pain. The swallowing study revealed a few abnormalities, and the labs appeared to be fairly normal other than my being somewhat anemic. I was given a prescription for a month-long course of an antibiotic (used to treat bacterial overgrowth), and I switched to a different formula which is higher in calories, making it possible to take an 8-hour break from my pump within each 24-hour period. The new formula was not my preference, but the advantage of giving my digestive system a small rest is potentially worth it for the present.

Although I wasn't necessarily expecting anyone to stumble upon a a great discovery, I must admit I was hopeful. As I left the hospital, I found myself struggling to come to grips with the continuing reality that no one still really knew what was causing my symptoms, and I wasn't necessarily any better for having spent three days in the hospital. "But," I corrected myself, "there IS Someone who knows fully what is happening inside me. One who is not only intimately acquainted with what is wrong inside but also with my every thought, and doubt, and fear and who knows just how to lead me out." In all honesty, I didn't say those very words then and was actually struggling a good deal to remember this precious truth, but it IS true and it is what I need in this very moment. He has used and will continue to use human wisdom, skill, and knowledge to help me, but it all comes from Him. Every time I come face-to-face with the limitations of human help I am compelled to look up and see both the true Source of Help and my only Hope.

And so I continue to need Him as I will every moment of my life until I see Him with my own eyes. (I need You, Jesus!) As the pain of loss, confusion, fear, and what appears to be a never-ending road seem to hem me in on all sides, these lyrics from a song titled, "Unredeemed," have been such a comfort:

Life breaks and falls apart
But we know these are
Places where grace is soon to be so amazing
It may be unfulfilled
It may be unrestored
But when anything that's shattered is laid before the Lord
Just watch and see
It will not be unredeemed -Selah

I know a lot about shattered things. Lost things. Broken things. But I have a God who has promised that nothing, no matter how broken, no matter how many tiny shattered pieces lie before me, is too difficult for Him to put back together again. All the places in our hearts and lives that seem beyond hope are just waiting for Him to come in and restore, redeem, renew. I may see it tomorrow or I may see it in fifty years, but it is sure to come because He always keeps His promises.

Thank you for helping me wait, and hope, and endure until that day. I love you all.  

*Will try to post a prayer & praise update "soon" :)

Surpassing Power

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. 2 Corinthians 4:7

Dear Friends, 

Thank you all for your prayers over the past two weeks as I have returned to continuous tube feedings. The adjustment has been difficult yet God has continued to sustain me. I am no longer able to eat or drink due to the severity of my symptoms and daily life has grown more difficult. 

Yesterday, I met with my doctor at Hopkins to see where he wanted to head next. He decided to admit me to the hospital for at least three days to run a number of tests. It has been more difficult lately than I could have imagined, but God has been enough. Due to the severity and complexity of certain increasing symptoms (especially breathing, muscular weakness, and pain) my doctor plans to involve other specialists in the battery of testing. 

I am in the admitting office at Hopkins right now, and although the way forward isn't exactly clear, I know God will keep me wherever I go. His strength is all that is keeping me going right now, as every step seems to grow more and more difficult. I am grateful for the progress that has been made, but it is still an intense struggle. I am becoming even more aware, in the literal sense, how my every breath is a gift from God. I would not be here right now if not for His power. 

What to pray for:

• Wisdom and strength for testing, especially the CT scan (requires taking a large amount of barium)
• That my eyes would be fixed on Jesus - I need Him.
• Grace for my family during this time. (especially my parents and youngest brothers)
• Courage. Endurance. Faith. 
• That I would "Lean not on my own understanding."
• Trusting God to use this in ways I cannot see. 

I cannot thank you all enough for your prayers and care. I know He has good things planned for these next few days even if I cannot see the way ahead. He is the One who goes before and with us.

"It Must Be Good For Me..."

“God that cannot lie promised” (Titus 1:2).

Faith is not working up by will power a sort of certainty that something is coming to pass, but it is seeing as an actual fact that God has said that this thing shall come to pass, and that it is true, and then rejoicing to know that it is true, and just resting because God has said it.

Faith turns the promise into a prophecy. While it is merely a promise it is contingent upon our cooperation. But when faith claims it, it becomes a prophecy, and we go forth feeling that it is something that must be done because God cannot lie.
–Days of Heaven upon Earth

I hear men praying everywhere for more faith, but when I listen to them carefully, and get at the real heart of their prayer, very often it is not more faith at all that they are wanting, but a change from faith to sight.

Faith says not, “I see that it is good for me, so God must have sent it,” but, “God sent it, and so it must be good for me.”

Faith, walking in the dark with God, only prays Him to clasp its hand more closely.
–Phillips Brooks

“The Shepherd does not ask of thee
Faith in thy faith, but only faith in Him;
And this He meant in saying, ‘Come to me.’
In light or darkness seek to do His will,
And leave the. work of faith to Jesus still.”

(Streams in the Desert May 1- Mrs. Charles Cowman)
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Dear friends,

Thank you for your prayers for me today. He answered them! I had the "privilege" of being one of the first patients to go through procedure in the new endoscopy center at Johns Hopkins. Today was their first day in operation, so the place was quite abuzz. Computer glitches, missing syringes, and false emergency alarms were commonplace, but I think I made it through without any major disasters. :)

My symptoms were quite intense leading up to my procedure, and the battle grew quite difficult as I waited, received my IV, and prepared to go under, yet God was present with His mercy which was evident in a number of ways. My dad was allowed to come back with me until I was taken to the procedure room, and the staff and nurses were very kind. I awoke to discover the doctor had not only given me a new J-tube as expected (what I get all my formula through) but also a new G-tube (into the stomach) which was a surprise. The new one is not as comfortable, but it may end up being more durable. All that to say, I do have a greater level of discomfort/soreness in my stomach as well as the expected sore throat and congestion from the scope and intubation.

I left the hospital shortly after 4pm and emerged into the sunshine. God was so very merciful to me! Honestly, I was fairly anxious about going under due to the intensity and type of symptoms I was experiencing at the time, but the Lord kept me and truly proved Himself faithful. I had no strength (and still do not) but that simply meant I had to trust Christ to supply all that I could not supply. Simple, right? No, it wasn't that simple to me, but it does sound simple on the page. It is putting it into practice that is the tough part. :) Before the procedure began, I wanted to make sure the doctor understood my concerns about the nature and intensity of my present symptoms and whether it was okay to undergo anethesia in my condition. And when I wasn't able to find the assurance that the doctor had heard and understood, my dad wisely reminded me to tell it to the Lord. I had to cast myself upon Him and in doing so, God proved Himself faithful once again.

I am so grateful for my parents' support throughout the process and for each one of your prayers. You have no idea how MUCH God used them to carry me through. Thank you. Thank you. Thank you!

I do not know what the days ahead hold. Returning to my tube feedings while continuing to endure both the onset of new symptoms and the intensification of previous symptoms is more than daunting. Even so, I am freshly challenged by the devotional posted above which I read on the way to the hospital this morning. I may not know exactly how this turn of events is good for me, but faith can enable to me to say "God sent it, and so it must be good for me." When I make other objects my hope (and this is much of the time!) I find myself either facing disappointment or despair. He alone must be the Object of my faith. It is only then that I will not be disappointed.

Thank you again for your prayers and words of truth and encouragement. These days would be all the much harder without you all walking alongside of me. May you be reminded that your prayers are having a far greater impact than you might imagine right now.

A few ways to pray for the days ahead:

• Grace to adjust to tube feedings and wisdom to know how much & what foods to eat as well as perseverance with drinking and help to formulate a good routine.
• For His glory to be displayed in my utter inability and weakness. That I would truly cast myself fully on Him and find Him to be more than enough.
• Wisdom as I consider looking into a potential disease which many of my symptoms are matching. And continued direction regarding whether to continue with my current medical path.
• Joy in the Lord and hope in Him no matter how my body feels.
• Freedom from anxiety and fear (especially when my symptoms intensify) and grace to look at Him and trust Him as a little child trusts a parent to care for her needs. That He would satisfy my soul and give me His peace.
• Sleep
• Healing in His perfect, good, and wise timing.

No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it. - Hebrews 12:5-11

Procedure at 12:30 Today

Dear friends,

Thank you for your prayers yesterday. The doctor recommended that I go ahead with reinserting my J-tube today, so I am leaving shortly to head to Hopkins for the 12:30 procedure. This is not the way I would choose, and when I look at the steps ahead I feel blind, unable to see the way through. Yet once again I am reminded of the verse at the top of this blog, "And I will lead the blind in a way that they do not know..." (Isaiah 42:16). He is the One who knows. I can't put the pieces of this puzzle together but He can and is even now doing it. I am also reminded of the verse on this blog that says, "Many are the plans in a man's heart, but it is the Lord's purpose that prevails" (Proverbs 16:9).

So grateful for your prayers that He uses to carry me. Yesterday was an incredibly difficult day, but He was faithful, and as long as I have breath in this body I want to praise Him. Thank you for praying for peace today as I go under for the tube placement and then move back to adjusting to tube feeding and continuing to press ahead with taking in food and drinking. My symptoms have grown increasingly confusing and scary, but my God has never changed. (And it is amazing to see how He has not only sustained my life but has enabled me to gain weight and progress in ways it can be easy to overlook in the midst of pain!)

Love you all and am constantly amazed at the depth of care I receive from each of you. Your kindness is a reflection of our God's kindness, for He continues to display His care through each of you even when it is hard to see Him through the fog of pain and symptoms. Thank you. May you know His pleasure today as you remember the effect of every prayer. So grateful!

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Surely God is my help; the Lord is the One Who sustains me. - Psalm 54:4

As for me, I call to God, and the Lord saves me. Evening, morning and noon I cry out in distress, and He hears my voice. 
Cast your cares on the Lord and He will sustain you; He will never let the righteous be shaken. -Psalm 56:16-17, 22 

I will praise You, Lord, among the nations; I will sing of You among the peoples. For great is Your love, reaching to the heavens; Your faithfulness reaches to the skies. Be exalted, O God, above the heavens; let Your glory be over all the earth. - Psalm 57:9-11

Surprises

Thank you all for your prayers for my appointment at Hopkins a few weeks ago. I truly felt them as God enabled me to communicate with my doctor and discuss next steps, even in the midst of great physical weakness. The brief update is that he was encouraged by my weight gain and scheduled a SmartPill test for May 7^th which will measure motility and collect other data related to GI function. He also ordered x-rays and bloodwork for various auto-immune diseases. Although I left the appointment still hesitant as to whether to continue with this doctor, it did seem reasonable to move ahead with the next test and then re-evaluate after hearing where my doctor would like to go after that. So I began trying harder to eat various foods and press through the pain while continuing on my feeding tube…that is until last weekend.

While taking a walk with one of my brothers, my j-tube accidentally ripped out. It was definitely a shock at first, and I will spare you the more unpleasant details, but I didn’t experience any additional pain beyond what I already was facing. A few hours later I found myself in the Hopkins ER where a doctor was able to fix my G-tube. She explained that I would have to come back on Monday to have the procedure done to reinsert the J-tube (which is what is used for all my formula/nutrition).

I was actually somewhat excited to be without my pump for the first time in eight months and wondered what God might have in store for me. I asked the doctor to give me a week to attempt to eat and drink enough by mouth without my feeding tube. Well, a week later I can say that God has truly sustained me through some of the biggest waves yet. Because of my difficulty swallowing, I have been relying on receiving all my fluids through my tube. I now had to get down at least three cups of water a day along with 2000 calories and all by mouth. God has enabled me to meet my calorie minimum and to meet or get close to my fluid minimum each day, despite my saying I couldn’t take another sip or swallow another bite. He has been so faithful. It has been amazing to see His enablement, yet it is difficult to know whether to continue pressing forward at this level or not, as my body is finding it incredibly difficult to process and tolerate the foods I have been eating.

Tomorrow afternoon I will be meeting with my doctor at 2:30 to ask questions and learn more regarding the procedure scheduled for this coming Tuesday at 12:30 to reinsert the J-tube. I would love to be able to continue fighting without the feeding tube, but I am not sure what is best.  I would not be honest if I did not say that the severity and complexity of the symptoms I have been experiencing have been incapacitating and quite scary. I don’t know the way ahead but I know my God sees perfectly.

I wish I had time to say more, but I need to move on to prepare for the appointment tomorrow. I cannot tell you all how MUCH it has meant to hear of your continual and faithful prayers. They have carried me through the most desperate of moments and continue to carry me still. What a merciful and faithful and good God we have. I don’t know what is best, but He truly does. I would love to be healed. I would love to be able to start drinking normally, digesting food, functioning as a whole person and not be on a feeding tube, but God knows so much better than I do what is best for my life. It’s not easy, but I want to say “not my will but Yours be done.”

I love you all so much and cannot wait to share with you all how God works in glorious ways in the days to come.  Thank you for lifting up my arms (literally and spiritually) again and again. He knows what He is up to! And it’s most likely something far beyond anything I would expect. His ways are higher than mine. And that is something I can take comfort in, even when I can’t see the end of the tunnel. He does. My physical body may fail and my earthly sustenance may be removed, but God will be “my Portion forever.”

Nevertheless, I am continually with You;
You hold my right hand. You guide me with your counsel,
and afterward You will receive me to glory.
Whom have I in heaven but You?
And there is nothing on earth that I desire besides You.
My flesh and my heart may fail,

but God is the strength of my heart and my portion forever. – Psalm 73:23-26

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Ways to Pray:

• That the Lord would specifically give wisdom and guidance to the doctor, me, and my parents tomorrow and direct our conversation. 
• That He might lead me to a nutritionist who can help work with me more closely.
• For the power to persevere in eating and drinking and especially to be able to begin swallowing liquids and fight through the fear of choking (I’ve been relying mostly on homemade popsicles.
• For His glory to be displayed in my inability and weakness. He can choose to heal or to sustain me in my sickness, but He is the only reason I am still here today!
• For my eyes to be fixed on Him, not on the waves.

Hopkins Tomorrow

Hi dear friends-
This is going to be brief, but I thought you would want to know that I have a 1:30 appointment with my doctor tomorrow (actually today since it's after midnight) at Hopkins. This will be the first time I've seen him since last fall. I will be updating him on my present condition and hearing what tests he would like to run and how he would see me proceeding from here. I would be so grateful for your prayers, as my parents and I need much wisdom. Here are ways you can pray:

• Clear communication and the ability to explain my symptoms and current situation.
• Wisdom for both the doctor and us regarding how to proceed from here in so many areas including testing, eating, and other details. We are also not sure whether to stay with him or to consider a doctor at Georgetown whom we saw for a second opinion.
• Peace and rest in the Lord's care and control.
• Sleep tonight and grace to press through my symptoms tomorrow. Have been feeling so bad today and also feel like I'm coming down with a virus or possibly strep. 
• That God would bring healing in His perfect time and display His power and glory in keeping me in the meantime.
• Hope, greater faith, and joy in praising Him while I wait. He is worthy of it at all times!
• For His truth to renew my mind and guard my thoughts, keeping me from fear.

Thank you all so much for your prayers. Since I last posted, I have been able to eat numerous times but my body is having difficulty processing, digesting, and swallowing. I need to persevere in this area as well as with drinking but it can be so difficult. God has been so good to help me through your prayers.

I look forward to sharing with you how He answers once again! Thank you for helping me fight onward and cling to the One Who holds onto me even when I cannot. So grateful. 

My health may fail, and my spirit may grow weak,  
but God remains the strength of my heart;

He is mine forever. - Psalm 73:26