Tuesday, January 28, 2014

Pray for Ukraine!

Ukraine is in a battle for freedom right now! And no, it's not neo nazi activists! That's the most annoying comment I hear from people who just assume!

The people of Ukraine have been peacefully protesting their president and his decisions for two months now. They want to be free! They want to be out from under Russia's big bully umbrella! Then their government started attacking them! Making up new laws like you can't have a tent in public, and other outrageous reasons to arrest and beat innocent people!  
They don't want our money, or our troops. They want us to help spread the word, and for the US to say they don't agree with what their president is doing, and urge him to step down. 
This is stuff that we could very well be facing in our own future. Scary as it seems.
 My husband and I still have friends in Ukraine that we talk to daily.  We have a friend here that is from Ukraine. Her brother and family are still there. She fears for his safety as he wants to help his people gain their freedom! 
I look at my baby girl, know that these are her relatives, and this is her home country. Luckily she has no idea what's going on, and we just hope for safety of the people, and for their president to step down and allow elections, which is what the people want! 
Please watch this video, it's 3 minute of your life. It tells the story of what is happening. It brings me to tears. Seeing places I've walked, people I've talked to! 

Just pray for Ukraine, and email the government to make a statement! How sad that our news is all about Justin beiber and his stupid mistakes! We are truly a messed up media!


Monday, January 20, 2014

She is her own advocate!

When you have a child with special needs, its always about advocate, advocate, advocate!
While that is a huge part of our lives, there is such thing as going overboard.
I know your thinking, no way!
But a mom of a 17 year old girl with DS in a group I'm a part of just left that group.
This is a mom that knows her stuff! After all, she's been doing this for 17 years.
She tried telling some other moms of young kids with Down syndrome that there is plenty of time to advocate, and still enjoy your child! That sometimes you have to just live life, because soon your child will also be 17.
This mom was ripped apart by these other moms! She was told she didn't advocate enough for her child.
Do you know how much your own child can advocate for themselves. How they can change peoples hearts and perceptions all on their own?
Of course that doesn't mean we don't need to advocate, but watching Arina the other night, I realized how much my 4 year old is her own little advocate.
We were at Disneyland, waiting for her beloved parade to start. Because she doesn't sit still long, she is usually walking up and down the parade route, waving and dancing, and pointing out any Disney souvenir  someone may have!

But the last couple of parades she has been doing something new!

She walks down the row of people,

and hands out hug after hug!

After hug!

I have yet to see a person turn her away, or not have a huge smile on their face after interacting with my beautiful girl!
Sometimes its fun to just let her do her thing!
And you better believe that most of those people will remember that little girl at the parade, if  Down syndrome is ever brought up with them again. Or maybe they are told their unborn baby will have Down syndrome. Hopefully they will remember her little face, and think that it may be alright!

Wednesday, January 15, 2014


Love and admiration

Big, bright eyes that tell such a story of strength!

I could keep him snuggled in the crook of my neck forever!

I can never get enough of this face!

Tuesday, January 7, 2014

Being a sibling of a fragile child!

As you can imagine, being the sibling to a medically fragile child is not easy! 

There are many times they have to take a backseat. They have to go without seeing one parent, things they wanted to do have to be cancelled or changed because their brother is in the hospital. 

When Jax was a baby Carter was 3. It was as if I had a job. I got up in the morning and took him to grandmas house while I went up to the hospital to be with Jax. Because Jax was in and out, Carter became very clingy to me. To this day he is the one that always wants to come with me if I go out!

In the last 8 years its just become life. Something you don't even think about. For years we've been taking each boy out about once a month for one on one time. We try to do it if there is something happening they like. The air shows and military museums for Mondo. A new superhero movie for Tanner. A baseball game for Carter. 
Our whole experience in Utah made me really remember what our boys deal with! 
In St. George when Jaxson was blue and we had to call for help, the boys didn't even blink. They ran out to flag down the firetrucks like the old pros they are! As I sat in the ER with Jax, waiting for life flight to come, the kids sat in the car, watching movies for 3 long hours! It was that or chase Arina around a crowded waiting room! She quickly fell asleep in the car. They missed a week of school when we had to drive back up to Utah. Then when they drove home with daddy, they had to get themselves up and off to school alone, because daddy had already left for work!  
Christmas decorations didn't get put up this year, and many of the Christmas events we didn't attend. Luckily the boys are a bit older, and Arina doesn't understand yet, so it wasn't a big deal! But it was a big deal to me. I felt like in the last month the boys had been through a lot! So a lot more time was focused on them, and things they wanted or needed!

There are good things that come from being the sibling of a fragile child. And I think, that those far outweigh the bad. 

The boys are very self sufficient. When they have to go out in the real world, they can cook and care for themselves. Which I would have instilled in them even if Jax wasn't in our life. Because I was the same way as a child! 
They are much more compassionate people! All of the boys come to Jax at least a couple times a day and kiss him, or hold him. Or just make sure they check on him. They go out of their way to help people, and to hold doors. They can pick out a person with special needs like a needle in a haystack, and they go out of their way to talk to them. I constantly find "selfies" on my phone of Carter and Arina!
I asked all three boys separately, if they would change their life with Jax. If they wished they had more time to do what they wanted to do. And here's what every.single.boy said!
They would take away any hurt he had to endure. They would want him to be able to walk, and talk to them. None of the boys said they would change their own situations at all. Not a single one! 

Ray and I both take pride in the fact that we've concentrated a lot on making sure the boys life changes as little as possible with Jax. So I can say for a fact that it can be done. Just remember to take time once a month for each child. Even if its just popping popcorn and watching a movie. It will make a difference, I promise!