“We do not remember days, we remember moments." - Cesare Pavese
This is one of my favorite quotes and this is one of my favorite days. Lets see, where to start, let's go easy first...Today was my final day of OT (occupational therapy). I have made enough improvements to move on and with all the work I do at home as a Mom, I stay busy enough to keep up OT -like behaviors. The funny thing about this situation is that when I first met my OT, I felt that she was really abrupt and I misconstrued her words, which devastated me. So I thought, why not let her get to know the 'real' me. Each session, three times a week, for months, I showed up to therapy ready to work hard with a smile on my face. She commented to me often that my positive attitude was odd to her and then I laid the big guns down... I told her I thought there was a reason for everything. She asked what the reason for my brain tumor had been, and I simply replied, I don't know, but I do know that God is in charge of it all and I have already learned so much. She seemed astonished by my answer and often asked in later sessions if I was always 'so happy.' At one point hinting that I might be delirious. I would just respond with 'why ask, why me... why not ask, why not me?' I have so much to live for and am grateful for so much. There are many lessons for me along this path and I know God is using it for His purpose. Although we developed a good relationship, I am glad to check that off my list.
Swallowing still goes well... people often ask.... "well, are you swallowing?" It depends, what is your definition? If you mean, 'can I just sit down and eat a burger and fries,' then the answer is no. If you mean 'you are not swallowing at all,' the answer is no. You see, swallowing is a complex process that we are born with. You hopefully will never have to learn it. Each time you put something into your mouth it can go two ways - once to the esophagus (where food goes) or to the lungs (where you breathe). In order for this complex system to work the food/drink must work appropriately in your mouth, travel down your throat and into your esophagus, a tiny tube that expands for the amount of food/drink you have sent down. You have to have your soft palate rise, your vocal chords close, your epiglottis flap... it all takes seconds to ensure you do not aspirate (what we call - having it go down the wrong pipe) or choke. Because of my inability to swallow, I aspirate daily or multiple times daily. After my surgery, my left vocal chord was paralyzed too and my soft palate would not rise. Although I desperately need all of this to work to swallow, I also need it for speaking. So back to swallowing, when I am monitored by my ST (speech therapist), I attempt to swallow items the size of a pea. You start small then work your way us. Yes, I have successfully swallowed some stuff to include hot fudge, pringles, carbonated beverages (i.e. soda), soup, and much more. Sure it is while before I get to enjoy a yummy meal, but for now I am making progress and will not accept not swallowing as a defeat.
The final thing and the SUPER PRAISE GOD is - I do not have VHL. Yeah! I am so excited. VHL is a genetic gene that carries tumors through your body. A hemangioblastoma (my tumor type) is one of the predictors, along with tumors of the eyes, spine, and kidneys. It is called Von-Hippel Lindau Syndrome. Because I did not test positive, I did not pass this gene onto my children, my biggest concern. At my 6 month mark (next month) I have follow up MRI (head) and EEG (seizures). I also visit the eye doctor again for my double vision and to see whether or not I need eye surgery, which if you know me well, I hate to have people near my eyes. I have given it all to God to resolve in His manner and I am grateful that He is willing to take the reigns.
For now I continue in PT (physical therapy) and ST (speech therapy), thankful for all that God has done for me and I hope through me.