New Hardware

Judah's ultrasound showed no change. That's good and bad. Good, because there is no abscess or other negative change to his kidneys, ureter, and bladder. Bad, because there's no positive change either. After several weeks of antibiotics - over 7 days of super strong ones - there should be improvement. Urology has decided that his kidneys need help flushing out the infection. Tomorrow at 1:00 the Interventional Radiologist will insert a percutaneous nephrostomy tube from his back into his kidney. That will then drain the puss and infected urine from his kidney. [Sorry to those of you with weak stomachs.] Once he's without fever & Urology sees that the tube is draining well, we can go home. It's going to be a few days...but hopefully not as long as the last stay. I don't know for sure, since I haven't asked his urologist directly. He'll keep the tube until surgery - something I'll learn how to care for - and continue IV drugs at home. Surgery is still set for the 12th, and they're hopeful that won't change. They're also optimistic that once the obstruction is removed he won't keep getting sick. No guarantees.

I'm sad about all this. It's a lot to process right now, especially while I'm tired. I'm disappointed that I'm going to miss Ralston's National Night Out tomorrow night with my family. It's something we look forward to every year. I had thought about asking a friend to come sit with Judah so I could go, but because of the procedure tomorrow - which includes intubation and anesthesia again - and the new tube, I just don't feel comfortable doing that. Ugh. Pursuing praise is becoming a little more challenging as the day wears on.

Right now I'm thankful for:
All the meals friends are providing for us...
Grandma calling on the hospital phone this morning when my cell was almost dead...
Jared...
Judah's ability to sleep well during the day here...
Nurses that I have a relationship with now, and can joke around with...
Orders to be able to take Judah off the floor so we can go outside and explore a little bit...
Sunshine...
The privilege to stay here and care for Judah as much as I'm able...
A computer that I can write on...
Confetti cookies...

OK, so not necessarily in order of importance, but those are the first 10 things that came to mind.

Pursuing Praise

Psalm 9:1-2
I will give thanks to the LORD with all my heart; I will tell of all Your wonders. I will be glad and exult in You; I will sing praise to Your name, O Most High.

13:5-6
But I have trusted in Your lovingkindness; My heart shall rejoice in Your salvation. I will sing to the LORD, Because He has dealt bountifully with me.

16:11
You will make known to me the path of life; In Your presence is fullness of joy; In Your right hand there are pleasures forever.

27:6b
I will sing, yes, I will sing praises to the LORD.

Discouragement is knocking at the door. I can feel it. I know that if I don't actively pursue an attitude of praise, it will break down the door and overwhelm me. I'm reading Psalms of praise and joy this morning, choosing to trust God and believe that He is exactly who He says He is. I fear that if I choose anything else, I'll be swallowed up; because there are no answers right now. I choose to respond to Christ's working in my heart and believe that He is here, He is in control, and His plan for Judah is perfect. I don't understand how a perfect plan can involve pain, but I know that God is only good and only right. I know that there is sin in the world, and so there is pain. But Home awaits us. Anyway, I'd love to hear your favorite verses of praise and joy! I need suggestions, and lots of them, because I don't know how long we'll be here this time.

Judah had a rough night, and spiked another fever this morning. As long as the Tylenol manages that, he feels pretty good and is smiley and playful. Not quite himself, but close. He has another renal ultrasound this morning. He's on 3 regularly scheduled antibiotics right now to cover a wide range of possible bacteria. His urine is full of bacteria and white blood cells; more so than it was during either of his 2 previous admits. The doctors (pediatrician & infectious disease) can't figure that one out. Not sure yet if this is new or still the active infection. At this point, surgery can still happen on the 12th, but that could change. Urology will be by later. There's not really much else to tell. There are no conclusive answers right now, and this whole thing isn't making much sense.

I'm frustrated by our total lack of control and even knowledge in this situation right now. God can see exactly what's going on. He can see every minute detail of Judah's complicated renal anatomy and disease. In one sense that's a comfort; but in another sense it's almost maddening, because He's not enlightening anybody else yet. So, this is where I remind myself that He is sovereign, and His ways and thoughts aren't mine. Which is a good thing. He loves Judah. He loves, loves, loves him.

Don't forget to send me verses. Please! Praise and Joy!

Same Song, 3rd Verse

Less than 24 hrs. after discharge I was on the way to the ER with Judah again. He woke up from his nap with a high fever. The rule with a central line is that a temp. over 100.4 constitutes a call to Home Health and a trip to the ER. So, here we are again. 4th floor. 3rd time in 5 weeks. They don't know exactly what's going on. Could be related to the infection he already has. Could be a new bug/new infection. Could be infection from the line. They've done urine and blood and are now waiting on cultures. Which means we'll be here for a couple days at least. Hopefully everything will come back OK and we can go home in the clear. His urine looks suspicious already, so I'm not sure... Thankfully Tylenol helped with the fever and he's sleeping peacefully right now. Also, extremely thankful for the line right now, which saves him from most lab draws in the arms/fingers, and an IV. If there's infection in the line it has to be pulled. And infection in the blood is very serious. I'm just not really thinking about that right now.

Actually, I don't really know what to think right now. I ache for Jared and my kids. Not even 24 hrs! I wish I had spent individual time with each of them today. Today would have looked different if I had known... I miss Jared; but what's hard is knowing how much he misses me, too. The man is an incredible husband and father - EXTRAORDINARY - but parenting alone while dealing with the stress of a sick child and an absent wife is draining. We're a team, and when we're apart we really feel it. I so wish I could be there. I'm doing OK with everything else. I think partly because Judah is doing OK. The fever is his only symptom right now. I think I might be in shock or denial. This is just weird. I'm sure the tears will come.

Two things that offer comfort, encouragement, and support: 2 girlfriends are providing meals Sunday & Monday night; and my best friend is having a hard time with this. I know that sounds weird, or even mean; but I would rather her hurt for and with us, than try to make it better. I told her that means she's invested, and genuinely loves Judah and the rest of us. That means a lot to me.

We're doing OK. We really are, but we do need you to pray.
*The doctors need wisdom and insight.
*We need to know what's causing the fever and how to treat it.
*Judah needs to be well enough to have surgery on the 12th.
*Jared (especially) and I need patience and compassion and extra doses of grace in dealing with our older kids right now.
*We also need to figure out creative ways to spend some quality time together.

Thanks for praying...again.

Prayer for Today

I was going to ask you to pray for 3 specific things this morning, but God has already answered! Judah's surgery was scheduled for 4:00, with the hope that he would get bumped to an earlier time. They are able to get him in at 10 this morning! Meaning, he doesn't have to go all day without eating/drinking anything, risking an IV later in the day for fluids (since #3 went bad yesterday); and he's more likely to be discharged today!

My prayer for today, besides being able to go home, is that there will be no complications during or after surgery. When Judah was intubated last Friday he ended up with strider, swelling and inflammation of his airway, that night prior to coming to the ER. I'm praying that he'll handle everything beautifully today.

Shortly after I came back to the room yesterday, after my time with the Lord, Judah's 4th yr. intern stopped in to go over some changes that had been made. I had suspected that she was a believer, but knew for sure when we ended up having this great conversation about the Lord. She pulled out this yellow 3x5 card that she always kept in her lab coat pocket. She had written Psalm 121 on it, and she gave it to me! I didn't even know how to respond to that, I was so moved and encouraged. That yellow card will always be close to me now.

Psalm 121
I lift my eyes to the hills - where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip - He who watches over you will not slumber; indeed, He who watches over Israel will neither slumber nor sleep. The LORD watches over you - the LORD is your shade at your right hand: the sun will not harm you by day, nor the moon by night. The LORD will keep you from all harm - He will watch over your life; the LORD will watch over your coming and going both now and forevermore.

He is ever watchful, mindful of every move, every breath; He misses nothing and nothing is a surprise to Him. He guides and protects. The God who supernaturally led Israel through the wilderness, is the same God who tends to my life and watches tirelessly. Every word is true for Judah, regardless of the situation or new circumstance. Praise the Lord!

Day 6

Psalm 56:8 (MSG)
You've kept track of my every toss and turn through the sleepless nights, each tear entered in Your ledger, each ache written in Your book.

Job 42:2 (NASB)
"I know that You can do all things, And that no purpose of Yours can be thwarted."

Lamentations 3:22-24 (NASB)
The LORD'S lovingkindnesses indeed never cease, For His compassions never fail. They are new every morning; Great is Your faithfulness. "The LORD is my portion", says my soul, "Therefore I have hope in Him."

Psalm 34:1, 4, 18 (NASB)
I will bless the LORD at all times; His praise shall continually be in my mouth.
I sought the LORD and He answered me, and delivered me from all my fears.
The LORD is near to the brokenhearted And saves those who are crushed in spirit.

Psalm 90:14 (NASB)
O satisfy us in the morning with Your lovingkindness, That we may sing for joy and be glad all our days.

Today was the hardest, most complex day I have had with Judah in a very long time. It was a day filled with advocacy, things going wrong, changing plans, confusion, changing variables, pain and sadness, frustration, and a sad hurting little boy. It started this morning with a fruitless hour of trying to place the picc line. I can't even keep all the details and happenings of today straight, there was so much that went on. It was a hard day for Judah and an emotionally, mentally, and spiritually exhausting day for me. Bottom line is that tomorrow Judah will undergo surgery to have a central line placed (functions the same way as a picc) so that we can go home and continue meds there. He's officially scheduled for 4:00, but the surgeons that are on tomorrow are going to try to get him in earlier. I find it ironic that he has to have surgery so that he can have surgery. We're already only 2 weeks away from the repair. I'm so eager to get it done so that he can finally move beyond all this. But I'm so not ready to bring him back here again.

Today was a day of tears. I haven't had a good cry in awhile, but... I made up for it this afternoon. It was needed. I went out to the rooftop garden on 2nd for some fresh air and privacy. I talked to my cousin on the phone for a few. Refreshing. Spirit-lifting. I was able to tell Jared everything that had gone on up to that point, and find relief in him sharing the burdens with me. Then I had some much needed time with the Lord. I needed Him so badly - quiet, solitude, aloneness with Him. I was hungry for His Word. Today I sensed that something spiritual was happening too. I can't put my finger on it, but there was something, and it was draining. I was so overwhelmed by everything I asked Jared what Scriptures came to his mind right then. He pointed me in the direction of Psalms and Lamentations and God took it from there.

Lamentations 3:22-24. I felt like I needed a new morning right then, because I wasn't sure if His mercies and grace were really going to be enough for the remainder of the day. But to read of His lovingkindness, His compassion, His faithfulness; to remember that He is sufficient and He is my Hope was the beginning of the satisfying of my hunger. I went to Psalm 34 next and froze at verse 1. I felt convicted and saddened by the fact that His praise has been far from my mouth this week; and my prayers have been an ongoing conversation centered on me, Judah, and our circumstances. God is a holy, awesome God who is worthy of my praise and adoration. I know that He is my Abba, Papa that I can come to as a child; but He is also the all-powerful, all-knowing, sovereign, just God - the only One who deserves all praise and glory. I am so not doing justice to what God communicated to my heart at the sight of that. Gr. God delivers me from my fears, He is near to us when we hurt. He. Hears. Me. He cares about every detail. I want Him to satisfy me. I want to be so content in Him, feeling so filled up with Who He is that I experience JOY regardless of any situation. I love what I found in Job. I was looking for something else and happened upon that verse. So straightforward. So simple. God, You can do anything; and Your plans and purposes can never be messed up. I love Psalm 56:8, because it's such a cool picture of God's loving, gentle concern for me. Those words don't even cover it. I mean, does it not just blow your mind that the Creator of the universe cares enough about you to pay attention to your sleep patterns, keep a record of your tears, and journal about every ache?! Seriously?! The God Who can crush entire nations, control the out-of-control weather, and hold the universe in place is like the brand new mother who memorizes every move her infant makes and can't get enough of his smell or the sounds and faces he makes. Only God is so much more in love with us than that, that it's an injustice to try to compare Him to anything!

Spending this time with Jesus, the Lover of my soul, allowed me to take a step back and gain a new perspective on the day and all it's troubles. He didn't "fix" anything, but He did fix me. At least spiritually. I'm still exhausted mentally and emotionally, but His grace was sufficient for today. And He gave me this time here tonight, which is just another place of quiet with Him. A place to reflect on what He did in and for my heart today.

I'm so tired. I don't know what's really going to happen tomorrow. We have a plan, but I don't know what God's plan is. I trust Him. I know He's only good and only right. I know He loves Judah far more than I can even comprehend. I know that He is here and He is in the details. He will go with Judah tomorrow. He can see every detail of Judah's anatomy. Better than that, He's the Designer and Creator of him. Today's troubles have almost passed into yesterday; and God is already in tomorrow waiting to hold our hands and walk us through it.

God. Is. Good.

So...

...this is me writing from the 4th floor. Every once in a great while I'm actually wrong about something. And this just happened to be one of those rare occasions. (And anyone who can't see the sarcasm dripping from these words just doesn't know me very well. You should give me a chance. I can be very nice...when I'm not being so sarcastic. Ha!) This was an unusual day, but productive in several ways.

Here's our interesting, activity-filled day in review (with a couple highlights from last night):

- Judah and I got bored last night, so I took him into the hall by the nurses' station to explore. He spent the next hour crawling and exploring as far as his little hands and legs would carry him. He was so stinkin' cute!

- IV #3 went in last night. #2 made his hand puffy so it was time to go. He's sporting the new one in his foot; a first for him. We hate IVs.

-This morning I went to the coffee shop as usual. I always get a white hot chocolate (love, love, love it!) and a muffin, but decided on a regular cup of coffee instead. The woman at the counter gave me my coffee for free! She said since she gave one to my husband yesterday (another story) she thought I should get one, too. She also gave me a frequent buyer card to put in one of the 3x5 card holders on the counter where all the medical staff/personnel & other "frequent buyers" keep theirs. I'm not sure if I should be sad, or feel honored in some twisted sort of way, or what; but regardless, after I buy 7 more cups, I get another free.

- I got to spend the day with Lydia today. That girl is pure sunshine! She delighted everyone that was in and out of the room today, and helped me take care of Judah all day...naturally. We took a walk this morning - and late this afternoon - and had fun playing beauty parlor, reading, playing in the playroom, and exploring a little, too. Family lunch at 11:30, family dinner & a movie this evening. I really miss Jared and my kids. Judah does, too. It's time to go home.

- This afternoon a volunteer brought the book cart around. It's a small cart with 3 shelves full of books! Lydia got to pick one for herself (Victoria Kann's "Goldilicious", a no-brainer for her) and one for Judah. She spent a good 5 minutes trying to find just the right one for him. She landed on an adorable board book about a little Siamese cat that apparently thinks it is, or wants to be a Chihuahua. Good stuff.

- Got to spend an hour of the afternoon with my dear friend who has won my lifelong devotion by bringing me caramel frappes. OK, so she's won me over for so many amazing reasons far beyond that. The frappes are just the icing on the cake! We also had dinner brought to us by another dear friend. It was a huge blessing to not only eat a fabulous meal, but also spend time with her. I've missed you, Mama!

**On that note, I just want to say that it's really hard to ask for help sometimes. Especially when it seems like you're asking for or needing help more than...well, everyone else. It's humbling and it's so contrary to my nature; but I can't get away from the truth that God keeps bringing me back to lately. We really need each other, and He made it that way on purpose. We're better together! (Especially when we're in the midst of hardship producing faith!)

- Judah spiked another fever this afternoon. Not high, but a fever nonetheless. Tylenol kicked it, but he got another one as soon as that wore off. I often marvel at the resiliency of my other kids, and take that for granted. Judah's body is not able to fight off infection the way a normal person's body can. He has so many things medically and anatomically going on besides a serious infection. It scares me a little. The Hospitalist (a pediatrician that only works in the hospital and acts as the primary dr.) said she'd still send him home with a fever, though, because she knows that I know how to handle that. That makes me feel good.

- When Judah has a fever the steroid that replaces his stress hormone actually has to be stress dosed. He needs triple the amount of his normal dose. He went back down to his normal dose this afternoon before his temp. went up, so tonight he needed that dose to go back up. The resident who's on ordered a dose that was 2 1/4 times more. Huh? Since I was still in my mama-bear-advocate role (more on that in a minute) I said to his nurse, "That's not right." I had a good talk with her about it - also a mom of a special needs kiddo that she regularly advocates for and watches like a hawk - and she went back to the resident. A little while later the dose came back right:) I know that resident is smart, has far more training than I ever will, and had her reasons; but I do not mess around with his endocrinology meds. Especially the one that prevents him from becoming dizzy, nauseated, etc., lethargic, comatose, and dead. Thank you very much.

- So, the new plan for Judah is as follows: Tomorrow morning a nurse will insert a picc line into his arm. It's a small catheter (but bigger than an IV) that will run up a larger vein in his arm and stop over his heart. This way he can go home on IV meds, kill the infection, and be covered until surgery. Lord willing. He'll have labs tomorrow, and once all that comes back and they're sure the dosing is still perfect for him, they'll send us home. There was some "confusion" today when Infectious Disease gave their recommendation for treatment, since they'll be the ones managing the outpatient medicating. They gave a recommendation that shocked the urologist and the hospitalist; and the "compromise" that the 3 parties came to in Judah's best interest was not at all satisfactory to Jared or me. Things get sticky and frustrating when you have multiple specialists giving recommendations to a hospitalist team responsible for making the final call, and they all have differing ideas of what might be the best thing for Judah. Somehow they have to take those differing ideas and opinions, and work together for the ultimate goal of making Judah well. And sometimes this mama has to step in and voice her concerns and frustrations about the process and where all those recommendations take them. That's what happened late this afternoon. We had ourselves a heart-to-heart with the hospitalist (read: I got a little emotional as I somewhat passionately, but respectfully, voiced said concerns and frustrations about some changes to the plan while Jared quietly stood by my side and lent moral support), and were able to come to an agreeable resolution to the whole thing. Meaning we went back to the original plan, we can go home tomorrow, and Infectious Disease can just deal with it. [OK, I'm sensing that I'm not quite over this whole thing yet. Deep breaths, Bethany.] I feel like everything I've learned about being assertive and advocating for Judah sort of came to the rescue today, and I'm so thankful for how God has equipped me. I'm not the advocate I want to be yet, but God is at work. Actually, I should really say that God came to the rescue today, but He decided to let me in on it.

Some things to pray about...if you actually made it this far into the post:)

- Judah's fevers are somewhat disconcerting, and this whole scenario would look a little different if he could get past them. Overall, pray for God's healing.

- That the picc line insertion would go smoothly in the morning.

- One of the meds Judah is on comes with some decent risk if it's not dosed just right. They will have to monitor him closely while he's on it. That makes me nervous. Pray for protection and perfect dosing for him. And pray for me as I learn how to give it to him and then do it at home.

- The surgery on the 12th and the subsequent recovery will be trickier since he'll only be a couple weeks from infection. Pray for a safe operation with no complications, and a smooth recovery.

- Pray for my heart. I am scared. There is a lot involved in this, and many of the elements are...scary. I can do my absolute best to take care of Judah and give him everything he needs; but the outcomes are completely outside of my control. I can't make him well. I can't prevent infection. I can't control what the medicine might do to his body. The picc line is new to me. I know I can do it, and I will; but it's a new element in his care, and that's kinda scary, too. Surgery is coming, but it seems like it's still too far away; and I'm fearful that even after the obstruction is removed he'll still get infections because of his renal anatomy...even though he hasn't had any in the last 2 years. I just worry.

I know God's promises to me and to Judah. I know Who He is. But this is just where I'm at right now. Thanks for praying.

Home Stretch

I aniticipate that today will be our last full day on the 4th floor. It's possible that we could be here until Thursday, but I don't really think so. I'll do some convincing if I need to.

Last nigth at midninght Judah spiked another fever. Because that happened outside the 24 hr. mark of having started the new antibiotics, they needed to get another urine culture to make sure nothing new was growing. A catheter at 12:15 AM defines unpleasant, but thankfully it went relatively quickly adn the culture appears to be free of any growth. Not gonna lie; I had some angry thoughts toward God. Exhaustion and frustration will do that to me. And the sound of Judah's cries. Glad that's over. Once he got Tylenol for the fever he slept from 12:30 to 6:30 without interruption...and so did I. Best night yet.

I found out that there's a rooftop sitting area off 2nd floor, so after rounds we are going to get some fresh air! Jared is coming to take the afternoon shift, then, and I'll go home and spend time with Mom & Dad and the kids. Back here for supper, some shut eye, and then hopefully a substantially lower CRP level and discharge orders!

Urology is following Judah, but they will wait to do the surgery until the 12th. They do NOT want to operate when there's infection present - I get that - so they'll keep him well medicated and operate when the infection clears up. Sounds like the surgery date is actually really good timing given the fact that the infection will take 14 days to clear out. We're 17 days from the 12th. But who's counting?

I can't thank everyone adequately enough for praying. For your encouraging words, for help with meals, or offers for the kids, for visits. The truth statement for this week is "We're better together". I couldn't agree more.

Not So Good News

Judah is definitely feeling better today, and has been much more like himself. Unfortunately, we've had some not awesome things come up. Judah's IV came out and he had to get another one. This one took 2 tries. It's times like those that I'm just like, "Really, Lord? This isn't a detail that could have just been left out of the story? Really?" Not a great attitude, but it's the little things like the lab pokes and the IVs that add up. Hopefully this IV will last for the duration of this stay. Speaking of which... We won't get out of here before Wednesday. Judah's CRP level (the inflammatory marker put off by the liver) went from 18 yesterday to 27 today. It's supposed to be going down, not up! He won't be discharged until that number is well on its way to zero. Urology will be over to see him today. We're going to talk about whether or not we should have the obstruction removed now, rather than try to get and keep him healthy for another 18 days. I'm trusting the Lord with this. I have no idea what the best thing is. God can keep him healthy, no problem, but maybe His plan is to have this done now. I don't know. I'm praying that God gives me the wisdom I need when it's time for that conversation. I think it will come down to the urologist's recommendation, but I also want to be sure I advocate for Judah. In the meantime, Judah and I are trying not to get bored. Hospital stays are never easy, but the challenges of the stay change as you go along. Once Judah's feeling better, it's hard to keep him entertained sometimes; and I can only sit around this room so much. We'll need to hit the playroom or take a walk today for sure. I'm looking forward to having dinner with my family tonight (in the waiting room), spending some one-on-one time with Mom after dinner, and then enjoying Chili's chips 'n salsa (the best known to man in my humble opinion) and a late movie with Jared once the kids are all tucked in at home.

Good News!

Today was a hard day for Judah. He battled high fevers all day and was sad and restless. We did lots of cuddling today. The good news is: A. Grandma, Grandpa, & the Brothers made it home safe and sound! and 2. We now know what the germ is and what will kill it! Judah had to get an IV today, but he's gotten his 1st dose of the new antibiotic, as well as his 1st IV dose of the original antibiotic. His fever finally started going down at suppertime and is now officially under 100! He needs to be fever-free and monitored on oral antibiotics (once he starts those) for 24 hrs., so I anticipate going home on Tuesday. It's a huge blessing to have my parents in town right now! Judah got some much needed Grandma Therapy this evening:)

Thanks for your continued prayers! Judah will go home on a heavy dose of antibiotics until his surgery on the 12th. 19 days to stay healthy. Please Lord.

Mom and Dad

My parents are extraordinary. God made a beautiful match when He made them for each other. I'm deeply grateful for the privilege of growing up with them as my parents - my models for a godly man and woman, for a godly marriage, for godly parenting.

While I know my parents aren't perfect and have had their struggles and battles in marriage, I don't remember them ever really fighting. They disagreed about things; but there was never any question that Dad was the head of our household. Dad loved Mom and respected her thoughts and opinions. He showed love to her and took care of her. Mom respected Dad and submitted to his leadership. She honored him and valued him by instilling in me a love and admiration for my dad that belonged to no other. They each had their own set of responsibilities in and outside of the home, but they also made a great team, and things at home ran smoothly. They were happy to see each other, they were affectionate, they loved spending time together, they held hands. 40 years later, these things remain true.

They've been through a lot together in 40 years. The loss of work, the loss of a child, the loss of a dream of being overseas missionaries, the loss of parents, the loss of a son. They have been faithful to God and to each other through every loss and I have seen God work and provide. New jobs, new dreams, the privilege of serving missionaries stateside, the hope of being reunited with child and parents, deep meaningful relationships with family members and friends, the restoration of a son. They are each gifted uniquely and I have seen them use their gifts for God's glory. I have seen them cling to God individually and together, and I have seen them grow and change in the same way. I don't know of any time in 40 years when either of them walked away from the Lord or from each other.

My parents have exemplary characters. They both have this amazing work ethic that is an example to everyone they work with now, or have in the past. They are a man and woman of integrity; dependable, trustworthy, kind, compassionate, generous, and selfless. They know how to love others. They know how to follow God in meeting the needs of others. They understand that what they have and who they are is the Lord's, and they surrender that to Him, to be used for His glory.

My parents are in it for the long haul. And I don't just mean with each other. They have never held to the philosophy that once the kids leave home they're "free". They have somehow maintained a balance of stepping back and allowing us to be independent of them, pushing us to "leave and cleave"; and yet still remain involved, supportive, and totally available. There is not a doubt in my mind that my parents are there for me and my brother, regardless of the need or the level of commitment or sacrifice meeting the need might require. They trust the Lord with us, they point us to Christ; but they walk beside us as well. They have extended themselves to their grandchildren, and are committed to pointing them to Christ also. They are passionate about their grands knowing and serving Jesus, and they live a life of loving Jesus in front of them.

My parents are servants. I can't remember a time from my growing-up years when my parents were not involved on a Missions Committee and in some other capacity at church. Their love for the Body of Christ is evident in their willingness to serve her, whatever that might look like as God works. They're both great with kids, but also wonderful examples to young men and women. Mom is a whiz at all things crafty, and loves creating for others. Dad is a sponge when it comes to the Word, and loves talking about theology. He can communicate God's character and what He has taught him to others in meaningful ways, because of choosing to live life as His student. They touch others' lives by being thoughtful and gracious. Not confrontational or abrasive.

My parents are my friends. They somehow instinctively made the transition from parent to friend, and they did it well. Yet, Mom knows when I need to her to be Mom, and there is a little part of me that will always be Daddy's little girl. I love spending time with my parents, playing games, talking, taking walks, shopping with Mom. And I consider it a privilege to claim the responsibility of caring for them when they get older should God allow that. I am eager to spend that time with them, serving them and providing for them. How could I feel any other way after their lifetime of caring for us in so many tangible and intangible ways?

My parents are phenomenal grandparents. They don't overstep boundaries of discipline or spoiling; yet they thoroughly love and cherish their grandkids, finding unique ways to show them that they are special and valued. My heart warms and I can't help but smile at the fact that my dad will babysit his grandkids by himself. Have play dates with them. Take them for bike rides, to the park, out for ice cream, play games, teach them about cars and birds and life, and "oh" and "ah" at every dress up outfit. I am so proud of the father that he is for me, and the grandfather he is for my children and nieces and nephew. My nieces and daughter are blessed to have a grandma who will teach them to sew, to cook (and include the curious boys), to create, who reads to them, sits on the floor and plays kitchen and dolls with them, and will leave a written legacy of love and memories for them (and the boys). Judah is immensely blessed to have them on his team - 2nd string as Grandma says - loving him, cheering for him, adoring who he is.

My parents laugh. And they make us laugh. Well, Dad's really got the corner on that market. They laugh at and with each other, and they can laugh at themselves. They're fun to be with! And they're great friends...with one another and to others.

40 years. July 24, 1971 marked one of the most important days in my history. The day my parents committed their lives to each other. The day they promised to love and serve each other before the Lord. The day they re-committed themselves to the Lord, and made a new commitment to Him as a couple, a family.

It was a new chapter in the story of the beautiful , young nurse and the handsome sailor. I love knowing that, because of Christ and our hope of eternity, this story can only end with the words...

And they lived happily ever after.

Happy Anniversary, Mom and Dad.

Hmmm...

I find it interesting that right after I write a post about needing people and desiring to live a life of weakness and surrender before the Lord, Judah is admitted for another serious infection. The night that I brought him in I was lonely, wishing Jared could be with me. We didn't have a stellar experience in the ER, and I was beyond exhausted. I was scared and frustrated and confused. I felt mentally, emotionally and physically weak, and I remembered what I had just written about that. That caused me to cry out to the Lord, admitting my weakness and fear and falling on His grace. He was right there with me, and I felt like I fell into His arms. It's not like He takes away all those feelings and I'm left instantly re-energized and ready to tackle the world - or the next diagnosis. But there is definitely a sense of His peace. A sigh of relief. The feeling of a shared burden being lifted. A sense of relaxation and letting go because I'm not in control or responsible for any outcome. I'm getting emotional now as I think about how good God is as He meets my needs in every situation. Not like a roaring lion, powerful and overwhelming; but more like the gentle, reassuring whisper of a best friend. I just know He's there. I'm choosing to keep thoughts like these at the forefront of my mind as this stay here continues.

I don't believe we'll be going home today as the dr. had at first hoped. Judah keeps spiking high fevers, and the root of that is unknown at this point. The dr. speculates that there's something else involved here that is resistant to the injectable antibiotics he's on. I anticipate the need for an IV today. I pray I'm wrong. He had a renal ultrasound this morning to rule out some other unpleasant possibilities. It's weird to think that he went 2 years without any kind of infection, given how unhealthy his kidneys really are, and then gets nailed with 2 just a month apart. I'm so thankful for the nurses on this floor. They know us, we know them. We know the routine around here. They know I'm capable and assertive. We have a mutual respect and appreciation for each other. Jared and I make a lot of jokes like "You know you've been here too often when..." and "We'll have to remember that for next time...wink wink." Sometimes if you don't laugh, you'll end up in a weepy heap on the floor. We got permission to take Judah off the floor last night, so we took him and Lydia for a wagon ride down in the lobby where they have some fun things to look at. He loved it! When he's not feverish he's happy and playful. Jared and Lydia are at church. I miss it. I'm hungry for the truth statement for this week. Last week's was going to be "Hardship produces faith", but our youth pastor that was going to teach on that was out with a kidney stone. Kind of ironic. Instead, we had a powerful morning of worship. It was awesome! I've carried that truth statement with me all week, and I'm eager to know what this week's is.

Mom & Dad are probably about halfway to Omaha. The Boys had a fantastic week of "Grandma/Grandpa Camp", and were so excited to have me, Lydia, and Judah join them there for this next week while Jared was going to be at YFC Camp. It was going to be a hard week without my Love, but a more restful week. I was looking forward to time with my sisters and their kids, time with my mentor, time with my parents. The Boys were so sad that I wasn't coming yesterday, because they miss us and they were looking forward to another week of fun! It helped when I told them that we would all have dinner together, whether here or at home, and that Dad had decided to stay home from camp so that he could take care of all of us. I love that man. I can't wait to see my boys! I miss them when they're gone. A LOT.

Keep praying. Judah won't get well until we know exactly what we're dealing with and how to treat it. Thanks everyone!

Relapse

It never ceases to amaze me how quickly things can change! Lydia, Judah, & I should have been rolling into Des Moines within the next hour or so, well on our way to spend a week with Grandma & Grandpa in WI; but instead we're back on the 4th floor at Children's watching the Disney Channel. Judah's day was a normal one once we got home from the MRI. We put him to bed that night, no problem. Just a couple hours later he got restless and started fussing. He felt hot. Within the next few minutes he vomited. My mind instantly raced back to just a month ago when he was admitted for a kidney infection/UTI. Long story short, I took him to the ER and he was admitted upstairs shortly after 2 AM. The rest of the night is a little bit foggy. I remember giving a medical history and med. list (no small feat) to the intern around 3, and then I finally got to go to bed. The morning came much to quickly. Judah is better today and responding well to the injected antibiotics. Looks like we'll get through this stay without an IV - praise the Lord! Judah has another UTI and kidney infection. When they get the sensitivities back, they'll know exactly how to treat it and can then switch to oral meds. The dr. is hoping to send Judah home sometime tomorrow. Outside chance it could be Monday. The fever has been gone since sometime last night, and Judah is happy.

Please pray for the Boys and my folks. They'll be driving here tomorrow.

The Boys (especially Eli) are disappointed, and my parents will be spending their 40th anniversary in the car.

Pray for Judah to get well and stay well. His surgery is still 3 weeks out.

Pray for me that I will be able to give my anxiety over to the Lord and rest in Him. I am fearful that Judah will get sick again before surgery.

Praise the Lord for a church family and good friends who are taking care of us!

Praise the Lord for a husband who sets himself aside and "rolls with it" so much better than I!

For those of you keeping track...

...here is some update stuff on the Little Lion.

Right now Judah is in MRI. This is the one the neurologist ordered to determine whether or not Judah's brain stem has an issue that is causing the droopy eyelids and limited eye movement. For the first time they let me come back to the procedure room with him! I got to carry him back there and hold him tight until they put him to sleep. It was so cool for me - and good for my mama heart - to be able to hold him close while they put the mask over his face to give him the gas to knock him out. He was totally relaxed, looking into my eyes one second; and the next he was totally out. He doesn't even know we're separated right now, and I love that! I'm going to make a point of asking every time now if I can go back with him. Not that I expect to be here for an MRI all the time... We'll have the results of the MRI sometime next week and then we'll go from there in deciding how best to treat Droopy Jud-y.

Judah has been healthy since leaving Children's at the end of June. His palate revision has been delayed and will hopefully be rescheduled in October. His ureter will be repaired on August 12. The dr. will remove the obstruction and put in a stint; and hopefully Judah will remain infection free here on out. I'm praying that this will just be an overnight, without any complications that would keep him here longer.

This Champ has hit some exciting milestones, too!

On July 1 he moved out of the infant car seat! Woot! Woot! He'll be rear-facing indefinitely, but that car seat thing sure was a big deal:)

He has also grown 12 inches in 12 months! 12 INCHES!!! Those 12 mo. clothes are getting tight and short around the middle:) Come fall, he'll be quite comfortable in 18! It's the little things...

It's been fun to see him hit some developmental milestones just in the last week. He is finally making connections between objects and their functions! He picked up a play phone and held it close to his ear! He thought it was hilarious when I started saying "Hi, Grandma!" like he was talking to her (which is one of his favorite things to do, by the way); and now it's a game he loves to play. He picked up a comb and tried combing his hair! He puts his shirt on his head! And at Goodwill, he picked up the tie out of the cart and put it around his neck! He might not have any verbal words, but he is understanding more and more words cognitively. I'm adding new signs pretty consistently now, so we'll see what he does with that. He doesn't have anything new yet, but I know he recognizes most of the words we're saying/signing.

I'm excited for Judah to get his own gait trainer. We're borrowing one from the city through his early intervention program, but when we move we have to give it back. His PT decided to write an order for him to get his own so that there's no interim period without one when we get to the new district.

I also found out that I might be able to opt Judah out of preschool! This is something that has been on my mind for the last several months. I know preschool is still another year away for him (Early Intervention is birth-3 in the home, and then services are provided through the school at age 3), but I have struggled with this. Because we're moving to a new district and will be working with a new team, this is something that I needed to talk about with our current Services Coordinator. I'm so encouraged, because based on Judah's medical history and depressed immune system, there's a very good chance that I can keep him at home and he will continue to receive the services he needs through the school system! Praise. The. Lord. It's something to pray about if you ever think of it, because this is the option that I strongly believe is the best for Judah!

Those are the highlights. The rest of us are doing well, too. I'm looking forward to a low-key week in WI next week while Jared is in the CO mountains for YFC Camp. I am NOT looking forward to being apart from Jared, but I am looking forward to some extra time with my folks. They're such a huge help when Jared's gone. I like them a lot;) Not to mention the fact that Grandma & Grandpa's house is a magical place when you're 9, 6, & 4 and you get to do special things there that you don't get to at home.

While I'm on the subject of my parents... HAPPY 40th ANNIVERSARY (July 24th) & HAPPY 70th BIRTHDAY, DAD (Aug. 2nd)!!! This is a big summer for you, two!

Before you know it we'll be back home, settling in for a new school year. Yikes. This summer has flown by! Better enjoy what's left of it...

The cuddle trick didn't work. I laid in bed thinking about what I had just written, fearing that my words might sound harsh or be misunderstood. I've gotten some very encouraging feedback this morning, so maybe my fears were mostly unfounded. I still want to clarify a couple things.

There are several people - mostly women - in my life that "get" me. They are an integral part of my life and they understand my thoughts and feelings. For the most part anyway. I am deeply grateful for and appreciative of these people, because they encourage, challenge, and uplift me without feeling pity or holding me in unreasonably high esteem. I need you guys! We all need people in our lives to build us up and journey with. I absolutely need that when we're in a valley; but I still want to be looked at as a normal mom and woman who has simply chosen, by the grace of God, to walk with Him and allow Him to carry me through. [That doesn't sound like much walking on my part.] I want my life to be about weakness and surrender, not strength and independence; because then it's God who is doing and dealing, and it's His glory that is apparent. I am often so bad at this kind of living, but that's what I desire. And what makes me just like everyone else is the fact that I need people in my life that will do this with me. People (women) that are committed to a life of surrender, that will encourage me in mine - as well as all the daily, ho-hum, normal mom/wife kind of stuff - and that will share the journey with me. I'm finding more and more that this is such a huge part of the Body and how we should be functioning. Together.

Thoughts from an Insomniac

OK, so technically I'm not an insomniac; however, I do often have a hard time falling asleep. Hence this late night rendezvous with my computer. I've been thinking about something a lot, and since it was actually keeping me up I decided I'd better just have at it and be done with it. Maybe then I can get some much needed sleep.

I have this sense that people feel sorry for me. Or for us. Like we have it so bad, or things are extraordinarily hard for us because of Judah. Like I'm some kind of special mom with super powers because of what I have to "deal with" every day. Like we live on some different plane from "normal" families. Like the challenges I face day to day are so way harder or more unique than any other mom's. The funny thing is, some of the people (mostly moms) that have said things that make me believe they would fall into this category, are the ones that I admire the most or shake my head in wonder at or pray for the hardest because I can't believe what they have to deal with every day! And when they tell me they "could never do it", I'm thinking the exact same thing about them! So, this is what I have to say about all this.

1). Don't you feel sorry for me, or us. And don't you feel sorry for Judah. I have never been sorry for one second of his life that he is who he is. I grieve over the loss of a "normal", pain-free, healthy, uncomplicated childhood for him; but I do NOT grieve over him! That boy is a gift in the truest sense of the word; and he has taught me more about God's grace, love, and faithfulness than anyone or anything else on the planet! (Except for maybe Jared. Well, and obviously Christ. Anyway...) He is pure joy! And in many ways he's so easy! He's ridiculously happy and carefree, easygoing and easy-laughing. He is beautiful and wonderfully made, simply because he was made by God and for God. He is a constant reminder to me to recognize in every single person the image of God regardless of race, abilities, appearances, or...anything! Judah was created by God for His purpose and His glory; and then He saw fit to graciously allow us to be a part of Judah's journey...which is really all about a journey with Him.

2). Sometimes being Judah's mom is extremely painful, because I love him thoroughly and passionately, and because his life can be painful and difficult. Sometimes it's hard because of the complications of his illnesses, because of the challenges he faces, and because of the time commitments he requires. I do need help sometimes. I want my friends and family to love us by remembering us and praying for us. I want people to ask how we're doing and how they can be praying; and I want them to be genuinely interested in Judah. And if I'm going to be brutally honest (why stop now, right?), then I need to admit that every once in awhile I do want somebody to feel sorry for me. But I really don't think that any of these things make our situation so much more unique than anyone else's. Doesn't every mom want or need these same things? We have it way "easier" than families I see at Children's. We have it way "harder" than families I see everywhere else. But don't the definitions of those two words depend so much on perspective? My point is life is hard no matter who you are. Every family, every person has daily challenges and struggles. Everybody has problems. Everybody experiences suffering and heartache and sorrow and fear and anxiety and uncertainty. Regardless of life circumstances, we all share a commonality of pain.

3). I've learned a lot about God's promise to only give us what we can handle. For starters, "I" can handle a whole lot more than I ever thought possible. But that's really only because I short-changed God and His power in my life. His amazing, beyond comprehension, life-changing, life-giving power! He's really the One "dealing with" my day to day. Well, as long as I surrender and let Him. I've also come to more fully appreciate God's power in others' lives as they face challenges and overwhelming life circumstances that I think I could never handle! The awesome truth though, is that God has uniquely equipped every single believer to follow Him in the life that He has called them to! Whatever that life might entail! No matter what, whether it feels like it or not, even if it seems like you might never be able to stand up under the burden of it - "you" can! Because God alone is carrying you, and has given you every mental, emotional, physical, and spiritual tool that you could possibly need to follow Him and LIVE. WITH. JOY!

I wish I could live in that truth every moment of every day. I just get overwhelmed and discouraged so easily sometimes.

So... Don't put me on a pedestal. Don't not share prayer requests with me, because you think I already have so much on my plate. Share your burdens with me, and I'll share mine. I'll pray for you, and I'll thank God for you. We need to do life together, helping one another, extending love and grace in every kind of situation.

And now that I've gone into tomorrow with these thoughts, I'd best sign off and climb back into bed. I think if I cuddle up to Jared I can sleep now. Good night.