Monday, November 14, 2016

remember today- Elsa

Some of you may know this, but last month my daughter was in the hospital for 17 days. She contracted the EBV virus and due to the fact that she is immune compromised because of daily medication she takes to manage her Crohn's disease, and it being her first time ever catching this, she had an extremely rare and serious issue occur; her immune system essentially crashed and the EBV virus invaded her bone marrow and destroyed most of her red and white blood cells and recirculated the virus throughout her body continually for days. This is generally something that occurs after a bone-marrow transplant, and for it to happen to her, was a complete fluke. It is quite serious. Thankfully she came out of it with the best-case scenario at the time, but there are still complications and additional auto-immune issues that could arise, not to mention what the long-term health effects will be, especially if she is exposed again and her body decides to react in a similar matter. This virus will always be in her T-cells (I think that's the correct cell). I can sort of wrap my brain around it, but it's complicated. She has a long way to healing, and we have to watch her closely. We cannot even begin to address the potential issue of her Crohn's flaring at this time either, and she is completely unmedicated to allow her body to rest, which is ironic since her body is doing nothing but continually attacking itself. *sigh*.

We have been through a lot medically with her throughout her life, but this experience has been by far the worst for her and I have never felt so despondent and hopeless. It's the worst thing to watch your child struggle and to be quite frank, try to give up. She told me many times during this past month that she has had enough and wanted it all to end (she is not suicidal in any form. She attends therapy every three weeks and has for over 6 years. She is well equipped with coping skills and understanding emotions and how to process and speak what she is feeling). I am going to be brutally honest now; I actually completely understood her desire. For the first time ever, I truly understood in a way I never imagined I could or would. Of course I told her she had to continue to fight and rise above this, but I also felt such a peace about not wanting to watch your loved one struggle in agony. It's the cold hard truth, but I have faith that we will get though this. After all, this is the journey that God has led us to and all we can do is trust Him.

Oh, and I forgot to mention that she had a major Spinal Fusion surgery on September 29th, which she is also still recovering from. The surgery had nothing to do with the above (we know this because we were monitoring her labs and watching her closely), but she has been dealt a double whammy.

It's never easy to document the struggles of life, but there is always a ray of sunshine in the mix, you just have to find it. Some are readily visible, like these photos, and others are not so easy to uncover, but they are there.

I am sorry. You are here to see my take on the newest sketch from The Memory Nest- Make it Monday No. 76. :)  I just felt compelled to share a bit of the struggle that we are facing now, and in doing so it is a part of the healing process.

I apologize in advance about the horrible quality of these photos. Ashlyn's hospital room was kept dark and I did not use a flash. (Not to mention I was crying with joy and wasn't concerned with the quality of any photos.) Thankfully an online friend lightened them up for me after I posted them on fb, so I used her enhanced images. <3 nbsp="" p="">



I used the October Felicity Jane kit to create this layout. 







4 comments:

  1. You all have been in my prayers daily, and I have been reading your updates on FB. I am so sorry she (and all of you) have been going through all of this. I am glad you were able to scrap a happy moment from all of this! I just loveeeeeeee it!!!!!!!!!!

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  2. And she is smiling in the photo too! I think you are mega brave to scrap and share all this! How hard this must be for you all, life is unbelievably cruel at times, my thoughts and best wishes are with you.

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  3. Thanks for sharing! I am so sorry for your daughter's struggles but this is a wonderful layout! Glad she was able to find some happy moments during her ordeal. I'm wishing the best for both her and you! ((HUGS))

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  4. Thanks for sharing! Such a wonderful layout!!
    My prayers,love & hugs go out to you & your daughter!!
    Have a wonderful day,
    Migdalia
    Crafting with Creative M

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I thank you so much for your kind comments! :) Have a beautiful day.