Just a few extra thoughts since my last post....
Since the movie Frozen was released, it has been such big influence on my little girl's activities and, thus, been on my mind quite a bit. There's no doubt that the movie is a grand hit. People are talking about it, discussing it's meaning in depth and coming up with quite a few ideas for what agenda it may or may not be pushing. While I, as a Christian, find traces of my own beliefs displayed through the sacrificial love shown by Anna, I in no way believe there to be a Christian agenda secretly woven into the film. I also don't believe that Frozen is trying to influence our children to find hidden powers they might possess, to embrace finding oneself and embracing independence at all costs, or to pursue a homosexual lifestyle -- all things I've heard/read others argue. What I do think it promotes is waiting for true love, consequences for one's actions, and the importance and power of love.
While I thoroughly enjoyed watching the movie all three times I saw it, there are certainly behaviors I don't want my daughter to emulate. However, that's where I, as the parent and guide, come in.
In the song I touched on in my last post, "Let It Go," I dealt only with the idea of letting go of things that are harming us. Does that mean that we should let everything go? No. Certainly there are things to which we should hold - our family, our faith, our convictions. Elsa started letting go of fear (a good thing to do) but went too far when she abandoned her sister and others. When Elsa sings, "No right, no wrong, no rules for me," we're not meant to blindly accept that. As we find later, she cannot live by that stance without seriously harming herself and others. These are the things I discuss with my own daughter when we talk about the movie or she sings the song.
We have the soundtrack in our car, and I often giggle when I catch a glimpse of my sweet girl in the rear view mirror clutching her fists, chin upraised, and singing with such emotion in her face. After she belts out a tune like "Love is an Open Door," I sometimes pause the CD and talk with her. The characters in the movie go from meeting to getting engaged in one evening, obviously not a wise choice. We talk about that and about what good choices they could have made.
Children's entertainment is not going to fit inside my own brand of perfect. Sometimes I roll my eyes when I see the way a parent handles a situation on on one of the programs Willow Grace watches. That's another opportunity for my girl and me to talk. While I do put boundaries on the types of things she does watch and read and listen to and try to keep them age (and morally) appropriate, I'm not going to keep her in the preschool world of entertainment with nothing but easy solutions and blissfully happy people.
Showing posts with label love. Show all posts
Showing posts with label love. Show all posts
Monday, February 24, 2014
Friday, January 14, 2011
Love, Nephrology & Play Dates
This morning I heard a preacher say something that I've been chewing on mentally all day. In dealing with the subject of judging, he said that God had shown him that it's God's job to judge, the Holy Spirit's job to convict, and our job to love. Love. Love. Love. That's what we are supposed to be all about. There's so much more that can be said to break this all down more, but I'm just mulling it all over and purposing to live it out.
Update on Willow Grace:
I can't believe that we've been home from the hospital for a little over a month! Yesterday we had our check up with the nephrologist (kidney doctor). Everything went well, except for having to have blood taken (oh, the wailing!) and the fact that the initial tests indicate that her little kidneys are having to work too hard. At this moment, I am actually waiting for a call from Vandy Children's to let us know what the further tests and labs indicate and what we might need to do to help her to fully recover. Really, we have two options. Either she'll need to take medicine to help her kidneys function better, or we'll just wait, monitor her progress, and check everything again in a month or two. I'm praying for the latter. The doctor also said that we need to keep her our of school for another week to allow her immune system to get a bit stronger. She's still so different than she was before this whole thing began. Her energy level is lower as is her appetite, and she still gets me up between 2-3 AM every morning. I really could use more than 4-5 hours of sleep a night!
We were blessed with two snow days this week. I know that many people here in Middle Tennessee have had most or even the entire week off, but working in a private school changes the rules on that a bit. On Tuesday, my friend Ralanna brought over her two beautiful little girls, Kassidy and Addy, to play with Willow Grace. When they first arrived, Willow Grace was overjoyed and seemed just like any other little girl her age. They all immediately put on princess dresses, and started playing with the tea set and Disney princess dolls and running all over the house. It was absolutely delightful watching those three little beauties dancing around each other chattering incessantly and giggling over all sorts of silliness. However, about 45 minutes into their visit, Willow Grace became increasing quiet. She wasn't interested in wearing her princess dress or playing with anything. She just wanted to be near me and to sit on the couch and watch her beloved Veggie Tales. They still stayed for another hour or so, and she was happy to have them there but just didn't have the energy to join in. When they left, it was time for dinner which I had to feed to her myself and wake her up in between bites. She was in bed for the night by 6 PM!
I hope you have a wonderful weekend. And don't forget to be purposeful in loving others!
Update on Willow Grace:
I can't believe that we've been home from the hospital for a little over a month! Yesterday we had our check up with the nephrologist (kidney doctor). Everything went well, except for having to have blood taken (oh, the wailing!) and the fact that the initial tests indicate that her little kidneys are having to work too hard. At this moment, I am actually waiting for a call from Vandy Children's to let us know what the further tests and labs indicate and what we might need to do to help her to fully recover. Really, we have two options. Either she'll need to take medicine to help her kidneys function better, or we'll just wait, monitor her progress, and check everything again in a month or two. I'm praying for the latter. The doctor also said that we need to keep her our of school for another week to allow her immune system to get a bit stronger. She's still so different than she was before this whole thing began. Her energy level is lower as is her appetite, and she still gets me up between 2-3 AM every morning. I really could use more than 4-5 hours of sleep a night!
We were blessed with two snow days this week. I know that many people here in Middle Tennessee have had most or even the entire week off, but working in a private school changes the rules on that a bit. On Tuesday, my friend Ralanna brought over her two beautiful little girls, Kassidy and Addy, to play with Willow Grace. When they first arrived, Willow Grace was overjoyed and seemed just like any other little girl her age. They all immediately put on princess dresses, and started playing with the tea set and Disney princess dolls and running all over the house. It was absolutely delightful watching those three little beauties dancing around each other chattering incessantly and giggling over all sorts of silliness. However, about 45 minutes into their visit, Willow Grace became increasing quiet. She wasn't interested in wearing her princess dress or playing with anything. She just wanted to be near me and to sit on the couch and watch her beloved Veggie Tales. They still stayed for another hour or so, and she was happy to have them there but just didn't have the energy to join in. When they left, it was time for dinner which I had to feed to her myself and wake her up in between bites. She was in bed for the night by 6 PM!
I hope you have a wonderful weekend. And don't forget to be purposeful in loving others!
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.
(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'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.
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.
Tuesday, November 30, 2010
New Mercies
Morning comes a lot earlier for me these days since Chris and I are shift sleeping, and my shift ends by 2 AM. As I sat here in the dark listening to the two people who are most precious to me sleep, I started to softly sing, "The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning, new every morning. Great is Thy faithfulness, oh, Lord, great is Thy faithfulness." Do I really believe this? Absolutely. Every morning, I awake and feel as if the Lord has refilled my cup, and I find that I have more faith, hope, joy, and love than I did the day before. Not only is His faithfulness great, but He enables me to be more faithful not only to Him but to all those around me.
My God certainly gave us new mercies and proved Himself to be faithful yesterday as, after days of watching my sweet Willow Grace laying in bed limp as a rag doll, she woke ready to make up for lost time and began to talk nonstop! The first thing she did was tell us that her Rudolph the Red Nosed Reindeer was in the car and we needed to go get it! We were scrambling for socks and shoes and keys, and Chris made the joyful and rash promise that not only could she have Rudolph but anything else in the world she wanted! It's a good thing that really is all she wanted. Whew!
I can't tell you what a joy it was to hear that sweet, yet hoarse, voice squeaking my name and asking questions and showing more of that spunky character we have come to love. She entertained the nurses and doctors and any other visitors who came in the room, and it was absolutely joy-inducing to witness the smiles and hear all the laughter caused by my delightful little girl. So far, she hasn't laughed or even smiled herself, but maybe today or tomorrow we'll get to experience that much anticipated event.
She is still quite pale, weak, and can't eat anything. I can't believe that she hasn't eaten in more than a week now! The dialysis machine perks along, and the plan is still to have her on it indefinitely. She's covered in wires and tubes. She has a little wire on her finger which takes her blood oxygen level and heart rate and has a red light that causes her finger to glow. She tells everyone that she has a Rudolph on her finger. (:
(She loves books. In the picture, you can see Rudolph over her left shoulder, her Rudolph book tucked just behind her, and her little lighted finger. She knows all the words to the song!)
Here are a few things that you can pray for:
1. Her blood oxygen level keeps dropping, and when it drops too much they have to put the tubes back in her nose which, of course, she hates.
2. Pray that her little kidneys will start functioning well on their own.
3. Pray that she will be able to eat something soon and keep it down.
4. She needs an extra measure of patience. As you can imagine, she doesn't want to be in this bed any more. Of course, after she sits up for about a minute, she has to lay back down exhausted.
5. When the dialysis starts each new cycle it really hurts her. They've given her morphine a couple times to help her manage, but I really don't want her to have much of that, and it also makes her really itchy. Pray that God will take away the pain.
Thank you so much for thinking of us here in this little room and for praying for us. It means so much to know that people outside what has become our world care about what's happening here and are lifting us up in prayer. We love you and appreciate you more than you know.
Lamentations 3:21-26 (ESV)
"But this I call to mind,and therefore I have hope: The steadfast love of the LORD never ceases;his mercies never come to an end; they are new every morning; great is your faithfulness.'The LORD is my portion,' says my soul, 'therefore I will hope in him." The LORD is good to those who wait for him, to the soul who seeks him. It is good one should wait quietly for the salvation of the LORD.'"
My God certainly gave us new mercies and proved Himself to be faithful yesterday as, after days of watching my sweet Willow Grace laying in bed limp as a rag doll, she woke ready to make up for lost time and began to talk nonstop! The first thing she did was tell us that her Rudolph the Red Nosed Reindeer was in the car and we needed to go get it! We were scrambling for socks and shoes and keys, and Chris made the joyful and rash promise that not only could she have Rudolph but anything else in the world she wanted! It's a good thing that really is all she wanted. Whew!
I can't tell you what a joy it was to hear that sweet, yet hoarse, voice squeaking my name and asking questions and showing more of that spunky character we have come to love. She entertained the nurses and doctors and any other visitors who came in the room, and it was absolutely joy-inducing to witness the smiles and hear all the laughter caused by my delightful little girl. So far, she hasn't laughed or even smiled herself, but maybe today or tomorrow we'll get to experience that much anticipated event.
She is still quite pale, weak, and can't eat anything. I can't believe that she hasn't eaten in more than a week now! The dialysis machine perks along, and the plan is still to have her on it indefinitely. She's covered in wires and tubes. She has a little wire on her finger which takes her blood oxygen level and heart rate and has a red light that causes her finger to glow. She tells everyone that she has a Rudolph on her finger. (:
(She loves books. In the picture, you can see Rudolph over her left shoulder, her Rudolph book tucked just behind her, and her little lighted finger. She knows all the words to the song!)
Here are a few things that you can pray for:
1. Her blood oxygen level keeps dropping, and when it drops too much they have to put the tubes back in her nose which, of course, she hates.
2. Pray that her little kidneys will start functioning well on their own.
3. Pray that she will be able to eat something soon and keep it down.
4. She needs an extra measure of patience. As you can imagine, she doesn't want to be in this bed any more. Of course, after she sits up for about a minute, she has to lay back down exhausted.
5. When the dialysis starts each new cycle it really hurts her. They've given her morphine a couple times to help her manage, but I really don't want her to have much of that, and it also makes her really itchy. Pray that God will take away the pain.
Thank you so much for thinking of us here in this little room and for praying for us. It means so much to know that people outside what has become our world care about what's happening here and are lifting us up in prayer. We love you and appreciate you more than you know.
Lamentations 3:21-26 (ESV)
"But this I call to mind,and therefore I have hope: The steadfast love of the LORD never ceases;his mercies never come to an end; they are new every morning; great is your faithfulness.'The LORD is my portion,' says my soul, 'therefore I will hope in him." The LORD is good to those who wait for him, to the soul who seeks him. It is good one should wait quietly for the salvation of the LORD.'"
Sunday, November 28, 2010
Walking in Love
For me, walking in love means so many things right now.
1. Obviously, I'm busy with loving my sweet family -- Willow Grace as she recovers in this hospital bed, and my husband Chris as we walk this road together.
2. I've had to choose to walk in love and forgive the doctor who almost sent us home from the ER on Wednesday, a decision that would have had harsh consequences.
3. I'm overwhelmed at the love others are showing me through this whole process. I am truly walking around bathed in the love being poured into my life through prayers, gifts, visits, and words of encouragement.
4. And, as I journey through this trial, I feel the love of my Heavenly Father washing over me every step of the way.
From about 1:30 this morning until our first guests arrived, I sat in the sturdy Cracker Barrel rocking chair beside Willow Grace's hospital bed praying and watching her looking dazed and confused. As a steady stream of visitors (21 in all) wandered in and out of our little room, she was either staring off into space or sleeping. I hoped all day for more response from her, and yet she remained mostly quiet and still. This is totally normal after all that she's been through, but my mother's heart could not help but hope to hear my little girl's voice sweetly chirping my name or to see even the hint of a smile.
The good news: The nephrologist (kidney specialist) who is taking care of Willow Grace said that she is doing better than expected and that the dialysis is progressing a bit faster than expected. She is now in her 28th hour on the dialysis machine, and there have been no complications. At this point, she will be on the machine indefinitely. Though she had to have a transfusion when her red blood count dropped to 20 last night, she did well with the transfusion. She was finally able to get more nourishment tonight when they switched her to a TPN, a bag of nutrients given through her picc line which includes electrolytes, protein, carbohydrates, and sugar.
Other tidbits: For those of you who have asked, you cannot treat HUS with antibiotics. It actually feeds the bacteria and causes it to grow. As to how long we'll be here, the doctor told us that it would be another 2-6 weeks. The last two patients who were recently treated with this here were released after 4 and 6 weeks. I am praying that we will be home by Christmas! Willow Grace is not allowed to be around children under the age of 5 for at least two more weeks because HUS is very contagious for children but does not affect adults.
Since she hasn't been sleeping much at night, Chris and I have been sleeping in shifts, reluctant to leave her awake in the middle of the night alone. I get the first shift. Below is the scripture I am meditating on tonight as I lay my head down to rest. I hope that it encourages you as much as it does me.
Psalm 37:3-7a (New King James Version)
3 Trust in the LORD, and do good; dwell in the land, and feed on His faithfulness. 4 Delight yourself also in the LORD, and He shall give you the desires of your heart.5 Commit your way to the LORD, trust also in Him, and He shall bring it to pass. 6 He shall bring forth your righteousness as the light, and your justice as the noonday. 7 Rest in the LORD, and wait patiently for Him....
1. Obviously, I'm busy with loving my sweet family -- Willow Grace as she recovers in this hospital bed, and my husband Chris as we walk this road together.
2. I've had to choose to walk in love and forgive the doctor who almost sent us home from the ER on Wednesday, a decision that would have had harsh consequences.
3. I'm overwhelmed at the love others are showing me through this whole process. I am truly walking around bathed in the love being poured into my life through prayers, gifts, visits, and words of encouragement.
4. And, as I journey through this trial, I feel the love of my Heavenly Father washing over me every step of the way.
From about 1:30 this morning until our first guests arrived, I sat in the sturdy Cracker Barrel rocking chair beside Willow Grace's hospital bed praying and watching her looking dazed and confused. As a steady stream of visitors (21 in all) wandered in and out of our little room, she was either staring off into space or sleeping. I hoped all day for more response from her, and yet she remained mostly quiet and still. This is totally normal after all that she's been through, but my mother's heart could not help but hope to hear my little girl's voice sweetly chirping my name or to see even the hint of a smile.
The good news: The nephrologist (kidney specialist) who is taking care of Willow Grace said that she is doing better than expected and that the dialysis is progressing a bit faster than expected. She is now in her 28th hour on the dialysis machine, and there have been no complications. At this point, she will be on the machine indefinitely. Though she had to have a transfusion when her red blood count dropped to 20 last night, she did well with the transfusion. She was finally able to get more nourishment tonight when they switched her to a TPN, a bag of nutrients given through her picc line which includes electrolytes, protein, carbohydrates, and sugar.
Other tidbits: For those of you who have asked, you cannot treat HUS with antibiotics. It actually feeds the bacteria and causes it to grow. As to how long we'll be here, the doctor told us that it would be another 2-6 weeks. The last two patients who were recently treated with this here were released after 4 and 6 weeks. I am praying that we will be home by Christmas! Willow Grace is not allowed to be around children under the age of 5 for at least two more weeks because HUS is very contagious for children but does not affect adults.
Since she hasn't been sleeping much at night, Chris and I have been sleeping in shifts, reluctant to leave her awake in the middle of the night alone. I get the first shift. Below is the scripture I am meditating on tonight as I lay my head down to rest. I hope that it encourages you as much as it does me.
Psalm 37:3-7a (New King James Version)
3 Trust in the LORD, and do good; dwell in the land, and feed on His faithfulness. 4 Delight yourself also in the LORD, and He shall give you the desires of your heart.5 Commit your way to the LORD, trust also in Him, and He shall bring it to pass. 6 He shall bring forth your righteousness as the light, and your justice as the noonday. 7 Rest in the LORD, and wait patiently for Him....
Monday, June 15, 2009
life and trials
What if all of it really is about more than I ever thought it could be?
Today, I'll ponder those possibilities.
Today, I'll ponder those possibilities.
Friday, January 30, 2009
My Husband Rocks!
3x5 – A little snapshot of Chris3 categories
5 things for each category
A glimpse of how wonderful Chris really is
5 things for each category
A glimpse of how wonderful Chris really is
5 ways he rocked this week:
- Gave me a foot massage
- Washed the dishes several times.
- Put Willow Grace to bed.
- Helped me get everything together each morning to get out the door with Willow Grace
- How he appreciated things I did like cooking or doing the laundry
- Making sweet tea
- Building fires
- Fixing things around the house
- Working on computers
- Listening
- The way he looks – his hair, his smile, his eyes….
- How wonderfully silly he can be
- The sound of his voice – either talking or singing
- His creativity and storytelling
- His intelligence and his logical way of looking at things
(looking dapper the day we wed)Friday, October 24, 2008
~My Husband Rocks!~ Friday
Why does my husband rock? He rocks because his love is so "daily."Every day he...
~texts or emails me to check on me -- just to see how my day is going and to tell me he misses and loves me.
~makes me laugh.
~utters those three precious words "I love you" several times.
~works hard to provide for his family.
~tells me that I'm beautiful.
~tries to help me around the house and with the baby.
~gives me sweet kisses and wonderful bear hugs.
~compliments me on a wide array of things like my cooking, creativity, silliness, and ingenuity.
~ loves me just the way I am and welcomes my love in return.
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