Ahh my all time favorite song and seems perfect for a day like today.
Here I sit at my beautiful desk looking out to the ocean and it is breathtaking. The water is rolling in tremendous easy swells, crashing in the distance against Egg Rock, the sky is just bright enough to see the hundreds of color variations in the ocean below. I love it.
I'll miss living here. I do love it. What I love more is my family. My husband stubborn and strong beyond belief, my wonderful daughter beautiful, kind, creative, expressive and so amazingly resilient. I love them so much more than any place or any thing. I could be happy with them anywhere.
So this morning I am busying myself, I have a house to clean and pack, errands to run and parties to plan. Today I am waiting to hear if we get the apartment down the street from here.
Last year this time, our lives were soooooooo very different. I hold onto the same Faith that got me through those tough times. I have Faith that God is laying things out for me, watching and loving me. So maybe we'll get this place and maybe we won't but whatever the case may be we'll be o.k.
No scratch that....we'll be living, a wonderful, happy, healthy life and we'll be in love.
So last night at like 10:30 Shawn see's on his cell he missed a call. It's J our landlord. (Who is actually the dgtr of the owner) She tells Shawn whatever. I was sitting in the living room putting finishing touches on a seaglass mosaic and he's standing there doing alot of "what?", "why" and "when". I knew something was wrong. You could feel the change in the air. He hung up came over and delivered the news. "We have to move" I called her right back and asked her what was going on and she said the same. She refused to give and explanation, said that it was NOT personal, strictly business. I said what business? You want more money? Nope. I said I felt like we deserved the courtesy of at least an explanation. She refused asked me to respect her families privacy. Oh fuck you.
I know that it has to be her moving back here. We never met her, she was already out in California with her parents. She is a firefighter here in Swampscott, her husband is in the service and is overseas. I just think that she is moving back and just won't say so.
What can I do? I'm devastated. Anyone who knows me knows we LOVE this place. Anyone who knows this place KNOW why.
I'm going to try very hard to make this o.k. I can't handle another big NEGATIVE in my life. I am supposed to move forward as if I chose this path.
OK. I am grateful that we have had this beautiful place to live for the past year, that Shawn has had a safe clean environment in which to recover in, we have all made good friends here and loads of good memories.
But God damn if I knew her plan was to come back in a year I never would have signed on. Grrrrr.
Ugh. I am pretty worried about Shawn today, he is DEVASTATED. There is nothing worse than seeing that look on his face. But alas at least I am looking at a healthy pink gorgeous alive face,right?
So...right this minute I am thankful for this amazing wonderful healthy and happy year we have had. I look forward to finding someplace even more perfect!!!!!
So here I am today feeling better. I have kicked my Wellbutrin to the curb for now along with all other prescription meds. I have returned to the basics. I'm back to good old St. Johns Wort. Today marks a full week on it and I feel oh so much better. Even with the hormonal swing of my period I've done pretty good, if I do say so myself.
My Father is sick. My brother went down to see him last week and reports back that he is weaker and even more frail looking than he was a few months ago. Peter said Dad was super short of breath and coughing alot. Deja vu perhaps. Eek. He was transfused with 3 units packed red blood cells so that should help. I'm working up my courage to call him. I have to see him soon. I hate the idea of knowing that he is sick. He is. Cancer what a fucker. Considering that he was diagnosed last October primary site lung with mets to the brain, liver, groin he is lucky to be here. I wish he would come back home. What is he doing down there? What's going to happen when he is too sick to take care of himself?
My husband is staying with his Uncle Carl for a couple of days while his wife is away on business. Uncle Carl just had brain surgery last week to remove a tumor, he's doing great, looks a bit like a screwy baseball but amazing that he's up and around already. That poor bastard has been through two very nasty bouts with cancer of the tongue and throat already. Time for a break.
Shawn is doing awesome. not listening to me much but I guess that is nothing new.
I love the Fall my favorite season I think. November is our lucky month!!! Sara Lou and Shawn both born in November and of course his transplant on Thanksgiving. So very much to be thankful for.
Well this is a super quick post to say that I had about ten full days where my head was quiet. So quiet and so happy. Then I sort of started sliding down. I'm up today, not quiet but not all bad either. I am hungry and tired and restless and disorganized. I feel fat
Well after reading some of my fellow bloggers blogs I feel like I have been slacking.
To cut myself some slack I'll say that I believe part of the problem is that I try to incorporate too many facets of my life into one blog. Is that possible? I don't know.
I get so wrapped up in my husband that I forget that sometimes it's o.k. for me to be about me. I forget that I am a separate person. I am more than his nurse, his wife, his laundress, his cook, his lover. I am me too.
One of my fellow bloggers and fellow wife to a CF'er has two blogs. One for her CF life and one for her. I really understand why now.
So although I'm not ready to start yet another blog I'll settle for trying to balance it out.
Today it's about me.
I have been making a VERY conscious EFFORT to be more about me but I have to tell you it's fucking hard. It's hard. Harder than you can imagine. My head is not always kind to me, it has been my enemy as much as it has been my friend but the distraction of him also let me blame it on him.
I fell apart because of him. I fragmented into a million tiny pieces because of him. I lost myself because of him. I am the way I am because of him. Right? After-all the stress of having a constantly dying partner is enough to drive anyone crazy.
But for me it's just not true. Yes, yes, yes having that stress maybe exacerbated my own illness but my illness is my own.
Now that I think about it I really held it together pretty well all things considered. We both did.
Funny how entangled our beings became for me. He's well now but I am still struggling in my mind. I don't spend my days crying like I used to when he was sick sick sick but I see now that my mind is still going to try and make me feel like shit and I am fighting it everyday.
I am doing things on my own and it makes me feel so proud of myself. I have spent my life afraid of so much. Afraid of being unwanted, unloved, afraid of being stolen, killed, lost. Afraid of nothing and everything all at once. Man how unkind my mind has been to me.
But how wonderful it has been as well. Two minds. Weird I never really looked at it like that but that's it. Two minds. Two minds. Hmm I think I've had an epiphany of sorts. yuck what does that mean two minds? I don't know and right this second I am choosing to tell my crappy mind to shut the fuck up. Oh it's on, man is it ever. I'm going upstairs and I am going to kick my crazy minds ass. I am going to sit at my beautiful desk, look out the window at my beautiful view, and let my creative juices flow. I am going to create something beautiful. I am going to do it without the input from my crappy mind. Here goes nothing!!!!!!!!!!!!!!!!!!!
Just a quick update to let anyone who reads this know that I have not killed my husband and things are beautiful once again. Yesterday we went for lunch and late last night we took a ride out to the Marblehead Lighthouse and had a long talk. He agreed that he has been a bit self-centered and is going to work on that. I agreed that my insecurity is rearing it's ugly head. I didn't budge on some things. I refuse to be treated crappy.
So today is gorgeous out, I feel awesome. All is well with my world.
Late late tonight we are heading to Buffalo to pick up the Trans Am! Even I'm getting excited. I also heard through the grapevine that there may be a jet-ski in our future. I am getting a Kayak before he gets another toy though!!!
I feel like Shawn and I are growing apart. There I've said it. I hate it, it breaks my heart but he's changed. I keep thinking it's an adjustment to him not "needing" me anymore but it's more than that. I'm not number one in Shawn's life anymore and neither is Sara. Shawn is number one. When push comes to shove his happiness is what matters to him. I think he loves me but not the way he used to. Now Shawn is pursuing his own life. He doesn't agree with me. He thinks it's not true and that Sara and I are just being overly sensitive. I am basing my feelings on what he does not what he says.
Watching Shawn be able to breathe again has been the most wonderful gift in the world. Shawn being able to be a regular guy in so many ways makes me happier than you could ever know. I love that he can DO everything now, shoot the shit, play ball, ride his bike, go on outings with his buddies, talk shop or whatever the hell they talk about but ugh.
I tell people that we have done more this summer than we have done in years and it is totally true, we are making up for stolen time. Unfortunately Shawn is also trying to cram years worth of missed out guy stuff into months. I have been totally supportive in him going out with the guys but he's gone overboard. At every opportunity he takes off on his bike to go for rides, he spent the day in Laconia during bike week, he goes to more fucking car shows with the guys than I ever knew existed, he hangs out at his buddies shop everyday. He tells me he's working on his truck and I know he does do work on it. He's been able to do alot of repair work to his truck there that would have cost us a fortune if he had to send it out. I also know that alot of the time he spends down there is just getting away from us.
Everything sort of came to a head over the weekend. Friday afternoon he called to tell me he was at the shop working on his truck which was fine. I don't call him or nag him. He came home 5 hrs later hammered. Apparently someone who runs a "casino night" outfit brought over a poker table, chips, cards etc along with two beer balls (whatever the hell that is). I was a upset that he had been gone, I was upset that he never called to say "Look, the guys are playing some cards, it's Friday night do you mind if I hang out?" That's all I needed. I would have felt like he took me into consideration, I would have without a doubt said yes. But he didn't as far as I knew he was "working on the truck". Sat morning he took off to a car show with his friend, D. Sara and I went out for breakfast, then we picked up D's daughter and I dropped them both off at a birthday party. Mind you if I had not offered to take his dgtr to the party he would not have been able to go to the car show. So even though I was pissed about Friday night I still wanted him to go. I didn't want to hold him back. He went. We had a clambake to go to at 6. The guys were running late. D agreed to pick up the girls and the drop them off here to hang out. Which he did. Probably more to get Shawn out of any hot water than to do me a favor. We went to the clambake, didn't really hang out together, went our seperate ways mingling. Which I didn't mind. I don't need him to hold my hand, I felt good, I knew a lot of the people there so it was not a problem. At some point he mentioned that there was yet another car show he wanted to go to with D but it was Sunday morning. He said they would be going early and that it would not be a problem. (Mind you this was a show that I had looked up on the net months ago but at that time he blew it off) Then we came home to a block party. Again we sort of did our own thing but it was fine, everyone had a good time even though the cops were there five times for noise issues. There was a live band. I chatted with everyone, had God only knows how many Margaritas and Shawn put me to bed at the end of the night. It was a good night.
Sunday was my Nana's 88th birthday we were supposed to drive up to NH to celebrate and be there by 2. Shawn woke up and said he was going to the show with D, now this was at maybe 9ish. I said I didn't think he would have enough time, he said he did and promised to be home by 12 so we could leave for NH by 1. Well at 12 he called Sara Lou to tell her he was on his way home. I waited until 1:30 and left for NH.
He said they got there late and he wanted to walk through and see everything and then they ran into a couple of guys and got to chatting. He says he left the show at 12:30 but ran into traffic on the way home.
Not that he had lost track of time. He just didn't give a fuck. He was enjoying himself and that was that. Fuck you Tina
*edit* Maybe I'm wrong. I hope I am wrong. Regardless of whether I am right or wrong I love him. I love him with all of my heart and soul. I don't want this to get out of hand. I want to find the balance and I'm hoping that Shawn does too. I'm hurt, I'm confused and most of all right now I'm tired. I know when I am tired I don't think as clearly as I should so I'm going off to bed.
On a happy note I called my pharm and asked her to call me in some Ativan. I'm smoking butts secretly and it's gross and stinky, and bad for me, not to mention expensive. Thankfully this morning I will pick up my script. Well I'm thinking my husband will be waiting in the Walgreens parking lot for the doors to open. Ugh
P.S. I am aware that I am sending Shawn mixed messages and I'm hoping we can work this out. God I love that man.
P.P.S. I REALLY think that this sort of shift in the realtionship should be addressed or at least mentioned in the pre-transplant support groups. WTF I have been blindsided by it.
