Hi Friends!
Well, I finally figured out how to create a team and
make a page for the upcoming race we will be running for Daniel on
September 16 in Denver, Colorado. The Race is called, COLORADO Pulmonary Hypertension 5K Run for Phun
and if you would like to read about it, donate, or join our team you
can click on the link above. Below are detailed steps for either
donating or joining Daniel's Team. The donations will not be to us, but
to the pulmonary hypertension association and the funds are used for
finding a cure for this disease.
To make a Donation to the Pulmonary Hypertension Association in support of Daniel:
Go to http://www.firstgiving.com/fundraiser/danieljames/colorado5k
and click on donate and then follow the steps.
To be a part of Daniel's Team by registering for the race:
1) Go to http://www.firstgiving.com/phassociation/colorado5K
2) Click on Register
3) Chose the quantity (or number) of people you wish to register
4) Fill in your information and click next
5) Then you will have the option of joining a team. Click on Team Daniel
6) Fill out payment information; the cost is $25.00 per person
Just an FYI: If you do decide to register for the race, you do not have to be there
to run it. I can pick up your T-shirt and goody bag and get them to
you. Also, if you register you will have the option of creating your
own fund raising page. And I know of at least one other person who will
be running a race that day, in a different country, that expressed
interest in doing so. Makes me cry just thinking about it.
Thank you for considering being a part of Daniel's Team. Our family's theme for this race is Joshua 1:9 "Be strong and courageous, do not be frightened or dismayed for the Lord your God is with you wherever you go."
And if you have trouble with any of this just e-mail me and I will help you through it.
Thank you for your encouragement, prayers and support!
Saturday, July 28, 2012
Wednesday, July 25, 2012
Watermelons
Right now Daniel thinks it is hilarious when we look for watermelons...
I love how he LOVES life.
Thursday, July 19, 2012
Rainforest Cafe
Brent has taken a little vacation from work this week. And so we are having a "stay-cation" and doing some activities around the city. Last night we took the kiddos to the Rainforest Cafe. It had been over a year since we had ventured out to eat there as a family. The kiddos LOVE that place and Wednesdays kids eat for $2.99! Here are the pictures we took...
It was a FUN night! And it is one of those restaurants that while you are there, you really do feel like you are on vacation. :-)
Wednesday, July 11, 2012
Disney World
It has been nearly 8 months since we returned from Disney World. I am
almost finished with our family scrapbook, and just today I finished
putting together a video of our time and memories.
For many weeks, months really, even the memory of Disney World had a dark black cloud over it. What happened there when Daniel had his first blue spell since being on Flolan (outside of when his line broke in October) caught all of us off guard.
Before that evening, our family had enjoyed 5 wonderful days together at the Disney Parks as a family. Disney World itself exceeded all expectations we had, and the staff made it as easy for us as possible. They tagged Daniel's stroller as a wheelchair and gave us a pass so that we would have much less wait time at each ride, knowing that Daniel would not be able to handle long days and long lines. This was all without me asking...in fact I did not even know to ask!
Upon entering our first park, the first day we were there, a skywriter had spelled out "Praise Jesus" in the sky. Brent and I were in awe, as what we were feeling in our hearts was in thee bright blue sky above us.
We rode everything! Daniel did every ride that he could. He met Pooh and all of his friends. He met Mickey and all of his pals. He met Chip N Dale. Daniel was kissed by every princess. One of our favorite memories was eating dinner altogether at the Royal Palace. The looks and excitement on the faces of our girls was priceless. And the boys all had a good time there as well.
Then came the evening of November 15th, we were all getting ready to head to "The Very Merry Christmas Party" at the The Magic Kingdom. We had gotten all of the kiddos ready. Everyone had on their Christmas hat or ears. Drew was watching Daniel while Brent ironed his clothes and I took a few minutes to get ready myself. I had just put my dress on when Drew came running down the hall of our room screaming..."MOM!!! MOM!!!! DANIEL'S DYING!!! MOM!!! HE'S DYING!!"
I ran to the living room and there was Daniel stiff as a board and blue as a blueberry, covered in vomit and his eyes rolled back in his head. I screamed for Brent and he took Daniel in his arms while I grabbed the oxygen concentrator and turned it as high as it would go.
This was when we learned it could not go high enough to help at all.
I grabbed the phone and dialed 911. I told them our location and then gave Sam the phone because I needed to help Brent. I had told Sam just answer whatever questions they ask you. I then grabbed my cell phone to call the pager for thee team in Denver.
When the paramedics arrived Daniel was a purplish color and unresponsive. Once they put the mask with high flow oxygen, his color begin to improve some. That lasted all of 15 seconds, because then he went into his second PH crisis. His body became rigid, he was completely blue, face grey, eyes rolled back, heart rate dropping off...to say it was terrible barely begins to describe just how horrific it was.
And for the first time ever my kids had a front row seat.
Lizzy was pacing and screaming to the Lord, "Please don't let Daniel die! PLEASE!"
Abby was softly crying.
Drew and Sam were asking if he would be alright and watching the paramedics.
As they put Daniel into the back of the ambulance with Brent holding him, I handed my cell phone into the paramedics to talk the team in Denver.
And then the doors closed and they left. And I had no phone and no idea if I would see Daniel alive again.
I will never forget Lizzy running into my arms screaming, "Why did the Lord let this happen here mom, Why!?!?" My heart was screaming the same thing and I through my tears I answered her saying, "I don't know honey, but I know that he is good." And her little voice said, "I know He is mommy."
After we gathered some of Daniel's things, the Disney people took us to the emergency room where Daniel was taken. By the time we arrived he had recovered. He was once again pink, but they had sedated him because he was not happy to be there...
The kids felt much better after they saw that he was okay. We all did. And Disney treated them all so well. Our room was filled with balloons, stuffed animals, autographed photos, games, a CD, candy...and it encouraged their hearts so much. Lizzy still talks about how terrible the blue spells were, but then how encouraging it was to have the balloons and presents in our hotel room.
That night they transferred Daniel to a Children's hospital in Orlando. Because Brent is the one who mixes his flolan, he went along with Daniel. His sister Cindy happened to be in Orlando and so he had some company at the hospital that first night.
Before we left for Disney World, I had decided the song I would use for our picture video would be "Somewhere Over the Rainbow". As last fall this was one of Daniel's favorite songs. Every time it would come on our ITunes, he would raise his hands for me to pick him up to dance with him.
This song ended up being the rainbow that the Lord gave to us in the middle of one of our biggest disappointments. The next morning, a man came into the ICU room that Daniel and Brent were staying in and he was carrying a ukulele. He started playing and singing "Somewhere over the Rainbow." Brent started crying. And he asked him to play it again. And grace upon grace, God let Brent and I know, through a man playing and singing for children in the hospital, that he was near. And reminded us of his faithfulness, his goodness, and his love.
Both of us were so broken at the time, that it has taken months to truly appreciate the amazing gift that was. I am more in awe of that moment all the time.
In an imperfect world, I wanted the perfect trip. Or at least crisis free. I wanted a 10 day escape. Instead we had a wonderful first few days, followed by a terrible tragedy, that ended with all of us joyfully back together. I guess that IS the story of most fairy tales.
And one day we really will all live "Happily Ever After" because of Jesus.
That being said then, here is the video that contains memories from our Fairy Tale...
For many weeks, months really, even the memory of Disney World had a dark black cloud over it. What happened there when Daniel had his first blue spell since being on Flolan (outside of when his line broke in October) caught all of us off guard.
Before that evening, our family had enjoyed 5 wonderful days together at the Disney Parks as a family. Disney World itself exceeded all expectations we had, and the staff made it as easy for us as possible. They tagged Daniel's stroller as a wheelchair and gave us a pass so that we would have much less wait time at each ride, knowing that Daniel would not be able to handle long days and long lines. This was all without me asking...in fact I did not even know to ask!
Upon entering our first park, the first day we were there, a skywriter had spelled out "Praise Jesus" in the sky. Brent and I were in awe, as what we were feeling in our hearts was in thee bright blue sky above us.
We rode everything! Daniel did every ride that he could. He met Pooh and all of his friends. He met Mickey and all of his pals. He met Chip N Dale. Daniel was kissed by every princess. One of our favorite memories was eating dinner altogether at the Royal Palace. The looks and excitement on the faces of our girls was priceless. And the boys all had a good time there as well.
Then came the evening of November 15th, we were all getting ready to head to "The Very Merry Christmas Party" at the The Magic Kingdom. We had gotten all of the kiddos ready. Everyone had on their Christmas hat or ears. Drew was watching Daniel while Brent ironed his clothes and I took a few minutes to get ready myself. I had just put my dress on when Drew came running down the hall of our room screaming..."MOM!!! MOM!!!! DANIEL'S DYING!!! MOM!!! HE'S DYING!!"
I ran to the living room and there was Daniel stiff as a board and blue as a blueberry, covered in vomit and his eyes rolled back in his head. I screamed for Brent and he took Daniel in his arms while I grabbed the oxygen concentrator and turned it as high as it would go.
This was when we learned it could not go high enough to help at all.
I grabbed the phone and dialed 911. I told them our location and then gave Sam the phone because I needed to help Brent. I had told Sam just answer whatever questions they ask you. I then grabbed my cell phone to call the pager for thee team in Denver.
When the paramedics arrived Daniel was a purplish color and unresponsive. Once they put the mask with high flow oxygen, his color begin to improve some. That lasted all of 15 seconds, because then he went into his second PH crisis. His body became rigid, he was completely blue, face grey, eyes rolled back, heart rate dropping off...to say it was terrible barely begins to describe just how horrific it was.
And for the first time ever my kids had a front row seat.
Lizzy was pacing and screaming to the Lord, "Please don't let Daniel die! PLEASE!"
Abby was softly crying.
Drew and Sam were asking if he would be alright and watching the paramedics.
As they put Daniel into the back of the ambulance with Brent holding him, I handed my cell phone into the paramedics to talk the team in Denver.
And then the doors closed and they left. And I had no phone and no idea if I would see Daniel alive again.
I will never forget Lizzy running into my arms screaming, "Why did the Lord let this happen here mom, Why!?!?" My heart was screaming the same thing and I through my tears I answered her saying, "I don't know honey, but I know that he is good." And her little voice said, "I know He is mommy."
After we gathered some of Daniel's things, the Disney people took us to the emergency room where Daniel was taken. By the time we arrived he had recovered. He was once again pink, but they had sedated him because he was not happy to be there...
The kids felt much better after they saw that he was okay. We all did. And Disney treated them all so well. Our room was filled with balloons, stuffed animals, autographed photos, games, a CD, candy...and it encouraged their hearts so much. Lizzy still talks about how terrible the blue spells were, but then how encouraging it was to have the balloons and presents in our hotel room.
That night they transferred Daniel to a Children's hospital in Orlando. Because Brent is the one who mixes his flolan, he went along with Daniel. His sister Cindy happened to be in Orlando and so he had some company at the hospital that first night.
Before we left for Disney World, I had decided the song I would use for our picture video would be "Somewhere Over the Rainbow". As last fall this was one of Daniel's favorite songs. Every time it would come on our ITunes, he would raise his hands for me to pick him up to dance with him.
This song ended up being the rainbow that the Lord gave to us in the middle of one of our biggest disappointments. The next morning, a man came into the ICU room that Daniel and Brent were staying in and he was carrying a ukulele. He started playing and singing "Somewhere over the Rainbow." Brent started crying. And he asked him to play it again. And grace upon grace, God let Brent and I know, through a man playing and singing for children in the hospital, that he was near. And reminded us of his faithfulness, his goodness, and his love.
Both of us were so broken at the time, that it has taken months to truly appreciate the amazing gift that was. I am more in awe of that moment all the time.
In an imperfect world, I wanted the perfect trip. Or at least crisis free. I wanted a 10 day escape. Instead we had a wonderful first few days, followed by a terrible tragedy, that ended with all of us joyfully back together. I guess that IS the story of most fairy tales.
And one day we really will all live "Happily Ever After" because of Jesus.
That being said then, here is the video that contains memories from our Fairy Tale...
Sunday, July 8, 2012
Elohim
Right now I am reading through a book and doing a bible study along with it called, "Learning to Embrace Life's Disappointments As Silver Refined" by Kay Arthur It is a wonderfully timely study for what I am sure seem obvious reasons. Our life has been filled with some huge disappointments.
Here is a brief description, in Kay's words, about the heart of the book, " 'In the world you will have tribulation...' John 16:33. He warned us. We will encounter trouble, He said. There will be disappointments; things will be hard. 'But take courage; I have overcome the world.' Christianity doesn't exempt us from pain, from disappointments, from the hardships of this life. Nor does it demand that we deny or hide our pain or our disappointments. But it does give us One who promises a purpose, and end, and a benefit in it all. Because we are His and He is ours, we can take courage. We must take courage. But how? you ask. That beloved is what this book is all about -to help you with the how...and to give you a glimpse of the why..."
It has been encouraging and helpful and timely. I am walking through this study with my friend Summer who has also faced huge disappointment in the loss of her precious Kelsie last fall. There are many tears as we talk and pray and encourage each other to trust Jesus.
And friends, I have to say that I wrestled some reading through this weeks lesson, the title of the chapter being "God's Training in Disguise". The wrestling came with reading these words..."I wouldn't trade this for anything. Can you and I always say that about our disappointments?"
And at first glance...NO. I wouldn't choose to suffer this way. To watch my child fight for his life. I WOULD trade it. I know I would! Even though I trust the Lord and praise His name because of who He is and because He is worthy no matter what my circumstances are...I would trade his sickness.
I would.
And just like the Lord, He leads me to the answer of my wrestling...
As this summer, I am also doing a bible study with my boys and their friend this summer called "God What's Your Name" by Kay Arthur and Janna Arndt. And this Friday we study Elohim found in Genesis 1:1. Elohim is the word for God as Creator. "El", means mighty or strong. It is the word we use to refer to Almighty God. The "im" ending tells us it is plural. And by looking at different verses (Gen 1:2, John 1:1, John 1:2, John 1:14, Heb 1:2, Col 1:16) we saw that in the beginning Elohim-God the Father, God the Son and God the Holy Spirit-each had a part in Creation.
Then we looked at whose image we were created in. And Genesis 1:26, 27 tells us we were created in the image of God. And then Genesis 1:31 tells us it was very good. In summary Kay writes, "He looked at all He had created and according to Him, everything He made, including you, was very good.
And then we turned to Exodus 4:10-11..."Then Moses said to the Lord, 'Please, Lord, I have never been eloquent, neither recently nor in time past, nor since You have spoken to Your servant; for I am slow of speech and slow of tongue. The Lord said to him, 'Who has made man's mouth? Or who makes him mute or deaf or seeing or blind? Is it not I the Lord?"
Friends, it is obvious that Daniel's precious body was made by Our Creator with pulmonary hypertension.
So when we finally came to John 9:1-3, I could not stop the tears from falling as I read these verses aloud to the boys, "As Jesus passed by, He saw a man blind from birth. And His disciples asked Him, 'Rabbi, who sinned this man or his parents, that he would be born blind?' Jesus answered, 'It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him."
Oh Friends.
I will not pretend to understand the ways of the Lord. But I know that God has a purpose for everything that He does. And I know that God does not make mistakes. God our creator makes us exactly the way that He wants us to be and sees it as very good.
The doctors have been unable to find a reason why, a cause so to say for Daniel having pulmonary hypertension. They have determined it to idiopathic (meaning they do not know why) primary (not caused by anything else) pulmonary hypertension. This is the way that Daniel was made.
My Conclusion? In light of John 9:1-3 and of my savior Jesus saying in the garden of Gethsemane "Father, if you are willing, remove this cup from me yet not My will, but yours be done, " (Luke 22:42) I can say that I would not trade "it". Only because then it would be my way, my will, instead of the Lord's.
This does not mean that I am not brokenhearted, I have never hidden or denied that being the case. And this does not mean that I will stop asking for Daniel to be healed. Or hoping that they find a cure for this disease. But whatever the Lord decides, I am at peace with my Elohim. I want what He wants for my life. I want what He wants for my children. And he is Faithful and True. And I trust Him.
I trust that he is able and will follow through on His promise to cause "all things to work together for good to those who love God, to those who are called according to His purpose" (Romans 8:28). And as Kay states, "God doesn't say the the situation is good, but He does promise that because He's your God and you're His child, he will bring good from it." And later she writes, "If this trial were not for your benefit and His glory, He would never have allowed it to seep through His fingers of love into your life."
Mercy Me has a song that came on tonight as I was running, one I have sang many times. It is what made my feet turn around and head home to type out what has been happening in my heart this week. And still today, with all that has happened, with all that still might...I can sing to the Lord with all my soul "Bring the Rain".
"Holy, Holy, Holy is the Lord God Almighty, WHO WAS, WHO IS, AND WHO IS TO COME" (Rev.4:8)
"These things I have spoken to you so that in Me you may have peace. In the world you will have tribulation, but take courage; I have overcome the world." John 16:33
I would not choose this road of suffering. But I would also not want to be anywhere but the center of God's will for my life. And so the "it" that I would not trade, is God's sovereign will for my life. And for Daniel's. And for the life of each one of my kids.
Selah
Here is a brief description, in Kay's words, about the heart of the book, " 'In the world you will have tribulation...' John 16:33. He warned us. We will encounter trouble, He said. There will be disappointments; things will be hard. 'But take courage; I have overcome the world.' Christianity doesn't exempt us from pain, from disappointments, from the hardships of this life. Nor does it demand that we deny or hide our pain or our disappointments. But it does give us One who promises a purpose, and end, and a benefit in it all. Because we are His and He is ours, we can take courage. We must take courage. But how? you ask. That beloved is what this book is all about -to help you with the how...and to give you a glimpse of the why..."
It has been encouraging and helpful and timely. I am walking through this study with my friend Summer who has also faced huge disappointment in the loss of her precious Kelsie last fall. There are many tears as we talk and pray and encourage each other to trust Jesus.
And friends, I have to say that I wrestled some reading through this weeks lesson, the title of the chapter being "God's Training in Disguise". The wrestling came with reading these words..."I wouldn't trade this for anything. Can you and I always say that about our disappointments?"
And at first glance...NO. I wouldn't choose to suffer this way. To watch my child fight for his life. I WOULD trade it. I know I would! Even though I trust the Lord and praise His name because of who He is and because He is worthy no matter what my circumstances are...I would trade his sickness.
I would.
And just like the Lord, He leads me to the answer of my wrestling...
As this summer, I am also doing a bible study with my boys and their friend this summer called "God What's Your Name" by Kay Arthur and Janna Arndt. And this Friday we study Elohim found in Genesis 1:1. Elohim is the word for God as Creator. "El", means mighty or strong. It is the word we use to refer to Almighty God. The "im" ending tells us it is plural. And by looking at different verses (Gen 1:2, John 1:1, John 1:2, John 1:14, Heb 1:2, Col 1:16) we saw that in the beginning Elohim-God the Father, God the Son and God the Holy Spirit-each had a part in Creation.
Then we looked at whose image we were created in. And Genesis 1:26, 27 tells us we were created in the image of God. And then Genesis 1:31 tells us it was very good. In summary Kay writes, "He looked at all He had created and according to Him, everything He made, including you, was very good.
And then we turned to Exodus 4:10-11..."Then Moses said to the Lord, 'Please, Lord, I have never been eloquent, neither recently nor in time past, nor since You have spoken to Your servant; for I am slow of speech and slow of tongue. The Lord said to him, 'Who has made man's mouth? Or who makes him mute or deaf or seeing or blind? Is it not I the Lord?"
Friends, it is obvious that Daniel's precious body was made by Our Creator with pulmonary hypertension.
So when we finally came to John 9:1-3, I could not stop the tears from falling as I read these verses aloud to the boys, "As Jesus passed by, He saw a man blind from birth. And His disciples asked Him, 'Rabbi, who sinned this man or his parents, that he would be born blind?' Jesus answered, 'It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him."
Oh Friends.
I will not pretend to understand the ways of the Lord. But I know that God has a purpose for everything that He does. And I know that God does not make mistakes. God our creator makes us exactly the way that He wants us to be and sees it as very good.
The doctors have been unable to find a reason why, a cause so to say for Daniel having pulmonary hypertension. They have determined it to idiopathic (meaning they do not know why) primary (not caused by anything else) pulmonary hypertension. This is the way that Daniel was made.
My Conclusion? In light of John 9:1-3 and of my savior Jesus saying in the garden of Gethsemane "Father, if you are willing, remove this cup from me yet not My will, but yours be done, " (Luke 22:42) I can say that I would not trade "it". Only because then it would be my way, my will, instead of the Lord's.
This does not mean that I am not brokenhearted, I have never hidden or denied that being the case. And this does not mean that I will stop asking for Daniel to be healed. Or hoping that they find a cure for this disease. But whatever the Lord decides, I am at peace with my Elohim. I want what He wants for my life. I want what He wants for my children. And he is Faithful and True. And I trust Him.
I trust that he is able and will follow through on His promise to cause "all things to work together for good to those who love God, to those who are called according to His purpose" (Romans 8:28). And as Kay states, "God doesn't say the the situation is good, but He does promise that because He's your God and you're His child, he will bring good from it." And later she writes, "If this trial were not for your benefit and His glory, He would never have allowed it to seep through His fingers of love into your life."
Mercy Me has a song that came on tonight as I was running, one I have sang many times. It is what made my feet turn around and head home to type out what has been happening in my heart this week. And still today, with all that has happened, with all that still might...I can sing to the Lord with all my soul "Bring the Rain".
"Holy, Holy, Holy is the Lord God Almighty, WHO WAS, WHO IS, AND WHO IS TO COME" (Rev.4:8)
"These things I have spoken to you so that in Me you may have peace. In the world you will have tribulation, but take courage; I have overcome the world." John 16:33
I would not choose this road of suffering. But I would also not want to be anywhere but the center of God's will for my life. And so the "it" that I would not trade, is God's sovereign will for my life. And for Daniel's. And for the life of each one of my kids.
Selah
Wednesday, July 4, 2012
Tuesday, July 3, 2012
Toothless Lizzy
Last week Lizzy lost her first tooth! And she is the first of my kiddos to pull it out herself. She woke up and noticed it was a little more wiggly and sat and worked and pulled until she got that tooth to come out!! :-) Way to go Lizzy...we all LOVE that smile!
Subscribe to:
Posts (Atom)