What a Long Strange Year It’s Been…

I am a jumble of emotions today. I am so happy for Kyle as it’s his last day of radiation and so sad I cant be there so see him ring the bell of completion. Tonight, i get to hold him in my arms again and have him home and in a couple more weeks…permanently. I have also never been more grateful for the speed at which a year can fly by. Also, I will never take another day for granted. I am making a list of things to do when he is completely done with all this: Travel, day trips, new experiences, etc. I will enjoy every second I have on this earth with my family from now on as much as I can. I’m sorry it took this type of situation to be such a wake up call, but I have heard it and will make the most of the rest of my days here.
I am also so thankful for the people in my life. My friends, my family and even the strangers that have heard of what we’ve been going through and have offered prayers or sent written support. There are so many to list that have been supportive, kind, generous and loving.
Thank you Doug for being a great father and taking such wonderful care of him. Thank you Kerry, Sherri, Jessica, Elizabeth, Cherie, Christin, TammyLynn, Beckey, Susan, Susan, Sue, Sarah, Maria, Maria(and so many more I haven’t listed) for being there when I was a sobbing mess and needed to be held up or bitch-slapped virtually (guess who that was) and told to stay positive and that he would beat this.
Thank you Mary for talking to me that day and giving me that hope I needed to grasp onto. That assurance I needed to hear. That has kept me grounded this whole time.
Thank you Leo for being so understanding in all this and the loving son and little brother. You always have a hug for me when I was sad and always had a way to make me smile. Thank you for being so encouraging to your brother and helping him when he needed it.
Thank you Sandra for coming up and helping with hospital stays and phone calls. Thank you Roger and Colleen for all you have done too. I love you all.
Thank you to my Ryan for being my best friend and loving husband and always holding me when i collapsed and broke down through all this, all the while reassuring me he would be fine and he was strong and would get through this. Giving me strength when I needed it so desperately. Making me laugh and smile when i felt like i couldn’t. I love you dearly!
Most of all, Thank you Kyle. You have been so strong through all this and so brave. Somehow you always seemed to have a smile even when you felt like utter crap. I will make this all up to you, all that you missed this past year, I promise. Thank you for being so strong and wonderful..even you told me “i’m fine..Ill be fine!” when i was sad and scared.
It’s not all done yet but we only have a few weeks till it’s all done. Thank you God, thank you so much.

Faith in humanity, restored!

In a world where everyone keeps their heads down and minds their own business, the kindness of strangers still leaves me in awe and can make me cry with such happiness and gratitude, it makes me feel better and have hope for this world we live in.

We were out of milk and a few other things. Made a stop to Shoprite to pick things up for home (OMG how could I have spent that much for so few groceries!?!) and as i was loading my sacks of groceries into the trunk, another car pulled up two spaces away. I walked around front of the car with my empty cart and offered it to the two ladies saying it rolled well. “Rolls well, huh? Sure we’ll take it!” they said laughing.  The one woman then complimented me on my hair coloring and asked where I’d gotten it done and what was the inspiration for it?  I told her about Kyle and what he was going through and how he’d chosen a blue wig to wear and that if he wanted me to do the same I’d shave my head and wear a wig too, but he declined it and said he just wanted me to dye my hair and thus is the reason for my colorful do.

The two ladies looked at me with their hands over their mouths. One of them comes to me and gives me a hug and says “We never come to Shoprite. We usually shop other places but decided to come here today and now we know why. We were meant to come here and meet you. We will say prayers for your son and put him on our prayer chain.”  I was so moved by the kindness of these women, I called my husband and told him on the way home about what happened and it made me cry. (as it is again as I am typing this)  Thank you ladies for restoring my faith in humanity. Bless you both!

 

Frustrations & Complaints (move along if you don’t want to read further)

The night didn’t go so well. The lack of sleep has caused me to be in a foul disposition thus is going to reflect in this post.  The IV machine kept beeping and of course the nurses didn’t hear it so it would wake me up and I would have to go out and let them know that there was an issue with his fluids. This happened at least three times.  Then he had to use the restroom so he needs a hand with that..mainly rolling the IV cart and maneuvering it for him since he is half asleep.  All that started at like 12:30. I started to drift back off and then some weird ass dream woke me up and had my heart pounding. I can’t even recall what it was now. Then, the hunger set in. It was damn near overpowering too. I kept craving sushi in the worse possible way. I seriously debated going down to the cafe that is open 24 hours but all the food is starting to taste the same there and from what the nurses said, they aren’t that well stocked in the wee hours of the morning. So, after a cursory search of the floor to see if there were snacks of any type other than saltines or graham crackers, I went back to bed. The hunger pangs kept me up though and I decided to surf Facebook. Why oh why do all the amazing and scrumptious looking recipe videos come up at that time, when I am soooo hungry?!  It was torture, I tell you. I finally fell back asleep sometime around three is my guess.  But, the damn beeping IV machine woke me at 5:45.

On the complaint front, while the nurses are wonderful as well as the other staff here, the facilities leave quite a bit to be desired. First, they have these vinyl pull out couches and they have to be only slightly more comfortable to sleep on than the floor. Let me tell you, osteoarthritis and this couch do not get along what so ever.  I usually take Advil PM in order to get a good nights sleep, but last night I forgot to. Just as well I suppose considering Kyle needed help.

The bathrooms. We have been in here probably at least ten times now, and in as many different rooms.  Every room (save one) is equipped with these filters over all the faucets including the shower heads.  Our guess is they are the equivalent of Brita filters so the water is clean for patients with compromised immune systems to bath or wash hands without worry of bacteria. Here’s the problem. These filters, they clog up within two showers and then the water flow is a trickle coming out. And that is if there is a descent water pressure, which a lot of times there isn’t.  Nor hot water, or a semblance there of. The current room has a puddle in the base of the tub that has rust in it. Apparently there is also a problem with how they are leveled so they dont drain properly.

This is a children’s hospital. Children of this day and age have electronic devices that rely on internet such as tablets, cell phones, laptops and gaming systems. I have seen them all in various rooms (one teen had the whole X-Box One with Connect set up).  The problem is, when the internet infrastructure was installed, they underestimated the demand on it so it is very laggy. They also linked all the nurses mobile computer stations to be wireless as well so add that to the demand of mobile devices of the patients and families and calling it mediocre would be a kindness.  A simple video chat with loved ones is just about out of the question let alone playing a game or streaming a movie or show.  Thankfully, Kyle has a bag of dvd’s he brings with him and is happy with that.

I see the hospital updating the grounds right outside our window. There use to be a mini golf course and they have chain-link fenced off the are and are dubbing it Phase 2 of the gardens.  The nurse and I both said, wouldn’t the funds have been put to better use for updating the bathrooms/plumbing/computer issues (just to name a few)?  I know i would have budgeted the money for those things other than a new garden.

One thing I do find amusing is there is a ghost in the room. The automatic feed paper towel dispenser just randomly feeds out paper towels without anyone being near it to wave a hand in front of it.  *insert twilight-zone music here*

On an up note (I did say last night I would try) Kyle is in good spirits. My mother is coming to visit with belated presents for him which he is entirely too excited about.  He is smiling a lot and eating cheese its like they are going out of style. Milk and Dr Pepper too.  He has made a request for mini powdered donuts as well.

I feel a nap coming on. I think Ill go give in before company arrives. If you’ve stayed this long dear readers, thanks for listening to my vent. It did help some. I will just be glad when these hospital stays are in our past and he is cured and recovered to his old self again.

Ciao

“Always Look on the bright side of life”

I will be the first to admit that I do not have the most optimistic outlook or attitude sometimes. Hell, a lot of times.  The last several years in my life have had many ups and downs and it seemed a lot of times, more the downward slope. It tends to make me always see things in a dark light and not in a positive manner.  I am truly working on it but it is hard. Today, is not one of the hard days thankfully.  I woke this morning here at the hospital and decided that Au bon pain-in-my-ass is not what I wanted for breakfast. Everything in that shop smells the same and the smell is starting to disgust me.  I went to the basement cafe to get some breakfast and when I walked in, the atmosphere just lifted my spirits. The speaker system was playing some Latin music that you just couldn’t help but dance to.  I didn’t understand a word of it (even after 5 years of Spanish lessons in school) but you just didn’t need to.  The staff were chattering away and some lightly singing the lyrics to the song.  Some of the staff I have gotten to know by first name basis in the last few months and the one sweet lady named Carmen greeted me. Her big smile and good morning brought a grin to my face as she chatted about how late she was there last night and early she was this morning, all the while dancing to the music playing over head. She asked about Kyle and then commented on my blue hair (yeah..dyed it to match Kyle’s in the back and sides at the bottom) and how it looked “totally fab”.  She really set my mood this morning making the day seem bright and positive. Kyle is doing well. His counts are coming up and he’s put about 8 pounds back on that he’d lost.  His mood was that of my ol’ Kyle who was always giggly and smiley and fun.  We laughed entirely too hard over a video of someone showing some Thomas HO Gauge trains and the eyes on one of the trains were going the opposite ways of what they should be and he just couldn’t stop laughing, which made me laugh even harder and brought me such joy.

Joy…a luxury I haven’t had a chance to experience in some time.

I have to say I was very worried about coming this weekend. Stress has taken its toll and I was worried I wouldn’t be a good Mom to Kyle. The hospital stays are hard on me too emotionally. Its so incredibly difficult to see your child suffering and know you cant do anything more than hold his hand or talk kind soothing words to him while he gets through all this horrific shit that he has to endure to get better. It is extremely hard to not cry in front of your child so they see you as strong and they take your strength and put it into themselves so they too can be just as strong and confident in their ability to get through tough situations.  I am not this strong all the time, or even most of the time. I don’t see myself as a strong person in this. I feel weak actually.  I’m told otherwise, but it doesn’t matter what anyone tells me, its how I feel.  I feel like i should be strong like the other mothers who never seem to cry over this. Who are just determined to get through it and go on to the next step to recover.  As i said at the top, optimism isn’t one of my strong traits. Lots of times being beat down emotionally over the years causes me to spiral. One small bad tiny seed will spiral me down until that seed has bloomed into a forest of negativity and weighty depression. And crying, lots of it.   But, today, there wasn’t any of that.  A good friend came to visit and brought me Pennsic booty that she and another friend picked up for me in their shopping travels.  The company was just lovely too as she regaled me with her adventures in our little medieval Brigadoon.  (sorely miss going..next year, for sure!)

Now, as I finish typing this entry up, the skies are darkening and the stars are beginning to dot the sky. Kyle has settled in for the night and I hear my knitting calling. I’ve spent time virtually with my youngest playing some Warcraft and I’ve chatted it up with my hubby…who i miss so much right now.   Today, I had no pessimistic thoughts.  Well, I cant say that exactly. One tried to get the better of me and take away the happiness I was feeling and i shoved it down swearing at it and grasped the hand of Joy in my head (You know..blue hair, gold glow..all bubbly) and continued on my task.  Today I call it a win. I beat back the blackness that so often takes control of my brain in all this that I am dealing with.

One day at a time. That is the best I can do. Today was a good day and tomorrow I’ll shoot for the same thing.

I call that a win.