Zoe Grace: Forever.

{forever holding our hearts}

It has been two days since Andrew posted the following on Zoe's Facebook page...

"Today we met with Dr. King (pediatric cardiologist) and Dr. Huffman (neurologist). They aren’t feeling as though Zoe will be making a recovery this time. The damage to her brain is too severe to get the Zoe we all know back. She needs heart surgery to survive but her neurological state will not allow the surgeons to operate and she does not qualify for a transplant. We now, as parents, must decide the best option for our beloved daughter and family. We've asked for prayers of peace, we thank you all who have offered those on Zoe’s behalf and ours. We need them now more than ever."

Although we had sensed that this would be the end result, actually hearing it from our doctors was heartbreaking. How do you accept that your daughter's journey here on earth is over?  How can you be certain that it is her time to go?  I have been asking these questions over and over again in my head.  But, what I wasn't doing was asking my Father in Heaven those very same questions.  It was my husband who told me to pray about our decision and wait for peace.  It has taken prayer and time to know in my heart and soul that Zoe is ready to move on and that although short, her time here with us was significant and meaningful.  

She has touched so many lives, including ours with her spirit and fight for life.  What pain her body has been through in her 4 1/2 months of life is more than most individuals do in a lifetime.  She survived open heart surgery, infection, stroke, numerous pokes and medications.  She has shown us miracle upon miracle, from the day she was born.  It is an honor to be her mother... to protect and carry her for 9 months... to sit at her bedside day after day in the hospital and care for her for the few short months we were able to have her home.  I will cherish my tender memories of rocking her at night, smooching on her delicious cheeks and snuggling her on my chest.  I am blessed to have her sealed to me and my family for time and all eternity.  I know with every fiber of my being that we will reunite and the next time I see her, she will be without pain and suffering.     

Zoe has taught me patience and understanding.  She has inspired me to never give up and always fight for what I believe.  She has taught me that the most valuable gift in life is family.  Our time with her has been precious and sacred, but I can't even begin to explain how much I will miss her.  My heart aches every minute of every hour for this little girl.  How can I let her go?  How can WE let her go?  My only comfort is that families can be together forever.  We are a forever family.  

{When changing the tape on her breathing tube, we got to see her sweet face for the first time in 4 days}

We started explaining to Londyn that we will have a few more days with Zoe and then she is going to live with our Heavenly Father.  I told her that we would all miss Zoe and that it is okay to miss her, but she will be happy in heaven and we will see her again someday.  Londyn was quiet for a few seconds and then said very softly, "I'm going to miss Zoe so much, Mom."  Lulu is only 3 years old and I know she can't fully understand all of this, but I know that she is feeling sad.  Yesterday, we did hand and foot prints as a family.  Londyn loved the idea of doing a craft project with her sister.  After we got home late last night, we were tucking Lulu in for bed and she popped up and said, "I want my picture I made with Zoe on my wall."  Andrew put it up on her wall and she got out of bed and looked at it for a few moments.  She smiled and was then able to go to bed.  My heart hurts for Londyn as she has always loved her sister.  She always wants to show Zoe her freshly painted nails or pictures she has drawn.  Often times when she is doing something fun, she says "Zoe is going to do this with me when she gets bigger."  I hope and pray that her heart will heal along with ours and that she will never forget her baby sister.


We also had Chelle from Momentoes come in and do castings of Zoe's hands and feet.  It was such a beautiful experience to watch her preserve every little detail about her tiny fingers and toes.  I will cherish this special keepsake forever.  

Another special moment was when we got to hold Zoe for the first time in 6 days.  Scooping our little angel up in our arms was a little piece of heaven.  It felt so warm and familiar.  

I asked our nurse Erika if it would be possible for them to move Zoe from a crib to a bed, so we could snuggle up and sleep with her.  Without difficulty, it was done.  Since yesterday, we have been able to feel her breathe... smell her skin and hold her close to our bodies, as if we were at home in our own bed.  

Many tearful visits.
{My nieces: Megan, Kaylee, Jen & Samantha}

{Nieces & Nephew: Kayla, Kamry, Mary, Emma & Kyler}
Each one of these tender hearted kiddos wrote Zoe a letter.  Each one brought tears to my eyes.  They also played this song and said it has always reminded them of Zoe.

{Uncle Todd}

{Dr. Flath, the OB and family friend who delivered our sweet Zoe}
We have been struggling with the decision of when to take our baby off of life support.  How do you make that decision?  How about never?  Although comfortable and not feeling pain, it is selfish to keep her hanging on any longer.  Her poor body has done all that it can.  We want to give her peace and rest.  I have been fighting with the question of when... when will I be ready?  But that is not my decision.  It is Zoe's.  

Andrew's mom composes a beautiful piano piece for each grandchild and last night we crawled into bed and listened to Zoe's song.  It starts out so sweet and fragile, just like Zoe.  It then works up to a deep and strong middle... which reminded me of the struggle and pain that Zoe has suffered.  The song then finishes with a beautiful and almost heavenly ending.  We both shed many tears from beginning to end, followed by peace in knowing that she is ready.  She is ready now.  

In a couple of days, we will let our angel Zoe Grace get her wings.  She will return to the arms of our Father in Heaven and finally be at peace, once again.  

Our family has been blessed by the kind thoughts and prayers of many, all over the world.  Zoe has touched so many lives and we are grateful to have been a part of her miraculous journey.  


ME said...

I'm sorry that the when had to come so soon. I'm glad you have so much support but no one but you knows the pain in your heart and I help the Lord gives you comfort.

Jordyn D said...

This post was beautiful Kacie. It brought me to tears, we're so lucky to have the gospel and the blessings of temple sealings. Zoe will be with Heavenly father. She will be waiting for you and your wonderful family.

Emily said...

I know you must be crying inside all the time but it's great that you got all your feelings and thoughts down.
She is beautiful and sweet. I'll be praying for your family.

suz said...

Sending prayers for your beautiful daughter and for your family. Although your post brings tears and my own memories of my heart baby to mind It also makes me smile to see the moments that you and your family get to spend with Zoe. You will cherish them forever. I will carry you and your family close to my heart during the next few difficult days sending prayers of healing and strength.

suz said...

Sending prayers for your beautiful daughter and for your family. Although your post brings tears and my own memories of my heart baby to mind It also makes me smile to see the moments that you and your family get to spend with Zoe. You will cherish them forever. I will carry you and your family close to my heart during the next few difficult days sending prayers of healing and strength.

Cherie Enevoldsen said...

Oh my word!! I am bawling as I sit and read this from down the hall from where you and your little angel are snuggling :( What a true pleasure it has been taking care of Miss Zoe, and seeing the grace you both have through this difficult time. Many many prayers and tears for you through this. Peace to each of you, and Miss Zoe, you have been quite the angel!

alison said...

Zoe's story touch me... You'll have joy and peace to be with her eternaly.. God bless you and give you strengh... thank you for sharing this part of life, it remember me how perfect and loving is the plan of salvation.

Jenni Merritt said...

I only know you through the beautiful photos Vince took of your family before Zoe was born. But I wanted to let you know I have been following these updates and keeping your amazing family in my daily prayers. I can feel the spirit so strong as I read this post, and know that Heavenly Father is watching out for your family through this trying time. Stay strong. Zoe couldn't have asked for a better family to spend this time with. And thank goodness for the promises of the temple, because you know she will never be far away.

Jenny said...

I can not stop crying right now. Thank you Kacie, your words are perfect. They are inspiring and they are hopeful! You have reminded me just what life is all about. Thank you for sharing your journey with all of us. Zoe has touched more lives then you will ever know. I am so glad that you have had so many tender mercies with her these last few days. Zoe is beautiful and she is so blessed to have you and Andrew and Londyn! I can't even imagine how difficult this has all been for you, but how wonderful that we know that families are eternal! You and Andrew are so strong and so amazing! I pray for you and will continue to do so! May God bless you!

Whitney McGowan said...

We are praying for you and your family. Thank you for sharing your beautiful testimony. You are so strong, and I can't imagine how difficult it would be to be in your shoes. You definitely will see your precious Zoe again. - Whitney McGowan

Hilarie* said...

I have followed your FB page the last week, after seeing a post a friend made. I am so sorry for this situation you are in. I too agree with you friend... You can feel the spirit so strong reading you post that I am covered in tears. I was so happy so see you are members, and that because of the knowledge you have you can have that added measure of peace knowing you will be together again. Your story is so special and thank you for sharing it with the world. These networks can be so good, in sharing something like this... Because people like my family and many others are able to pray for you during this time. May the lord bless you and keep you.

Kristin said...

Thank you for your testimony Kacie. You and Andrew are amazing examples to all of us. I can feel the spirit as I read your blog and the tears run down my face. What a blessing to have these few days to make memories and say goodbye. Love and prayers are coming your way.

Meant2Be5 said...

Hi Kacie,
My name is Lyndsie Wiberg. I had a beautiful little baby girl about four weeks ago. Shortly after she was born she was diagnosed with SMA and she was in the most terminal stage of the disease. We took her off of life support 10 days after she was born and it was the most heartbreaking yet peaceful experience i have ever had in my life. I knew she was suppose to go. She let me know it was part of her plan of life. It was the most painful decision. I am so so very sorry for the heartache you have i wish i could take it from you, it hurts so much. Please if you have a minute find Telaai Milene Wiberg on face book. That's my little girl and the story of we just went through only weeks ago. I'm so sorry that you guys are going through this, especially when you have to tell your kids and they just don't understand. My kids were so sad too. Zoe will be with you and your family for the rest of your lives she will never leave you. Families are forever and you will be able to hold your sweet baby again. Please if you have any questions or need to talk to someone who has been through this i would love to help with anything i can. with much love from a complete stranger, but a friend who knows of your heartache.
Lyndsie Hall Wiberg

Valerie said...

Sending prayers for comfort during these very sad goodbyes <3

Paul and Amy Barton said...

Your post makes my heart ache, yet I am in awe of how you have been able to capture your thoughts and share them. Your words were beautiful, and I could really feel such a strong witness of the importance of families and of how amazing the plan of happiness is. Of course I have no idea what to say, but my family and I have and will keep you and your family in our hearts, minds and prayers. We love you and your family.