I wish I could be there with you and give you a hug. My husband used his last vacation day for Bella's memorial...I know he wont be able to get away. I will be thinking of you all day.
I am deeply sorry for your loss of sweet little Elle. She was a beautiful, amazing little girl. Thank you for allowing the blog world into Elle's journey with EB. I have grown to love each of these EB children. They simply amaze me everyday. I will keep fighting to raise awareness and bring support to EB as best I can. Hugs to your family!!!!
Will the service be videotaped and available to the blog like Belle's was? We would love to watch the memorial and feel part of it. Love and hugs from home.
Becky and Stefan and Chloe and family: Even though we are not there, we are with you in spirit and wish we could be of more help. God bless the good people at Normandale Lutheran, they are wonderful folks. We wish you peace and acceptance and hope Lisa gets over the flu in time to attend. I laughed when she told me your cute remark to Stefan when you were packing and he was talking to you. Get some rest and Sweet Baby Elle is still in all of our prayers. Love and hugs from Grandma and G.G.
I am so very sorry for your loss. Your family is in my prayers. I am amazed by the strength the families of EB children show each and every day. I feel inspired by it and hope you realize how much you are changing lives in a positive way, each and every day.
Thank you and God bless you, your family, and your beautiful Elle.
Dear Becky: Just wanted to let you know that you are still in my prayers. I know that you are numb right now and I am hoping that when the numbness fades you will feel God's Love surround you and comfort your broken heart. I will always remember your daughters beautiful eyes and adorable smile. Elle is pain free and playing with all the EB angels. God Is Good. Love and Hugs Leah's Nana
I am so sorry for your loss. We stayed at the RMH for 6 months while our 6 year old son was being treated for Refractive Myeloid Leukemia and had a BMT on April 2, 2010. He earned his angel wings on June 30,2010. I found out about your family from our friends Cheryl and Torie who are at the RMH right now. They were our neighbors when we were in house 4 and very dear friends. Please know that our thoughts and prayers go out to you and your family during this time. I know that DaNNY is playing with Ella in heaven. http://www.caringbridge.org/visit/hansendanny
We were thinking and praying for you today. We would like to have attended the service but had medical appointments that we couldn't miss. God Bless your family.
Becky and Tibi, we are so sorry for your great loss. The faith and hope and honesty in your blogs leave me with great admiration for you both, and for Elle's spirit. I am grateful to have gotten to know you all so much better thru these postings, than we were able to know each other in person until now. Alex and I have been praying for strength and comfort for you both. Thank you for the treasure-trove of photos. You are a great inspiration for me -- and clearly, for many others. With love and sympathy, Timea Miszti Hamilton & Alex Hamilton
Becky and Tibi, I found this poem 10+ years ago and have held onto it because it speaks to me so powerfully. Perhaps it will for you as well -- may it be a source of comfort.
O Mr. Tentmaker, It was nice living in this tent when it was strong and secure and the sun was shining and the air warm.
But Mr. Tentmaker, it’s scary now. You see, my tent is acting like it is not going to hold together; the poles seem weak and they shift with the wind.
A couple of stakes have wiggled loose from the sand; and worst of all, the canvas has a rip.
It no longer protects me from beating rain or stinging fly. It’s scary in here, Mr. Tentmaker. Last week I went to the repair shop and some repairman tried to patch the rip in my canvas.
It didn’t help much, though, because the patch pulled away from the edges and now the tear is worse. What troubled me most, Mr. Tentmaker, is that the repairman didn’t seem to notice I was still in the tent; he just worked on the canvas while I shivered inside. I cried out once, but no one heard me.
I guess my first real question is: Why did you give me such a flimsy tent? I can see by looking around the campground that some of the tents are much stronger and more stable than mine. Why, Mr. Tentmaker, did you pick a tent of such poor quality for me?
And even more important, what do you intend to do about it?
O little tent dweller, as the Creator and Provider of tents, I know all about you and your tent, and I love you both. I made a tent for Myself once, and lived in it in your campground. My tent was vulnerable, too, and some vicious attackers ripped it to pieces while I was still in it ... on a cross. It was a terrible experience, but you will be glad to know they couldn’t hurt me. In fact, the whole experience was a tremendous advantage because it is this very victory over my enemy that frees me to be a present help to you. O little tent dweller, I am now prepared to come and live in your tent with you, if you’ll invite me. You’ll learn as we dwell together that real security comes from My being in your tent with you. When the storms come, you can huddle in my arms and I’ll hold you. When the canvas rips, we’ll go to the repair shop together. Some day, little tent dweller, some day your tent is going to collapse. You see, I’ve designed it only for temporary use. But when it does you and I are going to leave together. I promise not to leave before you do. And then, free of all that would hinder or restrict, we will move to our permanent home and together, forever, we will rejoice and be glad.
With sympathy and hope for better days ahead, Timea Miszti Hamilton
Dear Becky and Tibi, I found this poem about 10 years ago and held onto it because it spoke to so lovingly. May it be a source of comfort and hope for you and others as well.
O Mr. Tentmaker It was nice living in this tent when it was strong and secure and the sun was shining and the air warm. But Mr. Tentmaker, it’s scary now. You see, my tent is acting like it is not going to hold together; the poles seem weak and they shift with the wind. A couple of stakes have wiggled loose from the sand; and worst of all, the canvas has a rip. It no longer protects me from beating rain or stinging fly. It’s scary in here, Mr. Tentmaker.
Last week I went to the repair shop and some repairman tried to patch the rip in my canvas. It didn’t help much, though, because the patch pulled away from the edges and now the tear is worse. What troubled me most, Mr. Tentmaker, is that the repairman didn’t seem to notice I was still in the tent; he just worked on the canvas while I shivered inside. I cried out once, but no one heard me.
I guess my first real question is: Why did you give me such a flimsy tent? I can see by looking around the campground that some of the tents are much stronger and more stable than mine. Why, Mr. Tentmaker, did you pick a tent of such poor quality for me? And even more important, what do you intend to do about it?
O little tent dweller, as the Creator and Provider of tents, I know all about you and your tent, and I love you both. I made a tent for Myself once, and lived in it in your campground. My tent was vulnerable, too, and some vicious attackers ripped it to pieces while I was still in it ... on a cross. It was a terrible experience, but you will be glad to know they couldn’t hurt me. In fact, the whole experience was a tremendous advantage because it is this very victory over my enemy that frees me to be a present help to you.
O little tent dweller, I am now prepared to come and live in your tent with you, if you’ll invite me. You’ll learn as we dwell together that real security comes from My being in your tent with you. When the storms come, you can huddle in my arms and I’ll hold you. When the canvas rips, we’ll go to the repair shop together. Some day, little tent dweller, some day your tent is going to collapse. You see, I’ve designed it only for temporary use. But when it does you and I are going to leave together. I promise not to leave before you do. And then, free of all that would hinder or restrict, we will move to our permanent home and together, forever, we will rejoice and be glad.
----- I know Elle never walked alone; she was surrounded by loving docs and nurses and family at all times. Still more importantly, God was always with her in her little torn-up tent, and she is with him now. May that bring you hope and comfort. With deepest sympathy, Timea Miszti Hamilton
Dear Becky and Tibi, I found this poem about 10 years ago and held onto it because it spoke to so lovingly. May it be a source of comfort and hope for you and others as well.
O Mr. Tentmaker, It was nice living in this tent when it was strong and secure and the sun was shining and the air warm. But Mr. Tentmaker, it’s scary now. You see, my tent is acting like it is not going to hold together; the poles seem weak and they shift with the wind. A couple of stakes have wiggled loose from the sand; and worst of all, the canvas has a rip. It no longer protects me from beating rain or stinging fly. It’s scary in here, Mr. Tentmaker.
Last week I went to the repair shop and some repairman tried to patch the rip in my canvas. It didn’t help much, though, because the patch pulled away from the edges and now the tear is worse. What troubled me most, Mr. Tentmaker, is that the repairman didn’t seem to notice I was still in the tent; he just worked on the canvas while I shivered inside. I cried out once, but no one heard me.
I guess my first real question is: Why did you give me such a flimsy tent? I can see by looking around the campground that some of the tents are much stronger and more stable than mine. Why, Mr. Tentmaker, did you pick a tent of such poor quality for me? And even more important, what do you intend to do about it?
O little tent dweller, as the Creator and Provider of tents, I know all about you and your tent, and I love you both. I made a tent for Myself once, and lived in it in your campground. My tent was vulnerable, too, and some vicious attackers ripped it to pieces while I was still in it ... on a cross. It was a terrible experience, but you will be glad to know they couldn’t hurt me. In fact, the whole experience was a tremendous advantage because it is this very victory over my enemy that frees me to be a present help to you.
O little tent dweller, I am now prepared to come and live in your tent with you, if you’ll invite me. You’ll learn as we dwell together that real security comes from My being in your tent with you. When the storms come, you can huddle in my arms and I’ll hold you. When the canvas rips, we’ll go to the repair shop together. Some day, little tent dweller, some day your tent is going to collapse. You see, I’ve designed it only for temporary use. But when it does you and I are going to leave together. I promise not to leave before you do. And then, free of all that would hinder or restrict, we will move to our permanent home and together, forever, we will rejoice and be glad.
----- I know Elle never walked alone; she was surrounded by loving docs and nurses and family at all times. Still more importantly, God was always with her in her little torn-up tent, and she is with him now. May that bring you hope and comfort. With deepest sympathy, Timea Miszti Hamilton
Just wanted to drop in and let you know that your precious family has been in my thoughts and prayers. May God hold you ever so tightly. love always, nicole b
I'm continuing to pray for your family as you adjust to this new norm for you - I cannot imagine how difficult it is, but I know God is there with you. He walks beside you. I pray the Holy Spirit and His Word bring you comfort as you work through your grief.
I recently read this but do not know who to give credit too, thought it perfect for you now.
"When someone you love becomes a memory, the memory becomes a treasure"
(hugs)
ReplyDeleteI wish I could be there with you and give you a hug. My husband used his last vacation day for Bella's memorial...I know he wont be able to get away. I will be thinking of you all day.
ReplyDeleteDenise WI
I am deeply sorry for your loss of sweet little Elle. She was a beautiful, amazing little girl. Thank you for allowing the blog world into Elle's journey with EB. I have grown to love each of these EB children. They simply amaze me everyday. I will keep fighting to raise awareness and bring support to EB as best I can. Hugs to your family!!!!
ReplyDeleteI am so sorry for your loss. Anne in SC
ReplyDeleteDarling Becky
ReplyDeleteWill the service be videotaped and available to the blog like Belle's was? We would love to watch the memorial and feel part of it. Love and hugs from home.
Aunt LaVonne
Becky and Stefan and Chloe and family:
ReplyDeleteEven though we are not there, we are with you in spirit and wish we could be of more help. God bless the good people at Normandale Lutheran, they are wonderful folks.
We wish you peace and acceptance and hope Lisa gets over the flu in time to attend. I laughed when she told me your cute remark to Stefan when you were packing and he was talking to you.
Get some rest and Sweet Baby Elle is still in all of our prayers.
Love and hugs from Grandma and G.G.
:(((
ReplyDeletefrom Portugal, Ana Cristina
I just made a donation to PUCK in Elle's name. Elle's journey has not ended - she will continue to teach us all.
ReplyDeleteJess
Chicago, IL
Still with you in my thoughts many times every day. She looks absolutely adorable in your photos. Sweet, gorgeous baby Elle!
ReplyDeleteAlexandra in Australia
I am so very sorry for the loss of sweet baby Elle.
ReplyDeleteI am so very sorry for your loss. Your family is in my prayers. I am amazed by the strength the families of EB children show each and every day. I feel inspired by it and hope you realize how much you are changing lives in a positive way, each and every day.
ReplyDeleteThank you and God bless you, your family, and your beautiful Elle.
Shanna
Mobile, Alabama
Dear Becky: Just wanted to let you know that you are still in my prayers. I know that you are numb right now and I am hoping that when the numbness fades you will feel God's Love surround you and comfort your broken heart.
ReplyDeleteI will always remember your daughters beautiful eyes and adorable smile.
Elle is pain free and playing with all the EB angels.
God Is Good. Love and Hugs Leah's Nana
I am so sorry for your loss. Losing a child is such a hard thing. ((Hugs))
ReplyDeleteI'm so sorry for your loss. We will be praying for you and your family.
ReplyDeleteHugs.
Christina
:-/
ReplyDeleteI am so sorry for your loss. We stayed at the RMH for 6 months while our 6 year old son was being treated for Refractive Myeloid Leukemia and had a BMT on April 2, 2010. He earned his angel wings on June 30,2010. I found out about your family from our friends Cheryl and Torie who are at the RMH right now. They were our neighbors when we were in house 4 and very dear friends. Please know that our thoughts and prayers go out to you and your family during this time. I know that DaNNY is playing with Ella in heaven.
ReplyDeletehttp://www.caringbridge.org/visit/hansendanny
We were thinking and praying for you today. We would like to have attended the service but had medical appointments that we couldn't miss. God Bless your family.
ReplyDeleteBarbara and AJ (RDEB)
I am so sorry for the loss of your beautiful baby girl. There are no words...
ReplyDeleteBecky and Tibi, we are so sorry for your great loss. The faith and hope and honesty in your blogs leave me with great admiration for you both, and for Elle's spirit. I am grateful to have gotten to know you all so much better thru these postings, than we were able to know each other in person until now. Alex and I have been praying for strength and comfort for you both. Thank you for the treasure-trove of photos. You are a great inspiration for me -- and clearly, for many others. With love and sympathy, Timea Miszti Hamilton & Alex Hamilton
ReplyDeleteBecky and Tibi, I found this poem 10+ years ago and have held onto it because it speaks to me so powerfully. Perhaps it will for you as well -- may it be a source of comfort.
ReplyDeleteO Mr. Tentmaker,
It was nice living in this tent when it was strong and secure and the sun was shining and the air warm.
But Mr. Tentmaker, it’s scary now. You see, my tent is acting like it is not going to hold together; the poles seem weak and they shift with the wind.
A couple of stakes have wiggled loose from the sand; and worst of all, the canvas has a rip.
It no longer protects me from beating rain or stinging fly. It’s scary in here, Mr. Tentmaker.
Last week I went to the repair shop and some repairman tried to patch the rip in my canvas.
It didn’t help much, though, because the patch pulled away from the edges and now the tear
is worse. What troubled me most, Mr. Tentmaker, is that the repairman didn’t seem to notice
I was still in the tent; he just worked on the canvas while I shivered inside. I cried out once, but no one heard me.
I guess my first real question is: Why did you give me such a flimsy tent? I can see by
looking around the campground that some of the tents are much stronger and more stable
than mine. Why, Mr. Tentmaker, did you pick a tent of such poor quality for me?
And even more important, what do you intend to do about it?
O little tent dweller, as the Creator and Provider of tents, I know all about you and your tent, and I love you both. I made a tent for Myself once, and lived in it in your campground. My tent was vulnerable, too, and some vicious attackers ripped it to pieces while I was still in it ... on a cross. It was a terrible experience, but you will be glad to know they couldn’t hurt me. In fact, the whole experience was a tremendous advantage because it is this very victory over my enemy that frees me to be a present help to you. O little tent dweller, I am now prepared to come and live in your tent with you, if you’ll invite
me. You’ll learn as we dwell together that real security comes from My being in your tent with
you. When the storms come, you can huddle in my arms and I’ll hold you. When the canvas rips, we’ll go to the repair shop together. Some day, little tent dweller, some day your tent is going to collapse. You see, I’ve designed it only for temporary use. But when it does you and I are going to leave together. I promise
not to leave before you do. And then, free of all that would hinder or restrict, we will move to our permanent home and together, forever, we will rejoice and be glad.
With sympathy and hope for better days ahead, Timea Miszti Hamilton
Dear Becky and Tibi, I found this poem about 10 years ago and held onto it because it spoke to so lovingly. May it be a source of comfort and hope for you and others as well.
ReplyDeleteO Mr. Tentmaker
It was nice living in this tent when it was strong and secure and the sun was shining and the air warm. But Mr. Tentmaker, it’s scary now. You see, my tent is acting like it is not going to hold together; the poles seem weak and they shift with the wind. A couple of stakes have wiggled loose from the sand; and worst of all, the canvas has a rip. It no longer protects me from beating rain or stinging fly. It’s scary in here, Mr. Tentmaker.
Last week I went to the repair shop and some repairman tried to patch the rip in my canvas. It didn’t help much, though, because the patch pulled away from the edges and now the tear
is worse. What troubled me most, Mr. Tentmaker, is that the repairman didn’t seem to notice I was still in the tent; he just worked on the canvas while I shivered inside. I cried out once, but no one heard me.
I guess my first real question is: Why did you give me such a flimsy tent? I can see by
looking around the campground that some of the tents are much stronger and more stable
than mine. Why, Mr. Tentmaker, did you pick a tent of such poor quality for me? And even
more important, what do you intend to do about it?
O little tent dweller, as the Creator and Provider of tents, I know all about you and your tent, and I love you both. I made a tent for Myself once, and lived in it in your campground. My tent was vulnerable, too, and some vicious attackers ripped it to pieces while I was still in it ... on a cross. It was a terrible experience, but you will be glad to know they couldn’t hurt me. In fact, the whole experience was a tremendous advantage because it is this very victory over my enemy that frees me to be a present help to you.
O little tent dweller, I am now prepared to come and live in your tent with you, if you’ll invite me. You’ll learn as we dwell together that real security comes from My being in your tent with you. When the storms come, you can huddle in my arms and I’ll hold you. When the canvas rips, we’ll go to the repair shop together. Some day, little tent dweller, some day your tent is going to collapse. You see, I’ve designed it only for temporary use. But when it does you and I are going to leave together. I promise not to leave before you do. And then, free of all that would hinder or restrict, we will move to our permanent home and together, forever, we will rejoice and be glad.
----- I know Elle never walked alone; she was surrounded by loving docs and nurses and family at all times. Still more importantly, God was always with her in her little torn-up tent, and she is with him now. May that bring you hope and comfort. With deepest sympathy, Timea Miszti Hamilton
Dear Becky and Tibi, I found this poem about 10 years ago and held onto it because it spoke to so lovingly. May it be a source of comfort and hope for you and others as well.
ReplyDeleteO Mr. Tentmaker, It was nice living in this tent when it was strong and secure and the sun was shining and the air warm. But Mr. Tentmaker, it’s scary now. You see, my tent is acting like it is not going to hold together; the poles seem weak and they shift with the wind. A couple of stakes have wiggled loose from the sand; and worst of all, the canvas has a rip. It no longer protects me from beating rain or stinging fly. It’s scary in here, Mr. Tentmaker.
Last week I went to the repair shop and some repairman tried to patch the rip in my canvas. It didn’t help much, though, because the patch pulled away from the edges and now the tear is worse. What troubled me most, Mr. Tentmaker, is that the repairman didn’t seem to notice I was still in the tent; he just worked on the canvas while I shivered inside. I cried out once, but no one heard me.
I guess my first real question is: Why did you give me such a flimsy tent? I can see by looking around the campground that some of the tents are much stronger and more stable than mine. Why, Mr. Tentmaker, did you pick a tent of such poor quality for me? And even more important, what do you intend to do about it?
O little tent dweller, as the Creator and Provider of tents, I know all about you and your tent, and I love you both. I made a tent for Myself once, and lived in it in your campground. My tent was vulnerable, too, and some vicious attackers ripped it to pieces while I was still in it ... on a cross. It was a terrible experience, but you will be glad to know they couldn’t hurt me. In fact, the whole experience was a tremendous advantage because it is this very victory over my enemy that frees me to be a present help to you.
O little tent dweller, I am now prepared to come and live in your tent with you, if you’ll invite me. You’ll learn as we dwell together that real security comes from My being in your tent with you. When the storms come, you can huddle in my arms and I’ll hold you. When the canvas rips, we’ll go to the repair shop together. Some day, little tent dweller, some day your tent is going to collapse. You see, I’ve designed it only for temporary use. But when it does you and I are going to leave together. I promise not to leave before you do. And then, free of all that would hinder or restrict, we will move to our permanent home and together, forever, we will rejoice and be glad.
----- I know Elle never walked alone; she was surrounded by loving docs and nurses and family at all times. Still more importantly, God was always with her in her little torn-up tent, and she is with him now. May that bring you hope and comfort. With deepest sympathy, Timea Miszti Hamilton
Just wanted to drop in and let you know that your precious family has been in my thoughts and prayers. May God hold you ever so tightly.
ReplyDeletelove always,
nicole b
I'm continuing to pray for your family as you adjust to this new norm for you - I cannot imagine how difficult it is, but I know God is there with you. He walks beside you. I pray the Holy Spirit and His Word bring you comfort as you work through your grief.
ReplyDeleteI recently read this but do not know who to give credit too, thought it perfect for you now.
"When someone you love becomes a memory,
the memory becomes a treasure"
Praying from Waterford, MI
Kim M