After the last Riley trip I hit a new low. I felt defeated, helpless, and exasperated. I cried off and on the whole next day. I questioned what I should be doing and if I should quit working altogether. It may seem drastic, but Gavin’s needs keep increasing and it is so difficult to manage it all. Applying for financial help, dealing with insurance, paying bills, scheduling evaluations and appointments is a part time job. Not to mention how many days I miss each year going to all of these things. We do our best to pack as much into one day as possible, but it is just too much. I don’t have a job that is easy to come and go from.
I am also tired of people telling me he is “fine” or “looks fine to me”. They mean well but have NO IDEA how damaging this is to me. He is not fine. The doctors give me bad news all of the time. I am the one who has to hear him scream in pain, watch him limp, struggle to put on his compression sock everyday, deal with bleeding from rectum and leg, and worry about his future. He told me the other day it was “God’s fault. He made me like this. Why did he do this to me?” It broke. my. heart.
I am not a negative person by nature and feel blessed by so many things in my life. Sometimes it is just too much.
After a lot of prayer and fighting through, I am obviously going to keep teaching right now. But I am listening to God and open to his plan for me. I want to give my all to all areas of my life and I feel like I am failing them all. Only HE knows what’s best for me, and if he leads me in a different direction, I am open to that.
As far as what’s coming up…
October 2nd: EVSC arena evalutation (Speech, PT, Psych) at 8:00 and then head to Riley for CT with contrast at 3:00.
October 6th: Three in one surgery at Riley (Vein embolization, Colonoscopy, Schlerotherapy or whatever is needed to fix gi bleeding) Thankfully, they were able to get them all in the same area of the hospital instead of the original plan of transporting him from one OR to the next around the hospital while still asleep. Scary!