Monday, June 20, 2011

Father's Day

Father's Day was hard for us this year, but it was a good time to be grateful for all of the wonderful memories we have with our amazing Daniel Mark. I have SO many pictures of Dan with his adoring Daddy. Here are just a few.

I couldn't have asked for a better Daddy for my sweet little boy. I know Dan loves his Daddy so much! Happy Father's Day Tyler- I love you!
When we first brought Dan home from the hospital, one of the first things we did was show him his awesome super mario nursery that his Daddy did for him. I don't know how Tyler felt, but the Drs made me feel like he would be lucky to leave the hospital, let alone make it home. When we got home we got really overwhelmed so we decided to sit down in the rocking chair and rock Dan, and read him a story. It happpened to be the story of Easter. I'm so glad Dan was here with us for Easter this year. It was a very special Easter.

I just remember crying and thinking of the resurrection and knowing that Dan's heart will be perfect. Oh how I miss him. It's so hard to rock in that rocking chair without him.

If you think I'm cute...

This picture of Dan was taken before we came home from the hospital. We didn't have any of Dan's clothes or blankies at the hospital with us yet, because we were expecting him to be in the CICU for 3-6 weeks after his first surgery. (I thought I would have had time to go pick something out for him, too) I had to have Aunt Chelsie and Uncle Nash stop at our house on their way to the hospital to get some things. I had her get his famous green and brown minky couture blankie, and a few onesies. One specific onesie was the one that said "If you think I'm cute, you should see my Aunt Daylan" a custom onesie that Auntie Daylan made for Dan. I absolutely love it and think its so cute and since Aunt Daylan got it for him I wanted him to wear it. It was the first outfit that our little Dan wore (well besides the white one he wore in his NILMDTS pictures.) I thought for sure it would fit him perfect, but it was a little big. Little did I know, Dan would be wearing ALL the newborn clothes that he had, I even had to go and buy some more!

Monday, June 13, 2011

Tonight Tyler and I went to the cemetery to visit Dan. The sprinklers had just turned off so the grass was soaking wet. I made a "temporary headstone" so we will have a picture of Dan to kiss as we leave- until we get the real headstone ordered. Grandpa Mark had a visit with Dan earlier today, and he brought him some ninja turtles! Pretty awesome. :)

Found this on another heart mom's blog, who lost her son after 44 days. I just had to re-post it.

The surgeon sat beside the boy's bed; the boy's parents sat across from him. "Tomorrow morning," the surgeon began, "I'll open up your heart..."

"You'll find Jesus there," the boy interrupted.

The surgeon looked up, annoyed. "I'll cut your heart open," he continued, "to see how much damage has been done..."

"But when you open up my heart, you'll find Jesus in there." The surgeon looked to the parents, who sat quietly.

"When I see how much damage has been done, I'll sew your heart and chest back up and I'll plan what to do next."

"But you'll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You'll find Him in my heart."

The surgeon had had enough. "I'll tell you what I'll find in your heart. I'll find damaged muscle, low blood supply, and weakened vessels. And I'll find out if I can make you well."

"You'll find Jesus there too. He lives there."

The surgeon left. After the surgery, the surgeon sat in his office, recording his notes: "...damaged aorta, damaged pulmonary vein, widespread muscle degeneration. No hope for transplant, no hope for cure. Therapy: painkillers and bed rest. Prognosis:" here he paused, "death within one year."

He stopped the recorder, but there was more to be said. "Why?" he asked aloud.

"Why did You do this? You've put him here; You've put him in this pain; and You've cursed him to an early death. Why?"

The Lord answered, "The boy, My lamb, was not meant for your flock for long, for he is a part of My flock, and will forever be. Here, in My flock, he will feel no pain, and will be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow."

The surgeon's tears were hot, but his anger was hotter. "You created that boy, and You created that heart. He'll be dead in months.


The Lord answered, "The boy, my lamb, shall return to my flock, for he has done his duty: I did not put My lamb with your flock to lose him, but to retrieve another lost lamb."

The surgeon wept.

The surgeon sat beside the boy's bed; the boy's parents sat across from him. The boy awoke and whispered, "Did you cut open my heart?"

"Yes," said the surgeon.

"What did you find?" asked the boy.

"I found Jesus there," said the surgeon.

Author unknown

Saturday, June 11, 2011

Somewhere Over The Rainbow

Somewhere Over The Rainbow, sung by Israel "IZ" Kamakawiwo╩╗ole is one of the songs I would play and sing to Daniel. I love this version of the song. It is particularly special to me now, as it was playing when Daniel passed away. You can listen to it at the bottom of the blog. I hope he liked it when his Mommy would sing to him- I didnt get to do it very often because it was hard for me not to start crying at the same time.

Miracle Dan bracelets

We had these bracelets made in honor of Dan. Tyler and I wear them all the time. It is so sweet to see our friends and family members wearing their Dan bracelets all the time. If you would like a bracelet, you can email me at Ill send you my address and you can mail me a pre paid envelope. :)

Memorial Day

Dan had LOTS of flowers and toys for Memorial Day 2011. Thank you to everyone who brought him flowers, toys, etc. It makes me so happy when there is something new there, especially when I don't know where or who it came from.

Dan's Grandpa, Mark, has been SO good to make sure Daniel's grave looks nice. I went to visit Dan one day, and Grandpa Mark was there. He dug up the dead grass that was there, and replaced it with nice green grass for little Dan. Sweet, huh!?

Memorial Day will be different for us forever now. Pretty much every holiday will be different without Dan here.

Messages to Heaven

After Dan's Celebration on May 19, we all went to the cemetery and after Tyler dedicated his grave we had everyone write a message to Dan on a balloon and then we all let go at the same time and sent them up to heaven for him. I read about doing this in a bereavement package and Aunt Chelsie and Uncle Nash made it happen and got all the balloons for us. Thanks guys :) It was perfect. I still get teary eyed from when my dad showed me his balloon. It said "We will go fishing Daniel" -Love Grandpa Dan. I wish so badly Dan was here to go fishing with Grandpa Dan. But they will make it out fishing someday, and they will catch a huge catfish.

Some memories of my Dan

I was so scared to have a baby. Im not a girl that holds babies all of the the time. It came so amazingly natural with Daniel. Now that he is gone, that fear of holding babies has returned. All of our close friends have babies and I admit, it is really hard. I just want to cry. Daniel was supposed to grow up with them, and cause mischeif with his little friend Dominic. But I know he is in heaven with other angels and I really hope they are having fun! I wasn't scared to hold Daniel for the first time, I couldnt wait. He was so beautiful, even with all the tubes and IV's (I hated that IV in his head) when they took him off all the tubes and wires and IVs- he was so tough. He cried a little bit when they took it off but man, he was SOO tough! and boy, could he scream! It was so nice to hear a cry from him, when he was first born he wasn't breathing so I didnt get to hear that first cry like some moms do.

Some of Dan's newborn pics that I love!

Dan's Obituary

"An angel in the book of life wrote down our baby's birth and whispered as she closed the book, 'Too Beautiful for Earth.’” - author unknown Our handsome, miracle, baby boy, Daniel Mark Jones returned home peacefully to the arms of his Father in Heaven on May 19, 2011. He was in the company of his loving parents, Tyler and Lindsay Jones, and close family as he closed his eyes and moved on to the next life. Dan was born April 14, 2011 with a special heart. His five minute life expectancy turned into five miraculous weeks. Dan blessed the lives of his family, friends and total strangers. His life story has touched so many and his memories will live on inside each of the hearts he touched. His strength, courage, and bravery will forever inspire us all as we travel through life's challenges. Dan loved being held and spent most of his life in the arms of loved ones. Dan spent many nights in the arms of his amazing, loving grandparents, Mark and Karen Jones and Pama and Daniel Wynn. He loved going on walks in his stroller, watching soccer with his dad, and spending long hours in his mommy's arms as she cuddled and kissed him. Dan was adored by his aunts and uncle, Daylan and Rilee Jones, Shirley Cussimanio (Susu), and Chelsie and Nash Montoya. Dan is now in the company of loving great grandparents, Lyle and Lorraine Wynn, Robert and Carol Tingen, and Charles "Toy" Atwood. He will be missed by remaining great grandparents, Jill Abrahams Jones, Gayle Atwood and William and Jackie Jones. Special thanks to U of U hospital, Primary Children's Medical Center, Rocky Mountain Hospice, Miles of Memories Photography, Lindquist’s Mortuary, and all who selflessly served, prayed, supported, and loved us. A celebration of Dan's life will be held Tuesday May 24, 2011 at 2 pm at Pheasant Run Ward Chapel (5080 S 3100 W, Roy, UT) All who wish to bid Dan farewell can do so Monday from 6 to 8 pm at Roy Lindquist’s Mortuary (3333 W 5600 S, Roy, UT) Donations can be made to the Miracle Dan Fund at America First Credit Union (Account#9046764) We love you Miracle Dan, and we will think about and miss you everyday until we once again hold you in our arms. - Love Mommy and Daddy