We didn’t party too much as we are all fairly overwhelmed with everything.

We are planning a fundraising dinner and raffle on February 11th.

Let the search for donations begin!

Weather or not she really knows all the time what she is doing is still questionable. But she still manages to get to places I didn’t even think about.

Like YouTube.

She told her dad last night that she watched a horse being born.

Oh joy…

She informed me that a baby horse comes out of the mom’s butt.

Of course I started asking all the questions – who, what , when, where, WHY!

She told me she decided to watch the video of the baby horse being born instead of the one with the naked lady!!!

I am proud of her for that, but I still put as many parental controls on her Itouch as I could find!

This cute picture comes from Best Horse Photos. I didn’t find one picture of a baby anything being born or a naked women

Gordon has been moved to the rehab unit. He has a very long road ahead of him. He gets 3 hours of therapy 3 times a day. It is very tiring for him. They have limited his visitors as he needs to rest in between his therapy sessions.

Lily and I got to go up and spell his mom the other day. He slept most of the time we were there. When we were leaving I gently patted him on the chest and told him that Lily and I were leaving. I told Lily to come over and say good bye. She told him good bye and that she loved him and put her hands in the shape of a heart then she walked away. Gordon opened one eye, looked at me and said “let me talk to Lily”. I melted. Lily heard and came over to him but he didn’t say anymore. This girl can reach deep inside people. She has always been able to.

Lily has over 200 pictures and videos on her Itouch. She takes the most random pictures I have ever seen. She had lined up all the mismatched socks. She has 14 pictures of socks!

Thank you to the Young Woman who took these pictures and emailed them to me

As we walked in Lily was recognized by several other students, and she recognized them. It was like a slow motion picture as Lily and another girl ran to each other across the restaurant to embrace in an excited hug.

It was very hard to keep Lily in her seat as she went from table to table giving hugs to students she recognized from school. One young man was quite startled when Lily went up and gave him a big hug. At least it was a side hug… He was kind to her after the initial shock and gave her a high five. Teachers came to our table giving Lily hello hugs or good-bye hugs.

I always worry that students will know who Lily is and how they will treat her. She only goes to one other classroom in the school. She does serve lunch so maybe the kids know her from there. But know her they did. And they were kind to her. That’s all that matters to me.

Students of EJH!

We TRY really hard to get her to eat healthy. Tonight was a treat!

Her favorite – white ice cream

One of her student peer tutors

Thank you Village Inn for a fun evening!

I got to watch Lily interact with the girls. Some were really into jewelry making so just casually talked with her. Others who were finished were hanging out on the other side of the room, texting, talking, giggling, and Lily was right in the middle of it all having a great time.

I have kept this blog mostly religion free until this year when she turned 12 and became a “Young Woman” in our church, The Church of Jesus Christ of Latter Day Saints. This is her life now. She loves Young Women and her church and so this is the path we will take on her blog.

The other thing I have stayed clear from is politics. This is not the place for that. But today is different. Today I will speak up for Parker.  I am also speaking up for Ashley and Amelia, but Parker is why this post really started.

The first thing I noticed about Parker were his eyes. He has these enormous beautiful eyes that speak to my soul. Then he smiles at you. If you are not hooked after that smile there is something seriously wrong with you. He is a cool kid; he loves to swing, he loves to learn, he loves to explore, he loves his family. Sounds like a typical kid to me. There is more to Parker though. Parker teaches people. Parker changes people. Parker motivates people. Way down the list of all the things Parker is there is also the fact that Parker is medically fragile. He also has Down syndrome. His mama and the rest of his family work hard to keep Parker alive.

So how do these three individuals, Parker, Ashley, and Amelia end up in the same post? They are all fighting to stay alive. They all need some type of medical equipment, supply, or procedure to stay alive.  Unfortunately, there are some people who think the world would better off without Parker, Ashley, and Amelia.  To some they are all burdens to society. To some they have no value. They need taxpayers money to stay alive.  And believe it or not some taxpayers don’t think their hard earned money should go to these kids to help keep them alive.

I have to wonder where things went so wrong that a road has more value than a human being? Why do we continue to allow the government to bail out failing car dealerships and banks over and over again only to have them turn around and pay out big bonuses to the important people? And what about our wonderful health care system that just continues to spiral out of control?

Why isn’t Parker important? He has taught his parents about frugal living, who in turn shares and educates the public on how to live within their means. He has made his mama think outside the box on how to teach him and you bet she shares her  stuff. He has challenged and puzzled his doctors so they think, search, and educate themselves thus helping other patients. Why do we have to end his life before ending all the special privileges, bonuses, trips, and all the other unnecessary items that politicians get?

Parker has taught me more than any politician ever will.

When will this stop?

Who will be next on the list of not having enough value to live? I was thinking maybe the good white girls around 18 whose father’s run for office. What value do they really have? I mean let’s think about it… they apply for all these grants and scholarships to get into an affluent college only to meet a guy who wants a trophy wife. So she drops out of college wasting a perfectly good grant that could have gone to  someone more deserving. Then she starts having babies. Oh my, what if she gave birth to a baby with a disability? Would grandpa have enough guts to flip the switch?

So I want to know from all the people who left opposing viewpoints on Parker’s blog pretty much stating that he has no value which one of you is going to step up and flip the switch to his vent so he can die? Jennifer you said this about Parker - Parker is wonderful, he has charm and he has enriched your life. But, has he contributed to the well-being of every person who has paid for his medical treatments? Jennifer will you be the one to flip his switch? Also Jennifer what have you contributed to the world to make it a better place?

To the politicians out there. I don’t need another freeway. I seriously don’t think you need a pay raise or a free trip to anywhere. I think the rich should be taxed. I think corporate America needs to bring their products back to America so we can buy American made products. And if you have to raise my taxes to keep Parker, Ashley, and Amelia alive please do because they make me a better, richer person.

Gordon is a lovable 6’5″ bear of a guy. He’s an outdoors man, who loves to hunt, camp, and fish.

Yesterday while ice fishing he slipped and fell on the ice. A 6’5″ guy falls hard.

He has a skull fracture, facial fractures, bleeding on the brain, and his brain is swelling.

We are all devastated. Lily is crushed.

He dresses up as the Easter Bunny! His mom made the bunny suit just for him.

At Christmas time. Sports is another favorite of his!

We love you Gor-da-non! Get better soon!

I asked her if she was perfect.

“yes”

I then started listing some of the things that she had recently done that weren’t really appropriate and again asked if she was perfect.

“YES I AM PERFECT. THANK YOU FOR ASKING!”

I finally got around to down loading the pictures from my phone.

Lily and her friend at the Dickens FestivalThese next three pictures were done by the 1st Graders at my school. Do you see anything unusual about the angels?

I need to catch up with so many things. It is not helping that Lily is changing daily!

This puberty thing has me getting nauseous. Lily is heading there in a big hurry. She has jumped from a size 12 to a 16 in most clothes and went from a size 5 to 6 1/2 – 7 in shoes!  I would really, REALLY,  like her to slow down.  Her weight is still in the normal range on both the Ds chart and a typical chart, so I am relieved about that. On a side note: Lily’s pediatrician told me they (National Center for Health Statistics (NCHS) and  World Health Organization (WHO)) were changing or have changed  the Ds Growth chart, but new charts have not yet been made available. Because of all the medical advances and therapies our kids are healthier and therefore growing differently than what is stated on the older charts.

Anyway back to puberty. She’s getting there and I can’t stop it from happening so my only option is to educate myself and her.

Oh joy…

I bought two books: The Girls’ Guide to Growing Up and Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality. After Lily’s last doctor’s appt. I told her that her body was going to start changing. She has gotten a few pimples and tells people they are spider bites. She is so excited for boobs! The other stuff, not so much. She is scared. I AM SCARED! I think it is going to be more challenging for me as I have not had a period for almost 20 years and Lily’s big sister was married before Lily was born so I have nothing to show her  (I guess I should go out and buy some pads – there’s an idea!) She asked if she would be using band-aids. Oh this is not a journey I want to take.

All this puberty stuff is changing her attitude too! Oh my gosh the girl has an attitude that won’t quit. She can be so stubborn and then switch into my sweet baby girl within seconds. She’s so normal! I really did think I could get around the pre-teen and teen phase (that I really don’t like very much!) with her because she was… well… “special,” “a special angel,” “a sweet spirit.” No. No, she’s more normal than not. So, for all you Ds mom’s out there with infants and toddlers that are so loving and cute just you wait. They stay loving and cute and then they throw in the normal typical kid attitude thing and it throws you way off!

She got bacon in a box for Christmas from my mom. They go to IHOP all the time for breakfast, right before Christmas Lily ordered something with bacon. When the order came there was only one piece of bacon on her plate. Lily was so mad that she refused to speak to my mom for the rest of the day! ATTITUDE!

Her Lilyisms are more grown up now it seems. We were driving down the street and there was an odor in the air (outside) out of nowhere she shouts “Grandma quit farting!” She is referring to her grandma that just passed away! She thinks my MIL is farting up in Heaven and we can smell it! Truthfully my MIL is probably laughing so hard at this that she has tears running down her face. I can really see her now just bursting with laughter. But really Lily!

She told me that one of her teacher’s had neck surgery. I was concerned and asked her what happened. She told me her teacher had a floppy neck like her grandmas and she didn’t want it anymore so she had surgery. Then right before Christmas break she told me one teacher was leaving and going on a mission. When I asked the teachers about it they burst out laughing, and here I was all excited and happy for this women. I would really love to be a fly on the wall inside that classroom and listen to all the stories that get started one way and end up something completely different once it got home.

So besides all the life changes we have been doing some fun crafts. For those of you who don’t Pinterest it’s another fun, addictive social website that has you sharing everything from food ideas and crafts to weddings, events, books, and inspirational quotes. Lily and I have done a few things from Pinterest and a few that we found on our own. We are trying to teach Lily more about preparing food. It is even written in her IEP because they have an oven and microwave in her classroom. She really wants to cook on her own and even made mac and cheese by herself when my mom was here. We have a gas stove . Can you say SCARY!

This is a Pinterest recipe - so yummy!

She made this scarf in Young Women’s. I am going to borrow and also make some more!