The title of the song I lifted my hands to heaven and sang the morning Daniel died.
Tonight when I was out running this Crowder song came on shuffle. And I was overcome with emotion. I was overwhelmed with the grace of God for allowing me to join the angel's singing in Daniel's welcome "home". This is why following the "Steeple Outro" at Daniel's Celebration of Life the picture video we shared of Daniel was put to the music of "All This Glory."
But it wasn't until this song came on tonight that I realized, if Daniel could have said anything to me upon entering heaven I am sure it would have been, "Oh mom, all this GLORY!"
Tonight, some 562 days since that morning, I burst into laughter and tears while on my run. Not only did God put that song on my heart that morning to sing to heaven, but 562 days later he revealed to me that if Daniel could have spoken to me that morning it would have sounded something like that song. "Oh mom, all the GLORY" and "It's JESUS!" and mom "Love has won!"
I do not know how God works it altogether. But He does.
How gracious God is, was and will continue to be to this aching mama's heart.
The video below is the one played at Daniel's Celebration of Life...
"All This Glory".
Thank you Jesus.
Love has won.
"Then you kissed my face and told me I was Yours, and I knew I'd found my HOME."-Crowder, 'Steeple Outro'
Monday, October 23, 2017
Friday, June 23, 2017
The Story of My 26.2
"It's not a sprint, it's a marathon."
Words I was told on more than one occasion from our first Pulmonary Hypertension doctor in regards to our youngest son Daniel's care. Words that ran through my mind throughout Daniel's 6 years of life. While Daniel was alive, this motivated me to train and run my first half-marathon races. A few months after Daniel died, I knew I wanted to try and train to run a full 26.2.
In December, I mentioned this stirring I was having to train for a full marathon to my friend Ashley. I told her about the Big D (which the name of the race made me think of our Daniel) that was on April 2nd (the day after Daniel passed away) and how the timing and the name seemed to be a perfect race to run in honor of Daniel. Their family was over for dinner and without too much hesitation she said, "I could maybe train and do that with you." Within a few days of this conversation we both started the training. I was so thankful to have a friend to train with, to run with, and to spur one another on!
We ran most of our long runs together and it was on one of these long runs that I told Ashley the story of Daniel’s tree.
When Daniel passed away, the sweet people that Brent works with purchased a city memorial tree for Daniel. They were able to choose the city park that it would be planted in, but they had no control over the physical location of where the tree would be planted within the park. They chose the park closest to our home. We live across the street from this city park and Daniel spent many hours running, playing and getting dirty on the baseball fields there! So it was perfect.
One morning last summer, Brent and I were out on our back patio having coffee and talking and we noticed a city truck with a tree in the back pull up. The hole that was being dug for the tree was directly across the street from our home. Brent went over to talk to the city worker to find out if that was Daniel's tree. It was. No one knew the tree would be planted directly across the street from us, but the Lord knew. I continue to be amazed by this as it could have been planted anywhere in that 117 acre city park. This was such a sweet gift from the Lord.
You can see the tree sitting on our back patio, but it was not until I started training for the marathon that I noticed the tree is also perfectly centered with our street. As we ran, I was sharing all of these details with Ashley. I told Ashley, "One day when I cross the final finish line of this life, it will not be a tree. Instead, there will be my beloved Daniel smiling, cheering and welcoming me home!"
That thought alone is motivation enough to keep running the race of life most days.
As the training became harder, 16, 18, 20 miles thinking of that tree at the finish was always sweet motivation. Every time I rounded the corner for the final stretch I burst out laughing and crying from the emotion of thinking of the final finish combined with the sweet victory of finishing those long distances I had never ran before. On two occasions our sweet neighbor was working in her flower gardens and I know I was probably quite a sight for her! Oh well. I did not ever try to hold back the emotion.
As race day approached, I told my family I was excited and ready but that I was going to miss seeing that tree at the end!
The morning before the race, April 1, 2017, was the first anniversary of Daniel's death. I woke up just before 7:45 am and relived the moments of Daniel's last minutes here on earth. The morning he died, I was at home and Brent was at the hospital with him. Just like I had on the morning he passed away I went out on my front step and sang "All This Glory". This is what the sky looked like, with Daniel's tree right there in front of me as I cried and worshipped.
Later that evening, the weather forecast was becoming very grim for our race day. Severe storms were forecasted with 100% certainty. Ashley and I talked and had prayed that God would make it very obvious before the race started what we were supposed to do.
Ashley picked me up early on the morning of April 2nd and we drove downtown. As race time approached the weather became worse and worse. God faithfully answered our prayer to make it obvious. We were hoping for miraculous change of weather, but instead it was so bad that the marathon was cancelled. We were both so disappointed. After months of training we were now unable to run.
We went to a cafe and had breakfast and talked about our disappointment, not only with the race but other times in life. For both of us there seemed to be this recurring theme of persevering through life's disappointments. The biggest disappointment in my life being Daniel's death.
We quietly drove home, both of us still processing the reality that the race did not happen. When she dropped me off, Brent was waiting for me. He was sweet and comforting and said he was surprised with how well I was doing considering the huge disappointment. I told him, "God made it clear, and I do not understand why he said 'not today' in regard to running this race. But He did. And I trust Him." Then I went and took a nap.
I woke up around 2:15pm. As I laid in my bed, I thought "I don't hear any thunder...or rain...". I then checked the radar and the sky was clear. I started thinking about Daniel's tree and how I was thinking I would have been disappointed to not see it at the end of the marathon. Then I started thinking about running a marathon here, on my own. At about 2:30pm I called Ashley and our conversation went something like this, "Do you want to run?" She said, "What does that mean!?" And I said, "Like the 26.2? Do you want to run the marathon?" She paused before responding "I'm not sure..." I said, "Well I think I am going to do it and I didn't want to run it without inviting you to join me, so think about it, but not too long because we are going to run out daylight!" We hung up and about 5 minutes later she called me and said "I'm in!"
Thirty minutes later, we were ready to take off! We had the best send off ever! Brent loaded up our refreshment station with water and gatorade. We took photos with everyone wearing an "In Memory of Daniel" or Superman shirt. We had posters! My son Sam led the singing of the National Anthem, My husband Brent did a fake gun shot and we were off!
At miles 8, 18 and 25 our dear friends even came and met us with water and cheering along the path...
It was a grueling race for me. By mile 20.75 my body wanted no more. I had the worst stomachache and I hurt in places I didn't even know existed prior to this race. It was the grace of the Lord Jesus and the memory of my sweet Daniel joyfully fighting through pain his entire life that kept me putting one foot in front of the other. But those last 6 miles were sloooooow and painful and I am thankful that Ashley was so patient, I know she could have finished much faster than I did!
Ashley's and my family were hanging out together at our house and had asked that we let them know when we were one mile out. We did, but by this time it was dark out. I told Ashley that I was bummed it was dark as I would not be able to see the tree as we rounded the corner of our street. When we turned to run back into my neighborhood, we saw flashes of light. As we ran closer, I realized it was my oldest sons Drew and Sam with flashlights! Drew also had his speaker and was playing "My Beloved”, Daniel's favorite song! Drew and Sam joined Ashley and I to run the last quarter mile and as I turned the corner to run down our street to the finish, there was Daniel's tree...ALL LIT UP! Brent had taken our vehicles and turned the lights on to illuminate Daniel's tree in that dark night sky! Oh how thankful I was to see that tree! Brent picked me up as I crossed the finish line with all of those sweet kids and friends cheering!
It was the BEST FINISH EVER. Way better than if I had been able to run the "real" race.
God wasn't keeping something from me, He had something better for me. He is faithful, again and again and again He is faithful.
I ran a marathon. I ran a marathon, in memory of my Daniel, persevering by God's grace through disappointment once again.
"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope. And hope does not disappoint us." Romans 5:2-5
One day there will be no more disappointment. As I cross the finish line of life on this earth, Daniel will be there smiling and cheering along with my Jesus and all the other saints who finish their race ahead of me. Thank you, Jesus, for a hope that does not and will not disappoint.
"Therefore since we have so great a cloud of witnesses surrounding us, let us lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of our faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart." Hebrews 12:1-3
That is the story of my 26.2.
Words I was told on more than one occasion from our first Pulmonary Hypertension doctor in regards to our youngest son Daniel's care. Words that ran through my mind throughout Daniel's 6 years of life. While Daniel was alive, this motivated me to train and run my first half-marathon races. A few months after Daniel died, I knew I wanted to try and train to run a full 26.2.
In December, I mentioned this stirring I was having to train for a full marathon to my friend Ashley. I told her about the Big D (which the name of the race made me think of our Daniel) that was on April 2nd (the day after Daniel passed away) and how the timing and the name seemed to be a perfect race to run in honor of Daniel. Their family was over for dinner and without too much hesitation she said, "I could maybe train and do that with you." Within a few days of this conversation we both started the training. I was so thankful to have a friend to train with, to run with, and to spur one another on!
We ran most of our long runs together and it was on one of these long runs that I told Ashley the story of Daniel’s tree.
When Daniel passed away, the sweet people that Brent works with purchased a city memorial tree for Daniel. They were able to choose the city park that it would be planted in, but they had no control over the physical location of where the tree would be planted within the park. They chose the park closest to our home. We live across the street from this city park and Daniel spent many hours running, playing and getting dirty on the baseball fields there! So it was perfect.
One morning last summer, Brent and I were out on our back patio having coffee and talking and we noticed a city truck with a tree in the back pull up. The hole that was being dug for the tree was directly across the street from our home. Brent went over to talk to the city worker to find out if that was Daniel's tree. It was. No one knew the tree would be planted directly across the street from us, but the Lord knew. I continue to be amazed by this as it could have been planted anywhere in that 117 acre city park. This was such a sweet gift from the Lord.
You can see the tree sitting on our back patio, but it was not until I started training for the marathon that I noticed the tree is also perfectly centered with our street. As we ran, I was sharing all of these details with Ashley. I told Ashley, "One day when I cross the final finish line of this life, it will not be a tree. Instead, there will be my beloved Daniel smiling, cheering and welcoming me home!"
That thought alone is motivation enough to keep running the race of life most days.
As the training became harder, 16, 18, 20 miles thinking of that tree at the finish was always sweet motivation. Every time I rounded the corner for the final stretch I burst out laughing and crying from the emotion of thinking of the final finish combined with the sweet victory of finishing those long distances I had never ran before. On two occasions our sweet neighbor was working in her flower gardens and I know I was probably quite a sight for her! Oh well. I did not ever try to hold back the emotion.
As race day approached, I told my family I was excited and ready but that I was going to miss seeing that tree at the end!
The morning before the race, April 1, 2017, was the first anniversary of Daniel's death. I woke up just before 7:45 am and relived the moments of Daniel's last minutes here on earth. The morning he died, I was at home and Brent was at the hospital with him. Just like I had on the morning he passed away I went out on my front step and sang "All This Glory". This is what the sky looked like, with Daniel's tree right there in front of me as I cried and worshipped.
Later that evening, the weather forecast was becoming very grim for our race day. Severe storms were forecasted with 100% certainty. Ashley and I talked and had prayed that God would make it very obvious before the race started what we were supposed to do.
Ashley picked me up early on the morning of April 2nd and we drove downtown. As race time approached the weather became worse and worse. God faithfully answered our prayer to make it obvious. We were hoping for miraculous change of weather, but instead it was so bad that the marathon was cancelled. We were both so disappointed. After months of training we were now unable to run.
We went to a cafe and had breakfast and talked about our disappointment, not only with the race but other times in life. For both of us there seemed to be this recurring theme of persevering through life's disappointments. The biggest disappointment in my life being Daniel's death.
We quietly drove home, both of us still processing the reality that the race did not happen. When she dropped me off, Brent was waiting for me. He was sweet and comforting and said he was surprised with how well I was doing considering the huge disappointment. I told him, "God made it clear, and I do not understand why he said 'not today' in regard to running this race. But He did. And I trust Him." Then I went and took a nap.
I woke up around 2:15pm. As I laid in my bed, I thought "I don't hear any thunder...or rain...". I then checked the radar and the sky was clear. I started thinking about Daniel's tree and how I was thinking I would have been disappointed to not see it at the end of the marathon. Then I started thinking about running a marathon here, on my own. At about 2:30pm I called Ashley and our conversation went something like this, "Do you want to run?" She said, "What does that mean!?" And I said, "Like the 26.2? Do you want to run the marathon?" She paused before responding "I'm not sure..." I said, "Well I think I am going to do it and I didn't want to run it without inviting you to join me, so think about it, but not too long because we are going to run out daylight!" We hung up and about 5 minutes later she called me and said "I'm in!"
Thirty minutes later, we were ready to take off! We had the best send off ever! Brent loaded up our refreshment station with water and gatorade. We took photos with everyone wearing an "In Memory of Daniel" or Superman shirt. We had posters! My son Sam led the singing of the National Anthem, My husband Brent did a fake gun shot and we were off!
At miles 8, 18 and 25 our dear friends even came and met us with water and cheering along the path...
It was a grueling race for me. By mile 20.75 my body wanted no more. I had the worst stomachache and I hurt in places I didn't even know existed prior to this race. It was the grace of the Lord Jesus and the memory of my sweet Daniel joyfully fighting through pain his entire life that kept me putting one foot in front of the other. But those last 6 miles were sloooooow and painful and I am thankful that Ashley was so patient, I know she could have finished much faster than I did!
Ashley's and my family were hanging out together at our house and had asked that we let them know when we were one mile out. We did, but by this time it was dark out. I told Ashley that I was bummed it was dark as I would not be able to see the tree as we rounded the corner of our street. When we turned to run back into my neighborhood, we saw flashes of light. As we ran closer, I realized it was my oldest sons Drew and Sam with flashlights! Drew also had his speaker and was playing "My Beloved”, Daniel's favorite song! Drew and Sam joined Ashley and I to run the last quarter mile and as I turned the corner to run down our street to the finish, there was Daniel's tree...ALL LIT UP! Brent had taken our vehicles and turned the lights on to illuminate Daniel's tree in that dark night sky! Oh how thankful I was to see that tree! Brent picked me up as I crossed the finish line with all of those sweet kids and friends cheering!
It was the BEST FINISH EVER. Way better than if I had been able to run the "real" race.
God wasn't keeping something from me, He had something better for me. He is faithful, again and again and again He is faithful.
I ran a marathon. I ran a marathon, in memory of my Daniel, persevering by God's grace through disappointment once again.
"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope. And hope does not disappoint us." Romans 5:2-5
One day there will be no more disappointment. As I cross the finish line of life on this earth, Daniel will be there smiling and cheering along with my Jesus and all the other saints who finish their race ahead of me. Thank you, Jesus, for a hope that does not and will not disappoint.
"Therefore since we have so great a cloud of witnesses surrounding us, let us lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of our faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart." Hebrews 12:1-3
That is the story of my 26.2.
Friday, May 12, 2017
"Yeti" Is Graduating
For the last year of Daniel's life, he referred to his daddy as "Yeti". We think it was because of his beard! :) As I am typing now, I can still hear Daniel's sweet voice enthusiastically saying this.
Tomorrow Brent will graduate from Dallas Theological Seminary. 10 years it took to complete. 10 years of persevering through the challenges our life has brought. Both of us are struggling with Daniel not being here. We had hoped he would be in the photos we will take as a family tomorrow. We had hoped to see his excitement at the party. We have imagined this day for a long while, and it was never imagined without Daniel here. We just feel incomplete without his presence.
I told Brent today that I bet he and Dr. P will be celebrating with us in heaven! This thought brought some comfort to my heart and it did to his also. It is just hard. And we miss him BIG.
Tonight as I was headed to bed, the light was on in Daniel's room. Everyone else had already gone to bed, so I went in to turn off the light and I found Brent's clothes and gown laying out for tomorrow... and I saw his cap...
...On the "Yeti". The Yeti Daniel bought at the gift shop outside My Everest at Disney World while he waited for his brothers and sisters to ride. Before heading to bed, Brent put his graduation cap on the Yeti.
Yes, the "Yeti" is graduating. And we couldn't be more proud!
But he misses you Daniel. We all do.
Tomorrow Brent will graduate from Dallas Theological Seminary. 10 years it took to complete. 10 years of persevering through the challenges our life has brought. Both of us are struggling with Daniel not being here. We had hoped he would be in the photos we will take as a family tomorrow. We had hoped to see his excitement at the party. We have imagined this day for a long while, and it was never imagined without Daniel here. We just feel incomplete without his presence.
I told Brent today that I bet he and Dr. P will be celebrating with us in heaven! This thought brought some comfort to my heart and it did to his also. It is just hard. And we miss him BIG.
Tonight as I was headed to bed, the light was on in Daniel's room. Everyone else had already gone to bed, so I went in to turn off the light and I found Brent's clothes and gown laying out for tomorrow... and I saw his cap...
...On the "Yeti". The Yeti Daniel bought at the gift shop outside My Everest at Disney World while he waited for his brothers and sisters to ride. Before heading to bed, Brent put his graduation cap on the Yeti.
Yes, the "Yeti" is graduating. And we couldn't be more proud!
But he misses you Daniel. We all do.
Thursday, April 6, 2017
Last year at this time, we had just returned from one of the hardest nights our family has experienced.
It was the night of Daniel's visitation. The night before his funeral.
Family and friends from all over gathered in rooms of the funeral home, talking, hugging, crying, praying, remembering...
This was a hard night for us all. Maybe hardest for Lizzy.
My sweet girl could not stop crying. After we returned home, she could not sleep. As it grew near midnight, she came and asked through tears if she could sleep in Daniel's bed. Even in there we could here her squealing cries.
My heart. Already broken and helplessly breaking more not knowing how to help her.
But God...
The day before I had received a text from my dear friend Traci that told me at the last minute she was going to be able to come to Daniel's burial and Celebration of Life. I was so thankful and felt so loved knowing that she wanted to be here. Little did I know that God had even more reason for what she called "miraculous" provision in the details working out.
Traci did not get into Dallas until around 10pm the night of April 6th and some of our other dear friends went to pick her up from the airport after leaving Daniel's visitation. She arrived at our home around 10:30 and when all of our other friends had left (or went to bed) for the night, she and I sat talking in the kitchen. It was at this time that Lizzy had come down to ask to sleep in Daniel's bed. After I tucked Lizzy into his bed and held her and prayed for her again, I came back out to the kitchen. As Traci and I sat across from one another we heard Lizzy squealing, crying and just sobbing. It was nearly midnight by this point and I was telling Traci how much we all just needed to sleep and was wondering aloud how to help her.
It was then that Traci asked me if she could go and talk to Lizzy.
And it was then that I was reminded that Traci knew how Lizzy was feeling.
She walked in and and told Lizzy that she had lost her brother when she was a little girl too. Lizzy said, "You did????" And Traci said , "Yes, I did." To which Lizzy immediately lamented through tears, "Oh Traci, did he look like himself??? Your brother? Because Daniel just did not look like himself tonight in his coffin!" Traci agreed that her brother Kirk did not look like himself. And then the two of them continued talking, Lizzy asking questions and Traci sharing what she could.
After several minutes of talking, Traci asked, "Lizzy, would you like me to sleep with you tonight?" Lizzy nodded. They headed up to the girls room and not long after lying down together in Lizzy's twin bed, they both slept.
Everyone should be so blessed to have a friend like this.
I myself am so thankful that Traci could be here, but I am forever thankful that God provided the comfort my dear Lizzy needed on this night. Something I will never forget. And a tangible reminder of His great love.
It was a miraculous provision indeed.
Thank you Traci for being the hands and feet of the Lord Jesus to my 10 year old's breaking heart. One of the many reminders of God's faithfulness in a time of such heartache and devastation.
This photo is from summer of 2015 when we visited North Dakota; Daniel (5), Traci and Lizzy(9).
Family and friends from all over gathered in rooms of the funeral home, talking, hugging, crying, praying, remembering...
This was a hard night for us all. Maybe hardest for Lizzy.
My sweet girl could not stop crying. After we returned home, she could not sleep. As it grew near midnight, she came and asked through tears if she could sleep in Daniel's bed. Even in there we could here her squealing cries.
My heart. Already broken and helplessly breaking more not knowing how to help her.
But God...
The day before I had received a text from my dear friend Traci that told me at the last minute she was going to be able to come to Daniel's burial and Celebration of Life. I was so thankful and felt so loved knowing that she wanted to be here. Little did I know that God had even more reason for what she called "miraculous" provision in the details working out.
Traci did not get into Dallas until around 10pm the night of April 6th and some of our other dear friends went to pick her up from the airport after leaving Daniel's visitation. She arrived at our home around 10:30 and when all of our other friends had left (or went to bed) for the night, she and I sat talking in the kitchen. It was at this time that Lizzy had come down to ask to sleep in Daniel's bed. After I tucked Lizzy into his bed and held her and prayed for her again, I came back out to the kitchen. As Traci and I sat across from one another we heard Lizzy squealing, crying and just sobbing. It was nearly midnight by this point and I was telling Traci how much we all just needed to sleep and was wondering aloud how to help her.
It was then that Traci asked me if she could go and talk to Lizzy.
And it was then that I was reminded that Traci knew how Lizzy was feeling.
She walked in and and told Lizzy that she had lost her brother when she was a little girl too. Lizzy said, "You did????" And Traci said , "Yes, I did." To which Lizzy immediately lamented through tears, "Oh Traci, did he look like himself??? Your brother? Because Daniel just did not look like himself tonight in his coffin!" Traci agreed that her brother Kirk did not look like himself. And then the two of them continued talking, Lizzy asking questions and Traci sharing what she could.
After several minutes of talking, Traci asked, "Lizzy, would you like me to sleep with you tonight?" Lizzy nodded. They headed up to the girls room and not long after lying down together in Lizzy's twin bed, they both slept.
Everyone should be so blessed to have a friend like this.
I myself am so thankful that Traci could be here, but I am forever thankful that God provided the comfort my dear Lizzy needed on this night. Something I will never forget. And a tangible reminder of His great love.
It was a miraculous provision indeed.
Thank you Traci for being the hands and feet of the Lord Jesus to my 10 year old's breaking heart. One of the many reminders of God's faithfulness in a time of such heartache and devastation.
Wednesday, March 29, 2017
A Final Video
On the morning of March 29, we had a painfully long wait for his surgery.
Daniel was thirsty, hungry and so very tired. We snuggled, played his favorite I-Pad games (like Stack the States and Presidents v. Aliens), we talked and we took some videos.
This was one of the final videos of the morning...
Home. His new word. I had desperately hoped the home he would go to was ours, but instead he went to the permanent address for all who believe in Jesus. Our heavenly Home.
I am so thankful Brent captured a photo of our final snuggles. As after I walked out of Daniel's room, down the halls of the ICU, I would never again snuggle my precious boy. I remember as I was walking down the hall having this overwhelming urge to run back and hug him again. I did not, as in the past days when I was in the room for any procedures he would become much more upset and agitated wanting me to rescue him. A few times he was so mad he turned blue and passed out. This did not happen with Brent. So I left wanting to give him the best chance for a successful surgery.
This has haunted me some. That I did not go back for one more hug.
But what I have come to realize is that I would always want one more. Even if I had gone back for that hug, I would still want one more. And one more. And one more. And my reason for not going back was for Daniel.
For the 3 days that followed Daniel's surgery we had a front row seat to the horror of watching him struggle. Of watching him on the edge of life and death. These past days I have been reliving the valley of the shadow of death. The tears have flowed freely. My heart has been heavy. And the Lord has reminded me He is near.
Psalm 23
"The Lord is my shepherd,
I shall not want.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name's sake,
Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the LORD forever."
Home. Forever Home. Daniel is no longer thirsty and begging for ice. He is no longer dependent on medicines or machines for life. He is home. And one day I will live there with him. One day.
Daniel was thirsty, hungry and so very tired. We snuggled, played his favorite I-Pad games (like Stack the States and Presidents v. Aliens), we talked and we took some videos.
This was one of the final videos of the morning...
Home. His new word. I had desperately hoped the home he would go to was ours, but instead he went to the permanent address for all who believe in Jesus. Our heavenly Home.
I am so thankful Brent captured a photo of our final snuggles. As after I walked out of Daniel's room, down the halls of the ICU, I would never again snuggle my precious boy. I remember as I was walking down the hall having this overwhelming urge to run back and hug him again. I did not, as in the past days when I was in the room for any procedures he would become much more upset and agitated wanting me to rescue him. A few times he was so mad he turned blue and passed out. This did not happen with Brent. So I left wanting to give him the best chance for a successful surgery.
This has haunted me some. That I did not go back for one more hug.
But what I have come to realize is that I would always want one more. Even if I had gone back for that hug, I would still want one more. And one more. And one more. And my reason for not going back was for Daniel.
For the 3 days that followed Daniel's surgery we had a front row seat to the horror of watching him struggle. Of watching him on the edge of life and death. These past days I have been reliving the valley of the shadow of death. The tears have flowed freely. My heart has been heavy. And the Lord has reminded me He is near.
Psalm 23
"The Lord is my shepherd,
I shall not want.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name's sake,
Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the LORD forever."
Home. Forever Home. Daniel is no longer thirsty and begging for ice. He is no longer dependent on medicines or machines for life. He is home. And one day I will live there with him. One day.
Monday, March 27, 2017
One Last Night
One year ago we had what would be our last time together as a family. This would be my last photo with all five of my kids...
It was Easter Sunday. Our Easter tradition has become to eat "Family Style" at Maggiano's. Last year, since Daniel was in the hospital, the kids and I picked up our Maggiano's meal to go with the promise that we would still dine in when Daniel came home. We found a few tables in the lower level of the hospital and made the best of it...
After we ate, we headed out to the courtyard to play. My kids soon found a way to play a "baseball" game in the tiny courtyard at the Children's Hospital. They even argued about a few calls to make us really feel at home...
Daniel and I sat on the side lines and cheered most of the time. Etched in my memory is the look on his face as he watched his brothers and sisters play. He was so happy. The sparkle in his eye, the smile, he was just so content. It was like he knew it was the last time and he was just taking it all in. These last moments together have been some of the most treasured because of my memory of the look on his face...
It was Easter Sunday. Our Easter tradition has become to eat "Family Style" at Maggiano's. Last year, since Daniel was in the hospital, the kids and I picked up our Maggiano's meal to go with the promise that we would still dine in when Daniel came home. We found a few tables in the lower level of the hospital and made the best of it...
After we ate, we headed out to the courtyard to play. My kids soon found a way to play a "baseball" game in the tiny courtyard at the Children's Hospital. They even argued about a few calls to make us really feel at home...
Daniel and I sat on the side lines and cheered most of the time. Etched in my memory is the look on his face as he watched his brothers and sisters play. He was so happy. The sparkle in his eye, the smile, he was just so content. It was like he knew it was the last time and he was just taking it all in. These last moments together have been some of the most treasured because of my memory of the look on his face...
Whenever Daniel did have the energy to bat, the kids paused their game and all attention was on him. One of Daniel's most favorite things was playing "ball"...
Brent even got one more great "BAAALLLLL"...
That was their thing.
And I love these photos I got with Lizzy. They hang in her room now with the memory that this was the last time they were together...
I also got my 5 kiddos together to take a photo...
And one with me...
We buried Daniel in that shirt we gave him. It says "Greatest Brother Ever". I have often wondered since Daniel passed away, "Would I have wanted to know this was our last night together?" And the conclusion I have come to over and over is that I am certain I would not want to know. I would not have enjoyed the afternoon and evening like I did. I would not have been fully present. I would not have been okay with imperfect photos or the big kids arguing in the courtyard. I would not have wanted to know.
I am so thankful we had this last night together as a family. I treasure the memories. I hold them close to my heart. I wish I could go back...even if just for a moment. Reliving them has brought an abundance of tears, but also deep gratitude and joy in the sweetness of the day.
As I was typing this out tonight, Matt Hammitt's "Trust" came on my music shuffle. The words speak well for me today, so I thought I would share the song here. Please pray for us, walking through the last days of Daniel's life again has been harder than I anticipated.
If we had to have one last night together, I love that it was the day we celebrate our risen Savior, the Lord Jesus Christ. Our hope. Our faith in Him gives us assurance that we will one day be together again. One day.
Love you forever Daniel. I cannot wait to see you again.
Wednesday, March 8, 2017
Psalm 34:4
March 11th will mark one year from when Daniel was admitted to the hospital for the first time since 2012. The few weeks that would follow would become some of the most painful and horrific I have ever experienced. We would never again bring him home.
But Daniel. How evident God's grace was in his short life. Amidst Daniel's suffering and the horror of blue spells, pokes, and tests his love for life filled those hospital walls. He had smiles and lollipops to share with everyone. He brought his headbands and weights to the hospital and impressed the nurses with his upper body strength. He pushed the limits with his "poopy" and "wee-wee" talk, ironically now being one of our favorite memories. He comforted others "Boo-boo's" and showed concern for their equipment and machine beeps in common areas. He had a tent bed filled with his favorite animals, games, and toys. He made sure the diffuser with his favorite oils was going and it made the halls of our wing of the hospital smell extra minty! He bought a new pair of socks and sticker packs every time we visited the gift shop. He watched adoringly as his family played baseball in the courtyard of the Children's hospital. He asked everyone who visited to play "Mem-Rie". He smiled through his pain. He let his light shine.
One of the nights that I came home to sleep, I spent a few hours in prayer on our kitchen floor. I cried. I wept. I begged God for His help. I professed my love for Him. I thanked Him for who He is and for letting me be mom to five precious kids. I asked for Him to give us answers. I asked Him for more time. I asked Him to let us bring our sweet Daniel home again. I poured my heart out to Him. I cried until I had no more tears. As I got up and sat down on our couch Psalm 34:4 was whispered to me heart...
"I sought the LORD and He answered me, and He delivered me from all my fears."
Outloud I said, "OKAY?"
Because it made no sense. As I was crying and praying and calling out to the LORD I was not feeling scared, fearful or anxious. Instead I was feeling sad, weary, brokenhearted.
It was not until after Daniel died that this response was made clear to me.
Regularly throughout Daniel's short six years of life, I asked the Lord that he would let me live one day longer than Daniel. I worried about who would care for him like me. Other prayers said regularly were for his line to not break, his pump not to malfunction in the middle of the night without me knowing (as an interruption could result in death), for emergencies to only happen where we could get help quickly, on and on the list went.
All of my fears had to do with Daniel's living. There was no fear in him dying. I knew where he was going. He loved Jesus.
I am currently again reading "Hudson Taylor's Spiritual Secret". I first read most of this book when Daniel was alive. Since his passing, I have not found more kindred words to what my own heart is feeling then in the words penned by Hudson Taylor to his mother after his 8 year old daughter Gracie passed away...
The words and description are different for my beloved Daniel, but the heart of love and missing and trust in the Lord is the same.
Later on in the pages of the book they lose a son too. Amidst many words Hudson Taylor wrote, "About 2 of our little ones I have no anxiety. They rest in Jesus' bosom."
Daniel now too rests in Jesus' bosom. This is what I mean by I had no fear in Daniel's dying. I am confident of where Daniel now lives. I am sure this is why the Lord spoke the words of this Psalm to my heart in the weeks before Daniel died. My fears for Daniel are gone. I just miss him. Terribly. I feel the "throb of agony" that Hudson Taylor spoke of whenever I think of not seeing that sweet smile, not hearing Daniel's precious laugh, not holding him close, not kissing those precious cheeks, not watching those beautiful brown eyes dance with joy and mischief...
But one day. One day there will be a great reunion! And as Hudson Taylor wrote about his Gracie, I would not have him back. The Lord was so kind and merciful to Daniel for He is far better off now. The children I have anxiety over are the one's living.
Later in Psalm 34, verse 18 reads "The LORD is near to the broken hearted and saves those who are crushed in spirit."
I trust that these words are true. My feelings go up and down, my emotions roll like the tide, but I trust in the sufficiency of His grace, I trust that He is near. I trust that He will never leave or forsake me. I also believe these words of Hudson Taylor:
“It does not matter how great the pressure is. What really matters is where the pressure lies -- whether it comes between you and God, or whether it presses you nearer His heart.”
Oh that I would be pressed nearer His heart.
But Daniel. How evident God's grace was in his short life. Amidst Daniel's suffering and the horror of blue spells, pokes, and tests his love for life filled those hospital walls. He had smiles and lollipops to share with everyone. He brought his headbands and weights to the hospital and impressed the nurses with his upper body strength. He pushed the limits with his "poopy" and "wee-wee" talk, ironically now being one of our favorite memories. He comforted others "Boo-boo's" and showed concern for their equipment and machine beeps in common areas. He had a tent bed filled with his favorite animals, games, and toys. He made sure the diffuser with his favorite oils was going and it made the halls of our wing of the hospital smell extra minty! He bought a new pair of socks and sticker packs every time we visited the gift shop. He watched adoringly as his family played baseball in the courtyard of the Children's hospital. He asked everyone who visited to play "Mem-Rie". He smiled through his pain. He let his light shine.
One of the nights that I came home to sleep, I spent a few hours in prayer on our kitchen floor. I cried. I wept. I begged God for His help. I professed my love for Him. I thanked Him for who He is and for letting me be mom to five precious kids. I asked for Him to give us answers. I asked Him for more time. I asked Him to let us bring our sweet Daniel home again. I poured my heart out to Him. I cried until I had no more tears. As I got up and sat down on our couch Psalm 34:4 was whispered to me heart...
"I sought the LORD and He answered me, and He delivered me from all my fears."
Outloud I said, "OKAY?"
Because it made no sense. As I was crying and praying and calling out to the LORD I was not feeling scared, fearful or anxious. Instead I was feeling sad, weary, brokenhearted.
It was not until after Daniel died that this response was made clear to me.
Regularly throughout Daniel's short six years of life, I asked the Lord that he would let me live one day longer than Daniel. I worried about who would care for him like me. Other prayers said regularly were for his line to not break, his pump not to malfunction in the middle of the night without me knowing (as an interruption could result in death), for emergencies to only happen where we could get help quickly, on and on the list went.
All of my fears had to do with Daniel's living. There was no fear in him dying. I knew where he was going. He loved Jesus.
I am currently again reading "Hudson Taylor's Spiritual Secret". I first read most of this book when Daniel was alive. Since his passing, I have not found more kindred words to what my own heart is feeling then in the words penned by Hudson Taylor to his mother after his 8 year old daughter Gracie passed away...
"Our dear little Gracie! How we miss her sweet voice in the morning, one of the finest sounds to greet us when we woke, and through the day and at eventide! As I take the walks I used to take with her tripping figure at my side, the thought comes anew like a throb of agony, "Is it possible that I shall nevermore feel the pressure of that little hand...nevermore see the sparkle of those bright eyes?" And yet she is not lost. I would not have her back again...
I think I never saw anything so perfect as the remains of that dear child. The long, silken eyelashes under finely arched brows; the nose so delicately chisled; the mouth, small and sweetly expressive; the purity of white features...all deeply impressed on heart and memory. Then her sweet little Chinese jacket, and little hands folded over her bosom, holding a single flower--oh it was passing fair, and so hard to close forever from our sight!
Pray for us. At times I seem overwhelmed with internal and external trials...But He said, 'I will never leave thee, nor forsake thee,' and 'My strength is made perfect in weakness.' So be it."
The words and description are different for my beloved Daniel, but the heart of love and missing and trust in the Lord is the same.
Later on in the pages of the book they lose a son too. Amidst many words Hudson Taylor wrote, "About 2 of our little ones I have no anxiety. They rest in Jesus' bosom."
Daniel now too rests in Jesus' bosom. This is what I mean by I had no fear in Daniel's dying. I am confident of where Daniel now lives. I am sure this is why the Lord spoke the words of this Psalm to my heart in the weeks before Daniel died. My fears for Daniel are gone. I just miss him. Terribly. I feel the "throb of agony" that Hudson Taylor spoke of whenever I think of not seeing that sweet smile, not hearing Daniel's precious laugh, not holding him close, not kissing those precious cheeks, not watching those beautiful brown eyes dance with joy and mischief...
But one day. One day there will be a great reunion! And as Hudson Taylor wrote about his Gracie, I would not have him back. The Lord was so kind and merciful to Daniel for He is far better off now. The children I have anxiety over are the one's living.
Later in Psalm 34, verse 18 reads "The LORD is near to the broken hearted and saves those who are crushed in spirit."
I trust that these words are true. My feelings go up and down, my emotions roll like the tide, but I trust in the sufficiency of His grace, I trust that He is near. I trust that He will never leave or forsake me. I also believe these words of Hudson Taylor:
“It does not matter how great the pressure is. What really matters is where the pressure lies -- whether it comes between you and God, or whether it presses you nearer His heart.”
Oh that I would be pressed nearer His heart.
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