Wednesday, November 10, 2010

This Want

Ryan and I stayed up late the other night watching her videos. They played on random so we went from her being home to her being in the hospital. The last video we watched before we went to bed was from the Friday before she passed away. It was a long video, a good friend was taping us bathe and dress her.

It started out with me holding her, still. Not being able to move because if I moved even an inch I could mess up the tubes. I tickled her face, she tried to look around as best as she could without really moving. They picked her up and put her in that tub. She was really uncomfortable. Her body was limp. She had lost just about all movement in her legs by this point. She would occasionally jerk her leg up but they were incredibly weak. It showed me fold her tiny little body into this bucket. I washed her as fast as I could since it was cold in the room.
The nurse and RT were the only ones who could pick her up. I never got to just hold her. Free. Without being tied down to a chair. I rubbed lotion on her body. She could hardly move, she couldn’t resist me twisting her and turning her body this way or that. I gave her mini massages on her legs and back. I slipped that dress on her from the legs up. I held her head up with the help of the RT so Ryan could tie the bow in the back, (that was a huge thrill for me- to hold her head up) and we finished with a white bow on her head.

This video hit us. To see the life she was in the middle of. Powerless. Almost 5 months. Barley able to move. Anytime her tubes moved she would cough uncontrollably and her body would shake. Her eyes were red and very heavy. That disease took over her body. She was fighting with all of her strength against it. Her feeding tube kept failing. Air bubbles kept forming in her belly. It was obvious it was near the end. I can see in those videos how she was holding on for us.

When it was over- it was the end.
It was like someone kicked me and kept kicking me. Over and over.
My heart stops.
You feel like your falling. No one can catch you.
Your life is different. So unbelievably different. In every possible way. From the first breath you take in the morning to the last one you take at night. Your world has changed. Every part of it.
The one thing you can walk away from with this experience is knowing you’re at the bottom. Knowing nothing in the world will ever make you this low again.
Now that feeling is scary. To know anything else can happen in life but nothing- nothing will make you feel worse than the feeling you’re in now.

I know that someday- at some point in this whole rocky road- there will come a time that it will all be worth it. Because I will see the life she was able to lead instead. I will see that she really is okay and that she is so beyond perfect. I will be able to hold her. I will never have to let her go again.

Now this feeling- this indescribable want- takes my breath away.


Ashley Sullenger said...


You made me cry with this one. I too know how those tubes affect a little girl's body. I know the pain of not being able to hold your baby, realizing she really is suffering to hold on for her mom and dad, just to give them a little more time to realize that it isn't the end. I wish I didn't know it, but I do. You described how I feel, knowing I'm at the lowest part of my life, and the joy we'll experience seeing our little girls again. I think about being resurrected all the time. Can you imagine the joy we'll feel? I can't wait to chase Preslee again, and feel her little arms around my neck. We just have to endure, one day we'll make it.

Love ya girl! Hang in there during this holdiay season. It's going to be tough. I think about you all the time!

Anonymous said...

Kendra and Ashley: I think you are both incredible young women. I am amazed and in awe at the love and devotion you have for your daughters. You are both right - the road is long, hard but it will be worth it someday. Don't give up the hope. Remember always that the love never ends. I have been and will continue to pray for both of you every day. Aunt Mary

Ceeu N Uila said...
This comment has been removed by the author.
Ceeu N Uila said...


My heart is filled with so many emotions after reading this post. I too know this pain. My oldest son was given 5-10 days to live when he was born but was able to pull out of it. I remember seeing his little body shake every time the ventilator puffed air into his weak lungs and I remember praying to our Heavenly Father to allow me to take his place.....

When my second son passed (it was a car accident that took his life, he was 18 months old) 3 years ago I thought I'd never be able to walk again. Today I still grieve the loss of my son and I too look forward to the time when I will feel the weight of his little hand in mine, hear his laugh, or hear him say mommy. I miss him sooo much and pray for the courage and strength to continue living this life as best I can so that I can be with him.
I hope that you can find comfort in knowing that Mackenzie is yours, for now and until eternity.....She is yours.

Jahjahz mahmee

brigette said...

Oh kendra im crying reading this post. How i hate that we have to relate in the sane way. Same stupid tubes, rules babies suffering its not fair!! I wish i could hug you right now!!!! Im glad you have those videos!! How i wish we'd done that with kael. I just only wish they were all happy ones not sad. I love you so much!! You guys are so amazing and strong!!

Emma said...

In every word you right I can feel your love for your sweet baby girl, what a blessing she is in your life but remember you are that to her as well. She is so lucky to have a Mommy and Daddy who love her so, who love her so much they have taken on this pain to let her fly, to be free...knowing that living without her here in their arms would be the hardest thing in the world to do-what a gift you gave her, just as you were given the most precious gift being her parents. I know every day feels so long, and the waiting to hold her unimaginable...but know she is happy and even more perfect now, her body isn't failing her and she is truly free and you will be with her for all eternity! Love and hugs always, Em

Alerie said...

BIG hugs and much love your way!! AND yes, someday this awful pain will be worth every second because it will be a glorious day when she is yours to hold and love on FOREVER!! What a beautiful reunion it will be!! She is and always will be yours and Ryan's daughter!!

Shelby said...

I randomly came across your blog tonight and was immediately captivated by your little girl. I couldn't stop reading. I couldn't stop crying. I was crying so hard at points that I couldn't read the words because the tears were so heavy. She sure stole my heart! I had to stop to thank you for sharing her with the world and for opening up your thoughts and feelings. I am so sorry that this happened to your sweet angel. I immediately thought of a song that I don't know if you have heard. It's called "Never Alone" by Lady Antebellum. Whenever I hear it, I think of my babies. I think you would really like it. God Bless you and I pray that you continue to find strength in God.


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