MN Special Olympics Summer Games 2013

Last weekend was the Minnesota Special Olympics Summer Games. As always our kids had a blast! The weather was beautiful most of the time, though a little on the hot side. I'm not complaining though! Summer took FAR too long to get here and I'm loving it.

Our games are spread over the course of 3 days, with more than 7,000 athletes participating in track and  field events, gymnastics and tennis. Angela, Axel and Asher participate in the track and field events. This is Abel's year to watch, get used to being in crowds, and see what all this hullabaloo is about. If he's ready, he'll start participating next year.

Our first event was Axel's softball throw. We had to wait awhile for Axel to get there from the staging area. We were waiting in the full sun without any breeze at all. It was HOT! Abel was not happy. With me or the sun, I'm not sure which. Probably both!

Angela was hot even with her cooling vest on. (the black vest she's wearing is full of ice packs.) She really needed one on her head. 

Here he comes!

These two hooligans were having a discussion. 

Abel: "Asher, I bet we can move this thing."

Asher: "Hmmm"

Abel: "See? Like this!"

C'mon! You do it!

Meanwhile on the awards podium.....

Axel gets the silver!

Next we had Asher's tennis ball throw, but there are no pictures. Dean was back at the team tent keeping the other kids cool and I was 1:1 with Asher, so no pics. 

The next day was much cooler. Only we really had to rush! She had her MRI at 6:30 that morning and had to be ready for her event at 10:30. Of course she had to choose this day to react to the contrast dye! "Angela, we don't have time. Hurry up." LOL

Two hours later, here is Angela lined up for the 100 meter run. 

And they're off!

 Angela takes the bronze!

Angela Spring and her good friend Carly Sprung. 

We barely had enough time to get her staged for the 50 Meter run.

Crossing the finish line

Angela and Carly, waiting for awards. 

Angela took 4th place. 

Am I the only one who's kid does the Macarena on the awards podium?

Later in the day was Angela's standing long jump. Dean was responsible for taking these pictures because I had the other kids back at the tent. Of course, he cut her feet out of the picture so I have no idea how far she jumped. LOL He tried though, so I'll give him credit for trying.

But she must have done ok, because she took the silver! LOL

That night there was a dinner and dance with live music, and a BMX show. Unfortunately some very severe weather was moving in so everything got cut short. We made it back to our van just as the first drops hit. We drove home to tree limbs falling all around us!

Saturday, the last day of the Summer Games, it was time for Axel and Asher's running events. But first, it was imperative to spend time in the Healthy Athletes Village! There are so many fun things to do in the Healthy Athletes Village, and lots of free stuff. There are many specialists who volunteer their time to come out and give the athletes a screening. Pediatric Ophthalmologists testing vision, Pediatric Audiologists doing hearing screenings, Podiatrists fitting athletes with orthotics, etc. They also make referrals to other specialist if they see something that needs to be looked at further. They also had healthy lifestyle activities the athletes could try out. 

We did some Hula hooping. Dean got in on the action. He can still do it, I can't. LOL

This was Angela's favorite: the Zumba tent. Angela LOVED doing Zumba! I might have to get her into a class at the Y or something. 

I bet you won't be surprised to find out she ended up on the stage with the Zumba instructor. She is all about being on stage. 

Enough of Zumba, lets get onto the events! Here's Axel running his 100 meter run. Notice the wave? Also notice everyone else is long gone? LOL  Yeah, who cares about the "race" part? Surely everyone is yelling and cheering for him. And they WERE!!!! 

And he takes the silver. WAY TO GO AXEL!

He is so very proud of his metal! He deserves to be. Think of where he was just a few years ago!

Little Asher. He is READY!!!! 

He's telling them to hurry up and say GO already!

Asher wins the Gold! Do you know what this picture means? Think of where this child was just 19 months ago. Sitting in an institution in Serbia. Disconnected from the world. Nobody to love him. Alone. He was completely alone. 

And now he is so thrilled to have this big gold dangly thing around his neck. His world is perfect now.

Axel's turn for the 50 meter run. Hi DAD!!!!

Another gold medal for our delegation!

Look at the smile on his face!!!! I know there is someone very special reading this, so happy to see this smile. So happy to see the opportunities Axel has here. He's one very special young man. 

Abel was ready to go back to the hula hoops. He can make anything spin for the longest time!

Angela learned the art of the hula hoop transfer.

Asher LOVED running around with the hoops, dragging them behind him. He quickly picked out a favorite, I think based on the sound it made as it dragged on the ground. 

Axel tried the transfer but wasn't really thrill with it.

And then there was a minor hoop accident. 

And this brings to close another year of track and field for our kids. Two nights a week of practices have come to an end. Next year we'll have four athletes competing. I can't wait!!!!

MRI results

Angela's MRI results came back. It is unchanged from 2007, which is AWESOME. It doesn't mean things are any better, but it's good that things are not changed! Angela has stenosis on the Internal Carotid Artery and is missing the left A1 and left communicating artery segment. A lot of people are missing those segments, but combine that with stenosis of the internal carotid artery and there is cause for concern because there is no alternative blood flow.

Now to figure out why the gait and speech changes.

Orphan Hair

I have a thing with my boys' hair. Not my big boys, they can do whatever they want. LOL My little boys, Axel, Asher and Abel.

You see, all the boys came to us with orphan haircuts. Well, Axel's was just a very short cut, but pretty darned closed to the shaven heads Abel and Asher had. Abel even had his EYELASHES shaved! I'm still shaking my head at that one.

As an adoptive mom, there are things I missed out on in the lives of my boys. There are things I have had to learn about them. When you give birth to a new baby, most moms do a quick examination of their newborns body; counting fingers and toes, verifying the baby's gender, looking at their ears, etc. When you adopt a child and you're handed this kid you know nothing about, it's instinct to want to do the same thing. I'll never forget my shock at Axel's Pectus Carinatum (pigeon chest.), some things I found on Asher, or seeing the extent of tinea versicolor on Abel. 

But one thing I couldn't know right away, which only time would reveal, is what kind of hair my kids have. Do they have curls? Wave? Is his hair thick? Is it thin? Because of this, I have been reluctant to cut the boys hair. 

Axel has been with us 2 1/2 years.

I've let his hair grow a couple of times now. Here's my favorite length on him. Dean won't let me grow it any longer than this.  Axel's hair is very fine and soft.

We have also discovered that Axel's hairline is already receding, and the hair on top of his head is getting thinner. Unfortunately for Axel, genetics are not on his side when it comes to keeping his hair.

Asher's hair is very thick! He gets hot and his hair is soaked with sweat. He has a little bit of wave to his hair and I just love it!! 

Asher's hair is very soft and thick.

Now we have Abel.

I'm still discovering what his hair is like. He has a little bit of curl to his hair. It's starting to curl into his ears. LOL He also has very thick hair. Even though it's summer, I'm letting it grow. Just like the other boys, I want to know what his hair is like. So far it's very coarse. It is also very thick.

In all honesty, I really do have a "thing" about their hair. Like...a THING! So if you see me out and about, and my kids are looking rather shaggy, it's not because I'm too lazy to get their hair cut, or that I don't care. It's because I'm still learning about them. 

Read the Fine Print

There is a popular photo listing sight that belongs to a grant-writing organization. For the purposes of clarity I will refer to them as "The Other" organization.  For a couple of years now their actions and motives have been questioned.  I firmly believe that it started out as a God-ordained ministry for GOD to get the word out about HIS children who lay dying all over the world for no reason other than they were not "perfect". But God created them, and they were perfect in HIS eyes.  It is absolutely true that several hundred children have found their way into the loving arms of families because of the exposure they received through this organization. But sometimes even God-ordained ministries, that start out pure and under HIS direction can come under the influence of the human spirit. It is the nature of we, as humans, to want to take control and forget where God was directing us.

I have applied for adoption grants, and needed to supply certain documents to do so. Usually it was only my homestudy and maybe a letter from my social worker saying we were qualified to adopt that was needed. The homestudy is the document that verifies we meet the income qualifications for international adoption and that we have a clear criminal history. A grant writing organization doesn't need to know any more about me than that. "The Other" organization has no reason to know more about me either.

But sometimes, when that human spirit gets in the way, the waters become muddy. What was once a clear-cut process turns into one large mess. That human desire to control gets in the way. Pretty soon a grant-writing organization starts to say things like, "It is our job to make sure these kids get into good homes." No, actually, it is not. Especially if the grant-writing organization is not a licensed adoption agency. No, an adoption grant-writing organization's job is to verify a family is qualified based on the information provided by the family's social worker. It is not their responsibility to match a family with a child, it is not their responsibility to decide a child isn't a "good fit" for an applying family. No, they are a grant writing organization. Nothing more.

Several months ago a family started the process to adopt three children from an Eastern European country. The three children this family is trying to adopt were found on Grace Haven Ministries and Life to Orphans. Later it was learned the children were also listed on "the Other" grant writing organization's website and had grants available. That is where the trouble started. The director of "The Other" grant-writing organization went so far as to contact USCIS, without authorization to do so, to inquire about the family's financial ability to adopt as well as making false accusations about their ability to parent the children they are trying to bring home. This step in her actions has brought about changes within USCIS and who has access to information. Apparently the Department of Homeland Security wasn't as tight as it needed to be when it came to international adoption approvals. Supporters of "The Other" grant writing organization have blasted those who pushed for change. Saying those who filed reports to USCIS that lead to the investigation have no made it more difficult for adoptive families. Apparently corruption is good if it serves them well, but if that corruption turned against them they'd be hollering from the hilltops. The same things were said when I raised the alarm about what was happening with Serbian adoptions and the investigation that brought to light a corrupt facilitator. I was told that Serbia was the

"cheapest easiest country in the world to adopt from now go down the drain right in front of our eyes since you adopted. "

Interestingly, since that investigation 2 years ago, MANY more Serbian kids have gone to homes, two of them in my own house! Eliminating the corrupt piece of the puzzle decreased the cost by $6-$7000. Darkness doesn't like light. Not at all.  The same people who screamed about the changes in Serbia are those who aren't happy about the changes within the USCIS.

"The Other" organization went on to contact the family's social worker to say they believed the family had forged the social worker's signature on the homestudy.

"The Other" organization established a Whistleblower policy, and yet one of their paid staff has spent the last week bullying people who he/she believes to be "trouble makers", and flat our ordering adoptive families who are in process to sever ties with specific people or their own adoptions will be jeopardized. ( Here is some suggested reading on those very actions.)

What has come to pass, is "The Other" organization - remember they are a grant-writing organization, not a licensed adoption agency - has chosen to pretend the family applying for the grant for those three children doesn't exist. They don't think the family should adopt these children (remember that licensed agency part?) Never mind they have been provided with all the documentation necessary. (not necessarily what the organization is requesting, because at this point it's gotten ridiculous.) Instead they have chosen to not only continue to collect money for those children, but to continue advocating for a different family to go get them. They have been contacted by Grace Haven Ministries, "asking them to please be sure they were being open with the public who might be reading those children's profiles."

No response has been received indicating "The Other" organization has any intent on acknowledging this and instead continue to advertise the children.

From Grace Haven Ministries,

"No child is officially "taken" until an their referral is received in country, but when a group KNOWS a family is in process for the children and decides they don't want the family to, they SHOULD NOT be able to mislead the public and hide grant monies away.
GRANT ORGANIZATIONS  are NOT agencies. Look over closely the fine print. PRAY PROTECTION over the families who are victimized while trying to adopt. Adoption is hard enough! 

Abel's Eyes

Abel's new glasses came today. He's not thrilled, really. Surprisingly he kept them on from the time we picked them up at 4:30 until he went to bed at 9:00! Oh, believe me, he asked many times for us to take them off. Every time he pointed to them, making his worried sound, we just said, "Yep! New glasses! Good boy!" to which he would grin and walk away.

I wish I'd gotten a video of him in the first 30 minutes he had them on. I almost rear-ended another car because I was watching him in the rear view mirror and laughing hysterically! He was trying to see the glasses on his face - while wearing them - but without touching them. Crossing his eyes to see them on his nose, looking up at the top of the frame, looking down at the bottom, looking both directions to see the tip of the temple, turning his head from side to side but keeping his eyeballs in one place to look out different parts of the lenses. Beyond hilarious!!!

He walked around with this face for a couple of hours. LOL

When a person's vision has been bad for years, the brain learns how to interpret the information from the bad image it's given. Put glasses on and the brain has to relearn HOW to see, because now it has a different quality image to look at. The brain has to learn how to interpret this new information. So, when you put glasses on a kid for the first time, no, they can't see better. They see worse until the brain adjusts. (this is why all you parents of little kids with DS have a hard time getting your kids to wear new glasses!) For kids who have one eye that isn't really working (both Asher and Abel), their depth perception without glasses is not very good. They've learned to walk, run, and live life in general without it. Now suddenly a step is popping up at them, or uneven ground. They have to relearn how to navigate uneven surfaces. Thankfully, by keeping the glasses on as much as possible the first few days, the brain quickly adjusts. Abel did great keeping his on today, so within a couple of days he will be like Asher, and wanting his glasses on the moment his feet hit the floor!

Here's a quick video. You'll hear Abel's worried noise, as well as the "laugh" that is not really laughter but how he expresses anxiety. When we're out in public, these noises are constant. At home it's only when there is something new going on. Normally he's moving 100 mph. The new glasses slowed him down a bit. ;-) I'm sure in a couple days he'll be back to warp speed.

I couldn't leave anyone out of the pictures.

Axel trying to be serious. 

Asher has more facial expressions than any child I've ever met.

Destany

One year ago today we lost Destany. I don't have any more words than that. Five days from diagnosis to goodbye. DIPG is an evil disease.

Selective Memory

It has been 7 years since we heard the news.

I had allowed myself to forget some of the details so when things started changing a couple months ago, although I was concerned, I wasn't feeling that sickening panic.

Until this morning.

Today a friend of mine and I were discussing this blog. He has been reading here for five years. I mentioned that I started the blog in 2005, but wasn't really "into" it yet. It was the post I wrote on April 29th, 2007 that brought me back to blogging. (please go read the post I linked to for details)

All these years we have coasted along, noticing little changes here and there but nothing that would have us running back to the doctor. But in the last few months, we've noticed that Angela has become less able. Tiny bits of her skills have been lost. Things she could easily do before she is now needing some help with. Not much, but enough to make my sensors go off. Her gait has changed a tiny bit. The biggest difference has been her speech. Even Dean and I have a hard time understanding her much of the time.

This morning I went back and read that post from 2007 and I'm shocked at what I'd forgotten.  Some of the details in the findings of  her last MRI and the prognosis given by several doctors across the country. I was living happily in my state of selective forgetfulness. It is time to come out from the shelter I'd created for myself and deal with some things.

I called the neurologist to schedule an appointment, knowing Angela will need a new MRI done. She has been seeing her pediatric neurologist since she was 4 months old. He knows all about her. He knows she has never followed the rules.

But Angela is 17 now. They want her to switch to an adult neurologist.

I begged.

The neuro's nurse consulted with him and he agreed to see her again but then she needs to switch to one of his partners who works with adults. Don't they know she's just a baby???

I hate it. I hate that she's getting older. I hate that she's going to have to change all her doctors. She's a complicated KID with a history I will have to explain over and over again.

And have I mentioned I am extremely resistant to change?

I don't want to repeat an MRI but I know it's going to have to be done. It's been too long since her last one. I don't want to know what is going to show up on it. I just want to keep coasting. Knowing won't change anything but it will bring with it  more worries. God has this, yes. God won't wake up every morning wondering.