Listening to Music and My Pain (Update for Wednesday, January 26)

Last night I played a song for Sam, Leonard Cohen's Hallelujah (a song both my mom and I love, and that she recently posted for Sam). After he heard it, he wanted me, him and Dan to take turns picking songs to play. Sam picked "Famous Blue Raincoat" by Leonard Cohen; "A Case of You," by Joni Mitchell; "Song for Zula" by Phosphorescent (he said because his sister loves this song); and "A Whiter Shade of Pale" by Procol Harum. Dan picked songs by Kenny Rankin and John Hiatt, and I picked songs by Art Garfunkel, Bonnie Raitt and John Prine. The point of this is that Sam's long-term memory is intact. He made need some reminders and hints, but then he remembers. His short-term memory will be the focus for his therapy. 

We thought Sam might be transferred to rehab today. So, our plan was for Bridget and I to go shopping to buy Sam a recliner for when he returns home (thanks to my mom and stepdad), and while we were shopping Dan and Sam were going to walk downstairs and get a banana smoothie. Sam said he didn't want to go to rehab today, because he wanted to get a banana smoothie with Dan. Oh my heart.

He was NOT transferred to rehab today, so one more night in Acute Care. He took a shower today, and when he got out of the shower and saw himself in the mirror ... scared and emotional. Seeing him upset set me free, and I cried and told him it won't be long until the cranioplasty, and it would be OK. While Sam and I were both upset, Bridget was soothing him with, "It's no big deal. Remember, I told you? You'll be good as new soon. It's OK. I love you." Oh my goodness, Bridget. Where does she find the fortitude? She is right, of course. He IS getting better each day. 

Bridget, Sam and Molly - December 2015.

Because they thought Sam was leaving today, they cancelled his therapies. However, his speech therapist came by and said she only had one question for Sam, "What is going to happen when you transfer to the rehab facility?" and he said, "I don't know. I guess I will have lots of opportunities." After that, Sam, Dan, Bridget and I took a long walk all over the hospital. We looked at the art, and out the windows toward downtown Portland. At one point, Sam stopped and seemed to be reading something (a testimonial poster on a wall) about a girl overcoming a traumatic brain injury. I said, "She came through it." And he said, "I just can't read right now." My son, who loves nothing more than reading, can't read right now. And, it is not his fault. 

Whether Sam is getting a shot, a drink, an IV, meds, dinner, bed linens changed ... whatever it is, he is so polite to the caregiver. He says, "thank you" about 50 times a day. Both of my children have always been polite and grateful. One time, when Sam was little, he went to a birthday party, and when the little boy opened the present from Sam (which I had, of course, bought), he acted ugly, threw the gift down and said he already had one of those. Of course, it hurt Sam's feelings. I felt terrible, but I took it as a lesson learned. I told him, "You know how that made you feel? You don't want to make others feel that way. Always say 'thank you' and be grateful even if you have 10 more at home." Both he and Molly remembered that lesson, and they have always been the BEST at saying "thank you" no matter what the situation. 

A card for Sam. 

Today, Sam's sodium level was 137! A prayer answered. But his headaches continue, as you might expect. I want him to have some relief from this, but those damn headaches continue every day. His headaches were bad tonight, so low lights, pain meds, Tylenol, quiet. Anything we could do to help. And, his cough is back. It's just so frustrating. 

Below are Sam's actual injuries and surgeries outlined. It makes me physically ill. 

• Subdural hemorrhage
• Subarachnoid hemorrhage
• Intracranial hemorrhage
• Cerebral edema with hyponotremia
• Skull fracture, temporal
• Removed left bone flap
• Scheduled for cranioplasty (return left bone flat) within 4 to 6 weeks

Today, as with most days, it's overwhelming. I'm thankful for Dan and Bridget or I just might go crazy. I can't understand why this has happened. I just can't. There is no making sense of it, and people have told me, "Don't try." I've always said that I believed in fate, that I thought things happened for a reason. Now, right now, I believe I was naive. There's no reason for this, and I can't see how good can come of it. Maybe I'll see or feel that one day, but not today. I've mentioned to my family that I feel like I'm being punished, like I've done something wrong. I thought my baby girl being diagnosed with epilepsy just a few years ago, something that changed her life and makes me fearful for her safety every single day, would break me. Then this happened. It has knocked me to my knees, made me question everything. When your children are hurting, through no fault of their own, it's the worst kind of frustration.The worst kind of pain. You here people say, "If I could change places with him, I would." I get that now. I would in a second. If only I could. I cry to the heavens every day, what have I done? I'm sorry! Why am I being punished? Please don't hurt my children anymore! Please God. Please. I'm begging for some peace. The pain is raw and real, and I'm praying for comfort. 


With all of my heartache, I'm still thankful for you. If you are reading this and thinking of Sam or praying for Sam, I'm grateful to you.