Christmas Eve

Christmas Eve.  Weather was much improved.  Got to go the beach and make a sandcastle. 

This is Sheena and Roy building a sandcastle, we were at a different beach

Ryan appears to be a bit of a nudist.  When we went the first time to the beach, we did not take swimmers as it was a bit cold.  I took a towel just in case and to dust sand off.  Anyway, Mark could not help himself and took off his top and dove in.  This inspired Ryan who stripped naked and started to pee before anyone knew what was going on.  Then he jumped in.  Stayed in for a bit and then started to turn blue.   By this stage Sheena was in up to her waist.  Roy had fallen in (see attached pic) and then even little Benny fell in, nappy and all.  So we ended up driving home with two naked, unhappy and cold children.

Perfectly timed photo of Roy falling in the ocean.

We also put out some reindeer food for Santa, got them to bed before we did the whole milk and cookie thing.  But to be truthful, Christmas is not about Santa.   No one seemed to miss it.

Sheena and Ben cooperating

All the kids trying to share some Reindeer food

More distribution.

sad stuff happening

Yesterday there were two snippets of information off the Internet that made me very sad.  I don't know either woman personally.

First is Courtney from a long favorite blog pudge and biggie. This woman with her husband has adopted two children with down syndrome. They've since had a biological child and are pregnant with their 4th child. She is an inspiration on parenting,  special needs and photography.  Anyway,  yesterday she found/was alerted to a photo of her eldest daughter with an awful caption.  someone had gone to the effort of finding LC and bullied her and her parents and people with DS generally.  It broke my heart. I was so surprised and hurt by this.  Courtney has now made her blog private (very sad about that) and she needs to recover.  Please pick on me... not my child.

Second is a girl on the sidelines of a beautiful mess. She has a young daughter whose photo has been picked up by trolls and turned into "baby slut" supposedly its funny but in reality its gross hurtful and creepy. She's a baby!!

I put my children on the Internet.  That makes me nervous.  What if my boys photos are in something like that. If I don't know about it does it not matter.

Feeling a little sick with the world today.

The R Word

Do you know what it is?



Do you think it's offensive?



Retard or retarded.



I can't stand when I hear it. There is a girl at work who uses it in jest about herself quite frequently. I wish I had told her my feelings about the word. Can't eliminate a word if people don't know there is an issue with it.

There is a big push in America to eradicate the R word. Today is "the day". I had written a big post about it earlier, and when trying to download the graphic the computer froze and I lost it.

Unfortunately I say the F word a bit. But its not denigrating someone's intelligence. I'd never say the N word either - cos it just doesn't make sense. How completely alike Mark and Daniel are (Mark is pure white and Daniel is almost a blue/black) but they are both just boys... Sheena has issues, I'm not saying she doesn't. This is the most inspired piece of writing here, I will send it off to Jocelyn, for her to read. For those who don't click, its a blog that I follow about a woman who's older sister has Down Syndrome and she has adopted a daughter also with Down Syndrome. She is talking about her sister's limitations and where she excels. Its heart-warming. I'd love to be part of a solution.

Take a pledge to NEVER use the R word, or better still..... just never say it.

Bored

Not too bored really. Just alone.
Baby is asleep - he only had one nap today, so went to bed early.
Mark and Jamie have gone to the Newcastle Regional AFL Award night.

I've done a lot blog surfing (a fabulous time waster), some include Pudge and Zippy, Josie and Sarah. These are all based on babies/adults with Down Syndrome. The first two are babies who have been adopted and they just make me cry, they've been through the AV fistula repair, gastrostomy tubes and hospital visits. The other one about Sarah, is a 21 year old woman living a full and interesting life. Makes me go all mushy.

Ryan updates: he's on the move, not crawling, but definitely not staying put. He can roll, reach, stretch and wriggle to get where he wants to go. Its not very far, but can be annoying. Our home is not nearly childproofed yet. That is happening over the next two weeks. He nearly reached far enough to get a saw tonight!! How would I explain that to the ED?

Back at work tomorrow. I really enjoy work now. Still not a huge fan of morning shift - I really HATE showering people. But lots happens and I lurve the people I work with.

Jamie has managed to get next week off, which will be marvellous for the renovation. My in-laws are coming and they are a huge help when it comes to stuff like that. Hopefully this means my kitchen will be finished - including the walls being painted! Maybe even the hallway will be painted too (I think we started to prepare the hallway about three years ago), its so shit, but we don't notice it anymore.

Heartbreak

Or lung break, or blood vessel break.


Not entirely sure which one it is yet. My darling niece Sheena seems to be unwell. Its a strange one too.
She is lethargic, in that she sleeps so much, a good 12 hours at night and a nap of 3-4 hours. Awake time is activity that is normal for a 2.5 year old.

THen there is the *blue episodes*. Jo sent me a picture of her when she was blue and its tragic. Bluish little fat fingers and tinges around her mouth. During these episodes her oxygen saturations drop to sometimes 75% - normal is 98+%

Jo, Mark and my mum took her to the emergency department several times, she got an appointment with the kids cardiologist. She had an ECHO on her heart. She is seeing the respiratory doc in two weeks. She is having a holter monitor heart check on Friday.

PLEASE don't let there be anything major wrong with our dearest Sheena. She is the lifeblood of our family. Every single thing she does is a marvel. She is a great signer - even makes up sensible signs herself - she is amazing. Little Mark and tiny Roy are fabulous, but it is just expected that they achieve, when Sheena does its brilliant. She is smart, funny, not to mention completely and utterly adorable.

Can you tell I'm in love with her. I get to see her in just over two weeks.