One of the traditional rituals for our family is Christmas cards, gatherings at friends homes, too much food, Christmas eve and gifts with Dad's family, and the same on Christmas day at Mom's. The Christmas trees are up, the houses both decorated inside and out, but what to put under the Christmas tree next the elephant that's already sitting there? Damn.
I was talking with Madi's grandmother last night and asked her what is she thinking about giving Madison for Christmas. There was silence. Exactly, I said. That opened the dialog about perhaps reevaluating our ritual this year. Yes, we will gather if/as Madison is up to it, but it won't be the traditional of gift-giving and celebration this year for our side of her family.
It's been a turbulent week, highs and lows. Madi's pain increased dramatically on Sunday, so base pain meds (long acting) were increased. With that, pain decreased somewhat perhaps avoiding a hibernation mode slumber, but the toll on her for the increased meds is reduced energy, strength, and sacrificing some stamina.
Looking back: In August Madison spent close to two weeks in the Simi Valley hospital. Yesterday she wanted to thank the nurses there, and remind them of the imprint they leave on patients who they may never see or hear from again. With a thank you all card and two giant boxes of cookies, Madison went to the second floor nursing station via wheel chair. Two nurses looked like they were just a few short breaths away from crying... so happy they made a hospitalization stay so tolerable for Madi. Then they tried to take a breath and the tears flowed, so happy they were able to make an unthinkable hospitalization/situation so comforting and compassionate.
So hows Madi now? Unfortunately this week she's become increasingly weaker needing higher doses of pain meds. Yesterday she could not easily get from car to wheelchair without assistance, but it was that important to her that she thank the Hospital staff personally.
We hope and pray that Madi rebounds from this episode of increased pain as she's done in the past, and only time will tell, so she's learned to take everything day by day, Yesterday Madi mentioned feeling like she's at a birthday party, but her Father keeps reminding her that she needs to be leaving soon. That sounded amazingly insightful and beautifully sad at the same time. She knows she'll see us all again. Yes we will all miss her, but the reunion in heaven will be glorious. We will never stop loving her and I know she'll never stop loving all of us.
The Jones Family