Today

March 30th: Today is one year since Eden left this earth and entered a perfect heaven, she is no longer hurting, she has no trach, feeding tube, iv's or medications. Eden is peaceful and happy with many friends, family and Ripley a very special dog. She has little friends who died too soon and she is playing with them and watching over us. Most of all, she has our amazing Savior watching over her everyday. Jesus took her home because he knew it was her time and he has a plan for her life and our lives here on earth. We know that she is happy and healthy in heaven but we still miss her so much!

We spent the day tech-free, together as a family remembering our sweet baby Eden. We love her more than anything in the world and miss her so much that it makes our hearts ache. We created and lit luminaries for our sweet pea tonight- they are beautiful just like her.

Thank you so much for remembering Eden today. Thank you for the text messages, emails, flowers, cards and calls. We love all of you and feel so honored to be remembered on this difficult day.

From Daddy

March 29th: After 190 + posts of Amanda writing memories and updates I thought it was my time once again. I have put in my thoughts a couple of times but even the thought of writing a post for Eden is overwhelming when Amanda's’ posts-each one better than the last. It hurts me to even say or think about “memories” of Eden. This has been hands down the best, worst, hardest, overall greatest experience I have ever been through, but I would never want anyone to go through what we have for the past 2 years. From the first part of finding out the excitement of becoming new parents until now, nothing has been by the book or normal. The ups and downs, learning more information than I ever thought possible or necessary about pregnancy and sick kiddos. I was blessed with the two best little girls that anyone could ever wish for.

Eden was an amazing little girl, the number of lab draws, meds, and other tests that she endured and yet every day we would come in and she would kick, smile and get excited to see us. Not a day goes by I don’t wonder what it would be like to have two little toddlers at home. Watching Reagan develop and grow, I wonder what it would be like to have Eden with and how different Reagan may be. Giving kisses to Eden, hugging her and probably calling her “Baba” (which is what she calls everything now regardless if it is a puppy or not).

My hope is that Eden is with Reagan each and every day watching over her and I can’t wait to see and hold Eden again soon.

I am reposting the link to the video that we played at Eden’s service again from Youtube.

http://www.youtube.com/watch?v=9pgWNFL6AzQ

I LOVE YOU and MISS YOU MORE THAN ANYTHING EDEN.

Love Daddy

This journey

March 28th: Over two years ago we started this parenting journey. We expected it to be filled with love, joy, difficulties and frustrations. We were excited and scared to be parents, to create a human being and to be 100% responsible for it. I don't know if you're ever ready for it but our hearts were ready to love. We would never have expected our journey to turn out the way it did. This isn't just a temporary journey of difficulties for a season or a year but this journey will last our lifetime. It's the journey of healing our hearts. I think about our journey all the time- if things were different, if I had more control but then I have to remember that this journey though it may not be what we planned was given to us by God. He is in control and he has something amazing planned. Eden has changed our lives forever, and we have already seen how much Eden changed the lives of so many others.

Just this week I spoke with a music therapist at Children's and commented on how lovely and touching the new commercial for Children's is featuring her playing music to a little boy. I told her that not only did our girls love music therapy but so did we as parents. We felt at peace and calm. We also discussed something new that's happening in the NICU- babies being able to receive music therapy and we collectively realized that Eden paved the way for this. We begged for music therapy to continue after she was transferred back to the NICU from ICC and the nurses agreed that they would make an exception to the rule. Now it's having more often! There will be many more babies and parent who will be able to receive this special gift because of Eden. She is so amazing even now.

This journey is hard, my heart feels heavy, there are tears in the back of my eyes often, I feel sadder some days than others and tired too. But despite this difficult journey when I think of Eden- her smile, her beautiful eyes, her tiny hands, soft skin, her long hair- I feel happy. My heart feels happy that I had almost 8 months with her and no one can take away those memories. Scott is on this journey too, his journey make look or feel different than mine but I know there's not a day that goes by that he doesn't think about Eden. And he's hurting too, his heart needs to heal too. And Reagan.... we don't know yet about her journey. I want her so badly to remember her sister. It's even hard to write this with tears flowing down my cheeks because more than anything I want her to have her sister. Their hearts were next to each others- beating at the same rate, they calmed each when they were together and of course they were beautiful mirror images of each other. It's painful to think that she may not remember Eden, we will help keep Eden alive for her but I hope and pray that she has her own memories too.

This journey is not over, it will continue and we will rely on God, our church, family, friends and others to get through it. Here is a final thought that describes our journey, it is from Isaiah 43, v2:
'When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up; the flames will not consume you".

Beautiful- Eden's song

March 27th: This song was written for Eden. It gives us such peace and memories of just how beautiful she was. We have coined this as Eden's song.... most of you know that this song was played by our dear friends at her funeral service, but we also included this song on her video that we sent with her medical records to TCH. We wanted the doctors at TCH to see her as Eden not just another patient with a medical record number. So this song has a very special place in our hearts, we always get tears in our eyes when we hear it- good tears, tears that make us remember our sweet Eden and what she means to us. She is the other half of my world- I love her so much. MercyMe (the band) has no idea how impactful this song is, so as strange as it may sound- Thank you MercyMe for writing it. Please listen.

http://www.youtube.com/watch?v=7C2o0jHNRuU

Coming down to the last few days

March 26th: I remember the last few days of Eden's life so vividly. She was sick- too sick to hold, too sick to touch. I sat next to her bed for endless hours stroking her hands, talking to her, singing to her, playing her music (she likes Colbie Caillat) and praying. I prayed that she would get even a little bit better and that lungs would become available quickly. I prayed tirelessly, I cried because I was alone. Even though those last few days were hard I wouldn't take them away. I was with her, I cared for her, I was the only one at TCH who knew everything about her and what was best for her. I participated in daily rounds and those who know me well know that I was not quiet about decisions for Eden. I did everything I could to make sure she was comfortable and well cared for during the last days- even though I didn't know they were the last days.

Nicknames and smiles

March 25th: Here's another fun video of Eden last year before she got too sick, she also gained some lovable nicknames while in the hospital: sweet pea, kiddopotamus, and chickadee. Eden always smlied when she saw people come in to her room, this is truly how she always was even despite being so sick.

Toys

Her favorite green fish, Charlie.


My green ring!

Playing with all my friends.

March 24th: I love how you played with toys. You studied them and watched them with such awe. We tried to expose the girls to as many normal baby activities as we could. Our OT’s K and T whom we loved so much encouraged us to make the NICU experience as normal as possible. They encouraged us to be real parents and interact with the girls in the same way that we would at home. We did play time on the floor, swinging, playing with toys, tummy time and music time. Both girls were so enthralled with their toys but it was so cute to watch Eden admire her toys and kick her legs when she was so excited. She also had a fascination with her green ring, she held onto it while she was sleeping, when she was playing, she put it in her mouth and she even took it with her during her cardiac cath. I loved to see the passion and fun in her eyes.