Wednesday, November 7, 2012

Return to the land of the living...

Wow, life as we know it can disappear pretty darned fast on a body!

Jerry has chronicled the day-by-day since I was diagnosed on 10/19.  And yes, I know I said this would not be a cancer blog, but a blog about being a parent (that would be me) of a dependent adult with disabilities (that would be daughter Kelly, aged 28 with Down syndrome) approaching the later years.

I said in my last blog that I saw this part of the journey as being an appropriate time to begin in essence transferring some of Kelly's dependency to her sisters, nieces and nephews, her boyfriend, and the community of Down Home Ranch.

I am also thinking that it is time to begin actively enlisting the churches our Ranchers attend in this phase of their lives.  Not all our daughters are active in a church, or believers in the strict sense of the word, but all were moved and comforted by the anointing for healing ceremony Fr. Larry conducted following Mass the day before surgery.  We need to take the lead on ensuring that when our Ranchers have life-altering events happen to them that their church family is there in a meaningful way for them.

We've talked all this over with older (we call them the "grandsisters" since they are 16, 20, 2nd 24 years older than Kelly!) sisters Janis, Martha, and Carolyn.  We carefully arranged her first post-surgery visit for the Tuesday afternoon on the day following the operation.  Alas, she and Sterling arrived just at the same time as the beginning of a violent attack of nausea and vomiting.  This was not something I could fake my way through, try though I might.

And so I suspect things will be bumpy all the way through. Kelly appears to be handling things well, all things considered.  As we approach the chemo stage and the changes that will occasion, we continue to plan to help Kelly adapt.  Tomorrow I will work on a social story about what will be happening over the next few weeks.

Sister Janis will come with us and Kelly to the first post-surgery conference with Dr. Smith, to meet the woman who is caring for her mom, and we will all be on the same team.  We'll take her to see where my chemo treatments will be so she will have an accurate picture.

Like most people, Kelly hates uncertaintly, and sadly, we can make no guarantees except this: Whatever happens, however things turn out, she will be loved, and supported, and cared for.  We will pay her the respect due a full, functioning member of this family, handicap or no.

My youngest daughter is not less than anyone.  I have witnessed the same struggle to mature, to be courageous, to grow in Kelly as in each of our amazing other daughters.  It has been an honor to be her mom, and if I have my way, will continue to be for years to come.


UPDATE: Jerry originally posted on CaringBridge what we first believed was my diagnosis, ovarian cancer.  It actually turned out to be ovarian/endometrial cancer, with an excellent prognosis for cure.  I have been stunned by the outpouring of love, cards, gorgeous flowers, visits, phone calls, emails, etc. over the past week.  I have reconnected with friends from 40 years ago.  It is not hard at all to see the blessing in these hard times.

Thank you.

1 comment:

  1. Judy,
    So good to read you on line again. My prayers continue with you, Jerry, Kelly and the rest of your family.

    Welcome back!

    I still hear Kelly saying at the Gala "I was the inspiration." Well, she's had a good teacher. You are indeed an inspiration!