Sunday, September 28, 2008

You Know You are The Parent...

Tammy, of Praying for Parker, put up a list of how you know you are the parent of a child with special needs here

I thought I'd put the rest of my list here, since as soon as I clicked Submit Comment over there, I thought of half a dozen more things to add.

You know you are the parent of a child with special needs when:

You are pulling a sled with your one year old, your three year old and your five year old, all giggling... the five year old is in the middle with the one year old held snugly in her lap, and the three year old behind her holding on tight to make sure they don't fall off...
and a stranger walks up to you and says, What darling twins you have! And the baby is adorable!

A new doctor asks you where you took your medical studies.

At appointments where a form wants you to list the medications your child is currently taking, you have your child pull out a file card, laminated in clear packing tape, that she carries on her person at all times, and ask the receptionist, "Can you make a copy of this to attach to the form? It'll take less time, and you'll be able to read it much easier than if I copy it out longhand." And you have them copy both sides because the other side has her name, and 'current as of...' with the most recent revised date.

Your child forgets to take her purse with her to her program one day. You spent all day half hysterical because what if there was an accident, and your child was not able to tell the paramedics about her special needs and what drugs NOT to give her? You decide to sign up for Medic Alert, and the relief you feel when you clasp the bracelet around daughter's wrist is all out of proportion to that small action.

You call your doctor on a weekend, and leave a message with the answering service. Twenty minutes later your phone rings. It's one of the partners, and he says, "Tell me what's up." You list the symptoms, cough productive of green sputum, temp of 99.2F, lethargy, whinyness and say you think your child needs an antibiotic before this progresses to bronchitis. The doctor asks you what antibiotic your child responds best to, and then after you tell him, says, "I'll call it right in."

You know the phone number of your pharmacy by heart. And know the phone number of your PCP office by heart too.

You call your primary care doctor, sounding worried, and the conversation goes like this:
Me, "I don't like the way her cough sounds. She needs to be seen today, can you get her in?"
Nurse, "How soon can you get here?"
Me, "We can be there in twenty-five minutes."
Nurse, "We'll squeeze you in. See you when you get here."
*note* Our primary care doctor has Sick Call in the afternoon, to take care of people who need to be seen the same day. You have to take whatever doctor is available, but that's ok because all the doctors in the practice know your child. Sometimes Sick Call is full and you have to wait until the next day, but if it's really urgent they'll squeeze you in.

Your child lies dying, much too young, and for a moment, amidst the terrible pain of it all, you mind is filled with thankfulness that the doctors were able to help her hold on until her sisters could get here from the opposite coast, and from another state far away, so your daughters can all be together again for a little while longer.

Monday, September 15, 2008

A Website, for All of my Fans

One summer, I asked daughter Margret what she wanted for her birthday. Today's title is what she replied: "I want a website, Mom, for all of my fans."

Margret has been a fan of music personages like NKotB, N'sync, Backstreet Boys and Ricky Martin. She's familiar with the celebrity web sites, and the fan message boards. And she wanted one for her fans. When first she said it, I was amused. I hadn't really considered that she had fans. The more I thought about it, the more seriously I took the idea. Making a web page for her, after all, is well within my capabilities. And, it would make her happy.

I asked her what she wanted on her web site. She wanted a picture of her, and her name, and a place where her fans could leave messages. Oh, yes, and she wanted me to explain what Eisenmenger's Syndrome is, but say it just like she was telling the story. And she wanted a page all about Down Syndrome. And pictures of her sisters and stories about them.

I managed the photograph, and the explanation of Eisenmenger's syndrome, and the guestbook for a start. She was pleased. She already had messages in the guestbook. I read them to her, and she glowed with pleasure.

We went off to see her doctor again, and she talked about her web page. The doctor told her the explanation of Eisenmenger's was very well done, clear and accurate. I admitted to the role of ghost writer for that bit, and this doctor, Dr. N, asked me if I would come and do the lecture on Eisenmenger's for her medical students. I'm fairly sure this was a compliment, and not an actual offer, so I demurred on the grounds that I didn't have any teaching credentials, and that might be a problem.

I mentioned her guestbook to several friends, and they mentioned it to other friends, and presently she had lots of messages. I read them to her, and she wanted to reply to most of them. Some of the signers had not left an email, and were one time visitors to the website, so I suggested a message board where she could have a better chance of her replies being seen.

Soon we had a conversation that went something like this:
"OK, I added a message board. Here are your messages; (and I read them to her) What would you like to say in your reply?"

"Oh, Mom, you can say anything you want," and she took herself off to take an afternoon nap.

Feeling somewhat flummoxed, I didn't make very many replies. Why didn't she want to reply for herself? Don't know. She always managed to avoid giving me an answer to that question.

I never did get to the explanation of Down Syndrome. There are plenty of websites you can find by using Google that are quite good. I hesitated a bit about the pictures of her sisters, and wondered if telling stories was a good thing. So that got put off. I've put up a little bit of biography about Margret herself, and I'm thinking of expanding it a little at a time.

Oh, yes, and Margret asked me to write a book about her, about growing up with Down Syndrome and health issues. I told her she would have plenty of time to tell all those stories herself, and arranged a little voice recorder for her to use. Somehow she never made the time to record any. I think she was too busy living new ones to bother.

Maybe someday I will write her story out. Maybe. Only maybe.

Want to see her webpage? Click here.

Saturday, September 13, 2008

Pneumonia Kills - My dad

My father died of pneumonia.

He was 80. He refused further treatment for myelofibrosis, a disorder of the bone marrow where stem cells, responsible for creating new blood cells, both red and white, are replaced by scar tissue. He received an infusion of packed red cells in the spring when he was diagnosed. In July, he thought he was dying. Daughter C and I hastily made arrangements to visit him.

No one had bothered to tell him that the life span of the red blood cells he'd received in the spring was four months or a little less. Since his bone marrow was not making any new red cells, what he was experiencing was the effects of rapidly falling numbers of red cells. He received another infusion, this time of whole blood. His condition improved, but he did not like the discomforts as his body dealt with the extra fluid along with the red cells this time.

We had a wonderful visit. He was in good spirits, and glad to see us, but it was subtly acknowledged this was likely our last time together. We took a number of pictures, many showing Dad in his PJs. He didn't have much energy, and refused to waste it on inconsequentials. We chatted and told stories, laughed and hugged a lot.

Dad didn't have much appetite, so he lost quite a bit of weight. His false teeth did not fit comfortably, so he had difficulty eating normal meals. Mother tried to create blended shakes with inviting flavors, without much luck. I'd acquired a trial pack of assorted flavors of nutrient powder mix, and promised to send it once I reached home. I also promised to send the little baby food grinder I'd used with my kids to introduce them to the delights of adult foods. I thought it might make his favorite meats and veggies easier to manage.

Daughter and I went back home.

The nutrient powder stuff was something he tasted once, held his nose and gulped the rest of the serving, and refused to sample any more. The little food grinder helped some, but Dad's interest in any food at all continued to dwindle.

My dad had an aversion to the idea that he might end up in the hospital, with tubing in all orifices, body kept going by machines, but no conciousness within. He preferred to die at home. He decided he would have no more treatments. He decided he would not go to the hospital, anymore, for anything. He and Mother discussed it all, and she supported him.

We talked on the phone over the next month, more, I think, than we had in the preceding year. I lent Mom what support I could from a distance.

The day my Aunt called to say Dad had been transported to the hospital by the emergency squad, I knew. I did not want to believe. I did not want to say it, but I knew my father was dead. I prepared to travel again, flew the very next day to be with my mother.

She told me about his last morning, how he had a 'bit of a cold' and was talking, at intervals, to people who were not there. He seemed fine when she checked on him before going out to the mail box to get the day's mail. He was dead when she returned.

We dealt with the funeral, and assorted necessary errands, together, mother and I. We talked about what she wanted for the end of her life. I promised to honor her wishes to the best of my ability when the time came.

We buried Dad in the family plot along with his parents and grandparents.

Thursday, September 11, 2008

Hello World - Or, What am I getting myself into?

Hello world!

That's the text printed by the first, simple, elementary program I ever wrote in the Pascal programming language; and my first C program did the same. It signifies a beginning.

I've been reading blogs for weeks now, after never reading blogs before. I adore all the creative and descriptive names that folks have come up with. I've been fascinated by all the stories, philosophy, entertainment, information and just plain NEAT STUFF in the blogs. One daughter has been urging me to write, for years she has been urging me, and I have been resisting. I've tried writing in a journal, and it just doesn't happen. Before today I said, a blog? Who? Me? Nah... Never happen.

Today, I came up with a title I really like: The Incredible Gift. This phrase resonates. It reverberates pleasantly in my mind; it inspires me. These words symbolize all the good things that have come to me, over the years. In addition, I think this phrase is a suitable honor for my daughter, she who touched many lives. All the good she has done, all the happy memories she left me with, every wonderful thing she leaves behind is, at least in my mind, truly an incredible gift.

So, look out, world. This is my blog, and I've just begun.