|Someone called for "Dr.Love"??|
B's doing not too badly, wheezy and tight lungs again, still pale as a wee ghosty but full of his Mr.B-ness so that is reassuring. We had our HomeCare Nurse and RT come by the house for a check-in yesterday and my heart dropped when Shaunee (RT) said his lungs were quiet up top (and then 'tight' after his ventolin). I'm trying to stay positive and trying to think that this is the last of those awful viruses leaving his little over-worked system...trying.
I go through 'slumps' (for lack of a better term) every once in awhile and I'm seemingly swimming through one now. Those days where it's just damn hard to be positive, when I get annoyed when people complain to me about seemingly small things (hey, we're all allowed) and when I just want to put my head under my covers for about a week (or two). It maybe sounds like a 'poor me' day but it's really not, it's more of a 'screw the universe, where is Karma anyhow' kind of day (said with a small smile).
And then I think...suck it up Buttercup, you have three, THREE friends going through chemo right now, three. How the heck is that for perspective???
|Doing my OT|
I'm sitting on the side of a single hospital bed at Rotary Flames House (ACH's Palliative Care hospice and respite) listening to my two big boys snore gently, life isn't that awful (my life anyhow) it's just sometimes (most times) it's really damn hard. I love this House and this organization but it is so very stressful spending time here for several reasons. So why are we here? For the big boys and for the memories that will be so very important for the big boys. I have put off booking time to stay (aside from when just B and I were here in Dec) for over a year because it is hard to be here. Hard to admit to myself that yes, this is our lives, and yes, I have a son that is classified as 'palliative'.
I finally relented because Torin was desperate to come and spend another weekend here. Desperate to the point of writing a reminder on my calendar to let me know to call and book time! I kept putting him off because well, we've had only what, 12 admissions in the past year to ACH?? Sheesh! I called, I booked a weekend for all of us to be here, for all of us to have a 'family' weekend of love and memories (and extreme stress for Momma).
I spent alllllll morning packing (6 hours to be exact) sorting and repacking what all of us (mostly B) would need. We arrived late for our 2pm intake so I was already stressed (did I mention the 6 hours of prep?) and we found out that they had bumped us from the family suite due to an emergency. Not only that but they had to put B down at one end and us at another but by us I mean a single bed and a pull down couch in a room. Not quite what we'd planned. Do I get it, why we were bumped? Oh hell ya, I get it. I completely understand without a shadow of a doubt why they bumped us but it was disappointing that they didn't call and give me the chance to back out and reschedule for perhaps a quieter time.
My first thought was that we should just turn around and head back home but then I saw how excited the boys were to be here and I just couldn't do it, I couldn't break their hearts. So I sucked it up, sucked back the tears of frustration (that it didn't work out as planned), exhaustion (no need to explain), disappointment (that I had it all 'planned' out) and extreme sadness for the family that bumped us out. I went through the intake process and got B all sorted out (he at least didn't freak out that we were here, huge bonus). The big boys were trying really hard to be patient, really hard, but they just wanted to go downstairs to the games room and couldn't go alone. They were so ready to begin their 'awesome' weekend!
I got B settled with a Nurse's Aide and came into our family's 'room' and promptly burst into tears, the stress just flowing through. B's Nurse came and we talked and I explained that I understood but that I had tried to just make a 'happy' weekend for the boys and it wasn't going to be as planned. I knew for certain that we couldn't all stay as a family, there's no room. She convinced me to stay one night and re-evaluate what we wanted to do in the morning. I agreed and brought the big boys in to explain why things were going to be a bit different this stay. Of course they both instantly noticed my reddened eyes, of course. I sat them down and explained the situation and that the house was going to be crowded and busy and that we were going to have to be very quiet and respectful (more so than usual anyhow) if we were going to stay. I gave them the choice to either pack up and go home and do something great there (what I had no clue) or to stay only one night...They were both very disappointed, Torin more so as this weekend was really for him (there is a microwave in the family suite right next to the bed where he and Ry slept last year!!). They both were adamant about staying for the night and I swore that I would do what I could to still make it as great as I could for them.
|T kicking Daddy's butt at air hockey|
|hangin in the tomato chair at RFH|
|Cheers to family time, such as it was|
They did get some time in the games room on the Wii and air hockey tables AND they got to eat 'the best food' ever for dinner (pasta by the wonderful chef, Joe). The night Nurse found us a second single bed so that I at least didn't have to sleep in the chair and Mike headed home for the night (that King bed all to himself!!!).
So here we are, lined up like sardines but hey, I'm feeling pretty warmed because I am witnessing the beauty of my sleeping children (ever notice that you love them even more when they are asleep??). I'm not any less stressed (unfortunately) but I can at least see some of the positives stretched out in front of me (or snoring beside me). No the weekend won't go as planned (and Mr.B and Momma got all stressed about being here for naught) but I am going to still try for some awesome family-ness and am open to letting a bit of light come through my dark clouds overhead. The staff keep telling me to leave B here and relax (I'm as relaxed as I'm gonna get at this point in my life) but having a family time weekend isn't a family time weekend without our Mr.B. So home we'll go tomorrow.
Tomorrow is another day.
My heart aches a great deal and sends many, many blessings to the other families here under the same roof as me. It is certainly not a quiet or calm night here for others. They may not have the option to go home tomorrow as a whole family. Hold your babies close, this is part of the reason that life is just sometimes so damn hard.
From Our (Sardine Packed Rotary Flames House) To Yours...