Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, June 30, 2012

Thank you

A week ago tomorrow we formally said goodbye to me great niece Destany. Some of you made some very generous contributions to help cover funeral expenses. My sister Sandie (Destany's grandma) offers  her thanks:

"Thank you everyone for your help! The funeral was beautiful, the pink was abundant, and Melinda's Princess was honored in such a touching way. Please continue to keep Melinda in your prayers as she puts one foot in front of the other. Life has been more difficult for Melinda than any of you can imagine, and to add this to it, is just not fair at all. Pray for Grace, strength and healing. Thank you again!"

Friday, June 29, 2012

Giveaway! Only One Day Left!

There is only one day left to enter the Gillette Venus giveaway! Go here and tell us how you handle talking to your daughter about some of those more difficult steps in life.

Wednesday, June 27, 2012

Special Olympics 2012: Misc

Here are miscellaneous pictures from the Special Olympics track meet last weekend. Some of my favorites out of the several hundred I took!

Lunch with the team.

One of her relay teammates. The girl in blue used to swim with Angela. 

Love this picture: Dean with his ducks.

 Handsome Axel.

My favorite man in the world. 

They have an Olympic Village, where there are all kinds of things for the athletes to do. One of the biggest hits is always Karaoke. Angela had a song in mind but they didn't have the music for her. She didn't really seem to care. For those going to the NDSC conference in DC, she'll be performing there. LOL

Asher defying gravity. He is ALL BOY, always climbing whatever he can. His feet are 2 ft off the ground here. LOL


Tuesday, June 26, 2012

Special Olympics 2012: Axel

This is the 2nd time Axel has competed in Special Olympics. The first time was a month ago and he really had NO CLUE what was going on. But on this day, after watching all of Angela's races the day before, he finally got it. Suddenly it all made sense to him, all of our explaining "pump your arms and RUN." was for a purpose! 

Hi all you people! (I know my mom is out there somewhere. I can hear her.)

There she is, pointing that camera at me again. 

Runners on your mark...

Running running running...

Look at all those people cheering for me! HI PEOPLE!!!!!

While I was at the starting line taking pictures, Dean was at the finish line taking video. :-) Axel is the very last green shirt. 


Woo! That running is hard work!

Alex...I mean Axel getting his first medal EVER! (and clearly he has been watching Angela too much.)

Look Papa! I got a silver medal!



Leaving with one of the coaches for his next race.

He looked so small out there on the field!

Keeping his eyes on the finish line.

Here I go! Pumping my arms like Mama showed me.

This running business is SO FUN!



See the orange cones? Yea that would be the finish line, but he's still running. LOL


(whistling to himself)

As I was watching him walk to the awards stand, I had to capture this face. You have to wonder if he thinks about how different his life was 18 months ago. There were no races, no Special Olympics, nobody cheering for him. Life was very different then....

Now he has this: A big sister who is more proud of him than anyone else could possibly be!



Monday, June 25, 2012

Special Olympics 2012: Angela

Although this past weekend was quite difficult as we said goodbye to Destany, it was also a weekend of smiles as we focused much of our attention on the Special Olympics Minnesota Summer Games. Since we have two kids competing now I took several hundred pictures!  I will spare your eyes and only post some of my favorites, and divide them up into two (or three?) separate posts.

Getting ready to run the 100 meter. (she's looking for her mom. ;-) 

Runners on your mark!

And she takes the silver! 

She's awesome and she knows it!

4x100 relay  handoff

This was at the end of a long, hot day and Angela was totally wiped out. She only had to run 100 meters but that did her in. 

Crossing the finish line. She ALWAYS cheers for herself at the end, but not this time. Instead she sat down. BAD SIGN for the kid with anhidrosis!!! She did it though! 

Her relay team took 5th place. 

Sunday, nice and cool, perfect for a track meet! We've always said Angela is her own best cheerleader. You'll see why in some of these pics. This was on her way out to complete her standing long jump.

If you know Angela, you can almost her her "Woooo!!!" in this picture! As in "Wooo! It's my turn!"

ONE.....TWO.....

THREE!!!!!!


See mom? I DID IT! 

WOO HOO! I got a ribbon!




Sunday, June 24, 2012

Favorites

It's been a long weekend and it's not even over yet. I don't have a lot to say at the moment but I wanted to post my favorite picture from this weekend.


Thursday, June 21, 2012

On the Lighter Side

We had company last weekend. Asher and his little friend Lillian snuck off to watch Signing Time on an iPhone. Well, Lillian didn't really plan on sharing the entertainment. LOL


So Lillian left him in the dust and Asher wasn't happy about it. This is the first time Asher has ever expressed frustration. Progress folks! Progress comes in many forms.





Funeral Notice

Destany's Service will be held on Sunday at 
Good Shepherd Church
 (1407 Cedar Ave., Glencoe, MN)

 It is being done by the 
McBride Funeral Home in Glencoe 
(1222 Hennepin Avenue Glencoe, MN 55336)

 
ALL SERVICES will be at the 

Good Shepherd Church
3:30 Viewing4:30 Service


Following the service will be a potluck lunch (please bring something to share)
There will be no public internmentIN MEMORY OF DESTANY'S WISH FOR HER 7TH BIRTHDAY, PLEASE WEAR SOMETHING PINK.Flowers or cards may be sent to the Funeral home and they will deliver them to the Church.Destany's family thanks you ALL for your kind words and thoughtful prayers.

If you would like to help the family with burial costs, contributions can be sent to the address below, or using the chipin button at the bottom of this post.


To Destany
C/O Sandie Adams
2100 Blake Ave
Lester Prairie, MN 55354

or via Chipin

We Need Help

Funerals are incredibly expensive, and even going as "cheap" as we can it's hard to come up with the funds. I have spent the morning calling many organizations and foundations that have been suggested to me. If you know of anything else, please post in the comments.

Here's what we have so far and who I've already contacted:

Children's Hospital of MN: Will contribute $1000
County Social Services: Can contribute up to $2100 - must be paid back

Children's Burial Assistance: No - they are state specific
The Tears Foundation: No - infants only and state specific
Kids Wish Network: No - only for children who are wish recipients through them.
Make A Wish of MN: No - they don't contribute to funerals
Cancer Society: No
Funeral Consumers Alliance: No, but they will help finance or figure out how to reduce costs.
There is no life insurance and there are no employer benefits.
Hearts and Hands of MN - waiting for a return call.




Wednesday, June 20, 2012

Back in Time

A friend of mine was looking for an old website, and I mentioned the Wayback Machine. We we couldn't find what we were looking for, so to test it I searched for an old blog of mine. Downcues.com 

Oh my gosh! You have to go to it! Make sure your speakers are up all the way so you can hear Angela's little tiny voice. It was done in 2005 when Angela was just 7 years old.

After the events of the last week, this brought me to tears tonight.

Tuesday, June 19, 2012

Can You Imagine

 A mother. A father. Every day fighting to keep their child alive. Every day, praying their child will get another chance. And yet in order for their prayers to be answered, another family has to say goodbye.

Some families live in the hospital. Their child on drugs and machines to do the work their organs cannot do. Waiting...waiting for the transplant coordinator to come rushing in. It's time. It's time for your child.

This afternoon families who must ALWAYS stay within two hours of their transplant center, who keep a bag packed at all times, who always have a pager on them, felt that sudden rush of adrenaline when that pager went off. THE PAGER. The one that tells them to drop whatever they are doing, get in the car NOW. Hurry...today MIGHT be the day a was found for your child.

And as they drive to the hospital praying this isn't another false alarm, they know. They know that somewhere, on their knees with grief, is a mother and a father of a child they had to let go. That mother and father made the choice to save them from the same fate.

Right now, at the very moment I type this, there are children, parents, families, who are driving back home. The disappointment. Today is not the day. Not for their child.

Because Destany's tumor was cancerous, her organs were rejected by whoever makes those decisions. Instead her mommy rocked her to sleep at 3:00 p.m. on Tuesday, June 19th, 2012.  Princess Destany Mariah Thomsen

Please pray for Destany's mom Melinda, her dad Joey, step dad Shaun, and Destany's little brothers.

Precious Jesus here I am
A gentle child your little lamb
Though I am not very old
I am ready to walk on streets of gold
Thank you for the time I had
Making memories with Mom & Dad
Bring them peace and comfort when they cry
And let them know its not goodbye
Bring them laughter and calm their fears
Let them know in heaven there are no tears
The pain is gone the joy is true
Let them know that I’m here with you
Hold me Jesus and take my hand
Walk with me thru the promised land
Let Mom know this was your plan for me
Let her feel a gentle breeze and know that it’s a kiss from me
Let Dad know of your plan too
Fill his heart with gladness too
For I love them Jesus and they love you
Hold them close when they are feeling blue
Keep them close to you and let them see
All the blessings you gave to me.
Loving parents, friends and family
Take me home Lord as I am
A gentle child your little lamb

Saying Goodbye to a Princess


Yesterday Destany went to Minneapolis Children's hospital to have her first radiation treatment. The only way to battle DIPG. Shortly before she was to be sedated for the treatment she had what appeared to be a seizure, or seizure-like event. She was admitted and an EEG run where no seizure activity was found. She was sedated at this point, so it was decided to go ahead and do the radiation treatment.

Unfortunately it was all just too much for Destany's brain stem. It just couldn't do the work it needed to keep her alive anymore. Destany was placed on life support. Sometime later she stopped having any response to pain and her pupils were no longer responding.

This morning when I arrived to the hospital they were removing her from the machines to see how she would do. As was expected, she was not able to breathe on her own. After seven minutes she was placed back on life support.

Melinda has decided to do what she can so another mother does not have to go through what she has today. Doctors spent today doing blood type matches so that another child might live even as we say goodbye to Destany. As I type this Destany should be in surgery. Tonight there will be several children to whom Destany has given life.

Sunday, Destany with her mommy Melinda.


Sunday


Sunday: Destany with her uncle Dustin and Papa Chuck

Sunday, Destany with her Papa Chuck and mommy Melinda

Sunday: Destany and her aunt Amanda...her second mommy. 

Diva Destany

Destany and her mommy Melinda

Sunday: Destany and her aunt Nicole