Saturday, October 10, 2009

Perspective on normal

Get It Down; 31 for 21


Since abortion is such a common option for children with Down syndrome, why aren't typical developing children diagnosed like this? 

How to give parents a pre-natal diagnosis:

I'm very sorry, I have the results of the genetic tests and they have
confirmed our suspicions that your fetus is what we call ... Normal.
Some people prefer the terms "Ordinarily Challenged" or "Normal
Syndrome". The syndrome can be easily identified by a complete lack
of any interesting genetic characteristics. I know this will come as
a shock to you, but you should be aware of what this is likely to
mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family
and, of course, your relationship with your partner will suffer, and
possibly end in a painful and acrimonious separation. Any children
you already have, even if they also suffer from normalcy, will be
jealous of the newcomer and all their extra attention. Many siblings
are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although
disastrous, they will be nothing compared to the emotional turmoil
your life will suffer.

After a while, you may be lucky and find they can be kind and loving
young children. They may find some temporary happiness in things such
as music, dancing, food or playing with toys.

But if they survive early childhood, a Normal child is almost certain
to grow into a Normal adolescent. Your years of sacrifice will be
thrown back in your face as they become disobedient, wild and
reckless. Unable to find happiness and contentment, they will treat
you with contempt until they manage to leave home. Even then the
suffering will continue as they will often return to try and extract
money. They will blame you for their own faults and leave you bitter
and twisted.

They may well become criminals, over a quarter of Normals will have
trouble with the law, many will spend time in jail. Many will have
problems with alcohol or drug abuse. Normal marriages are often
unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the
often observed tendency of Normals towards excessive greed. The
chances of them sharing their success with you are remote and they
will tend to see you as an embarrasment.

Finally, Normal people are likely to die before their time. 23% will
die of cancer, 33% of heart disease. Hundreds every year in this
country alone are so distressed by their condition that they take
their own life. I'm sorry to say that many will have had a lonely,
painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects
every cell of the body, and so is impossible to cure.

Termination is an option.

Shall I book an appointment?

..... from a parent who received a diagnosis rather like this.

Bob Lincoln, author

Friday, October 9, 2009

B O R E D

Get It Down; 31 for 21


I'm so pleased to take part in 31 for 21 again this year. It's brought me out of my blogging funk! Since Ruby was born I just have not made it a priority. Click on the Get It Down logo to find loads of other bloggers who are taking the same 31 for 21 challenge.

Ralph and Ruby are actually both sleeping right now. This never happens. So I have time to write...

hmm...

nothing.

I think of grand blog posts when I'm busy doing the dishes or folding laundry or nursing the baby. I think of funny ones, informative ones, thought provoking ones and so on. Right now I got nothing. Life is really pretty boring right now if you boil it all down. 

And that is nice.

These are the days when I hardly even think about Down Syndrome. Ralph is just a regular two year old kid. He gets into stuff. He throws his food on the floor. He rips his diaper off at every opportunity. He's not that happy about taking naps anymore.

There is no oxygen concentrator sitting in the corner. No tanks to knock over and chip the tile. No tubing to trip on. No sat monitors to keep an eye on all night long. No breathing treatments every 3-4 hours around the clock, for now anyway.

Then.

I don't take this for granted. Drama? Been there, done that. I like boring better.
Now.






Story of my life.

Thursday, October 8, 2009

Day 8 - PH

It's 10:30 pm. I'm mentally done for the day. Actually I've been done for awhile! But I can't go to bed yet.

Ralph gets medicine in one hour. He takes Sildenafil every 8 hours - 7:30 am, 3:30 pm, 11:30 pm - for his pulmonary hypertension. He'll be soaking wet because of the Lasix that he takes at 7:30 pm, so I'll have to change his diaper and possibly his PJ's and bedsheets, too. 

It's getting old.

I know of a few other kids with DS who have pulmonary hypertension. It's a terrible disease. Ralph seems to be outgrowing it! (I'm almost afraid to type that, but I don't believe in jinxing.) Some other kids...not so much.

When I start feeling weary, or sorry for myself, I like to think about people like Parker and his family. When you send your kid into a heart cath procedure expecting improved numbers because he's looking SO healthy lately...and you get a slap in the face...it just sucks.

Parker is touring the medical specialists again so some good friends have put together a Scentsy giveaway. Could you spare a 5 spot for a darling boy with Down Syndrome and a case of pulmonary hypertension that won't let up? You could win some yummy holiday scents!

Wednesday, October 7, 2009

My Reality Today - day 7

I don't know who took this picture of Leroy, but when I downloaded the photos from the camera it nearly frightened me. 


This is the island in my kitchen, looking into the laundry room. Why did the photo strike me so? I walk right past this sight many times every day. It's my reality today. While it is not always this bad, something else around here is. I've got one child in particular who likes to mess up pretty much everything that I clean. 

Looking at the photo is sort of like looking in a window. If I looked in a window and I saw this mess, I would probably judge harshly. Sometimes we need to see ourselves as others see us, I guess. And judge ourselves instead. 

My mom is visiting this week. I'm so thankful that she has helped me get caught up with some tidying. She straightened up Rose's room, mostly because that's where she sleeps when she comes. Today she demanded that the kids work on the basement bedrooms, bathroom and playroom. Tonight she helped me sort and fold a bunch of clothes that I have needed to go through.

I so want to be like the super organized moms of large families that you see on TV. The reality is that my life is just different and I'm different. My husband is not always home for dinner at a certain time. Much of the time he is not home at all. Over time, I've come to realize that that's probably a blessing, as I like to be in charge and I'm probably happier this way.

I don't get much sleep with my youngest two children who are quite needy still. I've got nine kids, for heaven sake! Even the Proverbs 31 woman had servant girls. I've got all the excuses, don't I?

But I can't help but think that I would be happier if I could keep on top of the housekeeping. I've heard some older ladies at church commenting about how women today don't "keep house" like it used to be done. That has stuck in my head. I think they are mostly right. I wish I had been trained in the lost art of keeping house.

Then again, there's that saying - "cleaning house while the kids are growing is like shoveling snow while it is still snowing!" 

It may never stop snowing around here.

Tuesday, October 6, 2009

Playground photofest!

Ralph, Ruby and I were early for playgroup Monday morning. Yeah, I said early. Don't laugh!

We had the WHOLE place to ourselves. I've never seen this place completely empty. It was a bit nippy and windy, but Ralph did not care. This kid knows how to have a good time! The colors in his outfit and the cloudy conditions were perfect for taking photos. These are all SOOC.








Oops! Should I try to photoshop my foot goodbye?



No fighting for the swing today!

Working on strengthening legs by doing the steps.



Spinning in the cup!

Dizzy, unfocused eyeballs!

Why am I playing the steel drum with sticks? Oh yeah, some lowlife ripped off the mallets. :(

Applause!


Monday, October 5, 2009

Buddy Walk 2009 - photos

We had a chilly start to Buddy Walk 2009. But the sunshine and beautiful faces warmed me up!

Ralph discovered clowns today!

Lots of room to, what else? Walk (and fall down), at the Buddy Walk.


Ralph hugging his good friend.

Strolling.



Walking! Walking across the finish line.

Rose and Leroy.

Ralph would NOT leave the clown alone.