Tuesday, July 13, 2010

Butterfly girl

"Just when the caterpillar thought the world was over, it became a butterfly." -proverb

We always begin Danica's Chiari story in late April, 2009, when she woke up from a nap with a very crooked neck. The truth is on August 5, 2008, when Danica was 10 months old, Delaney picked her up around the waist to move her while playing in the room adjacent to me. She sat her down in just the wrong way and Danica began screaming. We ended up taking a ride in the ambulance to Mercy. It wasn't until another hospital trip the next week to Akron Children's that Danica was diagnosed with "wry neck" or tortocollis. We now know that Danica's skull has been fused to her neck vertebrae since she was born and her Chiari is very possibly not congenital but what they call "secondary", a brain herniation that formed as she grew and her crooked bones forced her brain into her spinal cord. I know I have mentioned this incident to doctors but do not speak of it when recounting Danica's story to most people. She healed after some time and PT, and we never thought it was anything chronic until the next spring.

Delaney had a breakdown today. This is not the first in the past months. She has increasingly been acting out to get our attention and reacting very emotionally to things she would not normally get upset about. Through sobs and blotchy face she honestly told me she fears she caused Danica's Chiari that day she sat her down so hard. She said she prays every day God will make her sister's neck better so we can have a normal life. She said sometimes she wishes it was her neck that was "broke."

As a mother my heart has broken a million times over Danica and what is going to be her lifelong condition. I can honestly say my heart has broken as much if not more over my other healthy daughter, Delaney Jayne. She is my butterfly girl. She is smart, engaging, creative, inquisitive, brave and caring. She is just a little girl, but she carries around so many grown up experiences and concerns.

I have been writing to both my girls since before they were born. Dan has been writing to them too. Dan's mom died when he was young, and one of his greatest sadnesses comes from not having anything truly tangible about how she felt about him personally. There are many entries I could share here to try to express how much I love my Laney and how brave she has been for so long, but I will share the first entry in a new journal I started when I was pregnant with Danica with the above quote on the cover. It was written September 2, 2007.

Dearest Delaney,

I just talked to you on the phone. You are at "new" grandpa and grandma's house in Ohio. I am in the hospital and your dad is home sleeping because he worked last night. We made the very painful decision to send you to stay in Ohio and begin school there until your baby sister, Danica, arrives. I have had a long and painful pregnancy full of complications-including surgeries and long hospital stays.

In ten days you will turn five years old. You have been my joy and my strength since the day you were born. Every day I have prayed that God would help me learn how to love you loosely. I am so proud of you, Delaney. Even at five years old you are so confident in so many different situations.

I bought this journal because the message on the front reminded me of you-my beautiful butterfly. I know you don't fully understand what is going on in our family right now but with each up and down you have bravely and cheerfully adjusted.

Someday, if you are blessed with children, you will understand how hard it is to be a mother. When you came into my life I instantly learned how to love another person more than myself. In many ways letting you be away from me these weeks is an example of a mother's love and sacrifice. I know you are happier there-staying busy and not having to go through the uncertainty and daily stress we are dealing with here. I hope you look back someday and remember this time as an adventure. I ache for you and cry everyday because I miss you so much.

I have heard many times that when you feel lost in your life or unsure of who you really are you should look back at yourself as a child. I want you to know later-when you may not feel as sure as you do now-exactly who you are. Although you will change and grow, I know the foundation of your sweet spirit is laid. I love you, Delaney Jayne.


Won't you please pray for Delaney tonight? Please pray for her tender heart. We need to know how to love her better through this. We need to know how to give her more support and give her more chances to do "normal" things Danica cannot do. Please pray we will know if and when she needs outside counseling. I have asked her several times, including today, if she wanted to share with someone else. I feel very glad that she feels comfortable enough to let loose so many emotions and real feelings with me, but I want to know she is really going to be truly okay in the long term.

She told me today while doing art, something she does every day, she is not going to have children. She has held to this for some time, in part I think because of what she watched me go through. She said she will be too busy working on her art and besides she will have dogs who will be her children. Oh how I love this girl.


  1. What a wonderful Mom you are, Monica! I wish that I had written journals for my children. How precious these will be for your girls in future years!
    I will continue to pray for Delaney. She is truly a special girl. Julianna had so much fun swimming with her last week. May God continue to give you all peace and strength.
    In Him,

  2. I am praying for Delaney right now! She is such a special girl and I can't wait to see what our "butterfly" girl does in the days and years ahead! Most of all I pray wisdom for you as parents to help guide, support, and nurture her beautiful spirit! Love to you all!

  3. Monica I dont even know you but you are such a beautiful person! Your blog is such an inspiration and Delaney sounds like such a smart young girl wise beyond her years. She reminds me of my 7 year old. He knew that Braydens surgery day would be long and boring but he just HAD to be there and HAD to stay until he knew his brother was OK! I pray for you and your family daily and hope that you find wisdom to help you all get through this terrible ordeal we are bestowed upon us! I pray every single night for a cure to help our little ones! Maybe just maybe one day it will come!!

  4. Great post. I will keep your whole family in my prayers.
    I have 2 daughters as well.(plus 5 sons)My first daughter Mariah is MY Butterfly. She is 13 but like your Delaney in spirit. Very confident and wiser than her years. Then I have my little Isabelle that has Chiari.(she is my Princess) I find it amazing that you and I to have such similarities with our girls.
    Blessings to your family.