Samuel David in Pictures

Newborn

27 February, 2018

4 lbs. 12 oz.

1 Month Old

27 March, 2018

6 pounds

2 Months Old

27 April, 2018

7.5 pounds

3 Months Old

27 May, 2018

8.5 pounds

Our brave little heart warrior continues to fight on!  And we continue to ask for your prayers.  Samuel's belly has continued to increase in size, despite not being fed, and the doctors have had a hard time agreeing on a treatment plan for Samuel.  We are having another meeting tomorrow with hopefully more of the doctors on Samuel's care team.  Please pray that God would give wisdom to the doctors, Seth, and I, and that He will grant clarity through this meeting.  We are still praying for miracles to unfold with Samuel's GI tract, and, above all, we are praying that God will receive glory through whatever story He chooses to write here.  Some of the doctors we are working with have made comments pertaining to the fact that they have never seen a miracle - but they failed to realize the one right before their eyes.  Samuel David's life is a miracle!  His 91 days here on this earth are more than the doctors we saw while I was pregnant thought he would have.  They are more than the doctors who worked with him in his first few weeks of life thought he would have.  Samuel David is a living miracle!  We don't know what else God has in store, but we have seen his goodness over and over again.  And for that, we will praise Him!  Come what may.

I believe that I shall look upon the goodness of the Lord in the land of the living!
Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!
Psalm 27: 13-14

This is His story, and it is all for His glory!

Trusting God's Plan

I know I say it a lot, but thank you.  Thank you for praying.

God hasn't given us all the answers we were hoping for this week, but we know that He has heard!  And we are confident that He is still working!

God gave us a special little blessing this week as Samuel began to recognize and play with his toys!

Not many doctors were able to show up to the meeting Monday morning, and important information about the biopsy results wasn't shared until after the meeting, so we didn't have those results to guide our discussion.
The biopsy results came back inconclusive, so there are still no cut-and-dry answers as to next steps.
Since getting the results back, there have been differing opinions about further testing for Samuel, as some is more invasive than others, and none of it is likely to give conclusive results.
Samuel's girth is still measuring large, his x-rays still show his intestines full of air, and he hasn't had that big dirty diaper that we've been waiting on.

All of these things might make it sound like our prayers failed - like God didn't listen.  Maybe prayer doesn't change things...

BUT the story doesn't end there!

Throughout the week we have been able to talk to all of the doctors involved in the decisions.
One rather non-invasive test was done on Tuesday, and it was able to rule-out one disease that can cause this issue.
Samuel passed a small smear of mucousy stool Thursday night (we are talking minuscule in the grand scheme of things, BUT more than he has had unassisted in the past 5 weeks)! And his bowel sounds have been noticeably louder since then!
I have been listening to a sermon series on prayer, and this week has brought up discussions between Seth and I about prayer.  God has been using this situation to teach us a lot about the purpose of prayer!  (Stay tuned for a blog post about that!)

God is working.  Not at our pace, but why should He?
He hasn't given all the answers that we want, but why would He?

If God were to grant us everything we asked, in just the way we asked, right when we asked it, then we would be gods!  But we're not (thank goodness!).

Does prayer work?  Absolutely.  Because prayer is "simply" talking to God, and I guarantee that He hears every word that we say, as the Holy Spirit intercedes for us.
Will we always get the answers that we want?  No.  But that doesn't indicate a lack of faith or a God that doesn't hear.  It simply shows that God is omniscient - He knows better than we do - and He is sovereign.  That is a scary concept if you don't also believe that God is good - but He is!  And we know that He intends us no harm.  All of God's plans are for our ultimate good and His glory.

"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'  Then you will call on Me and come and pray to Me, and I will listen to you.'"
Jeremiah 29:11-12

So we will continue to pray.
Pray that things will begin to really move this weekend, and that we will see results.  There is another more invasive test scheduled for Tuesday, and based on the results of that test they will likely schedule an ileostomy soon after.
That's the plan if nothing changes.
But we are praying that things will change!  We are praying that Samuel's bowel sounds will continue to get louder, and we will see more stool in his diapers throughout the weekend!
Please continue to pray with us as we trust God to do what is best.

As we always say...
This is His story, and it is ALL for His glory!

48-Hours of Prayer - Join us!

Monday morning we have a meeting with Samuel's team of doctors to discuss next steps. The last time we had this "family meeting" was a little over 4 weeks ago when it was decided that we would take an extra 3-4 days to give Samuel a G-tube and do a Nissen fundoplication before trying to extubate. Then we would be on our way home 2-3 weeks after the surgery! But that didn't happen...

Instead, here we are 4 weeks after that surgery, and Samuel still has not been able to tolerate feeds. His stomach has had a hard time absorbing food, and his intestines haven't been moving anything along. His intestines are now so full of gas and distended that they are afraid to try feeds again for fear of causing a perforation of his intestines. For most of this time the doctors have been stumped as to why this is happening, especially since Samuel seemed to tolerate his feeds so well before surgery. We are now waiting on the results of a biopsy that was sent into a specialized lab for testing, due to an abnormal appearance of the cells. Hopefully we will have those results by Monday. Based on the results of that biopsy, we may be looking at another GI surgery of some kind for our brave boy...

That's the medical side of things.

The non-medical perspective?

Samuel's GI tract is broken. Only God knows the true cause of what is going on. God, the Great Physician, can heal in an instant. Would you join us in praying for that healing?

We are asking y'all to help us cover Samuel in prayer for 48 hours straight, starting at 9am (CST) Sunday, until 9am (CST) Tuesday.
You can do this by clicking on this link:

https://www.signupgenius.com/go/60b084babac2ca0fa7-pray1

I know some of the Sunday time slots will be during church for many of y'all. Would you consider signing up with your Sunday school class, small group, or church? There will possibly be some big decisions being made by the doctors on Monday, so we want to begin by covering the 24 hours before that in prayer, as we ask for healing and wisdom.
Here are specific things to pray for:

1. Pray for healing - Just as God changed the diagnosis of Samuel's heart after the first week of his life, we know that God can change whatever diagnosis is given for Samuel's GI problems! We are praying for COMPLETE healing! That normal function and motility would return to Samuel's stomach, intestines, and colon. That any nerve cells that may be missing would be restored!
2. Pray for wisdom - There are so many doctors working on Samuel's case, and some times there are varying opinions. Please pray that God would give wisdom to each of the doctors, and that He would unify them on the best plan of action for Samuel.
3. Pray for Samuel's lungs - The past 4 weeks have been hard on Samuel's lungs because his whole GI tract is distended and pushing up on them. This, along with his already-diagnosed restrictive lung disease, has greatly decreased his lung capacity, which causes him to need to breathe faster and receive extra support from the ventilator. Please pray that God would continue healing and strengthening Samuel's lungs so that they will be ready for extubation when the time comes.
4. Pray for grace - Many doctors that we have talked to over the past several weeks have said over and over again, "I'm frustrated as the doctor, I can't imagine how frustrated y'all must be as the parents!" While it is a frustrating situation, Seth and I have submitted to trusting in God's timing. Pray that we can use those opportunities to convey God's grace to the doctors, so that we can be lights to those around us.

Don't forget to go to the link above and choose a time slot! And please feel free to share the link for this sign-up!

As always, we are so grateful for each of you.

This is His story, and it is all for His glory!

His Eye is on the Sparrow... Even in Delaware!

I haven't given a detailed update on Samuel recently because, honestly, there is no update. We are just about in the same place as we were almost 4 weeks ago...
Samuel's GI tract has continued to be silent since his G-tube surgery. They have tried small trickle feeds off and on over the past 4 weeks, but have had to shut them off every time due to an increased girth, milk backing up, and still no stool...It has been 4 weeks since Samuel had a dirty diaper. I never thought I would pray so hard for a diaper!  But that's what we need.
They have done several tests on Samuel during this time, and everything seemed to come back normal, until the most recent biopsy. There was something a little different about his biopsy, but they weren't able to diagnose what. They sent it off to another lab on the other side of the county to try to get a diagnosis, and possibly give a direction on treatment for Samuel. So far the doctors have been stumped as to why Samuel seemed to tolerate full feeds for almost 2 weeks before surgery, and now has not been able to tolerate any feeds. We are praying that this biopsy may reveal some answers, and we are praying for God to provide healing!

Even though the doctors are at a loss, we know that God is not perplexed by any of this. We have every confidence that He can heal Samuel in an instant! It is so reassuring knowing that we have full access to the Throne of the One who knows the answer to the very mysteries that leave us dumbfounded and confused. There is no need to worry!

Look at the birds of the air; they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?

Matthew 6:26

Are not two sparrows sold for a penny? And not one of them will fall to the ground apart from your Father. But even the hairs of your head are all numbered. Fear not, therefore; you are of more value than many sparrows.

Matthew 10: 29-31

I have been reminded lately that God cares about every part - every little detail - of His creation. He cares about even the littlest sparrow, which may seem to have no worth to us. If God cares about such a small creature, how much more does He care for each one of us? As the old song goes....

Why should I feel discouraged, why should the shadows come,

Why should my heart be lonely, and long for heav'n and home,

When Jesus is my portion? My constant Friend is He:

His eye is on the sparrow, and I know He watches me;

His eye is on the sparrow, and I know He watches me.

I sing because I'm happy, I sing because I'm free,

For His eye is on the sparrow, and I know He watches me.

"Let not your heart be troubled," His tender word I hear,

And resting on His goodness, I lose my doubts and fears;

Though by the path He leadeth, but one step I may see;

His eye is on the sparrow, and I know He watches me;

His eye is on the sparrow, and I know He watches me.

I sing because I'm happy, I sing because I'm free,

For His eye is on the sparrow, and I know He watches me.

Whenever I am tempted, whenever clouds arise,

When songs give place to sighing, when hope within me dies,

I draw the closer to Him, from care He sets me free;

His eye is on the sparrow, and I know He watches me;

His eye is on the sparrow, and I know He watches me.

I sing because I'm happy, I sing because I'm free,

For His eye is on the sparrow, and I know He watches me.

So we will keep trusting. We will keep waiting. We will refrain from sitting in discouragement. Because we know that whatever happens, God means it for our good and His glory.

And we know that for those who love God all things work together for good, for those who are called according to His purpose.
Romans 8:28

Here are some specific prayer requests:

• GI tract - Pray that God will restart Samuel's stomach and intestines! They have tried several medications and other methods, but nothing has worked yet. The only thing indicating that there may be some progress is that he went from having no bowel sounds after surgery, to now having some bowel sounds - still not back to what they were before surgery, though. Please pray that this will not be a long-term issue for Samuel.
• Feeds - Pray that Samuel will be able to tolerate feeds again soon! This, of course, is dependent on his GI tract working. With IV nutrition, Samuel cannot grow as quickly as he would if he were getting milk. Also, long-term IV nutrition can cause problems with the liver. 
• Lungs - Pray that Samuel's lungs will not lose ground during this time, but that God will actually use this time to further heal his lungs! Because Samuel's intestines and stomach are distended, they are pushing up on his lungs. Samuel already has a small thoracic cavity that crowds his lungs, but now his lungs are really competing for room. Instead of being at the stage of prepping for extubation, the doctors have actually gone up on the ventilator settings during this time because Samuel was having to breathe rather fast to compensate for the decreased air-capacity due to overcrowding.
• Sedation - Pray that Samuel's body will continue to do well as he comes off sedation, and that the doctors will be able to find the right balance of sedation while he is still intubated! Samuel is so close to being off narcotics! We are praying for his withdrawal symptoms to remain minimal. He is still on a few other sedation meds, and the doctors are having to find a balance of weaning him off, but not weaning him too much while still intubated.
• Breathing tube - The breathing tube that goes down to Samuel's lungs, through his nose, is a source of irritation for him. He often gets upset because of it, and we can't blame him! The doctors were all hopeful that he would be off the vent by now, but because of the GI setback we don't have any kind of timeline for when that might happen now. Since Samuel is now having a lot more awake time, and is more wiggly, they are having to re-tape the tube at least every-other day. Pray that the tube will remain in place for as long as needed, and there won't be any accidental extubations!

And PRAISES!

• Heart - Samuel's heart, which was such a big concern before he was even born, is functioning well!  Samuel's recovery from his heart surgery was pretty textbook, and everything seems to be functioning well right now!
• Holding - Because we have been here so long (7 weeks!) and there is no longer a timeline for getting Samuel off the vent, the team here has become more open to allowing us hold Samuel!  It still hasn't happened much, but Seth and I have both been able to hold Samuel twice now since being here in Delaware! Samuel LOVES being in our arms. It always calms him and is a much-needed bonding time for our hearts.
• Eyes - With the decreases in sedation, Samuel has more awake periods and is more alert! He loves to stare into our eyes, and to look at the light coming in from the window! We enjoy reading books and singing to him, and we have found out that he is a little ticklish! Seeing his face so happy and content as he looks at us with wide eyes - I can't tell you what that does for us!
• Encouragement - We have received so many encouraging emails and letters. We have heard from so many people who are passing along Samuel's story. So many people who are praying for us. We have even had some visitors in Deleware! We are so grateful for all of this!

Please drop us a note at HisStoryHisGlory@gmail.com

We would love to hear from each of you!

This is His story, and it is all for His glory!

The Many Faces of Mother's Day

"It's your first Mother's Day! How exciting!"

A well-meaning comment that I have heard numerous times over the past week...
I smile and nod. Thank them for thinking of me. But all the while my heart aches. My journey of motherhood has been filled with so many tears, and so much grief.

This isnt my first Mother's Day...

Last year on Mother's Day my grief was still so fresh and raw. It had been less than 2 weeks since we had said "goodbye" to our second child. I spent a large part of that day in tears, mourning both of my children that I never got a chance to hold. Because a life is a life, no matter how short, and Penuel and Jahleel made me a mother.

This year? There is joy. No doubt. Looking at Samuel's precious face every day brings me joy beyond belief!

Some sweet night nurses in the CICU helped Samuel surprise me with this little project!

But there is also a deep sense of mourning...
This year I am mourning what I thought motherhood would look like. I am mourning the fact that I can't hold my son today. I am mourning the fact that we can't celebrate with family at home. I am mourning the fact that my precious boy is not well. I am mourning the countless diapers I have not been able to change, the food I have not been able to give my son, the beaming joy of early motherhood as you show off your baby...
My family has a tradition of going to a park for a picnic on Mother's Day, but this year I am mourning the fact that my 10 week old son has never felt the freah air of being outside.

Motherhood is not at all what I pictured it would be.

I have experienced the highest of highs

The first time I ever got to hold Samuel, when he was 3 days old!

And the lowest of lows

The day Samuel coded, and we almost lost him...

But I wouldn't trade my days with Samuel for the world.

The past 2 years have opened my eyes to the many faces of Mother's Day. It's not always a joyous occasion. For many, Mother's Day is full of painful memories and empty arms. It's a reminder of what could be, but isn't. It's a day that makes many women want to hide under the covers, rather than facing the agony of not being recognized for what they truly are.
Whether you have lost a child, have not been able to have children, have a child that has redefined motherhood for you, or have some other pain in motherhood, your grief is valid. It's okay to hurt on this day, and not act like everything is okay. And when you're hit with well-meaning, but unwelcome comments, it's okay to cry.

But can I encourage you to try to find some joy in the journey? As painful as it may be. God does not have us in this life to sit in misery. While we may have to go through unimaginable sorrow at times, and we may never fully understand why, I believe that God always gives an equal measure of joy.

Last year I found that joy in knowing that I would see my precious babies again some day. Although that didn't take away the grief I felt, it did leave me with hope at the end of the day.
This year I am finding joy in sitting by the bedside of my precious son, staring at his face. While this doesn't take away the pain of the fact that he is in the hospital, and this is one more day that he is not in my arms, it does remind me to cherish every moment, because these are moments we didn't know if we would ever get to experience.

These things I have spoken to you, that my joy may be in you, and that your joy may be full.

John 15:11 

This is His story, and it is all for His glory!

The Hard Truth

The truth?
This is hard.

I don't feel like sharing our story with the world today, because today I don't feel strong. Today I just want to curl up in MY bed at HOME with Samuel on my chest - no tubes, no needles, no medications...but instead I'm sitting in the hall of this hospital, 1,200 miles from home, unable to see our precious son because they said we had to leave.

Do you want to know the hardest part about this whole journey? It's that someone can tell me when I can and can't see my son.
Because Samuel is in the CICU, he doesn't have a private room - he has never had a private room. This means that we are not allowed to sleep by him. This means that if something else is going on in the unit, they are allowed to tell us that we have to leave. This means that every morning when we show up and ring into the unit, my heart starts beating a little faster as I fear that they will tell me again, "you can't see your son right now".

Father God, this is too much!

This morning when we arrived Samuel was so wide-eyed and happy! We talked with him and loved on him for about 30 minutes...before being told that we would have to leave because they needed to do a bedside procedure elsewhere in the unit.
My heart dropped.
I got a lump in my throat.
The tears started to flow.
But this is our special time with him!
I just want to wrap my arms around him and take him home...where no one can tell me that I can't see my son.

Please don't get me wrong. I am NOT upset at the doctors or nurses - I know that they are doing what they need to do. I am simply allowing you to see a glimpse of how painful this journey is, as a reminder that Seth and I need prayer too.  Our hearts are broken over and over again. We feel discouragement trying to creep in day after day. We often fall prey to asking the unanswerable questions that are burdens on our weary souls.

This morning was also hard because as soon as we walked in the unit we could see from across the room that his feeding pump was turned off. Another failed attempt at getting Samuel the nutrition that he needs...another day of waiting...another day of learning what it means to trust God when none of this makes sense.

The Lord will fulfill his purpose for me; your steadfast love, O Lord , endures forever. Do not forsake the work of your hands.

Psalms 138:8

This verse has been shared with us over and over again during this journey. It reminds us of God's promises to us...

The Lord will fulfill His purpose for Samuel David.
The Lord will fulfill His purpose for Seth.
The Lord will fulfill His purpose for Hannah.
The Lord will fulfill His purpose for our family.

These are words of comfort because I know they are words of truth, even though I don't know exactly what His purpose is. We know that God's love for us endures forever, and that He has not, and He never will, forsake us.

Please continue to pray that Samuel will be able to handle feeds again soon. We long for the day when we walk in and his feeding pump is still on!

For now, we are just trying to enjoy each and every moment spent together!

This is His story, and it is all for His glory.

Music Therapy

One of my favorite things back home is when Seth pulls out his guitar.  Sometimes I just sit and listen while he plays, some times we sing and worship together.  It's always been something that we both enjoy, and it lifts our spirits.  But for the past 3 months we haven't had a guitar with us, and we had no idea how much we missed it - how much our weary souls needed that!

On Friday Samuel got a visit from the music therapist.  I had no idea that was even a thing, much less that they would come to visit a 2 month old baby.  She helped us record our voices reading books, so that Samuel can hear our voices even when we are not by him at night.  And when she found out that Seth plays guitar she went and found one that he can hang onto during our extended stay in Deleware!

That evening when Samuel opened his eyes, Seth played his guitar and we sang and worshipped.  Samuel stayed wide-eyed for almost 2 hours listening to the music and watching our every move!  Which is a big deal for a little guy on so much sedation.

We ALL needed music therapy.

Samuel was mesmerized the entire time.  He stared deeply into our eyes and gave us some smiles!

As soon as Seth stopped playing, Samuel's lower lip puckered out and he started crying!  It was another one of those special memories with our brave little boy that God so graciously gives to keep us going.  Something for us to hold onto and look back on in the midst of the hard days.

And we have had hard days...

Samuel is now 19 days post-op for his G-tube surgery, and we are still praying for a dirty diaper.  The doctors are stumped as to why Samuel's digestive system doesn't seem to have woken up after surgery.  The surgeon even said he has never seen it take this long.  They tried feeding him again on Sunday, but it only lasted a few hours before they realized everything was just backing up in his stomach.  This surgery which was almost an after thought - "by the way, we should go ahead and give him a G-tube before we try to extubate him" - has now added almost 3 weeks to our timeline.

Right now it is so easy to be frustrated.  It is so easy to get discouraged every morning when we walk in and hear the same report - no dirty diapers, intestines are still distended...another day gone by without progress.  Another day added to our time in Deleware.  Another day...

We know that God has ordained each of these days.  We are confident that He is still writing this story, and He is still in control!  So there is a reason.  In the meantime we are trying to focus every day on what we do have, rather than what we are missing out on.  We are so thankful for each of the little blessings God has provided along the way to keep us going - such as music therapy!

Please continue to pray for Samuel's stomach and intestines.  They have run all of the normal tests, and have not been able to find a cause.  All of the scans have looked normal, which is why everyone is stumped as to what is going on.
Pray that the doctors will have wisdom on what steps to take, and when to take them.
Pray that Samuel is still able to continue gaining weight without actual food (he is back on IV nutrition).
Continue praying for the healing and growth of Samuel's lungs, as the plan is still to try to extubate him once his digestive issues are figured out.

This is His story, and it is all for His glory!

Extra Time

Time always seems to go faster when you're taking steps forward, when you have goals that you keep checking off your list.  But when things are at a standstill - when nothing seems to be moving forward - time seems to stand still as well.  That's where we've been living for the past 12 days since Samuel's G-tube surgery.  His digestive system still hasn't woken up.  We have been waiting and praying.  Pretty much everything medically has been put on hold while we wait for Samuel to be able to eat again.  The days are slowly ticking by...

Extra time.

God has graced us with extra time in the hospital.
Extra time spent by Samuel's bedside without the distractions and busyness of every day life.
Extra time to sit and consider the wonders of God.
Extra time to meditate on God's words.
Extra time to spend strengthening our marriage.
Extra time to allow Samuel's lungs to heal and strengthen.
Extra time to find and collaborate with doctors in Arkansas.
Extra time to shine God's light here in this hospital.
Extra time....

We didn't pray for extra time - we most certainly prayed for the opposite - but God has a way of knowing what we need, despite what we may think we need.  Now it is our responsibility to use this extra time wisely.  Instead of letting ourselves sit in our discouragement, instead of letting ourselves focus on what we could have, it is now our job to take the extra time God has given us away from home, and use it for good.

"For it is God who works in you, both to will and to work for his good pleasure."
Philippians 2:13

Prayer Requests:

• Samuel hasn't eaten since April 22nd.  Pray that God will heal his digestive system, and that Samuel's body will be able to handle the milk.  Pray that God will give the doctors wisdom as they decide when to begin feeding Samuel.
• Because Samuel has a small thoracic cavity, which already hinders the function of his lungs, the dilation of his intestines has been squishing his lungs even more.  Pray that Samuel's lungs will still get a chance to heal and strengthen during this time, despite having to work harder.
• The next step after Samuel is able to start eating again is to get him off of the ventilator.  Pray that this extra time has been just what Samuel's lungs needed to be ready for that HUGE milestone.  He has been on a ventilator his whole life!
• The one change they have been making during this time of waiting is working on weaning Samuel's sedation.  Please pray that he will remain consolable when he gets upset, and that he wouldn't have any signs of withdrawals.
• Please pray that Seth and I will be intentional about using our time wisely.  Pray that we will draw closer to God, and closer to each other during these days of waiting.

Praise:
Seth and I both got to hold Samuel this past week!

We have not been able to hold him since being in Deleware, so it had been one month to the day of when we last held him!

Unfortunately this still won't be a regular occurrence for now, and we may not get the chance to hold him again until after he is off the ventilator, but we are so thankful for this special, unexpected blessing!  It was so needed for all 3 of us.

Not only that, but Samuel also started smiling at us this past week!  There are no words to describe the feeling of seeing him smile, despite all that he is going through.  We know this is a direct answer to our prayer for Samuel to be able to feel loved.

Thank y'all so much for continuing to follow our journey, and especially for your continued prayers!
If you would like to send us a prayer, verse, or note of encouragement you can email us at HisStoryHisGlory@gmail.com
We LOVE receiving encouragement from y'all!  It helps to keep us going.

This is His story, and it is all for His glory!

How long, O Lord?

There are days when my soul cries out in unison with David.

How long, O Lord??

We gave this story to God long ago because we always knew He was in control.  We knew that God could bring healing to Samuel's body at any point along the way.  We still know that He CAN.  But will He?

These past 9 weeks as I have stared at my precious son - covered with tubes, PICC lines, IVs, bandages, and monitors - my heart has ached more than I ever knew possible.  Everything inside of me wants to scream...
He shouldn't have to go through this!
He shouldn't have to hurt!
He doesn't deserve to be dependent on medications!
It's not fair to deny him the comfort of his mommy and daddy's arms!
God, please don't let him be in pain!  Please take away his discomfort!

Over and over again I fight the urge to scoop him up in my arms and take away all the tubes and lines that he shouldn't have to deal with.  For 9 weeks now I have suppressed almost every motherly instinct that I have, and it hurts.

This is painful.
This isn't what life should look like.
He shouldn't be the one suffering!

My precious baby boy has already been through more medically than many people will go through in a life time.  Every day I wish I could make it go away.  Seth and I often talk about the day we get to take him home and finally snuggle him, as he deserves...
The day we get to take him outside for the first time.
The day we get to take him to church.
The day we get to hear him cry again...

Why, oh why, are we still here?!

We have been faithful!
We have prayed!
We have remained positive!
We have dealt with unknowns and heartache and bad news for over a year now, since losing our first child.
When will we get a break??
When will we get the joy of holding one of our children any time we choose?

HOW LONG, O Lord??

This question runs through my mind as I cry bitter tears.  Seth and I see it in each other's weary eyes at the end of each long day.  How long must we go through this anguish? How long must we pray for our son to feel the joy of a normal life? How long until we can take our son HOME?

How long, O Lord? Will You forget us forever?

But then I feel it.  It washes over me at the most unexpected times...

PEACE

In the midst of my deep sorrow...

PEACE unexplainable

When I am so undeserving and allowing myself to wallow in my suffering...

JOY

Sometimes for a fleeting moment, but always with a memory I will cherish...

JOY unspeakable

God has not forgotten us.  He has been with us from the beginning.  He has been guiding us every step of the way.  Where would we be without Him??

Those moments of deepest sorrow?
He was there.
The countless times we have wept bitter tears in each other's arms?
He was there.
The days when I stare at Samuel and angrily question, "why him?"
He is there.
For every difficult moment, He has furnished an equal measure of peace and joy.

We could choose to be angry that we have to go through these circumstances.  We could choose to take that out on God.  But we are choosing every day to instead find purpose in this pain.  We know that God has written this story for a reason, and we also know that He hurts alongside us.  He does not enjoy our pain, it is because of our fallen world - brought about by the evil we have all committed - that we must endure pain in this life.  But there is a redeeming quality.  If we give our pain to God, we KNOW that He will redeem that pain in a way more beautiful than we could ever imagine!  We have prayed over and over again that His name would be glorified through Samuel's life, and we are confident that will happen!  Samuel's life has made such an impact already, and for that we are thankful.  That brings us joy!  And it makes the most painful of days just a little easier.

How long, O Lord?

However long it takes to bring His name the most glory.  We know that He will continue to provide us with unexplainable joy and peace for the journey, and that's why we can boldly say:

This is His story, and it is all for His glory!