When we came home from the hospital, Elliot was still on some very strong pain medications which clearly have numerous side effects: constipation, tiredness, unawareness of surroundings, agitation, etc. Needless to say, we felt as though we were walking a tight rope...trying to keep him comfortable but also trying to cut back on his meds in order to eliminate some of the side effects. I had no idea it would be so difficult to balance everything...it was a complete guessing game. Though Elliot is a great communicator, and has been from an early age, he absolutely would not tell us anything about his pain. He denied any pain from the very beginning of the surgery recovery, and has been known to that prior to this whole experience as well. So, if he appeared uncomfortable, we had no idea if his incision hurt, if his tummy was uncomfortable from the constipation, if he simply didn't feel good from the medications, or if he was just frustrated that he couldn't do things that he was used to doing.
Not only was Elliot likely frustrated, we were as well. At the beginning of this past week, I felt as though I had reached an end to my strength and just wanted to be weak. I wanted to cry (and I did quite a bit). I wanted to acknowledge that this was hard. I wanted to feel sorry for myself. I wanted to stay in bed all day. I was just tired of being strong. So, at about 1:00 Monday afternoon, I called Dan and cried and told him how hard this was and that I didn't feel like I could hold up all day. In true Dan style...understanding, loving, supportive...he came home, told me to go lay down and nap with Elliot, and took care of Julia and everything else around the house. Elliot and I slept for THREE HOURS. I even slept right through my workout and woke up around dinner time. I felt like a new person...revived and ready!
On Tuesday, a friend came over and helped me out for the day. On Tuesday night, dinner was delivered by yet ANOTHER friend. On Wednesday, I was relieved for the afternoon when a friend picked up Julia and brought her to her house for the afternoon to play with her daughters, AND she brought two meals. On Thursday, my niece and her boyfriend came and played with the kids and kept me company.
Why do I tell you all these details? Because it's important to me to express how much your support means EVERY DAY! So many people tell us how strong we are...that they can't imagine going through something like this, but to be honest, we could never do it without our amazing support system. Please know that every single effort to support our family helps us get through each day with more peace and more hope. We are so grateful!
With all that said, God gave us light at the end of yet another long tunnel. Yesterday was a huge turning point around here. Elliot made it through the entire day without any medications other than Tylenol, and he was showing us his "old self"...silly, playful, and active. We rejoice in each and every moment that reminds us of the true spirit that lies beneath his pain and suffering. In those moments, we are assured that our little man will return in full force one day very soon.
As for now, we prepare for the next stage: post-surgery chemo (12 weeks) and radiation. We start chemo on Monday and radiation likely on Tuesday. We don't know specifics of radiation, but we're hoping for minimal treatments due to the amazing pathology report, which, God willing, would be around 6 radiation treatments total. Once radiation is complete, we feel that many of the unknowns will be out of the picture, and we have every intention of cruising through the remaining chemo weeks just as we did prior to surgery!
I will leave you with a video from this morning, one that hopefully puts a smile on your face and some peace regarding Elliot's current state of being!
(Video doesn't seem to play on smart phones or tablets for some reason...I've put the video on my Facebook page)
His serious furrowed brow breaking into a smile makes me smile!! Love it.
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