Wednesday, December 22, 2010

Refocus

Whenever I look back over my life and find moments or even long periods of floundering in stress and emotional struggles, I cannot help but notice and admit that whatever difficulty I may have been facing was made so much worse if I failed to spend time in prayer and the Scriptures. Confusion, emotional strain, depression, feeling overwhelmed - all of these and more start to creep in when I like, Peter, take my eyes off of Jesus and look at the storm raging all around me. In truth, the reason why I handled my time so well at Willow Grace's side in the hospital is because I spent so much time all day long and even in the night watches praying, reading the Bible, and listening to good preachers of faith on the internet. I surrounded myself with scriptures in our little room, posting them at eye level so that in whichever direction I or anyone else looked, even in the bathroom, there was something uplifting to encourage our spirits. Indeed, there were times when a doctor or nurse would stand there, wearing some dark expression, and gravely utter some negative report, and I, instead of meditating on that human reasoning, chose instead to focus on the promises my dear Lord gave me ages ago.

After we all returned home from the hospital we struggled to return to some sense of normalcy, and in my desire to return my home to a somewhat organized state focused more on that than I did on spending time with my Savior. I began to feel overwhelmed and frustrated, and I realized once again that I had made a poor trade - organization for time with the Lord. My heart, mind, and emotions all began to betray me and travel down paths devoid of the Lord's calling. We are still adjusting and working through Willow Grace's recovery. She continues to improve more and more each day. She is actually sleeping between 11-14 hours each night! Her little body (and I do mean little, as she lost so much weight) is busy in the healing process. However, in most respects, things have calmed down considerably, and so, I now readjust and refocus and thank my God that all along the way He is with me, gently leading me back into His presence and in the way I should go. I confess that I so desperately need Him, and that is one place of desperation for which I am not ashamed.

Friday, December 17, 2010

Shopping Buddies

What a blessing and joy is was to return to work this week! Just a couple days of normalcy and reacquainting myself with my workplace and colleagues... and a couple days to be loved on by all my work friends, it was just about perfect! I even got to have lunch at one of my favorite places yesterday, The Cottage in Bellevue, with my sweet friend, Megan, and accomplish a tad of Christmas shopping in their gift shop! Also, the fact that I was even at work was evidence that God had been faithfully working in our lives in healing Willow Grace and bringing her home. I would not have left her side otherwise.

And now, Christmas break has begun. Woo-hoo!

I love everything about Christmas - the sights, the sounds, the smells, the parties, the shopping, the celebrations, the decorations, the church services, the presents, the festive feeling, even seeing those tacky sweaters I refuse to wear on other people! Today, I'm going to try to accomplish a bit of my Christmas shopping with Mom and Willow Grace in tow, two of my favorite shopping buddies. We're celebrating our Christmas with Chris's family early, this Sunday, and so I must accomplish at least half of my shopping today.

For the first week we were in the hospital with Willow Grace, she didn't talk and hardly responded to us in any way. Once she started again, it was like she was making up for lost time and talked constantly, even in her sleep! One afternoon, just a day or two after she finally started talking again, while she was taking a long nap, she quietly murmured, "Shopping... I want to shop." That's my girl! Yesterday afternoon, when I returned from work, she and Chris were waiting for me parked outside our house. They had just returned from Cool Springs Mall where Chris had taken her to ride the carousel. That sweet girl LOVES a carousel! And she had been telling Chris that she really wanted to go to Target. Last night, she finally got her wish to go shopping. Not only did we go to Target, but we also took a lovely little drive down to the Ashland City Walmart. For those of you who tend to worry, don't! It was not taxing on her as she was content to ride around in the shopping carts while we were there. Also, we had her layered up and bundled her in new her heavy, thick kitty cat blanket. She was warm and toasty and was delighted to be out and about!

When we finally arrived home, it didn't take long for exhaustion to overtake us while we rested in the living room. Willow Grace was, of course, the first to slip off, and Chris carried her upstairs so that she could rest better in her little bed. Not long after that, however, I heard her calling for me. I hurried to the steps but just not quick enough. She was attempting to come down them when her little legs gave out half way down the first set. She tumbled down the last 3-4 steps and slumped over on the landing. She was unhurt, didn't even cry, but just desperate to get to me. Though she continues to build in strength and energy, she still has quite a bit of trouble with the stairs. However, I guess she just needed a little more time with Mama before settling down for the night. I was able to get her back to bed and off to sleep with little effort.

And now, I must hop around and prepare the two of us for our fun day ahead. I hope you are all well this fine December morning! I'm still reveling in the joy of having my girl home for Christmas and feeling the awe and wonder of the miracle my dear Father has accomplished in our lives.

Merry Christmas!

Wednesday, December 15, 2010

New World

The world is new again. It feels much like it did when Willow Grace was a newborn or when she started to walk and discover things on her own causing me to rediscover so much I had forgotten or simply ignored.

Last night, Chris took Willow Grace and me out for a drive, just to get us out of the house for something pleasant and for a change of scenery. Even when it snowed a couple days ago, we remained indoors and simply peaked out the storm door marveling at the beauty of our world dressed in fluffy white crystals. First, last night, we stopped by Sonic for some sweet ice tea and corn dogs (for Chris & me, WG still not really eating) and then wandered around Bellevue in the car looking at Christmas lights. Fields blanketed in glistening snow, houses outlined with festive colored or white icicle lights, and yards bedecked with gently lit over-sized Nativities and giant blow-up snowmen and Santa Clauses -- I'm not sure whose eyes were wider, Willow Grace's or my own. First of all, we both LOVE Christmas, but also we've seen little else besides the hospital room and our house in almost a month. It was visually overwhelming, and we loved every minute of it!

Earlier in the day yesterday, Willow Grace had her first follow up appointment. Our pediatrician was very encouraged and encouraging. He told us that while her progress is slow and will likely continue to move forward slowly, she is still making progress. The long list of issues I quickly ticked off was met with a singular response - all normal parts of her recovery and no cause for concern. He believes that it could take another 3-4 weeks before her energy, strength, and appetite returns.

As for me, I've returned to work today. Strange, exhausting, and wonderful! I've been soaking up all the hugs, cheers, kind and loving words, and exuberant smiles lavished upon me. I am so grateful to work with such loving, thoughtful people. What a blessing! At the moment, I'm sitting in a room monitoring nine eighth graders who are taking their science exams. It's pretty laid back, a good way to ease back into things. I'll only be here for two days before Christmas break hits, and then I'll have the next two weeks to regroup, refresh, and help Willow Grace along in her recovery.

I want to continue to thank you for your prayers and words of encouragement and for loving my little family so well.

Monday, December 13, 2010

Expectations

This snowy Monday morning finds Chris, Willow Grace, and me lounging in the living room. A blazing fire is merrily crackling away in the hearth, and Willow Grace has spent the last hour giggling incessantly for a dozen silly reasons causing us to join in with her without really knowing why. Perhaps it's just that we're all so happy to be here in our cozy home instead of still being couped up in that little hospital room.

We're slowly, very slowly, settling back into our life here, and I am trying to allow myself to rest without feeling guilty about it. Our 18 days in the hospital left me feeling quite exhausted. I know that I said to myself and others that I knew it would be a process, that I would have to readjust to life outside the hospital, and that it would take a some time for Willow Grace to finish her recovery and build back up her strength. I said it, and I believed it. Really, I did. And yet, it's an entirely different thing to live it. And so now I am continuing to employ patience, mostly with myself. I tend to be pretty hard on myself and hold myself to high expectations, sometimes unrealistically so. I don't have all the things we accumulated at the hospital organized and put away, and I haven't put away all of the autumn decorations that were still out waiting for the Thanksgiving we never got to have. There's so much to be done. I suppose it's time to cut myself a little bit of slack. It will all get accomplished, just not on the time table I had set up in my head.

Our first night home, Saturday night, I think that we were all just so grateful to be here that we practically melted into the furniture when we arrived. Willow Grace immediately started playing with her toys, but when she sat down on the floor she needed help getting back up. Later, when she tried to climb the steps to go to her room, she could only make it up one step! The last two nights, I tried to put her to sleep in her own bed, but at some point I ended up running, half-asleep to her side when she shrilly screamed out, "Mommy!" And inevitably, she has ended up in our bed. (Interestingly enough, she only calls me Mommy when she's sick, scared, or has some other problem she can't solve herself. Otherwise, it's Mama or Ariel.)Yesterday and today, she has gained back a tad more strength, and her appetite seems to be increasing as well. I so wish that I could take her out in this glorious snow. She loves it so much and wants so badly to build a snowman. So far, however, she has been content to look out the window at the snow. What's important is that she is on the mend, and we will get to enjoy our Christmas break with family and here in our little home. And I'm just going to pray for more snow this winter season for us to enjoy!

Saturday, December 11, 2010

The Questions That Remain

In the days and weeks to come, I know that I'll continue to process and reprocess all that has happened in our lives in the last month. And I'm sure that I'll work quite a bit of that out writing on my blog. There will be questions that simply will not be able to be answered such as: Where did Willow Grace come into contact with the e. coli? We have answered what seems like thousands of questions from doctors, nurses, and specialists; and Chris and I have even talked to the state department several times in order to solve this mystery, and yet we have still not come up with a viable source. And so, eventually, we'll choose to put those wonderings to rest and just choose to be thankful for our healthy, happy little girl.

(We took a little outing yesterday down to the 2nd floor. Willow Grace was so excited about her ride in the red wagon!)

For the moment, however, we are in a state of waiting. A little less than an hour ago, the nurse came to draw blood, and we are waiting to hear back from the lab. We need to see if, after yesterday's surgery, Willow Grace will need another transfusion. If she does, we stay until Monday when she will be reassessed. But, if she doesn't, then our sojourn here is complete, and we will finally return to our home. Scriptures and cards and Christmas decorations will have to be removed from the doors and walls. I'll busy myself with gathering clothes, toys, stuffed animals, and care packages and packing them into the big duffel bag and extra large suitcase I asked Chris to bring from home last night. This really has been our "home away from home" for the last few weeks, and it'll require a good deal of effort to get us on our way.

Strangely enough, I am a bit nervous about going home. Since I haven't been there in so long, I wonder what it'll be like readjusting to normal life, and I don't know what the rest of Willow Grace's recovery will look like there. What will that require of us? How long will it be before she's regained her strength and can do everything she did before? When will I feel safe taking her back out into public? Will she find it strange to be home? We've been sleeping in the same room, and I wonder if it will take a few nights before we can stay in our own beds. So many questions and no answers until we live it. So much of life is like that.

What happens next? Only God knows, but I'll keep you posted!

Thursday, December 09, 2010

My own Christmas miracle....

That's how I'll remember this December. How else can one explain the rapid recovery my girl has made from this illness? Despite the predictions of the doctors, the way the illness was progressing, and the standard recovery time for HUS, we are going home weeks ahead of schedule. Prayer works. I had asked that everyone pray that we make it home by Christmas, and the doctors are now telling us that not only will we be home for Christmas, we should be going home on Saturday or Sunday! Amazing! Praises fill my heart.

Joyful, joyful, we adore Thee, God of glory, Lord of love;
Hearts unfold like flowers before Thee, opening to the sun above.
Melt the clouds of sin and sadness; drive the dark of doubt away;
Giver of immortal gladness, fill us with the light of day!


How can I help but sing when I look at my little girl's face, no longer constantly strained in pain or ghostly white? Praise the Lord for the great things He has done!

(Our happy Willow Grace tonight after receiving a holiday Barbie from our dear friend, Leslie)

Tomorrow, Willow Grace will have surgery some time in the morning to have the catheter removed from her tummy. Depending on how everything goes, she may or may not need to have a blood transfusion. We're praying that all goes well and no transfusion is needed. After that, we'll watch her blood levels and her nutrition, and those two things will determine when she will be released to go home. Home. That sounds so good and so hopeful to me now.

The last two days have been so joyful. Constant good news and lots of play time with my sweet girl. She's actually been out of bed singing, dancing, and walking around. While she's still be a bit wobbly on her feet, she has still managed to make the most of what energy she does have. We also finally gained clearance today to be taken off of "no contact" when her final culture came back declaring her free of e. coli! Before that came through, however, the physical therapist gained special permission for her to leave the room. The condition was that she had to suited up in a special yellow gown and hospital gloves. We told her that we needed to put her princess gloves on and a special Belle gown, and she was more than happy to comply!

(Willow Grace in the hospital playroom in her "princess" gown and gloves)

I know I've said this dozens of times here and in emails and on Facebook, but thank you so much for all your prayers. We appreciate them more than I can ever express. And I now ask that you continue to pray for us. Pray us home. And pray for Willow Grace during her surgery tomorrow, for the rest of her recovery here and at home, for our transition back to "normal" life after being in the hospital for so long.

Wednesday, December 08, 2010

Happiness!!!

No long post just...

GREAT NEWS!!

- Off dialysis today
- Off the TPN/IV tonight
- Waiting for one more negative culture on the e. coli so we can leave the room and go to the hospital playroom
- Having the catheter in her tummy removed Thurs or Fri
- Should be home first of next week - a month ahead of time! Woo-hoo!

Here's a little Christmas greeting from Willow Grace (and me) to you!

video

Thank you for your prayers! Thank you for all the ways you've taken care of us! We're almost there! Please continue to pray us all the way home!

Tuesday, December 07, 2010

Faith, Sleep, and Making Lists

Isaiah 40:31
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. (KJV)

Isaiah 40:31
But those who wait for the Lord [who expect, look for, and hope in Him] shall change and renew their strength and power; they shall lift their wings and mount up [close to God] as eagles [mount up to the sun]; they shall run and not be weary, they shall walk and not faint or become tired. (AMP)


True faith is praying for rain and then carrying an umbrella, living expectantly. We are living expectantly, and yet my heart is still filled with wonder and amazement as I listen to Willow Grace's doctors tell me that she is improving quicker than normal. Now, instead of predicting that we will be here for another four weeks, they are telling us it will be closer to a week or possibly two! I know that prayer works and that it is working in the life of our little girl and in our own hearts. Today she was able to get out of bed for just a bit for a little physical therapy. It's heart-breaking to see the fear in her eyes as she wobbles around painfully on her little legs which she hasn't really used in the last two weeks, and yet she refused to quit trying. Such a determined, brave little girl!

And yet, I confess that, physically, I have, at times, grown weary and tired, and I have lost my patience and felt the weight of this ordeal bearing down on me. And I have looked to sleep as the only solution for curing my intense fatigue. Of course, I do need sleep, and a good night's rest certainly does help to refresh one's perspective, but it is not a lasting solution. Truly, the only thing that has carried me through this is faith. Faith in God. Faith that He will see us through this. Faith that He can take this awful circumstance and bring from it something beautiful.

Tonight, once again, my energy has been nearly depleted. I will lay down my head searching for some peace and sweet sleep, and yet if my girl needs me in the night, as has been the case several times a night every night we've been here, I will somehow call up any energy I may have in reserve and tend to her. Thank God for the blessing of three women in my life, (my sweet Mama, my mother-in-law Donitta, and my dear friend Leslie) who have been staying the nights with me here in the hospital, sitting by Willow Grace's bedside so that I might get some rest. How they have ministered to me and to Willow Grace! I am overwhelmingly grateful for the gift of their presence and how they have tenderly loved and taken care of my little family.

A couple years ago I developed a new habit. I try every night when I go to bed to focus on something positive before I go to sleep. If I can't sleep, I try listing things alphabetically in my head like things having to do with Christmas (Advent, Bethlehem, caroling...), people I love (Donitta, Eva Joy, Frazier...), or the attributes of God (gracious, holy, inspiring...); or I might focus on a scripture or something He's done in my life or the lives' of those I know. Tonight, I'll be focusing on the scripture above and praying that He renews my strength and the strength of all those parents, grandparents, and friends who are watching over children in this hospital tonight.

Monday, December 06, 2010

Challenges and Triumphs

Psalm 106:1
Praise the LORD. Give thanks to the LORD, for he is good; his love endures forever.

Though we still had our share of challenging moments today, our day was also full of positives and little steps ahead. As for the challenges, she's still throwing up about twice a day and is also having some really painful abdominal pain. Of course, it's hard to watch her go through this. All I can do is hold her little hand and speak soothing words and pray her through it. Also, she had to have the dressing on her picc line changed today which is quite painful and scary for her.

And then, just so we could fill our drama quota for today, a man showed up at our door telling us that he needed to take Willow Grace downstairs for an x-ray because the perennial catheter in her stomach was leaking. Well, that was news to me! After what happened a few days ago, we've decided to question just about everything. The man wanted us to help him wheel her down to x-ray with everything, all her little machines, in tow. I protested and explained that she is hooked up to the dialysis machine 24 hours a day, and that machine cannot be moved. He was insistent, and Chris told him to go check again. We called the nurse and asked her to double check as well. It turns out that he had received the wrong orders. The doctor had mistakenly written down Willow Grace's name for the x-ray when it was another little girl who had the leaking catheter! I'm so glad we aren't accepting the word of every person who shows up at our door in a set of scrubs.

And now on to the positives!

First, I finally heard her laugh after not hearing it for two weeks! At 2:30 AM, she was awake and playing with her Nana (my mom) She was blowing through a Santa Claus straw which was making little whistling noises. It was cracking her up! I actually fell back to sleep listening to that sweet little tinkling noise! Also, Willow Grace was hungry today. She woke up asking for Fritos! I'm not even sure why she asked for those as she's only had them a couple times before in her life. It's not really the kind of thing she's allowed to eat just yet in the hospital, so I convinced her instead to try a roll, of which she ate half! Great progress after not eating for two weeks! Another highlight was the two hours she was allowed to be off of the dialysis today. While she still wasn't cleared to leave the room, not having tested negative for the e. coli as of yet, we were still able to get her out of bed and move around with her. And my little princess felt like singing today! Normally, she's so vibrant and loves to sing and dance. We caught a little glimpse of that little drama queen today. Check out the video below of her singing with me while her Gran-Gran (Chris's mom) holds her. (Sorry that my voice is so loud)

video

Sunday, December 05, 2010

I Should Be Asleep But....

I just had to record my thoughts first.

Early this morning I slipped out of our little hospital room, leaving my sweet friend, Leslie, who had stayed the night with us, and Willow Grace asleep; and I wandered downstairs to grab a bit of breakfast. As soon as I stepped out of the elevator, my ears were met by the swell of a piano and the most soulful voice. At first, being so early I felt that it must be a recording, and yet I could not help but go in search of the source which I soon discovered to be in the little hospital chapel. A young black man sat alone in the chapel playing the baby grand and singing out in earnest praises to the Lord. I slid into a rocking chair in the back of the room and closed my eyes letting the words swirl around in my head and calm my heart. It was just a few moments of listening to someone else singing worship songs, and yet it was as good as any church service I could have attended.

After a few songs, he stopped, and I inquired, "So, is this something you do every Sunday, or are you a patient's dad?" To which he replied, "No, actually, I work here. I try to come before my shift so I can worship the Lord and spend a little time in His presence." He went on to tell me that he works in critical care. He describe how everyone becomes really attached the children in the hospital under their care and how hard that is, especially in critical care. Sometimes those children are here for months, and sometimes after all that time they lose them. "It's really hard when a child passes," he told me. "Sometimes the only thing that gets me through is coming down here and worshipping the Lord." He asked me about my own situation, and I told him about Willow Grace and our time here. After we talked for a while longer, he asked me if he could pray with me. Taking both of my hands in his own, he uttered the most beautiful, complete prayer including not only Willow Grace and her healing but also our whole family and every doctor, nurse, caregiver, and visitor who came in and out of our room. He prayed a special blessing over After the prayer, he hugged me and headed on upstairs to start his shift while I continued my journey to the cafeteria trying not to shed tears (even tears of joy and hope)so early in my day. What a blessed way to start my day!

Oh, how I needed that this morning. Willow Grace continues to improve though there are still so many challenges each day. Apparently she has developed an infection at the site of her picc line. She's been running a fever all weekend, and they did some tests to determine the cause. And so, they decided to give her two different kinds of antibiotics to cure the infection. The first one was fine, but the second one caused red man syndrome. In case you're not familiar with this condition, it's when a drug causes a person's head, neck, and sometimes torso to turn red and start itching terribly. Willow Grace had a terribly reaction. She was thrashing about violently, scratching her head frantically with both hands, and screaming. It was horrendous. The nurses decided to give her some Benedryl by IV which caused another crazy reaction. At first she calmed down, and then suddenly she was screaming, kicking, and thrashing about on the bed. Though Benedryl by IV can cause an adverse reaction in children, the severity of Willow Grace's reaction alarmed the nurse, and she gave Willow Grace some Tylenol and paged the doctor. A few moments after she had the Tylenol, in the middle of a crying out, she fell fast asleep, absolutely exhausted. The doctor came to examine her and determined that she would be fine. And most of the rest of the afternoon and evening, she has slept.

I'm hoping that she cotinues to sleep tonight, letting her little body heal and also allowing me to get some rest. I am one very, very tired mommy.

Friday, December 03, 2010

Riding the Roller Coaster

As I sit writing this, Willow Grace is deep in a Benadryl induced sleep; White Christmas is playing in the DVD player; and a sweet little Christmas tree my friend, Janet, brought me is twinkling merrily behind me. For me, Christmas runs from the day after Thanksgiving until January 5, and so, even though today is not Christmas Day or even Christmas Eve, we are spending Christmas, at least a part of it, here in the children's hospital. And that, in no way, diminishes my joy in the season. It's neither what I expected it to be nor what I wanted, and I'm not exactly happy to be in this position. But I still have my Christmas joy, my joy in the Lord, and no one and no circumstance can take that away from me.


(Our little tree and a tiny nativity: I thoroughly enjoyed decorating our room today! Thanks so much, Janet!)

I'm sorry that I didn't get around to updating everyone on our day yesterday. It's been eventful and exhausting, and I somehow just couldn't get myself in the "head space" to process, organize, and record my thoughts. It's been a roller coaster. Each day has brought victory: She finally peed yesterday morning and twice since! I've never in my life been so excited too see pee. Even her nurses were out in the hall doing a little dance and saying, "She peed! She peed! She peed!" Everyone is pulling for this little girl, and it's a good sign that she's doing this after less than a week on dialysis. Also, her platelets are up, and her red blood cells are holding steady. However, there have also been hardships: Her tummy has been hurting very badly leaving her writhing on her bed in pain; I can tell you that's really hard on a mommy's heart. Then, last night, we found out that after all the drama we initially had with the feeding tube, they actually put the wrong tube in! They finally removed the wrong tube this morning and are reassessing her situation to see if they need to put the other one in. Talk about an exercise in patience and walking in love! It's only by prayer and God's grace that I have held my tongue and responded peaceably.

We have been overwhelmed also with the outpouring of love for us the last couple days. Mrs. Brewer's third grade class sent little gifts and homemade cards for Willow Grace that warmed our hearts and brought tears to our eyes. Strangers have sent us gifts and food and cards. Friends have brought food and toys and prayed with us around Willow Grace's bed. We've been fed and hugged and encouraged. How can we help but to be filled with hope and faith? God is loving us through His people. Absolutely overwhelming and amazing. Thank you so all so much! Love and blessings to you all!

For those of you who have asked, here are some specifics you can pray for with us:
1. Chris is on weekend dispatch from tonight through Monday morning. Please pray for a LOW volume of calls so that he can get rest and also spend time with us.
2. Please pray that God will take away the pain in Willow Grace's tummy, that He will heal the colitis, rid her of the e. coli, and heal her of the HUS.
3. Chris's grandmother was taken back to the hospital today after finally being released on Monday. She's been in the hospital for most of the last four weeks, and it's been very difficult on the family dealing with two beloved ladies ailing in different hospitals.

Wednesday, December 01, 2010

"What We Have Here Is... Failure to Communicate"

Today I was reminded of those famous words above from Cool Hand Luke. (If you haven't seen the movie, you should. So amazing.)

Twice today I had people show up at the door to Willow Grace's room ready to perform different medical procedures of which we had not been informed. Needless to say, this was quite unsettling. First, while Willow Grace was taking a rather satisfying nap, a man opened the door to her room and entered pulling a large machine behind him announcing that he was ready to do a chest x-ray. A chest x-ray? Why? He didn't know; it was just his job to do the x-ray. About thirty minutes later, a nurse stepped inside and said, "OK, we're almost ready to put in her feeding tube. She's not going to like this at all, and she'll probably get pretty upset!" Really? This is how they choose to let me know about these things? I had to step into the bathroom and try to pull myself together after hitting one of those emotional breaking points. I sat down on the edge of the tub and cried and prayed.

I thought, "Here we go again... more opportunities to see if I can walk in love. I put these scriptures up all over the room for a reason." Today, I kept seeing Isaiah 26:3 which is posted on the door going into the bathroom, "You will keep him in perfect peace whose mind is stayed on You because he trusts in You." Each time I see that scripture, I choose once again to trust, and in return I immediately feel God's peace wash over me.

I couldn't handle staying in the room while they put the feeding tube in. I stepped outside feeling like I had abandoned my little girl in a time of need and had just completely failed as a mother in that moment. And even in that moment of despair, God brought two people into my life to show me how much He cares. First was the mother of two of my former students who is also a nurse. She was about to head into my room to assist with the procedure. She hugged me and lovingly explained everything to me. After she went inside I stepped a couple doors down into the nutrition room to get some ice water, and I met Victor the maintenance man. He told me about doing the same thing with his daughter, "They were about to put a big ol' needle in her back, and I thought, 'Now I gonna be a man about this,' but I just couldn't. I had to go out in the hall and wait. You OK. Your little girl is gonna be OK," he told me. He talked to me a bit more and made me smile and told me he'd be praying for me.


(Willow Grace after they put the feeding tube in)

Later, one of the doctors from the nephrology team came up to apologize about the breakdown in communication. She admitted that someone should have come and explained everything to me just after they made their decisions. She didn't make any excuses for their actions; she just apologized. And I found out that some of the information I was given earlier was faulty. It turns out that Willow Grace needed the chest xray to determine why she was having such a hard time breathing and to see if she had fluid on her lungs, and she needed the tube, which is not be used as a feeding tube, to help release some of the pressure on her tummy during dialysis. Apparently the dialysis is causing her intestines to press up on her lungs which is causing her to breathe really shallow. I told them I understood that all of this was needed to help her, but I would have appreciated a "little heads up" next time.

So, today, has been a difficult day - for those reasons and also because my sweet girl has been in a lot of pain. Any parents who may be reading this understand; I wish I could take that pain away so badly. And so I pray, kneeling next to her bed, as I pace around the room, and sometimes when I retreat to the bathroom to hide my tears from her searching eyes. It's a bit funny to me that the little hospital bathroom has become my "prayer closet," but I think it's as good a place as any.

What's the Story?

As I sleepily trudged to the nutrition room to make myself a cup of Earl Grey this morning, I caught a peek into a neighbor's room. There was another mother attempting to take in a few moments of rest on the hospital room couch. There was another grandmother sitting up watching over a sleeping baby, just as both my mom and Chris's mom have done for us.

I've caught snippets of conversations in the hallways and elevators and cafeteria. Mothers and fathers, grandmothers and grandfathers, concerned families and friends - all focused on one child and how their whole world has shifted and their perspectives have changed. Some of them have been here for months, have had to return countless times, or even have more than one child here.

There are so many stories. Stories of hope. Stories of loss. Stories of fear. Stories of sadness. Stories of despair. And stories of faith.

I hope, most fervently, that our story will be marked by hope and by faith.

Though yesterday was not quite as good as Monday, we were still blessed with the sound of sweet Willow Grace's voice asking for family members, talking about what she wants to do when we leave, and crying for a Dora the Explorer coloring book. Our loving nurses here made sure that baby had some Dora pages to color. They brought several pages printed off the internet four different times, and then later they brought a whole coloring book with stickers for her. She was able to sit up a couple times and color, but she wants someone else to color with her. Even in her current state, she's quite sociable.

We had a couple scares yesterday. It seems like every day brings new challenges and more to learn. At one point, she woke up in a sort of crazed state. She was frantic and unable to answer any of our questions. She looked wild, and her eyes were shooting all over the place, quicker than I would have thought possible. After several long minutes, possibly ten minutes, our nurse paged the doctors, and I was astounded at how fast they arrived. After a few minutes more, however, we were able to get her calmed down and focused, and she responded well to all questions asked and little actions she was asked to perform. The nephrologist said that Willow Grace was just responding to the morphine and had a bit of delirium because she has been so sick. Other than that, the big events of the day were another blood transfusion and a new dialysis machine after the first one decided it was tired and started sounding an alarm every other minute. There are times when the dialysis is very painful for her, and we just try to soothe her and distract her as much as possible until it passes.

Today Chris returns to work. Please pray for him as I know it's going to be hard to be away from her all day after all that we've been through and watching over her constantly for the last seven days. We are so blessed to be in a position where I don't have to make that decision between staying here with her and losing my job or going to work and leaving her alone all day. It breaks my heart that there are so many children here who spend all day alone because their parents can't afford to be here. I can't imagine leaving my sweet girl all alone in this room all day. I've said it for years, and I continue to say it now, "I love my job. I love the people I work with, around, and for. I am so blessed to be at CPA." My sweet friend, Megan, from work, brought me some requested supplies, and yesterday morning I was able to make a bunch of colorful scripture signs to post all over the room. I have the Word of God all around me, constant encouragement straight from my Heavenly Father.

For those of you who have asked, a couple of my coworkers/amazing friends arranged a website for people who want to bring food. Here's the link if you want to see what nights are available: http://www.takethemameal.com/meals.php?t=YBXL2103 Thank you so much for all the ways you've supported our little family, for the prayers, calls, texts, visits, food, care packages, and love. I will never be able to adequately express what this has meant to me and how deeply you have touched my heart, but I hope you know how deeply grateful I am. I hope your day is blessed with laughter, joy, and peace.