Monday, December 7, 2009

uncertain about anything

when it comes to your child's life I'm not sure if you can ever really feel peace or 100% certainty in what your decision is. when your child's future is in your hands and you have to make a decision on what kind of life they will lead it leaves you totally helpless. i cant let my makenzie go but i also cant see watching her live the life she could lead. i understand she could be the exception and the miracle but I'm scared to death to see what could happen if she wasn't the exception. i think about how long i may or may not have with makenzie and i ask myself, if i was to trach and vent her and bring her home would that be for me or for her? would i be able to give her the life she deserves to have? i will always learn from kenzie, no matter how long she is here i know i will learn from her. she has already taught me so much. her eyes tell me story's and her strength and determination to just breath inspire me. i think about life if she was to come home with us, i would treasure everyday. i would hold her and love her and give her everything i could possibly give her. if i was to let her go to heaven now, i would be setting her free. i would be giving her a voice, i would be letting her run and play and breath. there will be so much heartache either way i go. ryan and i feel like we have made a decision, we will feel peace then out of now where i will change my mind. i will freak out, hate the world, yell at God and just cry.

i should really write when i feel peace, right now, not so much. i did earlier today though.
i sit next to kenzie in that bed, she is not happy, she hates her treatments, she hates these tubes, she hates not being held. every time they come in it seems something else is wrong. something new.

i was looking at our video camera today, seeing her just a few weeks ago let alone a few months ago breaks my heart. you look back and can see the change. i can see the change in just the few weeks we have been here. my heart hurts more than i can describe. I'm scared that when she is gone i will not be able to breath. ryan and i are leaning on each other so much right now and i couldn't do this without him. my dreams of our family are changing again. I'm still in denial. i still think she will be here for forever. i shouldn't have to plan my child's death. i shouldn't have to say the day when her life will end. i have never relayed on prayer much, until now. I'm praying to God, yelling at God, crying to God. I'm asking the angels to hold my daughter. there are moments i cant comfort her. she looks at me and i can see in her eyes she is tired. i see her perfect body now and wish i could hold onto it forever. just sit and rock her. kiss her face. hold her hand. i hate knowing i wont have that much longer. i hold her hand every chance i get, i look at her fingers and put her tiny palm in mine. i stroke her arms and legs, i kiss every part of her body. on a daily basis usually many times a day i collapse over her. we cry together sometimes, sometimes i cry alone while she smiles, sometimes i cry while she looks at me like I'm crazy. i don't let the nurses change her butt, its one thing that makes me still feel like her mom. i have so little control right now.
I'm the only one that changes her gtube dressing, i paint her nails, i change her leggins, i bathe her. i hold onto anything i can. i know i will not be able to do or see many of the things mom's should be promised to do with their children such as watch them get their first tooth, crawl, clap, walk, laugh, talk or dance. I'm overjoyed i got the time i did with her. I'm glad those first 2 months were perfect. she was perfect. I'm glad that in these last 2.5 months i have been able to comfort her and help her. i know she loves me, i know she loves her daddy, i know she loves harley, i know she loves every aunt, uncle, cousin and her amazing grandparents. she loves everyone she sees. i know she would have made big changes to this world and changed many lives.


Linds said...

she already has changed a lot of lives for the better-especially mine. you are right, her spirit is so sweet and loving and kind. we can all learn from her strength.

i love you and pray for you always.

Rhonda Mozingo said...

Sweet Kendra, my friend Marla from Stolenbonbons pointed me to your blog when she posted for prayers for Kenzie. I have been praying and passing the request along to others. I want to see your entire family lots of love. You mentioned that your daughter would have made a tremendous impact on this world, sweetheart, your daughter already has. She has touched the hearts of many thru your blog and many others from your blog readers reaching out to those who are not able to read your blog. Your daughter is an inspiration to me. I read about her everyday, look at her pictures and pray. I know this is the hardest your life has ever been, you want to hold onto your daughter forever. Hold onto your memories, hold onto what she has brought into so many lives, hold onto being Kenzie's mommy always, hold onto her smile and little painted toes. Hold on sweetheart. Love to all of you. Rhonda Mozingo, Atlanta, GA

Esther said...

My heart goes out to you. I know you would never imagine you could do something like this, and I can't imagine how hard it must be. I'm praying and fasting for you all to be uplifted through this most difficult time.

The Johnson Crew said...

Treasure every moment as you are. Take hundreds of pictures. Even when that peace you felt isn't there, remember the feeling you felt. There will be days when you wonder if you did make the right decision. Remember that peace in your heart. Our hearts hurt so badly for you right now.
We will keep praying for you to be able to endure this. I am so happy to hear you and Ryan are leaning on each other, that is the most important thing right now.

Lots of hugs


Gaspegirl said...

To my dear virtual friend, I sit here in tears as I read your entry... I check everyday for the latest updates and I can hardly believe what is happening to you. I wish I could comfort you and tell you that everything will make sense to you some day. I wanted to share with you the lyrics to a song that helped me get through the really hard times... I can remember reading the words over and over again through the tears and the pain and somehow it spoke to me. I hope that you too can find comfort in knowing that Jesus has a rocking chair:

There are those who have a boy or girl, the lovely gift of God,

But sickness or a tragedy takes them from their parents arms.

Mama's wish for days gone by, Daddy's long for that lost child,

But children are not lost when you know where they are.
Jesus has a rocking chair,

And He holds that precious baby with oh such tender care.

He takes the place of Mom and Dad.

He's the greatest parent a child could have.

Don't worry about the children there.

Jesus has a rocking chair.

(((hugs))) for you Kendra and (((hugs))) for sweet Kenzie!

Devon said...

Hugs and prayers. She is an amazing child, a warrior.

When Dakin was in the hospital I would often pray for the angels to hold him since I wasn't allowed to...and they do. That I know.

Pryaing for and thinking of you guys.

Emma said...

Keep leaning on one another, the greatest gift you can give your precious daughter is love, and you love her so, so much. It is evident in all you write. Love her, love her Daddy and love yourself....she would want you to find peace and she knows you do all you do for her. Hugs from a reader who is inspired by you and your sweet little girl and all of your fighting spirits. Em

Kara Roberts said...

As a mama of a baby with many, many medical problems, I just wanted to offer hugs, prayers and support. Just know that there are people thinking about you and sweet Kenzie...

C said...

Our hearts are with you. We love your family very much. Our prayers are with you and for you each day.

Chanse and Janell said...

You are such a strong family, no matter what decision.
Thoughts/prayers and love to all of you!

GrowingRopers said...

I just happened on your blog through a blog, through a know how it goes. :)
I wish i had words to say. I am so sorry for your pain. so sorry. i wish i could do something. i wish it could make sense. I wish i could give you a hug. i''m grateful for your sharing your story. i hope it helps to let some of it out. i know Heavenly Father loves you and your family. I know he is very aware of you. even as i read your story i could feel the spirit confirming this to me. I feel it now. i'm so sorry that you are hurting so much, but i know that you will be able to continue on and have joy in your life and that your daughter will love you so much and look forward to the time when she can be with you and your husband again. life seems to make no sense sometimes, but in the big scheme it does. Heavenly father loves us so much and wants us to have joy and has made it possible to return to be with him and for our families to be together forever. YOU WILL HAVE YOUR DAUGHTER AGAIN. stay close to your husband. I have a very good friend who had a very simular situation with her 18 month old. they had to make the decision to let her go and it seemed to kill her for a time. she was eventually able to feel peace and continue on with her family and their daughter, thogh in heaven, is still very much a part of their family. i pray that you will be able to feel peace and love. im so so sorry for your pain. Heavenly Fahter has an eternal plan for us, and i think you were right when yous aid that Kenzie only needed a little time on this earth, what a perfect little girl. What a strong spirit. She loves you. She will always be your Kenzie, your little girl. and you will be with her for eternity.

SumGreater said...

You have a beautiful baby girl. I bet she loves the leggings and nail polish and most of all, her time with you.
I am a stranger to you, but I've been in shoes like yours before. Having to choose the date of your daughter's death is crummy. We had to do it 6 years ago. Our girl never got to come home from the hospital. I'm so glad your daughter has gotten to see this lovely world and have a healthy body for at least some of her life.
There aren't really words you can use to describe how horrible it feels right now, I know. But you can trust me that pain has a way of carving out our hearts so in time, we are capable of feeling greater joy and peace. It will happen for you if you let it.
I still miss my girl every day, but it's more from a place of gratitude we got her for any time at all than from grief of a life gone. Time doesn't really heal just gives us a chance to learn how to make a space for the loss and become someone newer and hopefully stronger. Our girl is our family angel now and we just look forward to seeing her again someday.
You do your best for your daughter and you will have no regrets. That knowledge brings so much peace.

Robin said...

I wish that there was a way for me to make things easier on you. There is not anything that I can do for you and there is not anything that I can say to take the pain the away. Your blogs bring me to tears everytime. I know that when it is time u will make the right decisions.

That Girl said...

Oh Kendra. Words cannot express the feelings I have in my heart for you and your precious little family. I am so sorry for what you and your sweet precious baby girl are going through. She is a precious little spirit; you can see how special she is in her eyes in every picture you have posted of her. What a precious little angel. I can't imagine being in your shoes, but please know all of you will be in our prayers. You will see her again and the angels will take care of her for you until you are able to be with her again.
Sending so much love and prayers your way.

♥ Stephan & Michelle & Ashlyn ♥ said...

I Truly hope that you and Ryan, and Kenzie find peace and happiness real soon. I hope that somehow, someway you guys can can find answers. You have, and Kenzie have touched our hearts in so many ways by all of us reading this blog, you have help me to find answers that I have been looking for a while by your blog. Kenzie is already changing the world and all of our lifes she is a angel. I look up to her, and Ryan and you guys! Thank you for that! And if theres anything I can do like Ive said before please dont be afarid to ask my email is

Tara said...

I was asked to pray for you and I will, for you and Ryan and Kenzie. What a beautiful, amazing and special little girl you have, she is a fighter and in complete love with her mama and daddy. I have gone through tonight and read your story and I am reduced to sobs, I am so sorry for the pain you are going through. I know there is nothing anyone can say to ease your pain, only I'm sorry will do and even that's not right. I will continue to pray for you for some peace Kendra.

Alerie said...

I found your blog through another blog and I have gone all the way back to right before you had your little Makenzie. I just cried and cried. My heart aches for you. I have prayed for your little family every night since I have started reading your blog. I know that nobody can say something that will take away your pain, but I pray that God will comfort you with his peace, surround you with his love and heal your hearts!! Just know that you are not alone during this, you have complete strangers thinking and praying for you daily and I am sure your family and friends are doing the same. I don't even know you and I wish I could take ALL of your pain away!! Please please please feel free to email me if you need someone to talk to or if you need ANYTHING. I really mean that. Even if you just want to email me specific prayer request. I'm sorry this is a novel from someone you don't know, but I just wish there was something I could do for you and give you a hug!! Your daughter is beautiful and perfect!! My love goes out to you and your family!!

P.S. - like everyone else has said, she has already touched so many lives....I know she has touched my life!! Makenzie is AMAZING and you and Ryan are AMAZING!! Kendra you are a wonderful mother....Makenzie is lucky she has you!! She knows you would do anything for her and that you love her more than anything!!

Alerie said...
This comment has been removed by the author.
Sherrie Martineau said...

You, Ryan and McKenzie are so wonderful together; what a wonderful blessing to have her touch so many lives. Your post today reminded me of a favorite scripture of mine,lean on it; it will touch you too.
D&C 84:88
"...I will go before your face, I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up."

McKenzie is so dear to The Lord, Of Course he will be there for her... she's his daughter too.
Enjoy each moment with that special little girl.


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