Monday, December 5, 2011

My heart is heavy. . . .

Wow. I can't even begin to sort through my emotions. I just need to write.... Write whatever I feel. What a roller coaster ride. Everything is moving to fast. I want to shout at time to just "Slow down!" I want to yell at the doctors and say, "Please, slow down!" But nothing is going to slow down. It's all going to happen at the pace it is meant to happen; any amount of time is going to be too fast.

I had an absolutely horrible night last night. I could not sleep. I would lay down, close my eyes, and I wouldn't try to think about anything. As far as I knew i wasn't thinking about anything. But then all of a sudden a whirl wind of emotions swept over me about 3-4 minutes after closing my eyes and I would just start sobbing. Uncontrollable urges to just cry. I was up and down and up and back down until about 2:00 am. I finally found Spencer's blanket and the stuffed frog he gave me, I wrapped myself in it and drifted off to sleep though it was hard. I cried myself to sleep. I was just too exhausted to remain awake.

My heart and my body are so, so broken. We haven't even made a decision about what to do yet and I'm a mess. Just the aspect that we are having to think about it at all is absolutely horrible. No one should have to go through a loss like this. No one. It's all so unreal. I KNOW I haven't felt the full extent of what is happening yet - though I feel like I have. I just know i'm going to continue to feel worse. I am experiencing an absolutely unbearable feeling of pain and being broken that is just rushing through my body, mind, heart, and soul. When I'm not at the hospital I am anxious constantly. A knot builds up in my stomach, I feel completely sick like I'm going to throw up, and then a knot builds up in my throat and the tears start to flow. I won't even be thinking about the situation necessarily. My mind will be blank... but the thought is always there. I am losing my best friend.

I have so many moments where I want to take comfort in our Heavenly Father. I want to surround myself in Him. Pray to Him, ask Him, meditate with Him. And briefly I feel a sense of peace that comes over me... but as quickly as it comes it goes away with feelings of anger and sadness that just overcome everything else. It's back and forth constantly. So many feelings.

It is so very hard to sit here, watching Spencer sleep and fighting for every single breath he takes. I am in awe of him. He is my hero. I wish I could take all the hurt and pain away from him. I wish it could be me... any one else but him. I found the love of my life and I'm not ready to let go. 6 months married to him and 3 to 4 of those months were spent in the hospital. It's so incredibly painful. We had so many plans for our future... All things we aren't going to get to experience together. I'm just so thankful for the time we did have together, even though it was short.

Everyone says this... But I want to go back and do so many things differently. I didn't want to ever be in a situation that I would say that, but I think that NO MATTER how you live your life, you will always wish something at some point in time would have been done differently.

All I have known the entire time I have lived in Utah is being with Spencer, caring for Spencer, making plans with and around Spencer. There is NO part of me that can imagine what it's going to be life not having the privilege to do that anymore. Taking care of Spencer has always been so hard. I had my good moments and bad moments; but it has been teaching me so much about myself. It's been an absolute blessing and privilege to be able to care for him. To be with him in his time of need, to be able to love him unconditionally. When I would think of things 3-5 years from now I always imagined it with Spencer. Everyone imagines it with their loved ones. It's a heavy blow when all of a sudden everything changes and you realize that in 3-5 years you won't have them around to spend time with.

We just went to bed one night... planning to do so many things the next day. Doctors appointments, going to the bank to merge our accounts, going to social security to change my name, going out to dinner and doing something FUN in Salt Lake together since we'd been in the hospital so much.... and of course we wake up the next morning with our lives completely flipped upside down. No warning. Completely changed forever.

We went through these last 3 months thinking something could be done. Always hoping and praying that a transplant would be possible. searching and searching for answers to help Spencer get better and stronger so that he could have a transplant. So he could live a new life. So many questions... so many roadblocks... so, so many set backs... I just didn't think that he would get to the point that his body just decided to give up. It's the hardest thing, I'm sure as I am not IN this situation myself, when your body gives up but your mind and spirit want to continue fighting. It's just not fair. In absolutely no aspect is this disease fair.

This year as been especially hard on the CF community. I have grown close to so many CFers since Spencer has gotten sick and I have seen the true colors and the ugliness that this disease is. I've seen so many CFers who have been mostly healthy get very ill and hospitalized much more frequently than they are used to. I've heard of far too many that have passed away this year. When we were in the MICU, we were there during two CFers final days. It was so hard to see the families grieve the loss, knowing that I would be facing the same thing at some point. Not only has our clinic lost so many, I know there have been many losses in the CF community as a whole. One life is just too many and it pains me to know that Spencer is not going to be an exception. Even if transplant was possible this was inevitable. It's the disease.... It's what happens.

I just don't know how to handle this situation. No one knows how. You just go through it like you're in someones else's shoes looking in. You take things as they come... You cry, you scream, you feel the most agonizing pain one can feel - a truly broken heart. You wonder how life could possibly continue on when you're losing the one you love.

But the world keeps spinning on around you.... taking no notice to the loss that you're feeling.


  1. CF stole my sister on October 27, less than 6 weeks ago. She was only 20. I am so sorry for the pain that you are feeling right now. Only 6 weeks into it I can't tell you that it gets easier or better. I can only tell you that watching her suffer for so long and knowing that she's breathing easy now is about the only "comfort" I get. I miss her more than I can say. Sending prayers and thoughts your way.

  2. Nikki,

    Sarah Jones sent out the link to your blog. I have 2 children with CF - Josiah (10) and Kathryn (9). I just wanted to let you know we'll be carrying you through this in prayer. You are heard, you are seen, you are loved.

    ~ Melanie McElhinney