Saturday, December 5, 2009

alone day...

today was a very hard day yet a very needed day. ryan and i spent it alone together with kenzie + doctors and nurses. we decided we would 'try on' our decisions today. for part of the day we would live like we made one choice, we would plan things, talk about what we would do next and how it would effect our lives. the other part of the day we talked about the other decision. it was full of tears. our life has become something we never thought would ever happen. i never thought we would be making these choices. i look at my daughter and struggle with what to do. i think i would do anything to keep her here in my arms. to keep her happy as much as possible and to give her the best life i possibly could. i just think, I'm not sure that's enough. my 4 month old cant breath on her own, she is at the best she will be physically. we are not sure how fast but all her functions will go. every 3 hrs. or so, she will hate us. we will have to do cpt and cough assist and throughout the day suck out her secretions. will i be able to give her enough happiness to over rule those moments? my daughter will not learn to crawl or walk, she will never dance. would i be okay to sit by knowing she would never be able to do that? kenzie may only be in our lives for a couple years- during that time, would it benefit her to be here on this earth or would she be better in heaven? if i choose to take her home with ryan and i trach and vented would that be selfish of me? would i be keeping her from being free in heaven? we talked to makenzie today- this girl is hard to read sometimes. i kept trying to see what her eyes were telling me but couldn't quite figure it out. i have prayed to God to help me, i feel a little more peace with one decision but not enough to make that decision. I'm not ready. we are not ready. to end our day, ryan and i went out to dinner during the time we get kicked out of the room for shift change. just a quick run to chillis. i haven't left the hospital other than thanksgiving since kenzie got here. it was weird to go out to eat without her. while sitting there watching all those other families with kids my heart broke. life has stopped for ryan and i but the world continues to go on. we were ready to have a family, to have our daughter with us wherever we go. now that she wont be able to do that- i want to scream and hit someone. she is our pride and joy, she was suppose to be with us forever. i am still not understanding why we are going through this. i don't understand why i cant have what most other people have and that's a healthy child. i hate that kenzie has to be in this position. we have talked to a few amazing people the last little while. they are going through similar situations. i wish i could hug them. they are all so strong, so empowering. i don't feel strong, i feel weak and i feel I'm going to crumble. we have so many choices to make and although everyone says there is no rush, there is a little rush because we have other things we need to get in order sooner rather than later but they all depend on our decision. my heart hurts so bad.

kenzie has had a pretty good day. she has been really upset a couple times and they had to give her some medication. earlier this evening she threw up twice on me, after we go her back in bed she did it again. it wouldn't seem like a big deal but when she got her gtube she also got a nissen which prevents any throwing up or reflux. they didn't know why she was throwing up but she is doing fine now so they are not worried. if i was at home and that happened, i probably would have passed out. i get so nervous about everything, every noise, every movement or non movement.
kenz got another bath today. hooray. she loved it again. she is so beautiful.

17 comments:

Anonymous said...

I am glad to hear how you day all together has turned out. I have thought about you all day long and prayed you could find some kind of peace. I miss coming up. I love all 3 of you very very much. I am proud of you, you are amazing. love mom

Devon said...

***Hugs*** to you. Thinking of you guys tonight.

Country Mouse said...

To read your story, makes me cry. Life can be so hard, so hard for us to understand why we go through some of the things we do, why your little baby is going through this...so hard. Have faith in God, pray for understanding and strength. My heart goes out to both of you...God bless you both. You will be in my prayers.

The Johnson Crew said...

Last night we went to bed talking about you and this morning woke up talking about you. You have the strength you need it is just hard to dig out with all the emotions overwhelming you right now.
We are praying that you will feel at peace when you make your decisions. It is amazing how quickly you can love someone without knowing them.
You are in our thoughts and prayers.
Give that little angel hugs for us.
Love the Johnson's

Kristine said...

I just found your blog. I am SO sorry that your gorgeous little girl has to go through any of this. She is just beautiful and I can tell how much you love her. This must be so, so hard. I am in tears over the decisions you are being forced to make. My little girl was very, very sick with meningitis at 18 days old. We almost lost her. I know what it's like to be in the PICU and to have a little one's life in balance. NOT the same, I know.

I also immediately thought of another family battling SMA. I have been reading this blog for a long time now. Gwendolyn's parents are virtual experts in SMA and I know they would be happy to talk to you and your husband and offer up some suggestions. Here is a link their SMA page. If you click on "home" it'll take you to their blog. Gwendolyn has SMA type 1. I'm thinking that you have probably already heard of them, but just in case...here it is.

http://www.gwendolynstrong.com/2009/02/sma.html

I'll be praying for Kenzie (and mommy and daddy) every day.

ML said...

I haven't looked at blogs for awhile, so I just read yours. I'm so sorry for everything you're going through. You're family pictures with your little girl are beautiful. I can't even imagine having to make such heart wrenching decisions. You are in our thoughts and prayers.

Holly said...

You don't know me, but I found your blog from a friend of a friend. I just want you to know that you, Ryan, and Makenzie are in my family's prayers.We will pray every day for you, and hope that you can find the strength to make a decision that will give you peace. God Bless!

Doreen G. said...

I'm glad you had the day together. It was an excellent idea. You both need time to reflect and talk together. Please let me know if I can do ANYTHING for either of you! As always, our thoughts and prayers are with you!

Stephanie said...

Dear Kendra,
A friend of yours emailed me about you. She sent me a link to your blog. I have read some of your recent posts. I have spent a few days in similar shoes facing similar decisions. I have a few thoughts for you.

FIrst, I know how it feels to feel so weak. I know how hard it is to imagine that this is all real. You are in the middle of what was for me the very hardest part. I had such a very hard time in the hospital waiting for some sign as to what we should do - praying for a miracle - wishing I would wake from the nightmare of my reality.

I can't tell you which decision is right for you and your daughter. But I can tell you that you will want to remember every moment you spent with her. One day you will even treasure these excruciating moments because they will be moments you spent with her.

When Jon and I made the decision to remove Camille's vent, we felt peace through and above our despair. We hated that this was the right choice for us. But we also were grateful to have a clear answer. I would encourage you to seek the peace that comes from a clear answer because later you will have to rely on the memory of that peace to get you through the adversary's doubting thorny times.

Last, I just want you to know that you are strong enough - because the Savior will be carrying you even when you are in too much pain to feel or appreciate his embrace. He will help you breathe and get out of bed day after day until you can do those things again without effort. He will let you scream and shout the anger out. Just try not to take your anger out on those who can most help you through the pain (spouse, family, God). I like to direct mine at space and the universe and reality in general.

If you want, feel free to email me at stephaniewaite at gmail dot com. I will be praying for you and yours - that you may be led by the Spirit in what you should do and when.

Anonymous said...

I just came to your blog and I want to tell you how terribly sorry I am and that what Stephanie wrote is very true. Just a bit of our background and then if you want to talk I am here for you. We had our second daughter on 5 October 2009 and knew something was wrong. A week later she was diagnosed with SMA. She spent her whole life in the NICU surrounded by the most loving nurses, dr., and us her parents. She went to be with Jesus on 27 October 2009 just 3 weeks 1 day old. I just read this post and haven't read back to see exactly where you are in your SMA struggle but just reading what you wrote brought back all the memories of the decisions that we just made. They are hard decisions but you just have to pray about them and find that peace that only God can bring. He will give you enough strength for today. Like I said I haven't read past this current post but I wish I was close enough to hug you and walk with you in person through this difficult time. I'll stop now because I could ramble a long time!! I will be glad to talk to you at any time if you need someone who has just gone through this. My email is
mollyiteach@hotmail.com
I also have a blog that chronicles our journey. You just have to go to the archived section for 5 October and read about our sweet June.
http://bootsieandbull.blogspot.com
If you email me I'll send my phone number too. God loves you and you will get through this.
molly

Anonymous said...

I am another one of those people that just happened to come across your blog. I don't know you and you don't know me but I am praying for you and your precious baby girl. Much love, a friend in California.

Anonymous said...

oh kendra... you ARE strong. you have to make the choice that is right for you and ryan and kenzie. I can't even fathom how you feel and all your emotions at this hard time and im not going to try to say I understand. But im thinking about you three everyday. well im thinking about our whole family.... love to you all. Aubrey

The Solts said...

I am so sorry that you and your family are going through such hard times. I have met your husband a few times and you at totems a few years ago. My husband is Andy Solt. If you need anything at all please let us know.

Darren and Jody said...

Hi,
I think it's really weird how I found your blog but I started to read your story and realized your daughter has SMA. My son was diagnosed with SMA at 6 wks I know that SMARD is a little diff but I understand. I have been through the same as you over a year ago PICU told me my son would never get off the vent when he was 4 months and to let him go. Here we are over a year later. not that it's any of my buisness but, when we were having to decide whether to trach and vent we would do it as long as he was still happy and had quality of life even if it gave us one extra month with our son because with sma it's an eternity. I was going to tell you to go to my blog and from there you could read Devon's blog or about Tabitha under sma friends. I did notice Devon did comment. Just so you know you have one of the best SMA doctors in the world Dr.Swoboda. My son is still alive because of her. Good luck

Cass said...

I found your blog from Kristine, who commented at the Gwendolyn Strong blog. My twins weren't diagnosed until 16 months, so our battle is being fought in a little different way. But I want to put you in touch with another family here in Phoenix whose daughter was diagnosed at 4 weeks. Scarlett is about 4-5 months old now. http://www.scarlettshope.com/ Also, there is a huge community of us on SMA Space and Facebook. http://smaspace.ning.com/ You are not alone, and neither is your sweet baby. ((hugs))

Summer said...

Kendra, you are such a strength and inspiration to me. I know what you are going through is not easy, I can't even imagine, but I pray for you Ryan, and your sweet little Kenzie every day. I hope that you are able to make the most difficult decision a parent could have to make and that you have peace with that decision. I think about you often and pray for you always.

LL's Creations said...

A friend asked me to pray for you and your family and I just read your blog although it was so hard through all the tears in my eyes and down my face. I have young children and I can't imagine going through any of this. I have said many prayers for your family and your beautiful little girl. I know you will make the right decision for your family and I will be thinking of you and wishing you all the strength in the world. The pictures of you daughter are just gorgeous, she is a beautiful angel.

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