Hi Everyone,
We were unable to go to Bryn Mawr today; instead we took an afternoon appointment to see Dr. Brown. As we’ve mentioned in prior writings, Corey does not sleep through the night, however, the last month has been extremely difficult due to a feeling of ‘urgency’.
She literally is waking every 30 minutes asking to use the bathroom. We are not sure if her frequent requests are due to short term memory loss or if there is in fact a legitimate clinical reason. Regardless, she is not getting a sound sleep which is causing a host of additional issues including immediate memory loss and a shorter fuse for her tantrums. She’s exhausted!
Dr. Brown would like her to have an ultra sound and see a Urologist as soon as possible to rule out a number of possible conditions. Some of which could be directly related to nerve damage and/or residual neurological sensory damage from the accident. It is not uncommon for the brain to incorrectly rewire certain signals during the healing process.
The lab work for the pituitary tumor has come back. Dr. West, the Endocrinologist, has requested an infusion test. The process will take about 3 hours. They will draw Corey’s blood, wait 15 minutes, inject a serum, wait 30 minutes, inject another application, wait 1 hour, withdraw more blood and repeat. Dr. West and Dr. Yalamanchelli will consider the results in order to decide their next step.
We received a call back today from one of the resource line families; the mother of a 38 year old man. His accident was 12 years ago. Her plea, “is there someone or somewhere out there that might help my son with rehabilitation so he can continue to progress”? Like so many survivors he has come a long way but has a very long way to go. His mother has taken him to several specialists. Unfortunately, their recent evaluation didn’t provide the direction she was looking for. In fact, it was devastating.
Her son is now standing using a walker with maximum assistance. His feeding tube has been removed. He has begun to talk and can use a “speller” when his family needs help “hearing” him. Unfortunately, he still suffers from spasticity (muscle cramping/toning). Their appointment kept them “waiting” for more than 2 hours. Once the specialist had an opportunity to meet with them, the young man’s disposition had crashed and his tone was exasperated. The nurse that accompanied them took the young man back to the waiting room so his mother and the specialist could discuss the eval privately. When mom asked, ‘so what do you think’, she wasn’t prepared for his response. The ‘specialist’ replied, “Let’s put it this way; you played the lottery and lost”.
Fortunately, the BIA has additional resources to offer this woman’s son but the ‘specialists’ response not only made me gasp; it terrified me. After we hung up my fear brought dark visions of the forbidden questions that I keep locked away in the corner of my mind. What if we have to make that call in 10 years? Before I could continue this dark stream of consciousness, Corey reached for my hand and brought me back asking me what had happened. I was honest with her about the injuries and the experiences that this and other families have as they live with their injury.
She was silent for a long time when she looked at me and said, “Mom you have to call her back”.
C – “We did not pick this, it happened to us”.
C – “She can’t give up on him”.
C – “He needs his mother”.
M – ‘What would you tell her that might help her’?
C – “Care and Time”
C – “She has to take care of him everyday and eventually, in time, it will get better”
C – “She can’t give up even when it gets hard”.
C – “If you quit it doesn’t make it better; it will just make you sadder”.
C – “Keep going is always in my heart even when it hurts”.
C – “She’s not alone and he has his mom”. “They are just like us”.
Corey’s face softened and she smiled with those doe like blue eyes. She radiates an energy that rejuvenates me. At that moment I wished the caller could see her confidence and be comforted by her calm presence. I was ready to keep going too.
How many other people feel they are alone can’t keep going or want to give up? Valentine’s Day is a few days away. We all have heard of Secret Santa’s; this year, let’s become Secret Admirer’s. If there is some one you know that may be going through a challenging time in their life, reach out, call to say hello, drop off a card or anonymous token of encouragement.
You have done this for us! Your visits, notes, emails, texts and letters to the house have been a source of strength especially on the hard days. I can’t imagine the last two years without your love, friendship and support. We need you and your contact reassures us you’re still there.
“Care and Time” ~ it only takes a few minutes to show someone you care but your “gift” will last a lifetime to the person that receives it, xoxo