One Year Later

So thought I would carry on with the last post…

Belize, as I said, was amazing. My husband and I got some much needed ‘us’ time away from everything. I got my sun and he got to release mentally. Belize itself was an amazing experience. We will definitely be back!

After spending a little over 2 weeks there we hopped back to the US to the in-laws. I missed my daughter a lot, but was always at ease because she was in amazing hands, and around people she needs to get to know. Prior to the flight and right up until we walked through the door I had an old fear come back…will she remember me? I know it seems a little silly, but it goes back to something I think I talked about in a post somewhere way back…when I came out of the coma and was finally at a point where I could see my daughter she responded to my best friend…not me. When I got home she responded to my best friend…not me. It crushed me. I could tell my friend was worried about it…but we did talk and I thanked her, to which I think she was fairly surprised at first. I admitted it was hard to see that reaction from my daughter, basically seeing someone else as a mother figure, but that what it told me was that She had truly stepped in…moved a thousand miles and been there for my child…nurtured her as her own…and that is nothing short of an amazing act! None the less, I still have those moments entrained in my mind, and while I am eternally grateful for the people in my life being there in this manner, it still scares me that I have missed so much of her infancy and that fear of her bonding more with another is always present. Part of that is my relationship, or lack there of, with my own mom, and I know it is in my head…I guess it is healthy because it is a reflection of how much I want to be there for her and to be her guidance and go to person.

Anyways, we spent some more time in the southern US…even more time in the sun…YAY. His family is so great to be around. They are all VERY close and have an amazing home, and are just good people all around. I did get to see a scary dynamic though…something I have never witnessed…my husband and his brother…just…just wow! There is always tension there to some degree…I think my husband gets a little frustrated with his brother. The entire family are professionals…except the brother. He is a free spirit. His ambition is finding the next good time…hitting the beach or a party or the next woman in the sack…whatever. Anyways, out of seemingly nowhere they start fighting…and I mean fricken fighting! I have brothers…I have seen fights…but there are 2 guys who are gym nuts and no how to fight. Fists flew…stuff broke…there was blood………………it was just stunning! Still no idea on what actually started it, when I asked they just laughed…2 bloodied men just laughing….looking at each other and saying lets go golf! WOW. I really don’t know what to make of it. In one hand it was funny and kind of awesome that they could shrug it off and then hang out immediately after…on the other hand it scares me on so many levels I don’t even know where to start. Afterwards, when me and their mom were hanging out, she simply said “Yeah, they are like that. They show they care about each other with fists.” Really hard to wrap my head around, because it seems sooooo displaced for this family.

Anyways, since this we have returned home and enjoyed a super early spring. I have been progressing really well and enjoying messing around in the yard and taking kiddo out in the sunshine. Right now everything just seems perfect…tis great. I am probably in the best shape of my life. I have been going mad in the gym and have fricken stunning abs! My blood tests are showing stability for the time being, but I know we are going to have to deal with it all again soon enough. My daughter had a spinal tap (something I simply couldn’t be there for…it was too much for me) and there is nothing over the top. There are some numbers they want to watch and intend to do a couple taps a year. They are saying she is a high risk person for a Leukaemia outbreak, so we are going to monitor it all very close. If something does progress…we want to be all over it. The only thing that has been hampering me of late is that it is coming up on the one year anniversary of my sleep…and that has been causing me to miss out on some sleep…which is probably why I am writing out my thoughts. Basically 2 weeks from now is when it all happened…will be relieving when July long weekend comes and goes!

Life’s Little Musings

Things swing fast at times. It is amazing how your momentum can swing just as fast!

It has been a crazy start to the new year, with things unfolding at rapid pace the past few weeks, and for the most part, that is pretty good for me on a personal level, and really making me think about things.

The single biggest change for me is I am finally able to get back in a pool, and I can feel it recharging my system with vibrant new energy. It is a sensation I have not had in some time, and it is empowering! It started with just building some general balance, then challenging muscles that have basically sat dormant.  That little bit of challenge to them REALLY seems to have them and my entire body responding.  I am able to walk about a little now, though I am using a walker if it is more than across a room, I can land a hop, and I can climb a couple of stairs!  My energy level has also  made things better at home, as I am interested in more than simply laying around.  We have company and go out for dinner, and just have a better quality of life now.  On a relationship level, we had been a little active, but the bedroom activity has definitely picked up, and that is really good.  I am blessed with a pretty patient man.

My talking voice seems to be getting nearer to normal, though I still struggle with singing, and it still kid of does it’s own thing at times, but really, it is a massive improvement and heading in the right direction!!

So as I started to return to some resemblance of my former life, my papa unloaded something on me as well.  He is considering retirement and wants me to start thinking about whether I want to take over the business or if he should start looking at potential successors.  I had kinda stepped away, but have been kept in the loop, and we had discussed the potential of my return in time, but this caught me off-guard.  I mean it is not shocking that he wants to retire at some point, the man has worked his ass off and has more money than he will ever spend in retirement…he deserves it.  I suppose it is more that it is hard to watch a parent, a man I have idolized and followed in his footsteps look at moving into the “golden years.”  It is a lot to process for me just being slapped with the reality that he is getting up there, but also that I love that company and would hate to see it go to someone else.  Here and now I am really torn.  We have started a whole new thing elsewhere with my new family, but I did love that life.  Lots to think about, but he said it was a few years out still, he just wanted the bug in my ear.  I suppose I need to evaluate the next year or so, see how the Meningitis recovery goes, which seems to be going well, then see where I am at with the Leukemia, plus talk with my husband and see where his career opportunities lay.  All so scary and exciting!

I have also been feeling well enough to start doing some visits to the children’s hospital again.  That is a great feeling to get to share some time with them again.  I met a girl the other day, Jamie, who I spent a few hours talking to.  We got along so well and just had a blast talking.  It scared the crap out of me how much she reminded me of myself when I was 12!  Her dad is a music teacher, her mom bailed when she got really sick, she has battle Leukemia and has gained a bunch of weight because of the meds prepping for her HSCT.  It is like I can read her mind!  I know exactly what she is thinking, because I have been there.  I think we may be kindred souls.  She looks at me and has a hard time believing I was in her shoes…I was and I had the same stance…nobody would ever love me, no guy would ever want to date me, I would never look good…SOOOOOO hard when you are that age…you are going through enough changes and developing and trying to cope with all of that, then THIS is thrown into the mix!  You change tenfold more!  So hard.  But I dug up a picture of me when I was her age, and as she said…if it wasn’t for the smile she would never know it was me.  I told her it is not easy, but battling through this will give her character and an appreciation for life that few others truly have.  She will get to where she wants to be, it will just take time and a lot of effort.  Next time I see her I am going to make her a promise…that when she is ready I am going to help get her there…I will be side by side working with her.

My daughter, well, she changes more and more every day.  People keep saying that she is definitely a mini-me.  Not sure if that is good or bad lol.  She does the cutest thing right now.  She is infatuated with reflections, and he own trips her out a little bit.  We have set this big mirror up at ground level and she will stare at it, then suddenly dodge to the side and look back and giggle, then sit there for like 5 minutes and do it again.  She totally looks back to see if the image is still there lol.  I am not entirely sure if she has figured out it is her, I think she knows but doesn’t entirely know how to process that yet.  I will sit there and point at my reflection an then myself, and go “mommy” to both, then do the same to her, and she seems to grasp that…though she gasps with a massive giggling smile, so who knows for sure!  She also likes to get up close to it and lick the reflection…too funny…and if you say “kissy” she will give her reflection a little smooch.

Looking forward to what the rest of the year reveals.

xox, LGOE

Sleep for Never

I don’t sleep well. I sleep in 20 minute spurts several times a day, then crash hard after several days. It has been a steady pattern.

My husband says that I need to get some help for it because it is not healthy, and I know he is right. I won’t take sleeping meds…I just won’t…so that leaves delving into my mind with a therapist. The thing is I already know why this pattern has emerged…

I am fucking terrified to go to sleep!

Ever since I came to from my coma like half a year back, my big sleep, I have been terrified to sleep. They have given me all kinds of therapy, but I don’t think I really realized the issue, or wanted to admit that I did anyways. I can remember a nurse teasing me about giving me sleeping meds if I didn’t sleep one night and I freaked right the fuck out on her. In reflection I think she meant it as some light hearted humor to encourage me to get a good night sleep, but it was way too soon after wakening. Has that stuck with me? I don’t know. Perhaps it is something deeper…pure terror from the experience. However, ever since that incident everyone pretty much backed off and gave me my space on the matter. Probably good in the moment, but not in the long run.

I am terrified to seek help because I really fear they will put me on sleeping pills to get back into a pattern, and the idea of essentially being medicated to sleep brings me to tears. Perhaps we can talk about my feelings and it will help, but I still fear the end result will be medication, so I keep my mouth shut despite my husband’s encouragement.

I guess I have accepted that it is an issue now. I am at least talking about it, and I guess I am just hear writing this to clear my mind on it all a little bit. I’ll give that some time, and see where it leads me anyways. I don’t feel bad or tired or anything, but I know it is not healthy. I don’t know what treatments I will be undertaking and when for the Leukemia, but I know I have to get stuff balanced to prepare for that.

So much to think about. Perhaps steady sleeping will allow me to process it better. I’m just rambling a little now…just venting…trying to process it all to steady my mind into either releasing concerns so I do sleep better, or prepare to seek professional help.

F*** Leukemia

Yeah…Fuck it!

Been pondering the ribbon as a tattoo, and have seen some awesome concepts online.

I kinda like this one, though I am not really overly religious so:

I am thinking of maybe a fairly standard Leukemia ribbon and than some script with it.  Something a friend said might be kind of neat is to get the ribbon and have “SURVIVOR” on it on one side, and get it touched up with the same thing on the other side when I beat it again. Beyond that I am thinking of circling it with FAMILY FRIENDS … MY STRENGTH, MY COURAGE

Would really love to hear some ideas from people out there as I am still pondering it all, and not 100% sure it is what I will get.

 

Relearning Life

Being in the hospital for so long and now being home I have realized I have a lot to relearn, and well, a lot to learn. My daughter is coming up on her first birthday, and I was learning maybe as much as her every day when she was born. I have historically never had a pile of exposure to babies. Yeah, I have been around them here and there, but not for extended periods.

Now don’t get me wrong for one second…I am ecstatic to be home and welcome the challenges, but it is hard…the best and most important things generally are. I do have a challenge that I haven’t really talked to anyone about, though I think my husband has figured it out already; that challenge is people that have been around my daughter more than I have. They know subtleties that I don’t and they try telling me about them. Now, I appreciate the help, but don’t receive it well. I think a big part of that is the pain that I don’t know a lot of these things…that a lot of firsts were taken away from me. I am pissed off that people know a lot of things about her that I don’t. I also combine it with the fact that I fear I am learning at a slower pace than before the coma. I have expressed that concern to my husband and he insists that I am fine and that if anything it is lack of mental stimulus for an extended period. Maybe he is right, I don’t know, but I do feel that I take things in a little slower than in the past. I see it in lots of things…from grasping a joke, to understanding something in the news that I would have grasped immediately in the past. It scares me a little…a lot really. I mean I don’t think, or I hope, that I will not decay mentally, but there is obvious fear of what damage my condition truly did to me.

I have found myself trying to pick things up where they were 6 months ago, but the simple fact is my world moved on and progressed without me. I am trying to come to terms with that…to accept that I have missed a lot and that I can not rehash or experience those moments. I know that I have to learn about things that have happened and look forward to those that are yet to come…doing that is harder though.

We climb a lot of hills in life, but I know that my husband will refuse to let me do that alone, and for that I am eternally grateful.

Recharging Smiles

It is amazing how fast an emotional switch can be flipped isn’t it?

Yesterday I felt empty and at an all time low, and today I feel fricken amazing.

I had been trying to explain how I felt, and trying even harder to figure out why. My husband, the most amazing man on earth and he who make me the Luckiest Girl On Earth, saw it. He knew it. Even though he is thousands of miles away at home while I get this medical care…he fixed it when nobody else could!

But how can one fix something just like that? Well, I guess it is pretty easy when you are him! We were talking about a few things, and he steered the conversation into talking about the house. From seemingly nowhere he says ‘Good news, I found a nice 900 foot slab house and bought it and have accepted an offer on ours, so when you get home you won’t have to worry about a big house and stairs!’ Now ours is a few thousand square feet and on an awesome acreage edging town, so I lose my shit…like I snap…my mind blows. He finally stops me and says ‘You know I didn’t actually do that right, but did that feel good snapping?’ All I could do was pause, say yes, and start balling my eyes out. My emotions just poured out. He amazes me. He knew what I needed and he eagerly took the beating to get there! I just can’t imagine not having him…and he I…he amazes me more every day!!! He has been my rock, my crutch and kept my soul in tact the past year or so. Completing me and forcing me to be the true me at the same time.

And now…well…now I pack. It is time to return home. I was really believing I wouldn’t be home for Christmas, and even if I am not a huge Christmas person, that was still hard to deal with, and I think what was the fine straw that was playing havoc on me. My husband contacted my doctor to see where I was at, and ask if I was ready to come home…something I couldn’t do. I am not sure why I couldn’t ask. I tell myself it was because I didn’t want to push for it and have them send me on my way too soon, but in my heart, now, I know it was more because I couldn’t handle being told I wasn’t ready. That would have crushed me. I am however going home, and that is what matters!

Giving Up

Do you ever just wan’t to give up no matter how deep you dig?

You know when I started chemotherapy for the second time in my life it obviously scared the fuck out of me, but I was more than optimistic and eager to be that girl who could say she beat it twice.

When I awoke to find out I had meningitis I was pretty numb to it. I eventually went through the emotions…some self pity and anger, to hope and desire to push myself.

When I found out stopping chemo because of my situation would likely mean needing much more intensive treatment I gave up…I didn’t want to go through it…I had accepted my mortality. Some good friends and family pushed me through that and I eventually came around.

Now, I can’t believe I am saying this but my GAF seems to simply be gone. Things are going pretty well, but I can’t seem to motivate myself. I’m depressed, yet I don’t cry. I am sad, but really have no idea why that is. I have a go to list that I think about when I am down which always brings me around…it is having no effect. I received some lovely flowers the other day, and I think that might have spiraled me…I don’t know. It’s like it makes me think of the family and friends I am not around, especially my husband and daughter. It makes dwell on my situation. Well…I finally chucked them out today, so we shall see what tomorrow brings I guess.

I’ve never felt even remotely like this before. I hate it. It is NOT me, but I don’t know how to lift myself from it. I want to scream for help from the mountain tops, but how does one whom is pretty self-aware do that when they don’t know what is wrong?