(now back to my incredible story)
Since that night that I went to the ER things have been very hard for me. I think I have expressed that in my posts. I have been struggling so much. That was almost 2 weeks ago now. During this time my pain has been more than any pain I have ever felt before, and my inability to breathe has been like nothing I have ever experienced. These 2 weeks have worn me down quite thin. Literally and figuratively. At nearly 5'7, I am now weighing in at 49.1 kg (108 lbs) and that's about 20 lbs lower than I am usually, and I am usually very thin. Emotionally I have been to the darkest place inside my soul, and though I have never and will never give up, the relentlessness of this illness is more than I ever thought I would have to deal with. I just never thought it would be this bad.
Last night, I had reached some sort of breaking point. In an hour of weakness, I started to cry and could not stop. It just all poured out of me. I cried and cried. In the middle of this release I started to pray. A deep prayer. A conversation between me and my god. A nameless, faceless god and I. At one point, on my knees, I asked for relief. I said I could not take it any more. I could not ask for these lungs to come, that was not something I am ever going to ask for, I just prayed for strength, for less pain, for the ability to handle more (if more was to come) for relief both physical and emotional, and for strength for those around me that had to endure watching me be so sick. But as this lasted a while, I think I just prayed for relief. Over and over again. I could not take it any more. It was too much. Eventually I got too tired, and fell asleep. It was like it all left me. But I had asked over and over again for help.
I woke up today (7am), and the day started off the same. Woke up, realized that I was at St.Mike's, that the Bi-pap was on my face. I seem to not get used to this each morning. I took it off and gasped for breath. It's the worst thing to have to take off your face, since when you take it off, you feel really how poorly your lungs actually work. It's suffocating. I did treatments, the nurses and other medical staff came in and out. More treatments, pills, puffers, IV's, tried to eat something, and a few more mundane things like that. After about 2-3 hours I was tired again and put my Bi-pap back on and fell asleep.
When I woke up again, my brother was already there. He works in my room all day, as his job is able to accommodate that. We basically hang out all day. Mostly I sleep and he's on his laptop. When I woke up, my lungs were clear and I was breathing well. Not well, like WOO HOO no more transplant kinda way, no, but I was not gasping like I have been for weeks now. Not in distress, that terror that has not been getting better over the last little while. I did some physio, I felt so much better. Light, I felt light. My brother noticed it. Everyone noticed it. Then we got a call from the cbc about a possible story that they might be doing on me and organ transplantation. Something a friend of ours has been trying to set up, with no avail until now. Things were just so good. The day was so good. I looked in the mirror, and I had some colour. My eyes were brighter. The best part of today was that I went for a walk with the RT up and down the hall. I used a face mask, not nose prongs, so obviously I needed a lot more oxygen, but that was something I was not able to think of doing a few days ago. A few days ago I almost passed out going to the bathroom 3 feet away from my bed. But I walked all the way to clinic and back from the ward with Brent's help. And I was ok. My legs were like jello, and I walked slowly, but what a difference.
So I enjoyed today. Every minute of it. Never take a good day for granted I said to myself, so here's my test. And I did not take it for granted. Every time I needed an extra smile I looked at the pictures of Scarlett that Jenn took a few days ago for Scarlett's 3 month, and I just gush with love. I love that baby so much, and cannot wait for my lungs to come, and for me to hold her once again.
Words have not put into any sort of perspective, this experience that I have had. It seems random and silly written down even. But I know it is not. I know, that when it all just got too hard, when I had nothing left in me to fight, (I had gone as far as I could but i knew that was it) my god gave me something to hold onto. Some relief, and a glimpse at how amazing life really is. Because it is. I look at the pictures of Scarlett and I just look at what miracle that kid is, and I can't think any other way. I don't think anyone can. The power of prayer is amazing. I felt it last night, and I believe in it. As is the god that has blessed me with the family and friends that I have, who have led me this far, and will continue to do so until that call comes. I believe it will come when it is due.
For a Scarlett smile, here is the facebook album of our little 3 month old! Enjoy. I look at them all the time for a pick me up.
http://www.facebook.com/album.php?aid=129818&id=541641274&l=b55a284651
6 comments:
Im so glad you had a good day. Prayers for many many more to come!!
xox
Amazing, that's all there is to say. You are so good about celebrating the triumphs. You are my inspiration in fighting hard, strong and well.
Plus your baby has got to be the cutest baby ever!
Hoping each day brings you some small miracles.
Ahhh! Relief! I find that when I just don't know what else I can do, sometimes surrendering (not the same as giving up!) allows us to finally release resistance and RELIEF comes!
I am so happy it has found it's way to you...
We are all SO proud of you!... I remember when I waited for a tx, I too, could never bring myself to ask for it.. I just kept picturing strength and relief.
Hugs cyster!
ps. Scarlett has the most beautiful eyelashes I've ever seen on a baby... SO CUTE!!!!
Wow that was amazing. So very uplifting. It's good when you can see God in the middle of the hellacious battle you're fighting. I'm praying for you..... And I gotta say that is the cutest little one :)
Take Care and God Bless
You may not be asking for those lungs, but I think I can speak for many others and myself when I say WE are... I hope thats ok with you <3 Gorgeous baby pictures.. thank you so much for that
So awesome Natalia! I pray for many more days that are like the good one you just had!
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