I have struggled since November with some sort of elusive illness. It has attacked my left shoulder and elbow. It has gone into my chest and back on that side. It has since traveled to my other shoulder and hips sometimes. It is an agonizing pain that does not let up. It hurts me to my very core and I have limited life function since this has happened. I have not been able to type or relay the massive miscommunications turned into personal vendettas this has caused. It has been a mess. A real mess. Of personal relationships I did not understand the misfirings of and vindictiveness I never fathomed. I have an unknown autoimmune disease.
John is doing wonderfully. I need to interrupt my 40 -50 apts trying to get into Penn medicine to meet his new oncologist. Tammy Kang has relocated to Houston after her fellowship at CHOP. It is ok. I need to figure out his next MRI, but after I take a break in Texas. It has been a long hard ride. I need to spend time with my father and my daughter.
The kids are wrapping up school and today I am reminded, God is FAITHFUL……three years ago today we went strawberry pickin with friends and this happened. Three years later after a diagnosis on one of the most aggressive brain cancers on earth…..we outlived the 3-9 months sentence, by three years…..Life continues on. John has completed the first grade with a modified curve. He needs to catch up in reading the most. He is still at a kindergarten level of phonics. I found a free official reading program that he gets for free because of his terminal illness and missing school. I also have Ann Lewis to help tutor him through the summer so he can catch up. The toss up is whether he stays in Mrs. Gross’s class or moves on to Mrs. Tower’s class. His report card will read second grade regardless because of his IEP. He needs strategic location on the first floor of the school. He has hypotonia, which means he has generalized muscle weakness. Up and down those stairs is a hot mess 6 times a day when you have a leg brace and you can’t feel one foot. We must allow him to make the choice based on his modified social status. He needs to feel he is learning and with his peers. I will allow him to make this decision.
My best friend since I was in the single digits bought him a touch screen computer for school. It is pretty damn awesome. I never planned for education. I never saw John John alive for three plus years past his diagnosis. Praise God for even in my unfaithfulness…..HE is here with us always. God shows up even when we think HE will not. John John is provided for by Gods grace and Julie and Scotts generosity. John can catch up with his reading through the summer.
I will leave you with some photos of field day. You will love them. The kids had a great time. Thank you God for a school that wanted my kids. We are a hot mess, a beautiful mess for sure…….
With love, Faith