It was a rough day for our girl. I’ve called the ENT for a follow up appointment. We’ll be going back in on Monday. Corey’s mouth pain has intensified. We’re almost 90% sure it’s neurological and not clinical so we may just be looking for ways to help her cope with her daily pain. Corey finds comfort in placing a cloth in her mouth. It helps her absorb the additional secretions. She seems to be more comfortable with the cotton cloth verses the towels she used to use. I’ve begun to cut up her brother’s old T-shirts. Every time she gets upset and clamps down on the cloth I tease her by saying; “that’s it, bite your brother”. She instantly giggles and it breaks her response. I haven’t told JohnPaul that this is our new approach yet…I’m hoping he’s not offended!
When Corey has difficult days like today I can’t express how painful it is for us to watch. We feel helpless knowing that there is nothing we can do to “fix” it. A day like today seems to consume every thought and action. It’s difficult to pull out of the moment, remain objective and keep everything in perspective.
Just when I feel overwhelmed and begin to lose my stamina, I experience what I call a “God wink”. Something happens that either clears my perspective or rejuvenates my spirit.
We had a special visitor tonight. Ashley our ICU nurse came to spend some time with us. I was preparing Corey for her shower when Ashley arrived. For those of you that have been following our pages from the beginning you will recall that Ashley had spa nights with Corey in the ICU which included dance parties and singing!
We moved from the ICU on 10/22/10. We kept in touch via carepage, text and email while we were living at Bryn Mawr. Ashley first came to visit shortly after we moved home 6 months ago. Tonight Corey greeted her with a smile, “Hi”, “how are you” and when asked how she was doing she responded; “good”. Ashley couldn’t help herself and reached out to hug Corey! She was amazed.
We gave her a tour of our completed renovation and then we all went into Corey’s bathroom for spa night. Naturally the IPod was turned on and Corey’s disco finger started dancing. Ashley loved that tonight Corey was singing and dancing with her. She was very impressed that Corey helped me put on her pajama top, brushed her own teeth and when we transitioned her to bed, she not only pushed up to a standing position, she took a step back as she pivots from the chair to the bed. Ashley was also shocked to see that Corey was taller than she was! She joked that she doesn’t look that tall sitting in her wheelchair. As they stood next to each other, Corey reached over to give her a proper hug.
We tucked Corey into bed and it was a matter of minutes before she fell asleep. That gave Ashley and me some time to catch up. All she could say was ‘what a difference a year makes’. She shared her memories of Corey and our family during those first three weeks. She reminded me that we were ecstatic that Corey not only opened her eyes but seemed to be tracking the nurses around the room. She couldn’t move any of her limbs except when prodded with a needle to test her reaction to pain stimulus. She refused to open her mouth and would grind her teeth especially when Ashley tried to do her mouth care. We talked about her negative scores on the comma recovery scale and just how low level her injury was.
As she spoke to me, I not only listened to her words but watched her eyes. She was recalling the pain, worry, fear and shear angst at how tragic her condition was but at the same time her eyes tearfully lit up amazed at the healing that has occurred. Ashley shared that the ICU staff only sees the acute stage of a tragedy. It’s rare that they get to see what happens to the person a year later. She couldn’t wait to go to work to share Corey’s progress. Before she left she hugged me, thanked me for keeping in touch and shared that tonight reminded her of why she chose her profession…”it’s for the miracles we get to be apart of”.
Tomorrow is my birthday. Ashley’s gift to me will be to stay with Corey so I can have dinner with JohnPaul and Caitlin. A birthday is a special day. We often get gifts for things we need or want. Tonight’s visit reminded me of the all the gifts I’ve received over the last year. It’s not just the kids; they also include my friends, family, nurses, doctors and therapists. I truly appreciate and love the community that has become my family.
The kids have asked me what I want this year for my birthday and for Christmas. Truthfully, I want Corey to have a full recovery. I want JohnPaul and Caitlin to continue to be happy with their friends, school and work. I want to continue to spend time with them and be apart of their lives sharing the good and the bad. I can’t think of anything I need! xoxo