Christopher’s Journey.

http://images.rejectreality.net/v/chris/

I was asked last week, when Christopher went back into HDU with his pneumonia, what I wanted for him.

In other words, do they make him ‘comfortable’ or do everything in their power to get him through.

I am f**ked off. This is the FOURTH time in the 3 months since Christopher has been born, that I have been asked this question!!!!!

I am upset that the Doctors would think that I would want an “out”.

Do they not understand that this is my kid? That I love him. That he has intelligence and is not going to be a vegetable. He has normal brain function and will go to a normal school. That he reacts, smiles and holds my fingers. I cuddle him and I feel the most overwhelming love for him and I can’t remember what my life was like without him.

This kid completes me. I feel like I have a purpose in life and that is Christopher.

His problems are physical and every one of them on an individual basis can and will be fixed. This will take time, I understand that, but that doesn’t mean that I want to be constantly asked about letting him go.

Why do they keep asking me this question? I am upset that they would think that a mother could let her child pass away, especially if there is a positive future and outcome for him.

I love my kid. End of story.

Thanks for reading.

Rant over.

I love this pic of my two boys (my big boy and my little boy)

When things in your life seems almost too much to handle when 24 hours in a day is not enough remember the mayonnaise jar and the 2 cups of coffee.

A professor stood before his philosophy class and had some items in front of him.
When the class began, wordlessly he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly.
The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full and they agreed it was.

The professor next picked up a box of sand and poured it into the jar . Of course the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous “yes.”

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed.

“Now” said the professor as the laughter subsided “I want you to recognize that this jar represents your life. The golf balls are the important things - your God, family, your children, your health, your friends and your favourite passions–things that if everything else was lost and only they remained your life would still be full.

The pebbles are the other things that matter likes your job your house and your car.
The sand is everything else — the small stuff.
If you put the sand into the jar first” he continued”there is no room for the pebbles or the golf balls.
The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.

Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical check-ups. Take your partner out to dinner. Play another 18. There will always be time to clean the house and fix the disposal.”

Take care of the golf balls first — the things that really matter. Set your priorities. The rest is just sand.”
One of the students raised her hand and inquired what the coffee represented.
The professor smiled. “I’m glad you asked. It just goes to show you that no matter how full your life may seem there’s always room for a couple of cups of coffee with a friend.”

“Once every 600 years comes the rarest and luckiest year in Chinese culture - the year of the Golden Pig. Legend promises that babies born in the year of the Golden Pig will live carefree, wealthy, straightforward and honest lives.”

I was told by my friend Felicia today that it is the Year of the Golden Pig, in the Chinese Calendar. That’s got to be good for Christopher to be born into great luck and good fortune

Thanks to my friend Barb, for the fabulous work of art.

I came across this little story, and I found it very fitting and I wanted to share it with everyone who has been keeping up-to-date with Christopher’s progress. Thank you all for your kind and loving words to inspire Christopher (and his parents) along our journey. Love Cess, Greg & Christopher xx

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

With the help of my lovely friend Sarah, I have started to pack my bag in anticipation for my trip to hospital.

She isn’t the only one who has told me off about not already having a bag packed Apparently it is advisable to have this project completed by about 30 weeks of pregnancy, and obviously at 34 weeks, it is not acceptable!

This is what I need for me (for a possible 5 - 7 day stay):

# Casual Clothes

# 2 x Night Attire

# Dressing Gown & Slippers

# 2 x Maternity Bras

# Lots of Underwear!!

# Toiletries

# Large Box of Tissues

# 4 x packets of Maternity Pads

# Note Pad & Pen

# Pillow

# 1 x Box of Nursing Pads

This is what I need for Christopher:

# 40 Disposable Nappies

# 2 or 3 Cloth Nappies (spit rags)

# Sorbalene Cream

# 2 or 3 bunny rugs/wraps

# Going Home Outfit

# Blanket

I hope that is all I need for now!

I did washed all the baby clothes that Christopher had been bought for him by us, lent to us by friends and given as presents, over the last 2 days. A total of five loads of washing. It looked very cute with all the little clothes hung up in the house.

Sarah and I sorted all the clothes into sizes today, 00000; 0000; 000; 00; 0; 1 & 2’s, and then put the bigger clothes into a box for use later and left out the 00000’s & 0000’s out for the time being. Christopher officially has more clothes than me and his Dad put together and he hasn’t even been born yet! But the good thing is, I probably will not have to buy any new clothes for him until he is between 9-11 months old. Not a bad effort, We are lucky to have such generous family and friends.

The cot was delivered yesterday and put together by DH and one of our friends (I supervised ) last night

Nursery is finished - just need to do a bit of tidying up.

Now I just need the baby to complete the picture.

It is nice to have finished up, but kinda sad too.

I got a lovely send off, a huge card (with lots of lovely things written in it) A bunch of flowers, a box of Belgian choccies and $165 to start off Christopher’s first bank account. (to be opened once he is born).

I also received a hand-made quilt for Chris to play on which is just brilliant.

I feel very lucky to work with so many lovely people.

We have just bought Christopher’s cot and it gets delivered on Tuesday 10th April.

Here it is:

It starts off as a cot and drawers that can be used as the change table:

It then converts to a toddler bed (still with change table):

Then it converts to a single bed with drawers:

We also got the under-bed drawers for added storage:

Its so exciting, for us anyway, knowing that we have somewhere for our little man to sleep and that nursery is now all finished!!