Hi Everyone,
Thank you to those of you that read between the lines of these entries. We have been plowing through another difficult run with Corrine.
Corey has not been sleeping through the night. She is waking every 1-2 hours. When she wakes up she is disoriented and frightened when she doesn’t recognize our night nurse (Kim has been with us 4 nights for 6 months). She screams for me yelling “Marie”, “Mom”, “wake up”, “come get me”, “I’m really mad at you”, etc. It is unrelenting for 2-3 hours, four nights a week. Once I’m awake, I don’t go back to sleep. I try not to interfere with Kim’s attempt to settle her and most nights they succeed…truly earning her salary! 3 nights a week Corey can randomly sleeps 4-5 straight hours but as many of you parents out there remember, when you’re used to your child crying out in the night and they begin to sleep through, those are the nights you’re up waiting for the scream.
We have tried Melatonin, Valerian Root and Sleepytime tea hoping to solve this the holistic route. She is currently on a sleep medication but we decided to try Ambien to supplement. In true Corey form she responds the opposite. She not only is wide awake, she’s even angrier and if she does doze off she wakes with extreme night sweats. Needless to say, she’s off Ambien.
Our days have been difficult as well. Corrine has been argumentative, defiant, violent and boarding on her evil twin Raging Rachel.
We also have some concerns about Corey’s left side. It appears that the left arm and left leg are beginning to contract (stiffen up). This is not uncommon for TBI survivors despite regular exercise. However, she is losing some range of motion as a result of the tone. We are discussing the possibility of Botox shots so we hopefully prevent further loss of range of motion causing physical regression.
All of this is shadowed by our recent discovery that Medicaid is capping their out-patient rehab visits. We haven’t been denied or discharged yet, but we are preparing our “discussion” to argue their comparison of “maintenance” vs “progress for functional improvement” rehabilitation. The bottom line may come down to arguing the new law capping Out-Patient visits.
With the aforementioned as our back story, today was particularly difficult. Corey stepped in and out of her tantrums every hour from the moment she woke up. This afternoon at Bryn Mawr she was so outraged Natalie physically removed her from the lobby; I headed to the duck pond listening to her screams linger in the hallway.
As I exited the building, the air hit my face and released my tears. I walked the familiar path towards the water remembering the tears I shed during her inpatient days. My body, mind and spirit was exhausted as I sat on the bench, face in my hands, sobbing. Why is this our life? When will it get better?
From the distance I heard a salutation from passing strangers, “Have a Happy Easter”. I remembered it was Holy Thursday. I could hear the echo of Mrs. Grady’s voice, my 7th grade religion teacher, talking about Jesus in the Garden after the Last Supper. He was afraid; knowing what He needed to face the next morning, begging His Father to let the cup pass over him. Mrs. Grady taught me that in that moment Jesus was human, just like me. He was scared, angry and filled with the ‘WHY’ questions every human faces at some point during the course of their lives.
I wasn’t kneeling across a rock in a garden but I was sitting on a bench shedding the same tears of fear and anger. Silently screaming the questions that no one can answer or explain.
I sat quietly, concentrating on releasing the heaviness and started our conversation…
“I don’t know where You found the strength to stand up and walk forward but please help me” “Help me to release the heartache for my child”
“Help me to stay strong when I feel like crumbling; to stand and walk forward when I want to run away”
“Help me to pull it together and smile when she looks to me for confidence”
“Help me to help her through this time”
I can’t say I heard a response but I’m hoping the wind carried my words and they will be heard.
If I can impose, I know you all are praying for us, I am asking to lean on you as I stand up and try to continue to walk forward for Corey. Please add my prayers to yours this weekend, xoxo