Life's hardest lesson seems to be that we must always be struggling against our own limitations–emotional, physical, intellectual, financial, spiritual. I can accept that I must struggle with that, but it's so unfair that Kelly should have to, so now I find myself crying like a four year old “That's not fair!”
Two and a half months ago Kelly got a cavity that began to hurt. Since people with Down syndrome don't perceive pain as quickly as we do, by the time she did notice it had bcome quite painful.
We got it taken care of in short order, but then she developed a mouth ulcer, probably from biting her cheek while still numb from the dental procedure. She began to chew on the other side of her mouth while we treated the painful mouth ulcer, which took two weeks to heal.
After the mouth ulcer healed, she began to complain of “another one” low down inside her cheek. We could see nothing but “treated.” When she continued to complain after a few weeks we took her to the doctor. He said nothing was wrong.
The next week she was in such distress I took her to the ER and they thought she had a tooth abcess and prescribed antibiotics and Oxycontin for pain. No better, not even the pain.
We went to the dentist who said she had TMJ disorder, probably from stress over my condition (I am undergoing chemotherapy for ovarian cancer) and other issues going on in her life, and to use hot packs and Tylenol for pain relief.
Next we went to her oral surgeon. He recommended physical therapy, and we are now in our fourth week of that. It has helped more than anything, but still she suffers.
Most recently she began complaining of joint pain all over and developed some other bizarre symptoms. I immediately thought “autoimmune” and had Casey follow up with lab tests, which showed nothing much.
Yesterday she got day and night guards to protect against clenching and grinding.
When the pain is intense she cries and asks me, “When will the old me be back again?” and “Why won't God heal me?” And she can't comprehend that I really don't know these things, so I can't make any promises. This breaks my heart.
When my first daughter was born and the “bonding” hit big I was overcome by this sense that I would never be truly free again in my life, and my life was barely started (I had just turned 18). This was in 1960 and WW II was only 15 years behind us. The stories of what people are capable of doing were fresh in my mind. My Jewish grandfather's entire Polish family had been wiped out.
We lived under “the bomb” in a way people can't imagine today. Public buildings were labelled with large signs depicting the univeral radiation symbol and the words Fallout Shelter.
So any illusions that I could protect this baby were just that.
Still, I knew if a Bengal tiger came into that hospital room right then I would take it on in a flash. For that matter, I know that I still would.
Drs. Chicoine and McGuire stated at a workshop that there's empirical evidence that parents of disabled children live longer than parents with typical children. I've heard parents say, “We can never die!” in anguish over their inability to secure, absolutely secure, their children's future happiness.
In medieval and renaissance times, the artists often placed a memento mori in their paintings, a reminder that the viewer will someday die. (One wonders why in those times, with short life spans, plagues, wars and infectious disease unchecked, they felt this necessary!)
Jerry was 46 and I was 42 when Kelly was born. The first thing we confronted after her diagnosis with Down syndrome was the thought: Oh my God, when we are 70 and 66, she will not be graduating from Plan II at UT. She will still need so much help. She will still need us.
I think the Ranch, in a sense, is a memento mori and we parents have put our beloved children into its hands to keep them safe against that day. Last fall two of our Ranchers lost their dads, and this had a huge impact on many of the Ranchers, including Kelly. Right during that time I was diagnosed with cancer, and Kelly has watched endless movies of people with cancer and generally they don't make it.
I try to explain that they don't make movies about people who get cancer, get treatment, and get on with their lives. I try to comfort her in her distress.
I do what I can, but I can't slay this tiger, and it's a heartbreak.