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!

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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

ONE

It is amazing how much time seems to pass in a blink.

The past year has been filled with far too many valleys as opposed to peaks, but yesterday we got to celebrate an amazing blessing in our lives…our daughter’s first birthday!

Everyone knows that it seems time goes faster as your life goes on. I have always accounted that to the fact that when you are young you don’t have responsibilities, there is no intrinsic value to time, and most significantly that there is so much new in your life that time does seem slower.

I suppose that little theory has been fairly muddled for me this past year though. For me I have been slammed with new things non stop…having a baby, transitioning to a new career, moving, Leukemia, a coma (the big sleep), meningitis, and half the year in the hospital. The time in the hospital was painstaking long days, especially when I had to transfer to a hospital away from my family. As long as those days have often been I am still shocked that I still feel like I blinked and they were gone.

Yesterday morning as I talked to friends about our daughter’s birthday I would just start crying at how fast time has gone. Everyone feels the same. I know it only goes faster each year. Maybe it is nerves…maybe everyone gets this emotional about it…I don’t know. I do question if it is surrounded by accepting my mortality. I have kind of accepted that I will unlikely live into my ‘golden year.’ I am going to do everything I can to live a long life, but I have accepted that the trauma my system has been through will take decades off of my life. I guess that is what makes it a little hard on her birthday…looking at her…proud…so happy…so blessed she is here, but terrified of what I might miss and what I might not be there to help her with.

I know, I know…look at things optimistically…don’t get me wrong…I do, but I also have to have the mentality of preparing for the worst while striving for the best.

Every day, I will love her and my husband like nobody ever can or will. Every day I will look at them, and when I pause it will make me smile, because just looking at them reminds me that I am the Luckiest Girl On Earth. Plus, we got her an awesome cake for me to eat 🙂

Beautiful Crying

A year ago if you had told me that I would have hushed my husband back to sleep ago because our baby was having a big hissy fit in the middle of the night I probably would have laughed at you. I did, however, just do just that…and damn did it feel good!

After being away from them for a couple of month straight, and really over half of her life, it felt good to tell him to go back to sleep then go pick her up and hold her…just like I know I shouldn’t in that situation. I know that I should let her cry it out, or make some peaceful noises to put her back to sleep, but I didn’t and it felt amazing. I just picked her up and sat there until she fell asleep in my arms as I rocked her. And you know what I did after that? I just sat that and held her more.

Hold the ones you love tightly

It is a challenge to walk all the way to her room (takes me several minutes still…I’m getting better)
It is really hard to pick her up
It is good to me home…words can not describe it.

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?

Pushing Forward Back

It will likely be a night or 2 of lacklustre sleep, as I attempt to mentally prepare to return to the hospital. This time it is all a lot different. This time it is scheduled. An observation period. Time to see how I am progressing. Everything in my heart and soul says this is going to be a great visit…encouraging…optimistic…a way to ease tensions. At the same time I am not exactly on an ideal run, so it does make my mind race…what if it doesn’t turn out well…what if they find something….it is worrisome, even within my heightened confidence.

It has been a great week or so, and I feel ready to take new steps, and have. You know, I decided to read back through my blog here. I must admit that I was fairly shocked reading it at times. It made me giggle a bit and it brought some tears to my eyes. I pondered if it was truly helping me, and I think it is…a place to just sorta blab…to clear my mind a bit. I road some of the dark hours again and I smiled at the memory of others. It made me realize how fortunate I am in those that patiently surround my life, and how a little effort and a lot of luck has guided me, and that even in the darkest hours I do my best to find some sort of positive spin…a grand outlook to chase at the end of the tunnel.

Being out of the hospital, we are being a full family again…we’ve battled things, and now we are concentrating on just relaxing a bit and enjoying some good times. Often my mind races to some future concerns…I have some surgeries upcoming at one point or another, and my future Leukaemia treatment is still unknown…but here and now I am happy…we are happy. I actually feel really really good…like the best I have most the year! I find myself energized being out…being with my family…inspired to push myself as far as I can. Heck…I can push myself up to my feet against a wall now, I can stand after that, and I can take a few steps. Maybe it is the excitement of being out and with my family…maybe it is adrenaline…don’t really care…it has been great! My goal for the end of the year is to be able to hop. That seems like a mountain climb away right now, but fuck it…imma get there…why….because I said so.

I think mentally and emotionally I am in a place I haven’t been in ages to. My husband and I have had extended conversations about the condition and the time I was asleep…something that we really hadn’t before…that I couldn’t. He shared bits of conversations, and little things they did while I was asleep. From medical procedures to going outside of his comfort zone and trying to play music from the suggestion of some friends. He talked about trying not to cry at my bedside, to the first time I had visitors, to the concerns of my lack of response when I awoke and initial thoughts that I had lost a great deal of mental capacity. He told me about the day that I woke up and the fact that the skies erupted like a sign from a greater power as I did. I have always loved the raw nature of a storm, and I guess the timing was uncanny. He told me about about my essentially non responsive state when I woke, being knocked out by the docs and coming to in the morning with some life and pure confusion. I didn’t remember any of that. That I contacted a few people as best I could. I didn’t remember that either. That I really only asked about going home the first day. I don’t remember any of that. I shared with him my memories…waking and freaking from the tube and not knowing what was going on and just panicking…then really nothing for what I guess was a few days. I don’t know if when I freaked out was the day I woke up and was unresponsive or the next day. I don’t remember any of it. We shared some laughs about some things along the way after that…we shared some tears…he held me close and I was just constantly reminded why I know I am the luckiest girl on earth.

Right here and now…life is great.
I don’t know what tomorrow will bring, at all, and that is a bit scary.
It doesn’t matter, because these are moments to cherish…these are moments to hold forevermore.

A Soul to Squeeze

Some things hurt more than others, and sometimes those things that hurt are still embedded in love. When I found out about my condition my first and foremost thought was my daughter, above all else. I essentially grew up without a mom and feared the same of my own daughter. Now I would never see myself intentionally separating myself from her, but when I got the news it is a fear that overwhelmed me and shook me to me core. My second fear was it becoming too much for my husband, who deals with patients all day only to come home to me, but my biggest fear by far was for my daughter.

As things progressed I wrote to her, and we made a lot of videos, and I read books and recorded it. So many people told me I would beat everything and that I didn’t need to do all of that. I know where there heart was coming from and always appreciated it, but for me it was something I needed to do for peace of mind. Knowing I did all of that gave me the knowledge that I did everything I could to be a voice for her as she grew up even if I wasn’t there. That let me concentrate on me a little more when I needed to. I don’t know if that makes sense to everyone or not, I guess everyone is different and people deal with stuff in their own way..but hey…that’s me, and as much as it killed my husband to see me do those types of things he understood why I needed to do it and did his best to support me through it. I could see it in his eyes….the pride of seeing me care about or daughter and look to her future to answer a few questions and be there for her, and at the same time knowing what it meant if she ever had to use those.

They say she is a fast learner. I tend to think a lot of that is the intense involvement in things like this that progressed her a bit faster. I don’t know for sure, but it is what I feel in my heart. To put it in perspective, my neighbor was shocked one day when she saw her trying to walk at 20 weeks old. I didn’t realize that was so early, but apparently it is pretty stunning. She had already been standing for some time. I guess I have just tried to cram so much in with her in a short time she was either going to have a sensory overload of grasp a few things faster…idunno…that’s what I like to think anyways.

At any rate, when I went for my sleep my best friend happened to be coming to town for a visit, and actually showed up without knowing what happened…stranded at the airport I guess…finally getting online and seeing a message. I can only imagine her shock. Now for her, she had just kinda been fucked over at work and was just getting away to clear her head a bit…but being the totally awesome person she is, what did she do…she stayed. She has had to leave town a few times, but has essentially stayed put and looked after our daughter as if it was her own. Here-in came a pretty crushing blow to me a few weeks back…shortly before I switched hospitals. They came to visit and she responded to my friend as her mom. It tore my soul out. I wasn’t mad, but I was crushed. My friend talked to me in private for a while and she was crying she was so upset…I just hugged her and said thank-you. I told her that yes it hurt, but it provided me with 2 things above all else…motivation to push myself to get home again, and the extreme joy that I had someone like hr in my life who could take on that role with so much of her heart that this would happen. She asked if I wanted her to move out, and I just laughed. We had a really good talk, and I think she understands that there is not an ounce of my soul that is upset…that it is actually comforting on some level. If had been anyone else…who knows…but not with her.

The second thing that kinda tore at my soul was shortly after. My brother and his wife in California offered to take my daughter on until things stabilized. Now this actually made me a bit mad. I was pretty shocked by the suggestion. But I did process it and I know how hard that must have been for them to extend. I love them to no end, and I know that this was done with nothing but love and wanting to offer a peace of mind to my husband and I to concentrate on other things. Yeah, I was pretty pissed off in the moment, but it didn’t take too long to realize where it came from and once again realize how luck I am to have these people in my life that are willing to step up like this. I can only imagine how many people go through major life events such as this and don’t have that support structure. I have seen it a bit when I have visited children’s hospitals and such…some of these poor families that don’t have a support structure and are grasping to get by financially in their time of need…it is crushing. I know how damned fortunate I am!