How Long, O Lord...?

...Will You forget me forever?
How long will You hide your face from me?
How long must I wrestle with my thoughts
and every day have sorrow in my heart?
How long will my enemy triumph over me?

Look on me and answer, O Lord my God.
Give light to my eyes, or I will sleep in death;
my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.

But I trust in Your unfailing love;
my heart rejoices in Your salvation.
I will sing to the Lord,
for He has been GOOD to me. - Psalm 13

Sometimes we feel forgotten. Sometimes it seems like the sorrow will never end. That it has taken up a permanent lodging place inside with no intention of leaving. Sometimes it seems that the enemy will never be vanquished. That the tormenting thoughts that all is lost, hopeless, or doomed to only worsen will erode us to the point where we feel powerless to wrestle with them one moment longer.

What do we do when it is so dark we cannot see? What if the darkness is so great that our enemies rejoice in our downfall and we never see the light again? What do we do when all inside and around us screams out:

Give up!
Stop believing!
It's hopeless...

We sing.
We sing of the Lord's "unfailing love."
We sing of His endless goodness.

Once again, it's Thanksgiving, and Christmas is waiting around the bend. I never thought that a year later I would find myself still unable to share in the meal, drink a cup of tea, or decorate the house. But this is where I find myself again. I could curl up and dwell on how much I'm missing out, or I could sing. I could recount His goodness. His mercies. His endless, unfailing, unrelenting, steadfast love.

Love. Unshakeable and immoveable. That is what has marked this past year. Yes, pain. Yes, suffering. Yes, questions. But also a love which has pursued me through it all. Which has never stopped providing just what I need. Which has proven to be unchanging even when I forget it's there. Even when I fail to acknowledge its existence. I truly have more than "10,000 Reasons" to praise Him. 

And so this Thanksgiving, I am looking back on a year filled with the unfailing love of the Lord, and because this love has never left me yet, I can trust it will not leave me tomorrow, or the day after, or the day after that. It was a love that cost the very life of God's only Son. Do I think He could ever forget the ones He purchased at such a high cost? How quickly I forget but He does not.

And so I am asking Him to help me sing these words today and each day to come:

The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

You're rich in love, and You're slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find....

Sing to Him, sing praises to Him; Speak of all His wonders.
- 1 Chronicles 16:9

November Update

Hi friends,

I am sorry that I have allowed these updates to fade away lately. I just have not had the physical ability to write much and have been relying on Facebook for sharing updates, since it is easier, but I know not all of you are on there, so I wanted to try to put something up here so you wouldn't be out of the loop for so long. Thank you for your patience.

A lot has happened since I last updated. I have seen my new doctor in Virginia a few times as well as her nutritionist, but my body has just been too sick to implement all the things she has suggested, which include a number of supplements to deal with pathogenic bacteria in my gut as well as healing inflammation and restoring a good balance of healthy flora.

She also thought I could have a rare mitochondrial disease that matched all my symptoms, so she sent me to a neurologist at Children's Hospital who specializes in this disease. The tests recently came back normal. I am grateful for that, but they would like to look into some other mitochondrial diseases at my follow-up appointment in January.

The past few months have been filled with learning more of the meaning of endurance, and I my sole source of nutrition has been through my TPN (intravenous nutrition) which runs for 12 hours each night. I am grateful that God is using this to keep me alive right now, yet many of my symptoms and pain have only increased with it. My weight is holding and making small, gradual gains, but I am feeling worse in so many ways.

My Hopkins doctor does not have any answers for me, and as I have prayed about what to do, God has brought several other practitioners across my path. One in particular has been able to help people who have tried everything else with no success, but she is incredibly busy (working 120+ hours a week), and we have not yet been able to connect. In the meantime, I continue to believe that implementing the GAPS Diet would be beneficial to me, although it is unlikely to solve all my issues. Unfortunately, it's hard to tell if my body is ready for it yet, as I have not been able to tolerate broths or anything for the past month or more. Despit this, a kind friend spent a great deal of time researching various certified GAPS practitioners around the country/world, and she compiled all that information together for me. I had a wonderfully encouraging conversation with one of them earlier this week, and she has offered to help me at no charge by phone & email. I am so grateful for this provision and for her care for someone she does not even know. I am trying some of the steps she has suggested and hope to be able to make some progress with her. At the same time, I am still praying that I would be able to get in touch with the other practitioner to see if she will be able to help prepare my body to be successful with something like GAPS, but if that door doesn't open, then God will provide another way.

When I was in the hospital this past August, I had my G-J tube removed and replaced with a simple G-button tube which could be used for crushing supplements and flushing them into my stomach, etc. The tube developed some type of bacterial/fungal overgrowth a month or so ago, so I went to Hopkins at 6:15 this morning to have that replaced. It was challenging but went fairly smoothly, and I am grateful to be back.

(Interjection - I know this is a very disjointed post, and I apologize for that. So much has happened since May when I last wrote a real update that I'm finding it difficult to know what to say and how to say it.)

The bottom line is that I'm basically at a place where I am dependent on TPN to stay alive since my J-tube feedings grew too difficult for me to tolerate, but I am finding the majority of my symptoms continue to remain or worsen with each passing day. My TPN is high in dextrose (corn sugar) which was found to be one of the foods to which I am most intolerant/sensitive, but they are not able to adjust this unless I am able to start getting in extra calories by mouth. I had thought to be on TPN for two weeks at most and hoped to begin tolerating broths/foods with the help of my new doctor, but that hasn't materialized, so I find myself in a place of continued waiting on the Lord's deliverance while also fighting each day to do what I can to make progress in any way possible.

I have been amazed to see His sustaining power, day after day, especially in the moments when I didn't see how another step would be possible. He is so very good. He provides again and again.

I continue to greatly need your prayers for endurance, hope, healing, and practical wisdom for the path ahead. Thank you for how you help lift the weight and carry it with me. I know that one day all this will be a distant memory or not even remembered when compared to the glory that will be revealed (Romans 8:18). He will help me hold on until that Day.
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"Now I know that the Lord saves His anointed; He answers him from His holy heaven with the saving power of His right hand. Some trust in chariots and some in horses, but we trust in the name of the Lord our God." - Psalm 20:6-7

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