MESSAGE FROM A MOTHER WHOSE 25 YO SON HAS EXPERIENCED A DETERIORATION IN HIS CONDITION
Dear friends,
I'm sitting here, at my computer, having read so many messages from all of you. Support for us about Dan. Support for Jen and Sandie. Thank you, all of you, more than I can ever say, and more than I can find the strength to write you all back individually right now. Just know I treasure every letter, every thought, prayer, tear.
Jen is being moved to Hospice as I write. She does not want to move again, but Sandie has told her that she is going to a Whirlpool Therapy place because Kavanaugh Home has a whirlpool. Jen likes that. As we spoke on the phone, they were trying to get handfulls of balloons into the cars, balloons that will decorate the lounges and the rooms of other residents. Everywhere they go, Sandie and Jen always think of brightening others' days. And they have battled so tenaciously.
As for Dan, he is cheerful, having hiccups in rapid succession, but dealing with it. His speech sounds better today, maybe because of the decadron [dexamethasone] increase. Tomorrow, we have his neuro-oncology appointment to discuss the MRI results and the next steps. I have not been able to eat today. Trying to get ready for school starting on Tuesday. Trying to function. Trying to keep calm. He is there already, in the peaceful stream; I am working on getting my feet wet. :)
It just seems so bizarre so me, that all of this has come on for Dan so quickly while Jen is experiencing such turmoil, too. When I visisted Sandie in early August, I shared with her Dan's increasing difficulties with language and his "slowing down" in getting around, but I never thought that it would escalate as it has, that his MRI would be so horrendous, that we would be thrown into this maelstrom like we have. Jen and Dan were diagnosed two months apart in 1999, May and July, with the same kind of tumour, aa3. They were both in their early twenties. Young, vibrant people. And since their diagnoses, they both have accomplished so much, been such inspirations ... we both believed, Sandie and I, that our kids would be the some of the ones to beat this thing. Hope is beautiful.
Yesterday, I kept thinking about that word. How we had grasped onto hope when we first found out. How we had needed hope. Lived it. Received it from you. Preached it back. Now both of us are facing these tough times, Sandie so much more than me. Somehow, today, it is all so much more relevant, "in our faces" and real. I'd been told this day would come. I had come face-to-face with it, wailing, when I had first researched brain tumours and joined the list. I had cried so often and raged against the young ones dying, the fathers, and mothers and children. It gradually sunk in, though, that someday there would most likely be progression, that someday, most tumours of this kind come back and deficits would hit more and more ... and yet, despite all the evidence, I didn't really believe it. I guess that's how it should be.
There is an amazing peace that comes. I have no idea how. And who knows, with tomorrow, it may change. But for now, I thank God for his mercy and grace. I truly can say he has given us so many blessings. I vividly recall telling my classes of high schoolers during a novel discussion that the very worst thing that could ever happen would be to lose a child. That that would not be bearable. The ironies of life. I may be called to do just that. Bear the unbearable. My stomach is fluttering, but I do have an acceptance of whatever comes.
Someday, there will be a cure for brain tumours. Everyone here is working so hard for that. And people on this list will be in the forefront and will benefit from the discoveries. We hold onto that belief. Many miracles have already happened and will continue to happen ..... people who defy the statistics and who do beat it, and people, who although they lose their earthly lives, gain beauty of spirit and wholeness of soul.
"Do you ever get used to life?" This is a quote from the mind of an 85 year-old woman approaching death in "The Stone Angel", a Canadian novel by Margaret Laurence. The line has burned itself into my mind. No, you don't ever get used to life. But life is good. Life is so good. What a blessing it is to have lived and loved and, yes, even suffered. For it all is a part of life.
I wish for us all life and blessings.
Jan K, mother of Dan Steven, 25, musician, singer-songwriter, poet, lover of people, dx 5/99 aa3, left frontal/parietal, 7 rounds PCV, 6000 cGys radiation. He decided to live, recorded his debut CD "Beggars and Kings", busked on the streets, bought coffees and food for anyone he met, gave away his Christmas presents to street persons, hiked to Newfoundland in a hippie bus, embarked on a pilgrimmage to Israel, lived "independently" for three years ... now having trouble talking, walking, moving, thinking .... but at peace with God and himself.
Posted originally to the US-based BRAINTMR List on 29 August 2002. Reproduced with permission.
Jan Klooster, mother of Dan Steven. E-mail address for Jan: rklooste@CIACCESS.COM
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