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.

Exhaustion, Depression and Stress..OH MY!

I opened Facebook this morning and saw a stunning picture of friends in front of glorious scenery on their vacation abroad and while I was so happy for them that they saw such wondrous views and had these fabulous experiences and OH MY GLOB that waterfall was just breathtaking….I burst into tears.  Not really the reaction I was expecting to come from myself. Quite shocking actually. Admittedly, I was envious of them. I adore them completely, I have no ill feelings in even the slightest towards them and their various trips they take I live vicariously through their pictures grinning from ear to ear and vowing I will go there someday, but I am envious.  I am finding a lot of late, that i am envious of what everyone is doing, the lives their living. They are living…..LIVING!! I feel like I am barely surviving each day and each day it is a struggle to do that.

The old saying that goes something along the lines of three steps forward, two steps back (or however it goes) I think is going to be my new mantra. When I feel like I get a handle on things, something trips me up or shoves me back a bit. This morning started with challenges (like waking at 3 am and not getting back to sleep) and try as I might to not let it set my mood for the day, it did.  It started with something as small as my son not brushing his teeth…for several days because he never unpacked his overnight bag from a sleep over. I mean..come on!! Yea, I know..he’s 12 and I should know better. I guess I underestimate my kids in hoping they will do basic hygiene every day without me having to remind them to do it. *smacks forehead* How silly of me!  Lesson learned: 12 year old boys don’t care nor think about these things. (Note to self: Start taping reminder notes to their mirrors and computer screens) I became very angry over this situation. Probably more so than I should have. I yelled. He cringed. The puppy cowered. I stormed out to go to work feeling like worse Mom in the world.

Now, today was to be the first therapy appointments for he and I. Being majorly stressed at all that has happened and is happening in our lives of late, I was very much looking forward to it. I should have known that it wouldn’t be that easy, it never seems to be in my life.  Mind you, i worked for a couple weeks with a case worker through my insurance company to find the right therapist that would fit for both my son and I. They took my insurance as well.  This morning at 8:30, the therapy office called to tell me my son’s insurance was canceled at the end of January and they couldn’t find me in the system. I felt my heart skip and start to beat faster and I think my eye even started to twitch a little.  After a call to the insurance company to verify we were still there and active, which we were, I called the office back. It was then they said they did find us, but, as it turns out, they don’t take the plan type that we have with said insurance company. However, they could set up a private pay price so that I could keep the appointment.  At this point I can now feel my pulse in my neck and temples and the angry tears started brimming in my eyes and I believe the next words I said were “Are you fucking kidding me!?” came out of my mouth and the lady uttered an oh my seemingly shocked to her foundations that I had the audacity to swear. Can someone please tell me why these offices can not check out the insurance eligibility prior to the few hours before the appointment?!  I promptly told her to cancel the appointments as I would not be keeping them since they didn’t take our policy and I certainly don’t have the funds to pay for their “private pay” fee.   Weeks communicating with a case worker named Johanna at our insurance company via email and phone calls and she couldn’t even tell that this place didn’t take my plan type?! Isn’t that this case worker’s job? To confirm these little details before saying Go ahead and make an appointment?  I called the insurance company back yet again and well, she couldn’t answer my call right now and would get back to me.  Right after that, the hospital calls to say I have to come back down (after I just left there yesterday afternoon from being there this whole weekend) so that they can train me on how to run a pump for an NG tube for feedings.  I was there..for four days, and not once could they have shown me this while I was there and they were doing them? After being told earlier that a visiting nurse would come teach me at my home, I am now told I HAVE to come back down and do a 3 hour drive because they do not trust outside visiting nurses. There is now a red haze on the edges of my vision.

I feel utterly beaten down, deflated and broken. Thankfully I am at work alone right now because I sat at my desk here and bawled in complete frustration and anger for quite some time. When that happens, the mind wanders through the strangest things and you reflect on a hundred things that have nothing to do with the insurance company but only further you’re growing depression over the situation and what life has thrown at you. My brain decided to reflect on my missed vacations due to health reasons with my husband last year..then this year with my oldest son’s..not to mention caused us to post pone our wedding and cancel a honeymoon all together. It reminds me of how poorly I feel i am handling my life right now which consists of work, trying to maintain the house and the rotating hospital stays for treatment or pop up fevers and try to raise another child who is also dealing with the stresses of a sibling with a major illness and acting out accordingly. Oh yea..and a puppy who seems to be have an endless amount of poop and always has accidents no matter how many times we take him outside to do his business. He reminds me of one of those play-doh extrusion toys!   In one end and out the other almost immediately! My brain decided to remind me of just how much life I was missing and all the fun I was not having. All the life we are not living.  I feel like the most selfish person in the world right now. I feel like I should be able to push all this aside and be that good strong person and focus entirely on his treatment and be that positive, uplifting supermom i should be. I am not. I feel like a failure on top of the extreme selfishness.

I know..this isn’t forever. I have had multiple people state that to me to try to help me to see the light at the end of the tunnel. FYI: It doesn’t help.  I know that when he is cured and back to his old self this will be something to reflect on as a struggle we got through and move in with our life.  But that time is not here yet. There are still months ahead of us in going through his treatment to reach that end goal. Hard, tough, stressful, painful months. We are barely half way in all this and I pray I can make it all the way through mentally and hell..even physically. I am trying to take it one day at a time so as not to feel overwhelmed, which is a monstrous feet in of itself. I have a feeling I will end up on some type of anxiety/stress medication and almost definitely something for blood pressure before the end of all this. I am fried.

I did warn you at the creation of this blog it wasn’t going to be all rainbows and unicorns and sunflowers, right? Right?!