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Thursday, October 10, 2013

Voice your opinion

I am about to get real personal here. I know this decision is for Jim and I to make. It's ours alone, we have to bear it. But I have 24 hours to make a life and death decision for my daughter, so along with heavy Praying, I am reaching out to YOU. I will read all comments, and do with them what I need to do. So please respond, even if that means emailing me privately. ( FiveStarsForSarah@live.com).

Kira is going back into surgery tomorrow morning to have both of her titanium rods removed, due to an infection in her back from the last surgery ( 1 month ago.) This makes 3 surgeries in 3.5 months. Jim does not want to put the rods back in. He says we made the wrong choice, and we put her through all of this pain for our own selfish reason, which was to keep her longer. I agree with him. We did do it to keep her longer. Without the surgery, her spine would have continued to squish her lung, which would eventually take her life. It would not be "painful" for her to pass like that. Her oxygen levels would slowly be less and less until her body just cannot get enough oxygen to keep her stabilized and she would become hypoxic and go to "sleep". The surgeries however are painful. I knew this is what I had to put on my imaginary scale before the initial surgery, and see which one I am going to go with. Do the surgeries, cause her pain during recovery periods and keep her longer, or do not do them, and let "nature" take it's course and lose my girl earlier than I want. I NEVER want. What I want is for her to be comfy and feel all of her lovins until she is an old disabled lady.

If we choose to stop, stop all of the surgeries, not put the rods back in, and just close her back up for good, I need to know before we go in tomorrow morning. If we stop, then the antibiotic cement will not go inside of her. He will just take everything out, and suture her up.

If we choose to continue, then he will put the cement in her and she will go back in 3 months to have the "big" surgery all over again.

My very dear friend Shannon is Praying hard for me to get a sign. I believe. I need that sign, because time is a'tickin and i'm lost.

16 comments:

Aleata Williams said...

Sarah
This would be a difficult decision for any parent to make, but ultimately God makes the final decision.. I will send some prayers up for you and the Beauty Queen. I say go with whatever gives you the most peace. Peace equals the "right" answer.

Jinx~Troublex3 said...

((Hugs)) Fainty ...I kept the first message from her birth on my phone for years. Maybe I am a wimp, not as strong as others..YOU specifically... but I agree with whatever will be less painful in the long run. Will the rods need to be replaced, or surgery every year or two to lengthen?

Either way, keeping you in my prayers.

Kira's Mommy said...

Jinx.. what did the message say? Yes, the rods need to be lengthened every 4-6 months. That would mean putting her under and making a small incision.

Kira's Mommy said...

Thanks Aleata. <3

belinda payne said...

Sarah I'm so sorry your baby girl is having complications. I could not imagine what you and Jim have went through over the years. I hope this helps you. Right after Katie passed away a friend of mine made the comment: too bad she didn't get cancer then you would of had time to spend with her. My first thought was No I'm glad she went instantly, why would I want to see my child suffer for years just to be able to see her and be selfish. Give it to our lord and he will help you with your decision. I'll be praying for you all.

Anonymous said...

Oh, sweetie, I can only imagine what you and Jim are going through. What is Kira telling you? I'm sure you and she communicate every day, in your own special way. I will pray for you and Jim to receive the answer you need. Open your heart and God will guide you. Tamara

Anonymous said...

All I know is ... she has been blessed with the very best mother, father, and brothers I have ever seen. You are all truly amazing. Still, you manage to be positive and loving to all who know you. You are the person we all strive to be. You are the salt of the earth. Whatever you decide, God is by your side. Xoxo

Connie said...

You and Jim are incredible parents and what ever decision you choose will be the right one for you and for Kira. She has been such a strong fighter and has beaten all the odds against her! I remember you telling me they didn't expect her to live past 2yrs old and she is now 8 1/2! Can you say amazing?! I think my biggest concern would be her level of pain. Can it be managed afterwards to where she is comfortable? Will you have to go through all this again and remove the rods again? I honestly can't tell you what to do but I think you know or will know what to do when the time comes. HUGS Sarah and I am so sorry its coming down to this.

Anonymous said...

Cousin I don't know how any parent could ever decide something like this. I am a believer of when it's time it's time. Our lives are already planned for us. So whatever Earthly decisions we make are the ones we were meant to make. You could do the surgery over again and be right back in the same place you are now or you can do the surgery and she live to be the old lady you want her to be. You could decide not to do the surgery and she pass peacefully soon after or she could still live to be an old lady. We don't know what will happen. So whatever you decide is right. Be content in what you decide. Be at peace no matter what you decide. Pray, ask for prayers. I will pray that you will get a clear answer so you can be at peace. I will pray that you are able to rest tonight and that Kira will endure as little pain as possible no matter what you decide. Hugs and prayers Cousin. Love Lana

Robyn said...

Sarah my heart breaks for you and Jim. I know you well enough to know you are in no way looking for sympathy though. I cannot even begin to imagine how hard this decision will be for the two of you. I truly believe that God only passes you the cards that you can play. Whatever choice you make it will be yours and yours alone. In the end no one will judge you for the choice you make. This includes you not second guessing your decision either. Whatever you decide will be the right choice for you. Now I know without a doubt that I would have had the first surgery. As a Mom I would do anything to save one of my kids. That being said, I think that if the pain is unbearable for her, I'm not sure that I could watch her have to go through it all over again. Sometimes the hardest thing and the right thing are the same. You are such an inspiration to so many people. There is so much love in my heart for you and the person you are. The love you give so openly and freely to others is amazing! You will know what to do when the time comes. I pray that you will find peace in your decision whatever you decide. I love you and am thinking about you <3

Aray said...

Praying, such a hard decision.

Anonymous said...

If the roles were reversed.....what would your wish be to your loved ones regarding your care. I wish I could offer you more then a breaking heart from another parent. Be strong, make your decision with a loving heart and all will be right no matter what you decide.
T

Joshua Roberts said...

If my daughter Savannah or Abigail were in this situation I would want to keep trying until all possibilities were exhausted. I will pray for your little bundle of joy that no matter which path is chosen that she can feel the love of Jesus and that He would comfort her in this time of pain.

Anonymous said...

No matter what decision you make. . . . . .
It will be made with total love; a love that will forever live.
It will be the hardest decision you will ever have to make.
You will always know in your heart you did the very best you could.
You will always know that God was with you guiding you the entire way.
You will always know that you made the best decision for Kira.
You will always know how blessed you and all of us tare to have Kira.
Kira will always be with us; a part of our family.
God bless you all.

Anonymous said...

I have been sobbing and praying on this all night, my prayers are with you all and I can't imagine what you are going through. That said, as much as sincerely hate to day it, I think it's time to pull the rods out, tell Kira how much you love her and that you will all be sad but will be okay, and let God take the reigns.

Sweet Kira's life was extended until you were ready to say goodbye, and as horrible as it may feel, it may be time to do just that. Kira will be okay...she's moving on to somewhere wonderful, pain-free and safe. Let God take over now that you have done everything you could for her.

You have my prayers and I wish all of you the very, very best of peace and comfort.

anonymous said...

I don't know you personally but I think the girl already suffered too much and you have tried everything you need to do in order to save her. The question is, if you decide to continue this lengthy treatment, will that give her a chance to live a NORMAL life? Can she walk, go to school, enjoy her teenage years?
" There are ways that seems right to men but in the end it will only lead to destruction".
I will keep you in my prayers and may God provide you the wisdom to make the right decision.