I get it now.

So these activity trackers are really useless in my opinion. I say that as I just ate oreos for breakfast….and there it sits on my wrist…staring at me….with it’s blank face of hopeful expectation. I want to scream at it. YOU DON’T KNOW ME! I DESERVE COOKIES FOR BREAKFAST! Quit judging me you overpriced piece of plastic that basically tells me what a shitty job I did of sleeping last night.

So that’s not what what ‘I get’ but man that had to be said.

What ‘I get’ is that no matter how many friends I have, I will be lonely during this journey. Not because I am not loved, but because until it is you- you just won’t ‘get it’. That’s hard for me but that’s the lesson I’m learning. This time of transition into the unknown is just a very scary place to be.

So in the meantime, I’m hopeful that I will continue to grow as a person and recognize the lessons life is trying to teach me…..and that I will be open to them. I’ve been kind of crabby lately with my husband because he forgives me the quickest. He won’t be reading this so I’m just telling you- I know I’ve been snippy….not quite bitchy but cutting it close. I know it is from the immense amount of stress that he and I are both under but that’s not fair to him and I plan to rectify it as of now. It’s so easy to be our grumpy ass selves with the people that love us most. I feel bad for him. I wouldn’t want me for a wife right now.

These are random thoughts for a Friday but I felt like putting it on ‘paper’. But now I’m off to run errands like the bank, post office, pay rent…basically a bunch of crap I wish I had people for. And I suppose it’s only fitting (ha) that tonight I’m going to a clothing party where the star of the show is leggings. leggings. So at least the Oreos for breakfast shouldn’t interfere with my fashion sense.

Val xo

9 months and a lifetime ago.

That’s how long it’s been since I last wrote. I’ve thought about writing a million times. But for me everything has to line up just so, in order for me to make myself do it. I have no idea who has subscribed to this and therefore, no idea who will read it but here goes.

The short version of the last 4 months is that my son Christian is in need of a double lung transplant. We have spent that time doing all the necessary exams, tests, appointments and jumping through hoops and red tape that that requires. Just because you need an organ in no way means you will get an organ.

I’m very thankful to say that Christian (23) is now actively on the list. We are waiting for the call that there may be a donor. A call doesn’t guarantee that but it is the start of things to come. There are many reasons you may get the call to come to the hospital and then for whatever reason, the team decides the lungs aren’t a good fit. Christian didn’t automatically get put on the list, they had issues with a time during his teenage years of being noncompliant with meds/treatments (about 3 hours a day for a CF patient) and made him do additional ‘things’ to prove he was worthy of new lungs. 2nd time around, they decided to approve him. We are thankful for that for too many reasons to list. But that process alone has been the most nerve wracking, stressful time of my life. Until now.

Waiting for this call that could come at any time is beyond stressful. The word stress gets thrown around so much. I was one of few that ever really used it. Despite being a young mother and caring for a sick child our entire lives. I can’t say I was ‘stressed’. We just make a great team and did what had to be done. Well I do use the word stress now and I use it daily. Every night I pray for God to give me peace and please let me rest and let my mind rest. Sometimes it works, mostly it doesn’t. We found out the other day that after less than a week on the list, his name has already come up for an ‘offer’ (that’s what they call it). For reasons they are not permitted to share, he didn’t get the call. So if we thought we were anxious before….now we literally know it will be any moment. And while I can’t speak for everyone involved, I am not ready.

I’m not sure anyone (in my circle) understands how difficult a time this is for me and my family and especially Christian. I have people see me and say ‘aren’t you excited?!!’…well, gulp, no. I’m afraid. Don’t be confused. He needs this transplant. His quality of life is going down fast. We are all aware of what has to happen. And we want it to happen, of course we do. But the idea of my only child being in this position for one of the most major surgeries a human can have….well my ‘what if’s’ take over. I do my very best to keep myself in check. But when you have lunch with your 23 yr old and discuss ‘arrangements’ with your child, then we can talk. Not because we don’t think he’ll come through this. Actually the opposite, we both believe for the best but just like I told Christian, it’s ok to be practical too. And if it makes everyone feel better to know exactly what everyone wants, there is nothing wrong with that. I am so proud of how Christian is handling all of this. It shows me that he is far more mature and knowing than I could have imagined.

He says he’s decided to take this time before the call comes to do exactly what he enjoys most in life. I told him I fully supported his decision. Yes that includes numerous appointments, meds and treatments. But if you want to play video games til your eyes bleed. Go For It. Drink Mountain Dew and watch Office reruns. DO IT. Physically he is very limited, getting winded, provoking coughing fits, physically there isn’t much left he can do any longer at this point. But he did promise me 2 times a week at the gym to keep as much strength as he can.

This place I’m at is lonely. Facebook is a blessing and a curse. It’s great that I can update hundreds of people at once and it hurts when no one takes the extra time to call you to see how you’re holding up. Not that a couple people haven’t done some nice things, because they have. And not that I haven’t received a few texts, because I have….but the no call thing from close friends is surprising and a bit hurtful to me and makes me wonder, have I not been a better friend to them? It’s something for me to think about and be mindful of when seeing others going through difficult times for sure. So I’m using this time to focus on myself. And being the healthiest version of me I can be so that I am prepared to take care of my son when he needs me most. I guess that’s all I have for now. Thanks for listening xo

ps please become an organ donor. You may find one day someone you love needs one.

lovesong

So a freaking roach just ran across my foot. In all seriousness, I just finished reading an article posted by a friend on FB about using catnip to ward off the filthy beasts….and then one strolls across my foot? I’m trying not to read too much into it but dayum. I’m so over the outdoors being in my indoors. I might as well go camping.

That wasn’t what I came to write about but I’m sure you can see the need for my digression.

It’s hard sometimes to feel worthy or happy when good things are happening in your life when you see others hurting. Especially people you love more than life. I find it to be a terrible struggle. The struggle between sobbing uncontrollably and laughing deliriously. Fine line indeed. I am in a moment of my life where my heart breaks every single day. I do my very best to put my happiest face on but I admit, there are days it is difficult. I suppose that’s why I’m visiting wordpress and sharing. When my cup runneth over, the writing helps. And so does listening to The Cure. The irony is not lost on me.

Tonight in my private time, hooked up to my music and logged into this virtual diary, I decide to let my tears go. It’s something I rarely do. Mostly because I find it hard to recover from. Much easier to just keep sitting on it. Probably not my healthiest option but an an option I know well and if I do say so myself, I’m good at it.

Perhaps a good cry is what’s needed. Or perhaps the swelling will simply plump the fine lines around my eyes for tomorrow’s makeup training class. Either way, I’m set. My heart will not allow me to share any further. Much love to you all.

v xo

big bowl of treats

Good morning from sunny Florida! I just wanted to pop in and let you know that Christian started feeling better last night. He is still in the thick of it but there is definite improvement. I am so relieved. I just realized today is the big bowl day! I’m heading in to work but will set the dvr to record the Kitten Bowl on the Hallmark channel. Can’t wait! I’ll tell my husband to get all our game day snacks ready and to lay out my favorite kitty t-shirt, socks and pajama pants for the party. I hope my neighbors are ready because this cat is ready to party.

right meow,

v

on the road again

It seems like a good time to write. Christian is finally sleeping. My kitchen is clean. My house smells like a Fabuloso factory. Which conveniently gives the illusion of a very clean home. Apparently when I’m mad, I clean. I really should get mad more often.

Why am I mad? Because after the last few days, I am convinced our healthcare system is completely broken. You already read how his pre-op appointment went so I guess it should be of no surprise how the day of surgery went. I’ll start at the beginning.

Day before surgery I received a call from the surgeon’s scheduler that someone had canceled and to arrive earlier than planned. The new time was to arrive at 7:30am for a 9:30am surgery. Ok great, the earlier the better. Let’s get this party started.

Day of surgery we arrive promptly at 7:30 and get checked into the hospital. We are taken to a holding room where they do the typical things- go over meds, start the iv, etc. Myself, my Mom and Christian’s girlfriend were all accompanying him. Then my husband arrived. And with a cooler of drinks! We were so thirsty and getting restless in the tiny room. Hours had passed and no one had even popped their head in to see if Christian needed anything or to give an update of any kind. Christian is typically in isolation and this time was no different. That means that every time you enter or leave the room, you have to dress yourself in a plastic gown, gloves and sometimes a mask. So leaving and coming back often is a real pain in the butt. We could hear the party at the nurses station and quite frankly, after hours of waiting, it pissed me off. I disrobed and headed down the hall. You see, we had already been told by 2 different people that Christian’s doctor had an emergency surgery that morning but that he was next on the schedule. The surgeon even came in and spoke to us and gave the impression that C would going back shortly. 3 hours after that, it was obvious that was not the case. We didn’t want to leave C because we had no idea what the plan was and apparently neither did anyone else. Oh they also reminded us that we did come exceptionally early for a 12:30 surgery. Ummm. I had to tell them that they called us about a cancellation. No one was aware. Well of course they weren’t.

So I get to the station and all the laughing ceases. Must’ve been the pleasant smile on my lips. The conversation went something like this, “We’ve been waiting 7 hours. None of you has even checked on him or given us an update. Somebody better find out what the hell is going on and you’d better do it quick. I’m done being on your schedule and I’m done assuming any of you are going to do your jobs without being told.” Now that may seem harsh, but guess what happened next? Yep, they came within 20 minutes and took him into surgery. I’m just mad I didn’t get bitchy sooner. Lesson learned.

The ride to the OR was fine. As long as you didn’t really want those anxiety meds before surgery, want to speak with the anesthesiologist or get any final questions answered. Talk about sending your kid off on a wing and a prayer.

It wasn’t long after that the surgeon showed up in the waiting area. I thought surgery was 3 hours?? He says nah only about 1.5 hours. I just sigh to myself and think just get to the part that actually matters. He says it all went really well and he was able to clean out all the sinuses and repair his septum. Which he says will be the most painful part of his recovery.

My Mom and I go back to see him once he’s moved to recovery. Ohhh there’s my sweet guy. Being kind to every person who’s bustling around him. They came in to remove his packing. That’s something I’d be fine to never have to witness again. I cringe just remembering. He never ceases to amaze me. I mean, this kid simply does not complain. How is that even possible? So, when he does- I know it’s serious. We all begin to take turns visiting Christian. I begin to feel a weight lifted. When I go in for round 2, he asks if there’s a tv. There is and he wants to watch The Lightening play. He asks if Kaitlyn can come in and watch with him. I say of course but the selfish part of me wants to stomp my feet and say No! I get to stay! Like I’ve said before, it’s a transition for all of us and I’m doing my best. As I go to leave he stops me, quickly says he doesn’t feel well and I recognize the look on his face. His nurse isn’t as quick and I grab what must have been the biggest garbage can in the room and literally hold it up to his head so he doesn’t have to bend over. He begins to vomit and it’s all blood. That is always so disturbing. Bless his heart. Can you imagine having to vomit violently after just having everything up your nose worked on? It broke my heart. They had him on oxygen because he couldn’t keep his o2 levels up. Dipping as low as 79% at one point. He kept ‘forgetting’ to breathe. The anesthesia combined with the CF makes for a potentially dangerous combo.

He just wasn’t doing well enough to go home. So they decided to keep him overnight to get those levels up. As soon as he got to his new room, more vomiting. He had a guy that was with him from transport that was about his age. He was so kind and really helpful to Christian. I really wish I had got his name. He and his new nurse Jessica, were the saving grace of the day. Jessica ‘got it’. Thank God. I pitied the soul that may have crossed my path at 11pm that didn’t ‘get it’. After discussing it with Christian, I decided to leave. His girlfriend wanted to stay and he wanted her to stay. I was going to stay as well but after a call to my voice of reason (my amazing husband), I left him to be a grown up- after I got Jessica’s personal cell of course. That was one of the hardest parenting moments of my life. Kaitlyn thanked me for trusting her. I realized in that moment that was what I had to do, trust that other people could also help care for Christian.

Mom and I went back to get him and Kaitlyn in the morning. They said the night had gone well. I had made the right decision whew. I had 3 prescriptions transferred to a different pharmacy than the one that they got called into. Doesn’t matter why. What does matter is that the pharm tech at CVS in Brandon is lucky I didn’t have a fucking sledgehammer and come at her through her window. I swear to you, what provokes people to just be nasty out of the gate? I was in no mood. So anyway, they had screwed up the scripts. Just par for the course I felt at that point. So I got his pain meds (which they had) called Terry to please go to the other pharmacy and get his 2 other scripts and we headed home. After being on his pain meds for about 24 hours, Christian and I both decided that they were not strong enough. Let’s not even go into the fact that they aren’t the drug that was discussed being sent home. I told Christian, we will just call the on call surgeon and get something stronger. I’m gonna make this part short because if I dwell on it too long, I become enraged all over again. On call doctor calls and apparently it’s policy to not prescribe narcotics on the weekend….what. the. fuck.

They were lovely enough to suggest he go to the ER but that it was Gasparilla so good luck with getting to TGH. OMIGOD just make this madness stop. Yes Dr., I think it’s a brilliant idea to take cf’er to a flu infested ER when all he needs is for you to do your job and call in the med you said you were originally prescribing anyway. So after a shower, a heating pad and extensive internet searching to get my own damn doctorate- Christian is finally resting.

My friends have us well fed and what a relief that is. I told one of them that I had no idea how nice that would be to not have to think about what to feed anyone. Thank you for all your prayers and well wishes. Thank you for letting me vent as well. It is therapeutic for me.

Oh and my internet mermaid hair came. Finally. I hope mermaids are still in style.

take 2 and call me in the morning,

dr. mom

more fun than 2 twenty year olds

My fabulous hair stylist (aka bff that I give free facials to) always asks me to go home with the extra teal color we have left and apply it at a later time to my roots so the color will be even. Well I never do that. I’m gonna say it, “ain’t nobody got time for that.” But I guess I gotta little time cause here I am sitting with blue on my head. She will be so pleased. Heh. I’m extremely particular but I don’t care much for being told what to do (laughoutloud). As I was preparing to apply this delicious color (it is delicious don’t you think?) I told my husband that I was worried because I only had one glove for application….can I do it with one glove?…He says, “Michael Jackson only used one glove.” And so I shall apply one gloved. So I thought while I sit -for an ungodly amount of time trying not to drip on anything- I’d write you a little note.

Ah yes, Depeche Mode fits the mood quite well for me tonight. So that’s what’s playing in your head right now so you can read along properly. And if you don’t know it (gasp) no well that isn’t possible. Moving on.

Today was my one day off a week where I enjoy a day of total and complete relaxation. Right, anyway, it’s a really lovely thought. So I ran a bunch of errands (which I hate), paid bills (which I hate) and shopped (which I hate) when I didn’t really need to – for things I didn’t need. Hence me ending up with 2 JLo shirts from Kohl’s that looked stunning on the hanger and like poo draped across my bod. My husband shared with me today that people who are prone to migraines (which I am) typically do not enjoy shopping and actually find it stressful. YES! I don’t know who paid for the study but it’s totally accurate as far as I’m concerned and money well spent. I enjoy specialty store and boutique shopping but anything too big and I’m done. IKEA is a four letter word. don’t. even.

I am trying my best to mentally prep myself for my son’s surgery Thursday. It’s just hard as a Mom to let someone take your child and put their life in a stranger’s gifted (you pray) hands. So please keep him and his doctors in your thoughts and prayers. Also go ahead and pray for my nerves….what’s left of them. For those of you interested, surgery is about 3 hours and hopefully he will come home same day.

So today I began the arduous task of returning items I had already bought for my prom party. Talk about a day off killer. With each item returned I felt as if a small piece of me were dying. Ok that’s dramatic but it totally sucked. And because I felt like someone just stole my candy bar (guess I stole it from myself?) I decided I deserved to buy myself something. So I bought 220 grams of hair (just say no). My internet hair will be here tomorrow. I shall transform from the mundane into a mermaid. 22 inches of the finest human hair money can buy (um eww when I really think about it). I’m so excited I can hardly stand myself. You’ll probably want to go ahead and unfriend me now before I get it. #stopdropandselfie #mermaids4life

rinse & repeat,

v

Askin’ ain’t gettin’

It was a beautiful day here in ole sunny Florida. At least I think it was. I was inside all day working with my clients. I’m so blessed to know these women. They make me laugh, cry and realize my dreams every day. Thank you ladies for being a true bright spot each and every day.

So I’ve been reflecting ever since I wrote my last post. I’ve realized a couple things. I think the thing I’m having the hardest time with is letting my son become the adult in these situations. Allowing him to take the lead and for me to be the moral support. See I’ve been lead dog for 22 years. When you’re dealing with a condition like cystic fibrosis, there are so many factors…and I’ve been in charge of everything. And now, well, I have to help transition him into that role. This is proving harder for me than I may have realized. So when yesterday didn’t go the way I thought it should have, it wasn’t just that. It was that I wasn’t in charge to force it to go my way. I had to sit back and do my best to allow my son to navigate through their system. I could’ve done a better job of just supporting instead I took the role of mother and became sensitive to their shortcomings. I’m happy to say that I discussed my concerns with my son and he will be placing the call to get our final questions answered so that we can all have a peaceful week and arrive to the hospital on surgery day as worry free as possible. I appreciate him understanding that I’m trying to do right by him and why I become so passionate. It’s love, plain and simple.

So moving on, I’ve questioned myself a couple times about the nature of my blog…is it too revealing? What if clients read it? Am I being too honest? Is this too personal to share? Well I’ve decided that I don’t know those answers. But what I do know is that whatever I decide to put here is me. It won’t suit everybody. Nothing ever does. And I guess I’m ok with that. The reason I say that is because lately I’ve watched several people using Facebook to build their businesses. Hey I do it too so I understand why they are doing it. Fb is a great free tool to reach many. Here’s the thing, none of it feels authentic. It’s all a bunch of words of a life you aren’t living. Maybe I’m wrong. Heck, I hope I am wrong. What makes people tune in is to see that you’re just as screwed up as they are. You worry about the same stuff they do. You eat pizza and have sex and sneak Oreos just like the rest of us. When all you do is portray your perfect vision…well, no one can relate to that. I’m not talking about being positive. I love to be positive and put it out there! It’s all that other junk that isn’t your truth. No I’m not saying you gotta put your secrets out there. I’m just letting you know I might actually stop and read your post or watch your video if I felt like you were being authentically you. Ok well I didn’t plan to go there but I went.

Can I just say I’ve never met a human being that can ‘not be sleepy’ and be snoring almost instantly as my husband? You know what I’m thinking….w.t.f.? I’m so awake I could just skip this whole blog thing and write a novel. Sorry it’s just that he’s laying here all snoring and stuff and I couldn’t help but mention it.

So tomorrow is leg day, I think. Honestly I don’t know but I do know I have to be there at 9 for whatever day it is. Muscle day, yes that’s it. So here’s something honest for you, I have eaten like total shit this week. I’d say I don’t know what’s wrong with me but I’m pretty sure it’s just that I freaking love cheese fries and cake. Ugh! Part of me is mad at myself and the other part can totally rationalize why I deserved this week off. Regardless, I’m back at it tomorrow. I wonder if I’ll ever actually look the way I think I want to look. I guess we’ll know in a few more months. No more weeks off until my birthday (March 20) (go ahead and jot that down).

Not Snoring or Eating Cake,
v