It's been a whirl wind of emotions and it can change with the snap of a finger.
I just wanted to kind of type out my feelings tonight. I think I have ultimately accepted, as much as one will be able to, that Spencer is nearing his last few days and that he will be dying soon. I've had a couple moments today that I had a hard time consoling myself, but I think those moments were needed. I needed to get my feelings out and stop staying so dang strong. Thankfully I was able to cuddle up right next to Spencer on the bed for about an hour and cry, tell him how much I love him, and pray with him. It was really nice to be able to do that. No worries about anyone coming in. Just our time. It's been nice having minimal visitors today. I can tell i've been needing this time, as I knew.
I was really happy when Spencer woke up enough to converse during his bath and trach care. And then I was very, very thankful that he stayed awake long enough to have a conversation with me. It meant so much. We didn't talk about much - and basically talked about the task at hand. But just a conversation is all I needed. I've told him countless times things that I need him to hear from me. How much I love him, how proud I am of him, the difference he's made... etc etc etc. He's probably tired of hearing it ;-) We've had some very special conversations and of course I wish it didn't all have to end.
I'm trying so hard to comfort myself in the fact that I WILL get to see him again. At some point we will be reunited and love & live for all eternity. It isn't goodbye at all. I will see him again. I also know that he will be with me. In the moments we've shared he's promised me that.
I'm have a very strange feeling. I just feel at peace with the situation. Of course I don't WANT this to happen, and I am going to be absolutely even more heart broken than I already am when he passes away... but I just feel okay with it. I know it has to happen at some point, with that point being pretty soon. I don't want to see him in pain anymore. I don't want to see him continue to fight to breathe. It just hurts me to see him that way and I want to go on with my life remembering him how we all know him. The loving, fun, kind, etc etc etc Spencer that we all know and LOVE. A piece of me will always be missing. He holds my heart. I will miss SO many things about him, about our relationship, about our love.... but something is telling me that everything will be okay. Things will work out.
It's pretty hard for me to see other people come into the room and break down. To be upset. I know they are just now seeing him and accepting things. Learning and understanding what really is going to happen. Saying goodbye... But it's kind of different to see everyone crying when I'm not. When I'm the one being strong. I understand why though, but it's just kind of weird....
The part that I am really scared of and I don't think I can handle is what happens after. The funeral.... The viewing... the planning. I don't want to see him dead. I want to see him alive. Remember him alive. I know I will need the closure... but the thought of seeing him when he's gone is really hurting me. That's NOT how I want to remember him. I'm so scared he won't look like the Spencer I know and remember. I am having a really hard time thinking about I guess just everyone else. I know this is hard on so many people and it is just my nature to care about everyone. I don't want to see people upset. I don't want to see other people hurting. I just want to remember Spencer how he was. The life that he had. I want a CELEBRATION OF LIFE not a mourning of death type thing.
I want everyone to wear something red to his funeral <3 Whether it be a red shirt, bracelet, necklace, shoes... Just something red. It's his favorite color and I want it to be bright... not gloomy with black.
Of course I'm scared and worried about what life will be like without him. I'm terrified of the grieving process. In a way I've already started it, and did awhile ago. I've known this was going to happen from day one. This was inevitable. I didn't know how it would happen or when... but I know I would lose him some day. When he was admitted into the ICU 3 months ago, I had a feeling that might be the last time I saw him. But it really hit me about 2-3 weeks ago that I just didn't think he was going to get any better. Of course I was holding out hope and really trying to be positive about everything. But I just had a feeling things weren't going in the right direction - probably when he got that nasty lung infection. =/ Spencer told me a few days ago that he knew about a week before we were told that there wasn't anything they could do that he just knew he was nearing his time. He said he had a lot of time to think and pray about everything and just knew that it was probably going to happen soon. He was right. He knew. I'm glad he was able to prepare himself, though.
I just needed to get some of my thoughts out. Not sure what the next step will be. We're just going to continue to keep him comfortable tonight and talk about things tomorrow morning. We can move at the pace that we want. There is no rush for anything. It's really hard because of the fact that he is on life support... His body could keep fighting for a pretty long time. It isn't as simple as him "just passing away". We have to make the choice if we want his body to tell us when it's ready to go... or to get him as comfortable as possible, surround him with love, and reassure him that it will be okay, and then to disconnect the ventilator and let his body do the rest. It's a pretty tough situation to be able to/burdened to take the situation into your own hands. Honestly though, ultimately it's up to our Heavenly Father. It's in His hands. He will take him when He is ready for him and He will help guide us along the way. <3 <3