We escaped to the beach for a few days to celebrate our positive news RE: Hopey. Here is a brief list of things we have experienced in the last 48 hours:
1. Hope reaching simultaneously for my hand and Chappy's hand. Once grasping them, trying to "skip" like a real little girl her age would do. While she still lacks the ability to "skip", she did her very best and we praised her efforts like crazy. Can you imagine the smile?
2. Charlie....petrified of the swimming pool and gripping our SKIN as tightly as possible. Who said kids with Down Syndrome have weak muscle tone???
3. 30+ sting-rays of some sort swimming only 15 feet from the shore....playing with one another, riding the waves in and then zooming out....soaring into the air effortlessly....putting on an incredible two hour show. Lydia and Natalie (with goggles), meanwhile, timidly swimming out to see them and then squealing (nearly walking on water for escape) when the "rays" came too close for comfort.
4. Finishing the book: "Tea with Hezbollah" by Ted Dekker and Carl Madearis. A MUST READ for all believers who want to explore the true meaning of "Loving Our Enemies". The book is a journal of a two week trip the two authors took to the Middle East to see if the story of "The Good Samaritan" is still relevant today. Two words that describe the book: spell-binding and jaw-dropping.
5. Caleb forgetting his size 14 flip flops (left them at home) and not being able to find a replacement pair anywhere....the typical response from store owners: "Size What???"
6. Walks along the sidewalks of Rosemary Beach with Trudy on her purple leash and the little ones in matching Winnie The Pooh strollers beneath a bazillion of the brightest stars....83 degree highs with little humidity and a constant breeze....fresh grouper with cheese grits....and homemade spinach/feta cheese bread from Lalobas Bakery.
Today, I sat on the porch and looked out over the vast emerald sea. It was one of those spectacular sunny days where it would be difficult for me to name anything more beautiful than the ocean along 30a. Hope was climbing in and out of the lounge chair with me and Charlie was sound asleep....the big kids were down on the beach and Chappy was busy washing all the salt and fingerprints from the sliding glass windows.
Nothing else mattered in those moments. Hopey's heart condition was as distant as the horizon.....the memory of a diagnosis as fleeting as the seagulls flying overhead. Peace. Beauty. Completely engulfed by God. Words of the day such as "Apocolypse" and "Armageddon" being bantered around like everyone should be expecting the end of time, news of the "Oil Spill" which is now projected to last for months, headlines reporting the tensions between "North Korea and South Korea" are rising, leaders of Iceland warning Katla Volcano will erupt soon causing a global impact, hurricane season is closing in and not looking good, Iran enriching Uranium in the face of the UN, Greece and Spain posing for bankruptcy and taking the Euro down the tubes, the stock market acting more like a roller coaster than a bull or a bear, and Simon Cowell leaving American Idol (ha! ha!)....none of that mattered to me. Senses on high alert only to the sound of the waves, the bristling of the palms, the scent of salt air, the freedom of the sting rays, and Hope's head leaning snug and safe against my chest.
Isn't it funny how life can be so enormous one minute you fear you might drown and then incredibly minute the next...more like a puddle? One breath with heart beating fast and palms sweating....the next full of calm and serenity. Same person. Same life. Same circumstances. God.
Monday, May 31, 2010
Saturday, May 29, 2010
MRI News!
We were at the hospital much longer than intended yesterday. An emergency case came in by helicopter and took Hopey's spot, so we "semi-patiently" waited our turn. Hopey was supposed to have her MRI at 10am, but wasn't taken back until 1pm. She wasn't allowed to have any food after midnight the night before, so the little thing was so hungry. On top of hunger pains, she is petrified of the hospital and clung to my neck the entire time with wild eyes of pure fear. The day was exhausting.
We thought Hope was only going to have light sedation for the tests, but turned out, they used a full breathing tube on her and knocked her out completely. She came out of sedation with a horrible sore throat and pure delirium. At one point, she threw her head back and knocked my cheek so hard I saw stars. If you see me with a black eye, you'll know where it came from.
The MRI tests were somewhat positive, so we are taking the bit of good news and celebrating BIG TIME!!! The aneurysm is not impacting her Lungs or her Coronary Artery which would have required IMMEDIATE surgery! Praise the Lord!!!
Hope's aneurysm is indeed larger, and appears to be increasing in size even though the rate of change is unknown. The cardiac team will meet together next week (a team of 16) to discuss her MRI at length and will make a recommendation to us or will present a plan to us. Until then, we wait and hold onto the good news we received.
The team is still uncertain whether the aneurysm will rupture or not....and if it does, they do not know what that would mean for little Hope. Some believe it could be catastrophic while others believe we would have time to get her to the hospital to have the hole repaired. Never having seen anything like this before, they just don't know what to do. In addition, since the surgeon could not find the aneurysm during Hope's open heart surgery six months ago, the team is not optimistic he could find it if they opened her chest cavity up again to attempt to remove it again anytime soon. (The aneurysm can be seen clearly when her heart is pumping; however, when her heart is stopped for surgery, the aneurysm blends in with the rest of her heart muscle.) We can tell by what is "NOT SAID" as much as by what "is said" that the cardio team would like to surgically do something about the aneurysm.....but they remain conflicted.
Thank you for all of your prayers; honestly, we felt each one of them yesterday. For the first time in a long time, I was able to actually breathe in the hospital without feeling like I might hyperventilate at any given moment. The Father's hands held me safe all day.
During our long wait yesterday, Lydia sent a verse from Psalms to us via text. It was perfect: "May the Lord answer you in the day of trouble. May the Lord defend you. May He send you help from the sanctuary. May the Lord fulfill your petitions."
We thought Hope was only going to have light sedation for the tests, but turned out, they used a full breathing tube on her and knocked her out completely. She came out of sedation with a horrible sore throat and pure delirium. At one point, she threw her head back and knocked my cheek so hard I saw stars. If you see me with a black eye, you'll know where it came from.
The MRI tests were somewhat positive, so we are taking the bit of good news and celebrating BIG TIME!!! The aneurysm is not impacting her Lungs or her Coronary Artery which would have required IMMEDIATE surgery! Praise the Lord!!!
Hope's aneurysm is indeed larger, and appears to be increasing in size even though the rate of change is unknown. The cardiac team will meet together next week (a team of 16) to discuss her MRI at length and will make a recommendation to us or will present a plan to us. Until then, we wait and hold onto the good news we received.
The team is still uncertain whether the aneurysm will rupture or not....and if it does, they do not know what that would mean for little Hope. Some believe it could be catastrophic while others believe we would have time to get her to the hospital to have the hole repaired. Never having seen anything like this before, they just don't know what to do. In addition, since the surgeon could not find the aneurysm during Hope's open heart surgery six months ago, the team is not optimistic he could find it if they opened her chest cavity up again to attempt to remove it again anytime soon. (The aneurysm can be seen clearly when her heart is pumping; however, when her heart is stopped for surgery, the aneurysm blends in with the rest of her heart muscle.) We can tell by what is "NOT SAID" as much as by what "is said" that the cardio team would like to surgically do something about the aneurysm.....but they remain conflicted.
Thank you for all of your prayers; honestly, we felt each one of them yesterday. For the first time in a long time, I was able to actually breathe in the hospital without feeling like I might hyperventilate at any given moment. The Father's hands held me safe all day.
During our long wait yesterday, Lydia sent a verse from Psalms to us via text. It was perfect: "May the Lord answer you in the day of trouble. May the Lord defend you. May He send you help from the sanctuary. May the Lord fulfill your petitions."
Friday, May 28, 2010
Off To The Hospital For Tests
We are headed out the door with the King of Kings and Lord of Lords at our side....the One who calls us by name....and is able to heal every broken place.
Expecting "MIRACLE-MAKING" news!!!
~Mel, Chap, and little Hope
Expecting "MIRACLE-MAKING" news!!!
~Mel, Chap, and little Hope
Thursday, May 27, 2010
Tomorrow is Hope's MRI
Well, tomorrow is Hopey's next "big day". We take her to Vanderbilt Children's Hospital at 9am to find out more about her little heart.
How do I feel?
My emotions are all over the place; a true indication of mortal weakness. I cry sometimes but at other times I laugh wildly at the silliest things.....my nerves are on high alert leaving me with a tingling sensation in my fingers and toes (and making typing a bit difficult at the moment).....I either eat like a total pig or can't manage a single bite.....I talk non-stop and very loudly or am stone silent....and I stay busy with something (or even nothing) most all of the time....writing songs with Lydia, dead-heading my flower garden, cooking, cleaning, reading, taxi-ing Caleb around to ball practices, and of course, being completely goofy with Hope and Charlie....making them laugh as much as is earthly possible. Occupying my time and mind with the mundane helps me to pass time. Nights are the true dread of my life each day right now. The quiet and darkness make sleep something my body mocks.
Thank you for all of your prayers and support. We are on our knees praying for a complete and total mirale tomorrow with all of the faith we can muster. Today is a day for boldness and power as we slip into our spiritual armor. When we walk into the hospital tomorrow, TRUTH will be buckled around our waist and RIGHTEOUSNESS will shine as bright as the sun on our chests. Our feet will carry us in PEACE, and in our left hand we will grip tightly to FAITH. SALVATION will be our cover and our right hand will be ready to swing the WORD OF GOD like a sword whenever needed.
There is nothing that can destroy the enemy aside from God's Word---In Ephesians 6, every other weapon is a protective weapon. But the SWORD, it is an offensive weapon that can be used to DESTROY. Right now, I would love nothing more than to absolutely obliterate Hope's aneurysm with God's Word!!! Believe me, I am using His Word for that very purpose. This momma woke from fits of broken slumber ready for a fight, and ready to stand for her baby girl against the enemy's evil schemes. Power from on high is filling me and regenerating me through your many prayers. I literally feel it.
As a young child, I hid God's Word in my heart when I went through years of Bible Drills on Sunday evenings at my beloved country church. In times like these, I find His Words springing forth from my mouth without my search for them. God's protection. The battle is on.
How do I feel?
My emotions are all over the place; a true indication of mortal weakness. I cry sometimes but at other times I laugh wildly at the silliest things.....my nerves are on high alert leaving me with a tingling sensation in my fingers and toes (and making typing a bit difficult at the moment).....I either eat like a total pig or can't manage a single bite.....I talk non-stop and very loudly or am stone silent....and I stay busy with something (or even nothing) most all of the time....writing songs with Lydia, dead-heading my flower garden, cooking, cleaning, reading, taxi-ing Caleb around to ball practices, and of course, being completely goofy with Hope and Charlie....making them laugh as much as is earthly possible. Occupying my time and mind with the mundane helps me to pass time. Nights are the true dread of my life each day right now. The quiet and darkness make sleep something my body mocks.
Thank you for all of your prayers and support. We are on our knees praying for a complete and total mirale tomorrow with all of the faith we can muster. Today is a day for boldness and power as we slip into our spiritual armor. When we walk into the hospital tomorrow, TRUTH will be buckled around our waist and RIGHTEOUSNESS will shine as bright as the sun on our chests. Our feet will carry us in PEACE, and in our left hand we will grip tightly to FAITH. SALVATION will be our cover and our right hand will be ready to swing the WORD OF GOD like a sword whenever needed.
There is nothing that can destroy the enemy aside from God's Word---In Ephesians 6, every other weapon is a protective weapon. But the SWORD, it is an offensive weapon that can be used to DESTROY. Right now, I would love nothing more than to absolutely obliterate Hope's aneurysm with God's Word!!! Believe me, I am using His Word for that very purpose. This momma woke from fits of broken slumber ready for a fight, and ready to stand for her baby girl against the enemy's evil schemes. Power from on high is filling me and regenerating me through your many prayers. I literally feel it.
As a young child, I hid God's Word in my heart when I went through years of Bible Drills on Sunday evenings at my beloved country church. In times like these, I find His Words springing forth from my mouth without my search for them. God's protection. The battle is on.
Tuesday, May 25, 2010
Come, Thou Fount Of Every Blessing.....
Come thou fount of every blessing, tune my heart to sing thy grace. Streams of mercy, never ceasing, call for songs of loudest praise. Teach me some melodious sonnet, sung by flaming tongues above. Praise His name---I'm fixed upon it. Name of God's redeeming love.
"Lord, I welcome you to come to me....I want you to refresh me and change my heart....allowing me the gift of loving You ever more. Your mercy is like the waves of the ocean, washing over me moment by moment without fail....teach me to know You more. I praise Your Name, just because You are You. You are the only One worthy of highest praise!"
Hither to thy love has blest me; thou hast bro't me to this place. And I know Thy hand will bring me safely home by Thy good grace. Jesus sought me when a stranger, Wandering from the fold of God; He, to rescue me from danger, bought me with His precious blood.
"You are in control of my life completely, and You have ordained this time in my life through Your perfect sovereignty. You see each and every tree while I am limited and only see a vast forest that is swallowing me. I feel lost in the forest, but You are calling me to trust You. I am answering "I will" even though I don't always feel the "I will" in my heart. When I thought I had life figured out....when I thought I had even You figured out.....You brought Hopey into my life to rescue me from certain danger that pride and self-sufficiency were heaping upon me. You lovingly covered me in Your precious blood and said: "This one....she now belongs to Me!"
O to grace how great a debtor, daily I'm constrained to be. Let thy goodness, like a fetter, bind my wandering heart to Thee. Prone to wander, Lord I feel it....Prone to leave the God I love. Here's my heart, Lord, take and seal it. Seal it for thy courts above.
"I am forever in debt to you.....Your grace fills every hidden crevice deep within my soul. Your goodness beckons me even when I wander from You out of confusion and hurt. When things go wrong, I sometimes turn from You....I feel like throwing my hands up and giving up completely. But Father, the truth is, You are the One I love. You are the love affair of my life. Here is my heart Lord; I give it to you. Even though I do not know what news I will learn on Friday when we take Hopey in for her MRI, even though her future is uncertain, I choose to give you my heart, I choose to give you my baby girl, once again, and I ask that You seal me and my family for eternity that is surely to come."
"Lord, I welcome you to come to me....I want you to refresh me and change my heart....allowing me the gift of loving You ever more. Your mercy is like the waves of the ocean, washing over me moment by moment without fail....teach me to know You more. I praise Your Name, just because You are You. You are the only One worthy of highest praise!"
Hither to thy love has blest me; thou hast bro't me to this place. And I know Thy hand will bring me safely home by Thy good grace. Jesus sought me when a stranger, Wandering from the fold of God; He, to rescue me from danger, bought me with His precious blood.
"You are in control of my life completely, and You have ordained this time in my life through Your perfect sovereignty. You see each and every tree while I am limited and only see a vast forest that is swallowing me. I feel lost in the forest, but You are calling me to trust You. I am answering "I will" even though I don't always feel the "I will" in my heart. When I thought I had life figured out....when I thought I had even You figured out.....You brought Hopey into my life to rescue me from certain danger that pride and self-sufficiency were heaping upon me. You lovingly covered me in Your precious blood and said: "This one....she now belongs to Me!"
O to grace how great a debtor, daily I'm constrained to be. Let thy goodness, like a fetter, bind my wandering heart to Thee. Prone to wander, Lord I feel it....Prone to leave the God I love. Here's my heart, Lord, take and seal it. Seal it for thy courts above.
"I am forever in debt to you.....Your grace fills every hidden crevice deep within my soul. Your goodness beckons me even when I wander from You out of confusion and hurt. When things go wrong, I sometimes turn from You....I feel like throwing my hands up and giving up completely. But Father, the truth is, You are the One I love. You are the love affair of my life. Here is my heart Lord; I give it to you. Even though I do not know what news I will learn on Friday when we take Hopey in for her MRI, even though her future is uncertain, I choose to give you my heart, I choose to give you my baby girl, once again, and I ask that You seal me and my family for eternity that is surely to come."
Thursday, May 20, 2010
Cave Woman
To "escape", I read. Funny how humans want to escape pain, isn't it? My body doesn't react too favorably when we get bad news about our baby girl. I have been through it so many times before, I have learned to dread the onslaught of fear, panic, tears, and solitude. At any given moment, unannounced, one of these emotions pops in for a visit to make me squirm. A book becomes a welcome distraction for me---a way of keeping the emotions at an arm's length. Right now the book is Ted Dekker's latest novel: "The Bride Collector". It is a thriller of all things, but it is rescuing me when I feel darkness creeping closer.
You would have to read the book to fully appreciate the depth of Dekker's thought processes as he masterfully develops his characters, but in this book in particular, he is diving into the human psyche in a way that is riveting to say the least. Riveting and revealing, I should say. One point he makes is that humans tend to use distractions to keep our minds off of the fact that we are truly all alone in this "life journey". This point is ringing clear to me as I feel more and more lonely....not in a way of needing companionship and conversation , but in a way of feeling empty.
Times like this make me keenly aware of how big God is and how small and helpless I am. This makes me angry if I am honest, because I don't like being vulnerable. However, angry or not, I am continually reminded that I am on God's formidable train heading for the many stops He has chosen for me and there is nothing I can do but hang on for the ride and participate in all He has for me during the trip. Jumping off of His train doesn't change the train's destination, it only changes MY final destination----whereas remaining on the train will eventually lead to an eternity where everything will be made right and perfectly good. That is my hope.
Solitude, a word I wrote above, may seem a bit out of place to some who might surmise to know "how I must be feeling". Before Hopey, I don't believe that word existed in my life, because I am generally a "people person". Like I reach for shoes before taking a walk, I now reach for solitude when I receive bad medical news on Hope. Phone calls too often become unwelcome interruptions, the doorbell a device I wish I could yank out of the brick to stomp on, and carrying on a conversation becomes nearly impossible with scrambled-up thoughts (at best) forming in my mind. Shutting out the world enables me to maintain a small bit of control in the midst of an out-of-my-control circumstance. Anorexia and Bulemia are ways a large percentage of women who have out of control lives "cope". Solitude is a way this woman, who fears losing her treasured baby girl, "copes".
You see, by not taking that phone call, I won't be hurt by what the person on the other side of the call might say or not say.....If I don't answer the door, I won't have to worry about breaking down and crying in front of a friend.....and if I am careful of WHEN I choose to go out in public and WHERE I choose to go, I easily avoid having to carry on an unplanned conversation about the weather when my heart is breaking over my daughter. Solitude has eerily become an ally.
There is more. At times I feel like my time with Hope and the rest of my family, all of us together, is sacred. I have an instinct that wants to protect it....guard it.
I hate this. I hate being a "Cave Woman"!
In the kitchen, before dinner time, Lydia took out her violin and played some up-beat fiddle tunes. While Lydia played, Natalie and I clapped our hands and danced around the kitchen knowing Hope would follow. She did, pausing only when the excitement was more than she could bear causing her to stop and stand with her hands folded under her chin in a full out giggle....then she would promptly join in again. Literally, filled from head to toes with joy.
Later in the evening, Hope wrestled with Caleb.....crawled around the floor with Lydia in a game of chase....jumped on top of Natalie while Natalie was napping on the couch (nearly scared poor Nat too death).....climbed on top of the kitchen table just because she has learned to climb....insisted I make Charlie share his cereal with her (which tickled Charlie and became a game of "my turn").....slapped our cat full on the back before Cassie knew what hit her (if you knew Cassie, who is more tiger than kitty, you'd realize she probably deserved it).....emptied kitchen drawers onto the floor for a good laugh and then ran as fast as her legs would carry her to hide.....and the list goes on. The little pistol makes her self the absolute center of the Hollis family world every single day. Always getting into something. Always funny. Always full of life. Period.
Hope is in bed now.....sound asleep. Standing at the doorway, I can hear her snoring and Charlie breathing. I tried to sleep, but the events of the evening kept running through my head. My family. Complete. Whole. Beautiful. Perfect.
How much longer can I keep her, Lord? Please don't take her from me.
You would have to read the book to fully appreciate the depth of Dekker's thought processes as he masterfully develops his characters, but in this book in particular, he is diving into the human psyche in a way that is riveting to say the least. Riveting and revealing, I should say. One point he makes is that humans tend to use distractions to keep our minds off of the fact that we are truly all alone in this "life journey". This point is ringing clear to me as I feel more and more lonely....not in a way of needing companionship and conversation , but in a way of feeling empty.
Times like this make me keenly aware of how big God is and how small and helpless I am. This makes me angry if I am honest, because I don't like being vulnerable. However, angry or not, I am continually reminded that I am on God's formidable train heading for the many stops He has chosen for me and there is nothing I can do but hang on for the ride and participate in all He has for me during the trip. Jumping off of His train doesn't change the train's destination, it only changes MY final destination----whereas remaining on the train will eventually lead to an eternity where everything will be made right and perfectly good. That is my hope.
Solitude, a word I wrote above, may seem a bit out of place to some who might surmise to know "how I must be feeling". Before Hopey, I don't believe that word existed in my life, because I am generally a "people person". Like I reach for shoes before taking a walk, I now reach for solitude when I receive bad medical news on Hope. Phone calls too often become unwelcome interruptions, the doorbell a device I wish I could yank out of the brick to stomp on, and carrying on a conversation becomes nearly impossible with scrambled-up thoughts (at best) forming in my mind. Shutting out the world enables me to maintain a small bit of control in the midst of an out-of-my-control circumstance. Anorexia and Bulemia are ways a large percentage of women who have out of control lives "cope". Solitude is a way this woman, who fears losing her treasured baby girl, "copes".
You see, by not taking that phone call, I won't be hurt by what the person on the other side of the call might say or not say.....If I don't answer the door, I won't have to worry about breaking down and crying in front of a friend.....and if I am careful of WHEN I choose to go out in public and WHERE I choose to go, I easily avoid having to carry on an unplanned conversation about the weather when my heart is breaking over my daughter. Solitude has eerily become an ally.
There is more. At times I feel like my time with Hope and the rest of my family, all of us together, is sacred. I have an instinct that wants to protect it....guard it.
I hate this. I hate being a "Cave Woman"!
In the kitchen, before dinner time, Lydia took out her violin and played some up-beat fiddle tunes. While Lydia played, Natalie and I clapped our hands and danced around the kitchen knowing Hope would follow. She did, pausing only when the excitement was more than she could bear causing her to stop and stand with her hands folded under her chin in a full out giggle....then she would promptly join in again. Literally, filled from head to toes with joy.
Later in the evening, Hope wrestled with Caleb.....crawled around the floor with Lydia in a game of chase....jumped on top of Natalie while Natalie was napping on the couch (nearly scared poor Nat too death).....climbed on top of the kitchen table just because she has learned to climb....insisted I make Charlie share his cereal with her (which tickled Charlie and became a game of "my turn").....slapped our cat full on the back before Cassie knew what hit her (if you knew Cassie, who is more tiger than kitty, you'd realize she probably deserved it).....emptied kitchen drawers onto the floor for a good laugh and then ran as fast as her legs would carry her to hide.....and the list goes on. The little pistol makes her self the absolute center of the Hollis family world every single day. Always getting into something. Always funny. Always full of life. Period.
Hope is in bed now.....sound asleep. Standing at the doorway, I can hear her snoring and Charlie breathing. I tried to sleep, but the events of the evening kept running through my head. My family. Complete. Whole. Beautiful. Perfect.
How much longer can I keep her, Lord? Please don't take her from me.
Tuesday, May 18, 2010
A Note From Natalie....
We adopted Nat-Nat from a Russian orphanage nearly eight and a half years ago when she was only three years old. Chappy and I are continually amazed by how far our Russian princess has come. This year, for the very first time, Natalie has been an official "school girl". She began the fifth grade in January---mid-school year---and has done so well. In fact, tomorrow she will be receiving an award at school. Chappy and I will be attending the award ceremony and can hardly wait!
Natalie doesn't write (for public viewing) very often. She was born with Fetal Alcohol Syndrome and it has impacted her ability to organize thoughts making writing (and communication in general) often difficult. However, Natalie asked to be able to share her heart this evening, willing to humble herself before all of you. I am typing exactly what she has written and will only correct her spelling. She worked diligently on this for three hours this evening....I know the Father is pleased with Natalie's eagerness to share her heart:
When I was born, my mom didn't want a child. So she left, and one of her friends saw me the next day. I found out I was not with my mom (I was in the orphanage and thought there was no hope for me), but when I was three years old there was a mom and dad. They came to me and introduced themselves to me. After a couple of weeks, I was walking out of the orphanage with my new mom and dad. When we got off the airplane from Russia, I saw a girl and boy waiting for me. The boy's name was Caleb and the girl's name was Lydia. We headed home.
When Lydia and I were five and Caleb was nine, my mom and dad came into the girls' room. They said, "It is something in mom's tummy." So, I screamed, " A baby!" I was right.
Before we had the baby the doctor first told us it is a girl and second she has Down Syndrome. We didn't know what to think, but we knew we weren't going to abort her. When we had the girl, we named her Hope. Though when Hope was five days old she had a stomach surgery. Here is the reason we named her Hope: The doctors and nurses told us: "She won't make it because of her heart; there isn't any hope". Hope is a perfect name.
After her second and latest (third) open heart surgeries, we believed she would live and she has. When Hope had her recent open heart surgery (6 months ago), the doctors found an aneurysm in her heart which can't be fixed. Hope had a heart check up last week and the aneurysm has gotten worse. That's the story.
When Hopey was just born I would stand around the hospital bed praying for her and knowing she was going to make it. With the situation, I love Hope even a thousand times more. I am going to keep praying for a miracle. God has taught me alot of stuff. Right now Hope can't sing and she doesn't dance too perfectly, but some day in heaven she will have her own mansion. She will be in a marching band in heaven in the very front singing "This Little Light of Mine" and dancing perfectly, but right now on earth she is on the very bottom to people. In heaven she will be at the very highest rate you could get to.
God saved me from the orphanage and He taught me to never give up. I will keep doing the fruits of the spirit: Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, and Self-Control. Hope can't do everything I can do, so I will do my best. I like the verse that says: "Cast your cares on the Lord and He will sustain you." Psalm 55:22.
The reason I wrote this blog tonight was because tomorrow I am earning my first very big award. I have no clue what it is for yet, but I know it is big. Hope will never be able to be a great writer because of her Down Syndrome, so I want to write for her tonight. I want to do my best at everything I can do because she will never do all that I can do. Tomorrow I will accept my award for Hope. She is the reason I work hard every day. Her little light keeps shining.
Thank you for praying and please keep praying. Blessings and Love,
Natalie
Natalie doesn't write (for public viewing) very often. She was born with Fetal Alcohol Syndrome and it has impacted her ability to organize thoughts making writing (and communication in general) often difficult. However, Natalie asked to be able to share her heart this evening, willing to humble herself before all of you. I am typing exactly what she has written and will only correct her spelling. She worked diligently on this for three hours this evening....I know the Father is pleased with Natalie's eagerness to share her heart:
When I was born, my mom didn't want a child. So she left, and one of her friends saw me the next day. I found out I was not with my mom (I was in the orphanage and thought there was no hope for me), but when I was three years old there was a mom and dad. They came to me and introduced themselves to me. After a couple of weeks, I was walking out of the orphanage with my new mom and dad. When we got off the airplane from Russia, I saw a girl and boy waiting for me. The boy's name was Caleb and the girl's name was Lydia. We headed home.
When Lydia and I were five and Caleb was nine, my mom and dad came into the girls' room. They said, "It is something in mom's tummy." So, I screamed, " A baby!" I was right.
Before we had the baby the doctor first told us it is a girl and second she has Down Syndrome. We didn't know what to think, but we knew we weren't going to abort her. When we had the girl, we named her Hope. Though when Hope was five days old she had a stomach surgery. Here is the reason we named her Hope: The doctors and nurses told us: "She won't make it because of her heart; there isn't any hope". Hope is a perfect name.
After her second and latest (third) open heart surgeries, we believed she would live and she has. When Hope had her recent open heart surgery (6 months ago), the doctors found an aneurysm in her heart which can't be fixed. Hope had a heart check up last week and the aneurysm has gotten worse. That's the story.
When Hopey was just born I would stand around the hospital bed praying for her and knowing she was going to make it. With the situation, I love Hope even a thousand times more. I am going to keep praying for a miracle. God has taught me alot of stuff. Right now Hope can't sing and she doesn't dance too perfectly, but some day in heaven she will have her own mansion. She will be in a marching band in heaven in the very front singing "This Little Light of Mine" and dancing perfectly, but right now on earth she is on the very bottom to people. In heaven she will be at the very highest rate you could get to.
God saved me from the orphanage and He taught me to never give up. I will keep doing the fruits of the spirit: Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, and Self-Control. Hope can't do everything I can do, so I will do my best. I like the verse that says: "Cast your cares on the Lord and He will sustain you." Psalm 55:22.
The reason I wrote this blog tonight was because tomorrow I am earning my first very big award. I have no clue what it is for yet, but I know it is big. Hope will never be able to be a great writer because of her Down Syndrome, so I want to write for her tonight. I want to do my best at everything I can do because she will never do all that I can do. Tomorrow I will accept my award for Hope. She is the reason I work hard every day. Her little light keeps shining.
Thank you for praying and please keep praying. Blessings and Love,
Natalie
Sunday, May 16, 2010
Perspectives from a Brother's Heart...
Hey everyone! Caleb here,
I wanted to share with everyone how Hope's life and previous news has affected me so far. First of all, Hope came into our lives about 4 1/2 years ago. Before her, our family didn't know the true meaning of love. To us love was just a feeling that we all felt towards each other, but soon we found that it's much more than that.
When Hope was born, we knew that she wasn"t supposed to live for anything more than a day, but look how far she's come. Her heart wasn't supposed to last for anytime at all, but it's still pumping. We all have prayed that she would be healed and that her heart would heal completely. Just recently we had a stumbling thought: "What if Hope was supposed to die in the beginning?" Wouldn't that mean every day we've had with her is a miracle?
To Hope, I'm big brother. The one who picks her up when she falls; when she wants to watch a movie, I am the one who finds her favorite; when she's hungry I find "unhealthy" food for her to eat (when moms not looking), and I pray with her every night during our family meetings, on our knees around the ottoman with her hands clasped and eyes peeping around to see who is still praying (making sure everyone is still praying). In a way, I feel like a hero to Hope.
However, I don't know how to handle her latest news. There has always been a fix for Hope, another surgery and another million prayers. How am I, Caleb, Hope's hero supposed to tell her everything is going to be okay? How am I to hold her hand and whisper encouraging words while she lays in her bed each night with a big smile on her face? How can I do that without tears in my eyes and a lump in my throat?
Many a time I sit and wonder, Why did God give a bad heart to Hope when there are those who take their life for granted everyday of their life and others who seek evil? Why not give them a heart like Hopes and make hers wholesome and complete? Why give a good heart to someone who is just going to waste their blessing?
Lately, I've had alot of stuggles in life, home and school. We all have, because it is very hard to hold all the seams together and not break apart. Especially with Hope's issues. It's hard to live life knowing that the one person in the world you love the most might not live much longer. It's hard to picture not waking up to a Hopey hug n' kiss everyday, and not chasing after her as she tries to get away with chucking glasses and pictures across the room, hearing her giggle as you tickle her over and over and over again to almost a point where she can't breath, and watching her smiling, laughing, and yelling as she preaches to the angels that float over her head with hands raised high and feet marching.
Hope is the absolute biggest blessing in the world. If I had the choice to change her Down syndrome...never. Then she wouldn't be Hope. If I had the choice to heal her heart...in a heart beat.
Thanks for reading; Thanks more for praying,
Caleb
I wanted to share with everyone how Hope's life and previous news has affected me so far. First of all, Hope came into our lives about 4 1/2 years ago. Before her, our family didn't know the true meaning of love. To us love was just a feeling that we all felt towards each other, but soon we found that it's much more than that.
When Hope was born, we knew that she wasn"t supposed to live for anything more than a day, but look how far she's come. Her heart wasn't supposed to last for anytime at all, but it's still pumping. We all have prayed that she would be healed and that her heart would heal completely. Just recently we had a stumbling thought: "What if Hope was supposed to die in the beginning?" Wouldn't that mean every day we've had with her is a miracle?
To Hope, I'm big brother. The one who picks her up when she falls; when she wants to watch a movie, I am the one who finds her favorite; when she's hungry I find "unhealthy" food for her to eat (when moms not looking), and I pray with her every night during our family meetings, on our knees around the ottoman with her hands clasped and eyes peeping around to see who is still praying (making sure everyone is still praying). In a way, I feel like a hero to Hope.
However, I don't know how to handle her latest news. There has always been a fix for Hope, another surgery and another million prayers. How am I, Caleb, Hope's hero supposed to tell her everything is going to be okay? How am I to hold her hand and whisper encouraging words while she lays in her bed each night with a big smile on her face? How can I do that without tears in my eyes and a lump in my throat?
Many a time I sit and wonder, Why did God give a bad heart to Hope when there are those who take their life for granted everyday of their life and others who seek evil? Why not give them a heart like Hopes and make hers wholesome and complete? Why give a good heart to someone who is just going to waste their blessing?
Lately, I've had alot of stuggles in life, home and school. We all have, because it is very hard to hold all the seams together and not break apart. Especially with Hope's issues. It's hard to live life knowing that the one person in the world you love the most might not live much longer. It's hard to picture not waking up to a Hopey hug n' kiss everyday, and not chasing after her as she tries to get away with chucking glasses and pictures across the room, hearing her giggle as you tickle her over and over and over again to almost a point where she can't breath, and watching her smiling, laughing, and yelling as she preaches to the angels that float over her head with hands raised high and feet marching.
Hope is the absolute biggest blessing in the world. If I had the choice to change her Down syndrome...never. Then she wouldn't be Hope. If I had the choice to heal her heart...in a heart beat.
Thanks for reading; Thanks more for praying,
Caleb
Thursday, May 13, 2010
Hopey Update
The Cardiology team met today to discuss Hopey's case at length. The next step will be an MRI which has been scheduled for May 28th at 9am. There are two concerns at this point: First, is the aneurysm so large it is now impacting lung flow? Second, if the aneurysm bursts, what will the impact be? We hope the MRI is a more definitive test than the ultrasound.
Lydia and I went out to lunch today with Hope and Charlie and were able to have some very good discussion. After writing the blog and sharing her heart with all of you last evening, Lydia was in the mood to talk at length about her fears concerning Hope. She read every single comment that was left on her blog post. In fact, she ran in to check for comments most of the afternoon, reading them over and over again, receiving comfort from your words and being bathed in your prayers. Thank you. During our lunch today, Lydia, still only eleven years old, sorted through a whole host of conflicting thoughts....from feeling very guilty for being angry with God for Hope's ongoing heart issues to wondering if she is really even saved! I mostly listened and nodded my head as she spoke.
We left the restaurant and as I was putting Hope into her carseat (having a difficult time fastening her in because the sweet thing with a full belly was more interested in hugging me) I had a sudden thought. Lydia had already put Charlie into his seat and was placing his stroller into the back of the van when I shouted out: "Lydia, what if God is giving us a miracle right now?"
Lydia squinted her big brown eyes at me as if to say: "Crazy momma say what?"
I waited for her to get settled into the car and then turned in my seat to look at her face to face:
"What if Hope was supposed to die months ago....or even years ago? What if that was God's original plan? And what if, because of our constant prayers and petitions to Him on Hope's behalf, He is continuing to give her another day....then another....then another? What if we are angry with Him right now when we should actually be thanking him?"
She just looked at me.
"Maybe we should just continue asking for more time with Hope, Lydia, and if we have Hopey again tomorrow, perhaps we should be truly grateful and celebrate the Lord with hearts full of gratitude. Then, we will ask Him again...and again...and again....for one more day....one more day....just one more day. God loves us Lydia, asking for one more day will never be too much to ask."
Silence.
I turned and started the car and we pulled out of the parking lot. After a few minutes I shot a quick look at Lydia. Tears.
To break up the somber mood, I thought we should celebrate right then in the car. I broke out in "This Little Light of Mine"....one of Hopey's favorite songs (and Charlie's too). Hopey still cannot speak, but she can hold that little finger up and make her own kind of joyful noise. "Hide it under a bushel, NO! I'm gonna let it shine." Before you know it, Hopey was putting her little light under the bushel as Lydia was hollering: "No"...little Charlie was so stiff with excitement he could hardly stand it. Wonderful praise for the ONE who continues to give us ONE MORE DAY!
Tears. This time rolling down my cheeks. This time, tears of joy and gratitude. Oh, Father in heaven, please give us one more day.....
Lydia and I went out to lunch today with Hope and Charlie and were able to have some very good discussion. After writing the blog and sharing her heart with all of you last evening, Lydia was in the mood to talk at length about her fears concerning Hope. She read every single comment that was left on her blog post. In fact, she ran in to check for comments most of the afternoon, reading them over and over again, receiving comfort from your words and being bathed in your prayers. Thank you. During our lunch today, Lydia, still only eleven years old, sorted through a whole host of conflicting thoughts....from feeling very guilty for being angry with God for Hope's ongoing heart issues to wondering if she is really even saved! I mostly listened and nodded my head as she spoke.
We left the restaurant and as I was putting Hope into her carseat (having a difficult time fastening her in because the sweet thing with a full belly was more interested in hugging me) I had a sudden thought. Lydia had already put Charlie into his seat and was placing his stroller into the back of the van when I shouted out: "Lydia, what if God is giving us a miracle right now?"
Lydia squinted her big brown eyes at me as if to say: "Crazy momma say what?"
I waited for her to get settled into the car and then turned in my seat to look at her face to face:
"What if Hope was supposed to die months ago....or even years ago? What if that was God's original plan? And what if, because of our constant prayers and petitions to Him on Hope's behalf, He is continuing to give her another day....then another....then another? What if we are angry with Him right now when we should actually be thanking him?"
She just looked at me.
"Maybe we should just continue asking for more time with Hope, Lydia, and if we have Hopey again tomorrow, perhaps we should be truly grateful and celebrate the Lord with hearts full of gratitude. Then, we will ask Him again...and again...and again....for one more day....one more day....just one more day. God loves us Lydia, asking for one more day will never be too much to ask."
Silence.
I turned and started the car and we pulled out of the parking lot. After a few minutes I shot a quick look at Lydia. Tears.
To break up the somber mood, I thought we should celebrate right then in the car. I broke out in "This Little Light of Mine"....one of Hopey's favorite songs (and Charlie's too). Hopey still cannot speak, but she can hold that little finger up and make her own kind of joyful noise. "Hide it under a bushel, NO! I'm gonna let it shine." Before you know it, Hopey was putting her little light under the bushel as Lydia was hollering: "No"...little Charlie was so stiff with excitement he could hardly stand it. Wonderful praise for the ONE who continues to give us ONE MORE DAY!
Tears. This time rolling down my cheeks. This time, tears of joy and gratitude. Oh, Father in heaven, please give us one more day.....
Wednesday, May 12, 2010
Hi. This Is Lydia.
Hi Blog Family,
It has been a very long time since I have written on my mom's blog. I asked her permission tonight. I want to share what is on my heart.
First, I want to talk about Darya. Amy Joy. I believed God asked me to raise money to go adopt Darya from the orphanage. And then He gave us all the money we needed to go get her. Then lots of things got in our way and we had to decide not to adopt her. One of those things was that my dad got too old for the Ukraine and the other thing was that some of Hope's doctors didn't want her to travel so far. It was a sad time and made me question God alot.
After Hope's doctor's appointment yesterday I now know God didn't allow things to work out with Darya because of Hope's love balloon. He wanted me to fall in love with Darya and raise the money for her so another wonderful family could make her there daughter. She will be that family's only girl and they can't wait to get her. The dad is not too old for the Ukraine and they don't have any other kids that have medical problems. God had this in his plan the whole time and we just didn't know it. My whole family has been upset about not adopting Darya for so long and now we can have peace in our hearts. That's good.
But I have to say that I still don't get God. For so many years I have prayed for Hope to be healed. I remember going into her room by myself and getting down on my knees and hugging her when she was just a little baby to pray to God to heal her heart. I would cry and beg him. I have done that so many times and for four years. I know God hears me. I know he knows what I am asking him for. So why doesn't he heal her heart? She is one of his children.
My dad said tonight in our family meeting that prisons don't have a single person with Down Syndrome in them. People with Down Syndrome don't murder or steal or hurt people. I think God must love them alot. I see Hope every-day doing her best to succeed in life , she gives 100% in EVERY-THING she does, and now she gets faced with horrible news.......what is God doing with her?
Now do see why I am so confused?
Half of my life has been battling with my family in these heart surgerys.....I just want to say God why why why wont you heal her? I am starting to wonder if it really matters when I pray or if God is just going to do what he is going to do no matter what. I pray with all of my heart, and he says if I have faith and believe with all my heart he will answer my prayer but he doesn't and I don't understand why.
My dad is very sad about Hope and I worry about him. I wrote him a card tonight with a poem to make him feel better. He thinks I wrote the poem all by myself and bragged on me but I really got it from the internet. I guess it counts because I wrote it in my own handwriting. This is hard on all of us because we play with Hopey all of the time. My mom says we need to be happy at all times instead of sulky and mad because that is not going to get us anywhere. Instead we need to enjoy our life and our time with Hopey. We are trying.
Thank-you for giving the time to read my post this evening :) I want to say that I am happy Darya will get her new family even though it isn't mine.
Much love & Blessings to every-one!
Lydia
It has been a very long time since I have written on my mom's blog. I asked her permission tonight. I want to share what is on my heart.
First, I want to talk about Darya. Amy Joy. I believed God asked me to raise money to go adopt Darya from the orphanage. And then He gave us all the money we needed to go get her. Then lots of things got in our way and we had to decide not to adopt her. One of those things was that my dad got too old for the Ukraine and the other thing was that some of Hope's doctors didn't want her to travel so far. It was a sad time and made me question God alot.
After Hope's doctor's appointment yesterday I now know God didn't allow things to work out with Darya because of Hope's love balloon. He wanted me to fall in love with Darya and raise the money for her so another wonderful family could make her there daughter. She will be that family's only girl and they can't wait to get her. The dad is not too old for the Ukraine and they don't have any other kids that have medical problems. God had this in his plan the whole time and we just didn't know it. My whole family has been upset about not adopting Darya for so long and now we can have peace in our hearts. That's good.
But I have to say that I still don't get God. For so many years I have prayed for Hope to be healed. I remember going into her room by myself and getting down on my knees and hugging her when she was just a little baby to pray to God to heal her heart. I would cry and beg him. I have done that so many times and for four years. I know God hears me. I know he knows what I am asking him for. So why doesn't he heal her heart? She is one of his children.
My dad said tonight in our family meeting that prisons don't have a single person with Down Syndrome in them. People with Down Syndrome don't murder or steal or hurt people. I think God must love them alot. I see Hope every-day doing her best to succeed in life , she gives 100% in EVERY-THING she does, and now she gets faced with horrible news.......what is God doing with her?
Now do see why I am so confused?
Half of my life has been battling with my family in these heart surgerys.....I just want to say God why why why wont you heal her? I am starting to wonder if it really matters when I pray or if God is just going to do what he is going to do no matter what. I pray with all of my heart, and he says if I have faith and believe with all my heart he will answer my prayer but he doesn't and I don't understand why.
My dad is very sad about Hope and I worry about him. I wrote him a card tonight with a poem to make him feel better. He thinks I wrote the poem all by myself and bragged on me but I really got it from the internet. I guess it counts because I wrote it in my own handwriting. This is hard on all of us because we play with Hopey all of the time. My mom says we need to be happy at all times instead of sulky and mad because that is not going to get us anywhere. Instead we need to enjoy our life and our time with Hopey. We are trying.
Thank-you for giving the time to read my post this evening :) I want to say that I am happy Darya will get her new family even though it isn't mine.
Much love & Blessings to every-one!
Lydia
Tuesday, May 11, 2010
A Word From Yancey
"I once attended a funeral service for a teenage girl killed in a car accident. Her mother wailed: "The Lord took her home....He must have had a purpose....thank you Lord." I have been with sick Christians who agonize over the question: What is God trying to teach me? Or, they may plead: How can I find enough faith to get rid of this illness? or How can I get God to rescue me? Maybe such people have it all wrong. Maybe God isn't trying to tell us anything specific each time we hurt. Pain and suffering are part and parcel of our planet, and Christians are not exempt." (Philip Yancey, "Where Is God When It Hurts")
Charlie's heart appointment was great today.....it looks as if the hole in his heart has closed up completely. Praise! Hope's heart appointment, however, did not go well. It appears her "Love Balloon" has increased and changed in size and the patch on her heart has started to protrude and bulge out as well. She had two heart ultrasounds today, but neither found the culprit resonsible for causing this change in her condition. Her doctor is at a loss and was surprised her heart had changed this much in such a short period of time----her last appointment was only 6 months ago. The doctors have "conference" on Thursday morning when the entire cardiac team will get together and go over Hope's images and hopefully offer some thoughts to us.
The next weeks, I will be blogging alot about this new journey we are on with Hopey. Well, I guess I should call it "walking a little bit further" along the same worn path of a five year journey. Over 300 people checked the blog today. Thank you. I believe each of you prayed for our little one and I cannot even begin to express my sincere gratitude. If you decide to check in on me via the blog over the next days and weeks, you are going to possibly find my writing to seem very much like waves crashing into the beach.....full of ups and downs, tides in and tides out, crystal clear at times and full of seaweed and junk at other times. I'm just giving a fair warning: I, once gain, have alot to work out with God.
I considered taking my blog "private" today.....only sharing it with family. My reason? Because I want to be honest and "bare" about what I am feeling inside, but fear my wrestling through emotions could offend or become a stumbling block. And, if I worry about being a stumbling block, it is likely to become nearly impossible for me to be totally honest and open. However, after much consideration, I decided against taking my blog private for a completely selfish reason: I am desperate for your prayers for Hopey, and those who choose to walk with me (though there may be only a few who hang in with me for the long haul), are people Hopey needs in her life, even if it is "cyber friendship" at best.
I go to bed angry tonight. My fist is raised to heaven. I read Yancey's words this evening and wondered what kind of God would choose to allow His "beloved" children to suffer? What kind of God allows children to starve, to be abused, to suffer from disease, defects, and disorders? Why do we have to be SHOWN our need for Him?
And then I recall how much Caleb and Lydia learned from our adopting a needy little orphan from Russia......and how much Caleb, Lydia and Natalie learned from our birth of Hopey.....and again through our adoption of little red-headed Charlie. I remember the eye-opening experience Chappy had in Africa last fall when he met true poverty face to face and touched it with his own hands. Each time we have visited a nursing home.....lesson learned. Each time we have fed the hungry.....lesson learned. Each time we have stopped to give money to a beggar.....lesson learned. And all of these experiences have formed us into individuals who don't disregard the afflicted and who give thanks for the blessings many take for granted.
Maybe God works this same way. Perhaps by showing us our imperfections and weaknesses, we really do begin to sense our need for Him to be real.
Hopey has a most unusual case; there isn't another documented case like hers to be found. If you desire to pray for something very specific, please pray that God will lead the cardiac staff to a hidden case that is similar to Hope's. There has to be one somewhere in the world.
And to all of the blog followers who know Hopey, who have held her and loved her.....I am so sorry to give you this news. I know you ache for our family and especially for our little angel. While I am hurting this evening, my thoughts of you are what brings me the most comfort. Thank you a million times for loving Hopey in spite of her many imperfections.
Charlie's heart appointment was great today.....it looks as if the hole in his heart has closed up completely. Praise! Hope's heart appointment, however, did not go well. It appears her "Love Balloon" has increased and changed in size and the patch on her heart has started to protrude and bulge out as well. She had two heart ultrasounds today, but neither found the culprit resonsible for causing this change in her condition. Her doctor is at a loss and was surprised her heart had changed this much in such a short period of time----her last appointment was only 6 months ago. The doctors have "conference" on Thursday morning when the entire cardiac team will get together and go over Hope's images and hopefully offer some thoughts to us.
The next weeks, I will be blogging alot about this new journey we are on with Hopey. Well, I guess I should call it "walking a little bit further" along the same worn path of a five year journey. Over 300 people checked the blog today. Thank you. I believe each of you prayed for our little one and I cannot even begin to express my sincere gratitude. If you decide to check in on me via the blog over the next days and weeks, you are going to possibly find my writing to seem very much like waves crashing into the beach.....full of ups and downs, tides in and tides out, crystal clear at times and full of seaweed and junk at other times. I'm just giving a fair warning: I, once gain, have alot to work out with God.
I considered taking my blog "private" today.....only sharing it with family. My reason? Because I want to be honest and "bare" about what I am feeling inside, but fear my wrestling through emotions could offend or become a stumbling block. And, if I worry about being a stumbling block, it is likely to become nearly impossible for me to be totally honest and open. However, after much consideration, I decided against taking my blog private for a completely selfish reason: I am desperate for your prayers for Hopey, and those who choose to walk with me (though there may be only a few who hang in with me for the long haul), are people Hopey needs in her life, even if it is "cyber friendship" at best.
I go to bed angry tonight. My fist is raised to heaven. I read Yancey's words this evening and wondered what kind of God would choose to allow His "beloved" children to suffer? What kind of God allows children to starve, to be abused, to suffer from disease, defects, and disorders? Why do we have to be SHOWN our need for Him?
And then I recall how much Caleb and Lydia learned from our adopting a needy little orphan from Russia......and how much Caleb, Lydia and Natalie learned from our birth of Hopey.....and again through our adoption of little red-headed Charlie. I remember the eye-opening experience Chappy had in Africa last fall when he met true poverty face to face and touched it with his own hands. Each time we have visited a nursing home.....lesson learned. Each time we have fed the hungry.....lesson learned. Each time we have stopped to give money to a beggar.....lesson learned. And all of these experiences have formed us into individuals who don't disregard the afflicted and who give thanks for the blessings many take for granted.
Maybe God works this same way. Perhaps by showing us our imperfections and weaknesses, we really do begin to sense our need for Him to be real.
Hopey has a most unusual case; there isn't another documented case like hers to be found. If you desire to pray for something very specific, please pray that God will lead the cardiac staff to a hidden case that is similar to Hope's. There has to be one somewhere in the world.
And to all of the blog followers who know Hopey, who have held her and loved her.....I am so sorry to give you this news. I know you ache for our family and especially for our little angel. While I am hurting this evening, my thoughts of you are what brings me the most comfort. Thank you a million times for loving Hopey in spite of her many imperfections.
Monday, May 10, 2010
Tomorrow is a Big Day! It is Heart Check-Up Day!
Hey blog family,
I would like to request prayer from you all. Tomorrow, we take both Hopey and Charlie in for heart check-ups. Most of you are aware that Hope has already been through three serious open heart surgeries and still has an aneurysm (nicknamed her "Love Balloon") in her heart. Whoa, I get nervous butterflies just typing about her diagnosis. I don't know what we will learn tomorrow, but I admit I am full of fear. Each time Chappy and I pull into the Vanderbilt Children's Hospital parking garage, I have to literally force my legs to carry me into the hospital.....as we take the elevator to the 5th floor, I have to remind myself to breathe......and as Hope begins her appointment, I pray without ceasing begging God to perform a miracle. Tomorrow will be no different. So, simply picture Hopey with her hair up in high pony tail on her head topped with a big golden bow, wearing her green smocked dress with a school bus on the front when you pray for her. Our little baby doll.
Charlie, the sweetest of all red heads, was born with a small hole in his heart. The cardiologist hopes we will find it has closed on its own and will not require surgery.
The word for the day tomorrow will be VULNERABLE. Chappy and I will be like worthless lumps of nothingness just waiting on the stab to come puncture the most guarded part of our souls. It is almost like PAIN stalks us, watches us, and is lying in wait.
Hope is already down for the night. Our nightly ritual ends when I count to three and allow her favorite blankets to parachute over her head before resting perfectly around her tiny body. In response, she shakes her hands in glee and squeals with laughter.....every single night....it never gets old to her. Tell me, how in the world can I sleep this evening knowing I am carting her in to potential bad news tomorrow? On the outside, she is perfectly fine....full of energy and joy. It is so difficult to fathom her heart is struggling so. Oh God, please let tomorrow be different; please heal Hopey's heart.
I know there are many who would remind me this evening that "faith is the opposite of fear" and I should exercise faith in both word and deed for God to do his healing work in Hope's heart. Truth is, this old warrior mom is tired. Faith has not been a friend to me when it has come to Hope's heart. While I know God is intimately involved in her prognosis, and while I believe with all of my heart He can heal her, I am also painfully aware that He is in control and ordered Hope's days long before she entered the world. Faith, I have found, is accepting His plan over my own. Not easy, and had I been God, it certainly wouldn't have been my way of designing the order of things.
For many years I talked a good talk, friends. You would have possibly called me the "finest Christian" you had ever met. I might have even agreed silently, while quickly telling you with word that you were being way too kind. Pride it is called, isn't it, that comes before a fall? Chopped at the knees by a little 5lb. 2oz. baby with Down syndrome. God certainly does use the weakest to confound the strong and "wise".
Thank you in advance for your prayers tomorrow. I know you already know that I love my little ones with a crazy kind of love, and I would wish to protect them all the days of their lives from any and all kinds of harm. If there were a "recipe" for healing, know that I would follow it to the letter. I am capable of that. Alas, however, there is none. So, as I have done for four years, I will take one step at a time tomorrow in hope of finding that pot of gold at the end of the proverbial rainbow. It's time. God, please hear me, it is time for You to heal Hopey's heart. Forgive me for where I have failed You, and please don't hold my sins against little Hopey in any way.....I beg of You, dear Lord, show me Your power!
I would like to request prayer from you all. Tomorrow, we take both Hopey and Charlie in for heart check-ups. Most of you are aware that Hope has already been through three serious open heart surgeries and still has an aneurysm (nicknamed her "Love Balloon") in her heart. Whoa, I get nervous butterflies just typing about her diagnosis. I don't know what we will learn tomorrow, but I admit I am full of fear. Each time Chappy and I pull into the Vanderbilt Children's Hospital parking garage, I have to literally force my legs to carry me into the hospital.....as we take the elevator to the 5th floor, I have to remind myself to breathe......and as Hope begins her appointment, I pray without ceasing begging God to perform a miracle. Tomorrow will be no different. So, simply picture Hopey with her hair up in high pony tail on her head topped with a big golden bow, wearing her green smocked dress with a school bus on the front when you pray for her. Our little baby doll.
Charlie, the sweetest of all red heads, was born with a small hole in his heart. The cardiologist hopes we will find it has closed on its own and will not require surgery.
The word for the day tomorrow will be VULNERABLE. Chappy and I will be like worthless lumps of nothingness just waiting on the stab to come puncture the most guarded part of our souls. It is almost like PAIN stalks us, watches us, and is lying in wait.
Hope is already down for the night. Our nightly ritual ends when I count to three and allow her favorite blankets to parachute over her head before resting perfectly around her tiny body. In response, she shakes her hands in glee and squeals with laughter.....every single night....it never gets old to her. Tell me, how in the world can I sleep this evening knowing I am carting her in to potential bad news tomorrow? On the outside, she is perfectly fine....full of energy and joy. It is so difficult to fathom her heart is struggling so. Oh God, please let tomorrow be different; please heal Hopey's heart.
I know there are many who would remind me this evening that "faith is the opposite of fear" and I should exercise faith in both word and deed for God to do his healing work in Hope's heart. Truth is, this old warrior mom is tired. Faith has not been a friend to me when it has come to Hope's heart. While I know God is intimately involved in her prognosis, and while I believe with all of my heart He can heal her, I am also painfully aware that He is in control and ordered Hope's days long before she entered the world. Faith, I have found, is accepting His plan over my own. Not easy, and had I been God, it certainly wouldn't have been my way of designing the order of things.
For many years I talked a good talk, friends. You would have possibly called me the "finest Christian" you had ever met. I might have even agreed silently, while quickly telling you with word that you were being way too kind. Pride it is called, isn't it, that comes before a fall? Chopped at the knees by a little 5lb. 2oz. baby with Down syndrome. God certainly does use the weakest to confound the strong and "wise".
Thank you in advance for your prayers tomorrow. I know you already know that I love my little ones with a crazy kind of love, and I would wish to protect them all the days of their lives from any and all kinds of harm. If there were a "recipe" for healing, know that I would follow it to the letter. I am capable of that. Alas, however, there is none. So, as I have done for four years, I will take one step at a time tomorrow in hope of finding that pot of gold at the end of the proverbial rainbow. It's time. God, please hear me, it is time for You to heal Hopey's heart. Forgive me for where I have failed You, and please don't hold my sins against little Hopey in any way.....I beg of You, dear Lord, show me Your power!
Sunday, May 9, 2010
Happy Mother's Day!
We had a wonderful weekend. The kids' fundraiser for flood victims was a tremendous success. They managed to raise nearly $300.00 by selling donuts all day on Saturday. Way to go!
My parents were in town this weekend for Lydia's violin recital, and an added bonus was having my mom here for Mother's Day. I love my mom. Growing up, we were always the best of friends.....shopping together, laughing until our sides split at re-runs of "I Love Lucy" and talking about boys until the wee hours of the morning.
One of our funniest "shopping stories" was when the new Gloria Vanderbilt tight jeans came into vogue in the 80's. Everyone had to have them. The one and only store who had any left was teeming with female shoppers, so dressing rooms were tough to come by. We finally found one available and decided we better share it since my dad (who was with us) was growing more and more impatient by the minute. The dressing rooms of this particular store did not have doors, but curtains that didn't quite cover the door frame (you know the type). We both started to put the skinny jeans on and realized at the same exact moment that the infamous jeans were not going to "slide" on as we had hoped. Each of us, with one leg in and the other leg out, lost our balance and fell OUTSIDE the curtain into the hallway. We couldn't get up, because we were laughing too hard and because the stinking jeans were too tight. Humiliating. Needless to say, we did not leave with Gloria Vanderbilt jeans that day, though being the style conscience gals we were in the eighties, we did end up purchasing some and wore them with great pride (and constant giggles).
Mom and I have been through many ups and downs together through the years; we haven't always agreed on everything. Being so close, however, we have always managed to work through the natural circumstances "life" has brought our way. It is a testimony to love, I think, to be able to accept one another no matter what....for instance, I love my mom even though she is sometimes wrong and she manages to love me even though I am typically aggravatingly right! Ha! Ha! My mom is reading this and would tell you the exact opposite is true.....
This weekend, mom watched as I related to my teenager (now 6 ft. tall and looking down at me), sweet Caleb.....she was a spectator at my side as Lydia and Natalie (our eleven year olds) put on an "I Love Lucy" skit (Vita-meeta-vegamin---more hilarious than Lucy herself).....she encouraged me while noticing my efforts to subdue flying mashed potatoes and green beans at the dinner table with Hopey.....and she gathered diapers and wipes every other hour for Charlie "changes". Life has changed for mom and me.....Instead of being my mom, she now watches me be mom. I wonder if her observations make her think of times we shared as I grew up under her watch and care? Time tends to make me appreciate my own mom more and more.
To all the moms, I hope you had a fabulous Mother's Day! May we be continually mindful of the blessings we have in our moms and our children. God gave us a perfect gift when He created us for one another, didn't He?
My parents were in town this weekend for Lydia's violin recital, and an added bonus was having my mom here for Mother's Day. I love my mom. Growing up, we were always the best of friends.....shopping together, laughing until our sides split at re-runs of "I Love Lucy" and talking about boys until the wee hours of the morning.
One of our funniest "shopping stories" was when the new Gloria Vanderbilt tight jeans came into vogue in the 80's. Everyone had to have them. The one and only store who had any left was teeming with female shoppers, so dressing rooms were tough to come by. We finally found one available and decided we better share it since my dad (who was with us) was growing more and more impatient by the minute. The dressing rooms of this particular store did not have doors, but curtains that didn't quite cover the door frame (you know the type). We both started to put the skinny jeans on and realized at the same exact moment that the infamous jeans were not going to "slide" on as we had hoped. Each of us, with one leg in and the other leg out, lost our balance and fell OUTSIDE the curtain into the hallway. We couldn't get up, because we were laughing too hard and because the stinking jeans were too tight. Humiliating. Needless to say, we did not leave with Gloria Vanderbilt jeans that day, though being the style conscience gals we were in the eighties, we did end up purchasing some and wore them with great pride (and constant giggles).
Mom and I have been through many ups and downs together through the years; we haven't always agreed on everything. Being so close, however, we have always managed to work through the natural circumstances "life" has brought our way. It is a testimony to love, I think, to be able to accept one another no matter what....for instance, I love my mom even though she is sometimes wrong and she manages to love me even though I am typically aggravatingly right! Ha! Ha! My mom is reading this and would tell you the exact opposite is true.....
This weekend, mom watched as I related to my teenager (now 6 ft. tall and looking down at me), sweet Caleb.....she was a spectator at my side as Lydia and Natalie (our eleven year olds) put on an "I Love Lucy" skit (Vita-meeta-vegamin---more hilarious than Lucy herself).....she encouraged me while noticing my efforts to subdue flying mashed potatoes and green beans at the dinner table with Hopey.....and she gathered diapers and wipes every other hour for Charlie "changes". Life has changed for mom and me.....Instead of being my mom, she now watches me be mom. I wonder if her observations make her think of times we shared as I grew up under her watch and care? Time tends to make me appreciate my own mom more and more.
To all the moms, I hope you had a fabulous Mother's Day! May we be continually mindful of the blessings we have in our moms and our children. God gave us a perfect gift when He created us for one another, didn't He?
Wednesday, May 5, 2010
Tennessee Flood Update
There are countless families who lost everything in the flood last weekend. The flood water was contaminated with waste water and fuel, so everything the water touched is now completely ruined. Unfortunately, many families who were impacted by the flooding do not live in a flood zone and therefore do not have flood insurance. As a result, rebuilding will be costly during a time when the economy is not at its best.
Families in Middle Tennessee who escaped the disaster are eager to help their neighbors in need. This weekend, our neighborhood will be hosting a gigantic yard sale. Many families have decided to offer their items FREE to flood victims. I was not planning to participate when I learned of the sale a few weeks ago, but now I can hardly wait.
We live in Chestnut Bend Subdivision and would be happy for anyone in the area to come join us on Friday and Saturday from 7am-2pm. In addition, our neighborhood teenagers and children will be offering baked goods for sale with all proceeds going to benefit families impacted by the Tennessee Storm Disaster. If you would like to be involved in any way, please feel free to email me. My mom and dad will be visiting from Cleveland, TN this weekend. I know I have several Cleveland blog followers (thank you)----if you would like to send some clothing or baby items along for the flood victims, please drop your items off on Thursday and Friday at Prospect Elementary School for Kaye Miller.
May the Lord continue to use us to offer comfort to those who have suffered such great loss....and may His light shine through all that is done in the process. It is ALL about HIM. It is ALL about ETERNITY!
Families in Middle Tennessee who escaped the disaster are eager to help their neighbors in need. This weekend, our neighborhood will be hosting a gigantic yard sale. Many families have decided to offer their items FREE to flood victims. I was not planning to participate when I learned of the sale a few weeks ago, but now I can hardly wait.
We live in Chestnut Bend Subdivision and would be happy for anyone in the area to come join us on Friday and Saturday from 7am-2pm. In addition, our neighborhood teenagers and children will be offering baked goods for sale with all proceeds going to benefit families impacted by the Tennessee Storm Disaster. If you would like to be involved in any way, please feel free to email me. My mom and dad will be visiting from Cleveland, TN this weekend. I know I have several Cleveland blog followers (thank you)----if you would like to send some clothing or baby items along for the flood victims, please drop your items off on Thursday and Friday at Prospect Elementary School for Kaye Miller.
May the Lord continue to use us to offer comfort to those who have suffered such great loss....and may His light shine through all that is done in the process. It is ALL about HIM. It is ALL about ETERNITY!
Tuesday, May 4, 2010
Life is nuts, isn't it?
Somehow Chappy and I find ourselves in the nuttiest situations:
When we adopted Natalie from Russia, we became stuck in Russia due to the Anthrax scare in America. The American embassy was shut down while we were there and our three day stay turned into a month-long visit in a foreign country with only one change of clothing and a backpack.
When we lived in Gallatin, we were in the middle of the tornado disaster that took out an entire row of homes less than half a mile from our house. We had no power for days and roads all around us were covered in trees and debris making travel tricky.
On a ski trip to New Hampshire, a surprise blizzard brought 18 inches of snow (on an already 100+ inch base) in a 12 hour period leaving snow drifts covering entire sides of homes and down hill skiing a near impossibility. Record below zero temperatures followed and we found out what the word "cold" really means.
Four years ago, a friend we hired to help us with our home while we carted Hopey back and forth, to and from the hospital, stole from us and even had a party in our house while we were on an overnight stay away from home----we lived on the Old Hickory Lake at the time, and the party was so large, our boat and house were left full of plastic cups and half eaten food was strewn everywhere. (we came back a few hours early from our trip---oops!) One pleasant guest even spit tobacco on one of our walls. Nice.
In a period of two years, we had 9 flat tires (somehow picking up any and every nail on Nashville roads).
Then we were involved in the emergency evacuation from the Opryland Hotel on Sunday when the record breaking floods came through Nashville.
The list goes on, and I am sure many of you have the same such stories that make you think "how in the world did I get into this mess?".
I can now add something new:
We have been remodeling our Master Bathroom and adding a bathroom for our girls over the last couple of months. We just discovered the painter seems to have stolen the kids' Wii games. The kids played the Wii on Sunday, April 25th......the painter came in the following Monday, Tuesday, and Wednesday. No one else has been in our home. Over the weekend, the kiddos went to play the Wii, but the game cases were found empty.
What makes a person steal from another? This man had to know those games belonged to our children. Did he think we wouldn't notice the games were missing? What else did he take that we haven't noticed missing yet? Is there a chance he might have found personal information in our home to use to steal our identity? How do we handle this situation?
Uncertain times keep us on our toes and remind us of our need of the Savior. The Hollis family has so much to be thankful for, but still, we feel vulnerable and kind of violated. Our kids REALLY do, and as I go through my things, I am sure to feel their pain if I begin to find my things missing.
Oh, by the way, ask me if the painter our contractor hired is an illegal alien.....oh, and while on the subject, are you aware over 111,000 Mexicans became LEGAL United States Citizens in 2009? I wonder how many of them have attempted a crime since gaining citizenship? I would guess "zero".
When we adopted Natalie from Russia, we became stuck in Russia due to the Anthrax scare in America. The American embassy was shut down while we were there and our three day stay turned into a month-long visit in a foreign country with only one change of clothing and a backpack.
When we lived in Gallatin, we were in the middle of the tornado disaster that took out an entire row of homes less than half a mile from our house. We had no power for days and roads all around us were covered in trees and debris making travel tricky.
On a ski trip to New Hampshire, a surprise blizzard brought 18 inches of snow (on an already 100+ inch base) in a 12 hour period leaving snow drifts covering entire sides of homes and down hill skiing a near impossibility. Record below zero temperatures followed and we found out what the word "cold" really means.
Four years ago, a friend we hired to help us with our home while we carted Hopey back and forth, to and from the hospital, stole from us and even had a party in our house while we were on an overnight stay away from home----we lived on the Old Hickory Lake at the time, and the party was so large, our boat and house were left full of plastic cups and half eaten food was strewn everywhere. (we came back a few hours early from our trip---oops!) One pleasant guest even spit tobacco on one of our walls. Nice.
In a period of two years, we had 9 flat tires (somehow picking up any and every nail on Nashville roads).
Then we were involved in the emergency evacuation from the Opryland Hotel on Sunday when the record breaking floods came through Nashville.
The list goes on, and I am sure many of you have the same such stories that make you think "how in the world did I get into this mess?".
I can now add something new:
We have been remodeling our Master Bathroom and adding a bathroom for our girls over the last couple of months. We just discovered the painter seems to have stolen the kids' Wii games. The kids played the Wii on Sunday, April 25th......the painter came in the following Monday, Tuesday, and Wednesday. No one else has been in our home. Over the weekend, the kiddos went to play the Wii, but the game cases were found empty.
What makes a person steal from another? This man had to know those games belonged to our children. Did he think we wouldn't notice the games were missing? What else did he take that we haven't noticed missing yet? Is there a chance he might have found personal information in our home to use to steal our identity? How do we handle this situation?
Uncertain times keep us on our toes and remind us of our need of the Savior. The Hollis family has so much to be thankful for, but still, we feel vulnerable and kind of violated. Our kids REALLY do, and as I go through my things, I am sure to feel their pain if I begin to find my things missing.
Oh, by the way, ask me if the painter our contractor hired is an illegal alien.....oh, and while on the subject, are you aware over 111,000 Mexicans became LEGAL United States Citizens in 2009? I wonder how many of them have attempted a crime since gaining citizenship? I would guess "zero".
Monday, May 3, 2010
Flooding In Tennessee
On Saturday afternoon, Chappy whisked me away for part two of my birthday.....an evening at the Opryland Hotel....our favorite place in town to visit. It was storming and flash floods were predicted, but who would have ever expected flooding to swamp Middle Tennessee?
Sunday morning we called home to check on the kids and were told by panic-stricken children the Harpeth River backing up to our neighborhood had flooded all of Downtown Franklin and had come very close to homes nearby. In fact, the local Sonic and Toyota car dealership were completely under water and the rain was still coming down strong. Instead of enjoying a nice lunch buffet at Opryland, Chappy and I decided we better head home to make sure everyone stayed safe. Chappy went to the front desk to checkout and was told we were not going to be allowed to leave. All the roads were closed and we were "land-locked" in the area.
By noon, the Opryland Hotel had lost power, but still no one mentioned concern about the nearby Cumberland River. By dinnertime, the hotel had managed to get a few generators running so hungry guests could have some hot food. We had just sat down to dinner and taken a bite of warm bread when the waiter rushed to our table and announced: "You will have to go to the ballroom immediately, we have been told to evacuate to the highest level in the building. It looks like the Cumberland River may overflow and flood the hotel."
Panic.
It was eerily like the movie: "Titanic". Guests were not allowed to return to their rooms and gather belongings; they were told to sit in a ball room and wait further instruction.
Chappy and I, being familiar with the hotel, slipped out a side door to an open loading area that is around 40 feet above street level. From our perspective, we could see the river rising and the flooded parking lot of the OpryMills Mall next door. Finally, after two hours of speculation, the hotel was evacuated to a nearby local high school. Still unable to make it to our home in Franklin due to flooding and road closures , we found another hotel near the airport to spend the night.
This morning, the U.S. Coast Guard was called to the Opryland Hotel to retrieve all who were left. Currently, ten feet of contaminated water is standing in the beautiful building and wooden chairs we were seated in to eat our dinner are floating randomly about . The area is a total disaster.
We ventured out this morning to make our way home to Franklin. We were shocked by the flooding which cannot be fully appreciated by viewing the pictures being shown on the news. To see neighborhoods buried beneath water is incredibly unsettling. As of right now, the Cumberland is still rising as creeks and waterways pour into the already overflowing river.
Please say a prayer for all of the families who have lost loved ones in the flood and for those who have lost their belongings.
Sunday morning we called home to check on the kids and were told by panic-stricken children the Harpeth River backing up to our neighborhood had flooded all of Downtown Franklin and had come very close to homes nearby. In fact, the local Sonic and Toyota car dealership were completely under water and the rain was still coming down strong. Instead of enjoying a nice lunch buffet at Opryland, Chappy and I decided we better head home to make sure everyone stayed safe. Chappy went to the front desk to checkout and was told we were not going to be allowed to leave. All the roads were closed and we were "land-locked" in the area.
By noon, the Opryland Hotel had lost power, but still no one mentioned concern about the nearby Cumberland River. By dinnertime, the hotel had managed to get a few generators running so hungry guests could have some hot food. We had just sat down to dinner and taken a bite of warm bread when the waiter rushed to our table and announced: "You will have to go to the ballroom immediately, we have been told to evacuate to the highest level in the building. It looks like the Cumberland River may overflow and flood the hotel."
Panic.
It was eerily like the movie: "Titanic". Guests were not allowed to return to their rooms and gather belongings; they were told to sit in a ball room and wait further instruction.
Chappy and I, being familiar with the hotel, slipped out a side door to an open loading area that is around 40 feet above street level. From our perspective, we could see the river rising and the flooded parking lot of the OpryMills Mall next door. Finally, after two hours of speculation, the hotel was evacuated to a nearby local high school. Still unable to make it to our home in Franklin due to flooding and road closures , we found another hotel near the airport to spend the night.
This morning, the U.S. Coast Guard was called to the Opryland Hotel to retrieve all who were left. Currently, ten feet of contaminated water is standing in the beautiful building and wooden chairs we were seated in to eat our dinner are floating randomly about . The area is a total disaster.
We ventured out this morning to make our way home to Franklin. We were shocked by the flooding which cannot be fully appreciated by viewing the pictures being shown on the news. To see neighborhoods buried beneath water is incredibly unsettling. As of right now, the Cumberland is still rising as creeks and waterways pour into the already overflowing river.
Please say a prayer for all of the families who have lost loved ones in the flood and for those who have lost their belongings.
Subscribe to:
Posts (Atom)