Do You Know the 3 Genetic Variations of Ds?

October is Down Syndrome awareness month.  I’ve enjoyed browsing various Facebook status updates this month related to Down syndrome facts and awareness.  I’m still pretty clueless about all the Down syndrome facts, but one thing I know for sure:  children with Down syndrome don’t deserve to be locked up in dark rooms, kept in cribs 24/7, and discarded as trash.

 

I know, without a doubt, that Cooper and Conner would be further ahead developmentally if they would have been given a chance.  Unfortunately, in their former country, people with Down syndrome are not given the same opportunities as “typical” children.  In fact, most people with Down syndrome in Ukraine are tucked away, hidden from society, believed to be mistakes, unworthy of an education, incapable of learning, seen as a burden instead of a blessing.  This same viewpoint was held in America at one time, too.  Education is key.

 

I just wish we’d have gotten to our sons sooner.  Six years of living in a crib 24/7 without stimulation, without love, without family, well, I just cannot imagine.  But our boys are still full of love and hugs, even after years of abuse and neglect.  People say that extra 21st chromosome is where love and hugs are found.  I’m not sure that a typical child locked away for six years would transition to family life as well as Conner and Cooper have.

 

When Cooper and Conner first came home, many people asked if we were sure they both had Down syndrome.  Even the medical personnel questioned this.  When the boys spent 8 days at Dell Children’s Hospital in March (right after they came home), genetic tests were ordered.

 

The genetic testing confirmed that both Conner and Cooper have Down syndrome.  But, interestingly, they both have different types of Down syndrome.

 

The three genetic variations that can cause Down syndrome include:

• Trisomy 21. More than 90 percent of the time, Down syndrome is caused by trisomy 21. A child with trisomy 21 has three copies of chromosome 21 — instead of the usual two copies — in all of his or her cells. This form of Down syndrome is caused by abnormal cell division during the development of the sperm cell or the egg cell.
• Mosaic Down syndrome. In this rare form of Down syndrome, children have some cells with an extra copy of chromosome 21. This mosaic of normal and abnormal cells is caused by abnormal cell division after fertilization.
• Translocation Down syndrome. Down syndrome can also occur when part of chromosome 21 becomes attached (translocated) onto another chromosome, before or at conception. Children with translocation Down syndrome have the usual two copies of chromosome 21, but they also have additional material from chromosome 21 attached to the translocated chromosome. This form of Down syndrome is uncommon.

 

Conner has Trisomy 21, which is the most common genetic variation of Down syndrome. Conner has three copies of Chromosome 21 (instead of the usual 2). 

 

 

Cooper has Translocation Down Syndrome, which accounts for less than 4% of all cases of Down syndrome. Cooper has the traditional two copies of the 21st chromosome, but he also has additional material from the 21st chromosome that has attached (translocated) to another chromosome, resulting in Down syndrome.

 

No matter the genetic reasoning behind their Down syndrome, Cooper and Conner both deserve love and life.  It’s been quite miraculous to witness how much progress both boys have made over the past seven months.

• Both boys are now eating soft foods (not just pureed foods).
• Both boys are learning to feed themselves and will pick up soft finger foods and place the food into their mouths.  They will also hold a spoon and will attempt to feed themselves, as long as someone is close by to keep them from throwing the spoon!
• Both boys are mimicking sounds.  Conner has said Momma several times.
• Both boys are much smarter than many people think.  They’re able to make associations and predictions.  They have definite likes and dislikes.  They are both mischievous and laugh whenever the other one does something wrong (like grab something and throw it across the room just because it’s within reach).
• Cooper is S-T-U-B-B-O-R-N!!!  He can do far more than he leads people to believe.  Fortunately, I’m more stubborn than he is, so I will wait him out, which sometimes means an extra 1.5 hours until one of us gives in.  It’s usually Cooper who gives in, but not without a fight. Cooper is great at fooling people into believing he can’t do something, when he really can, he just knows how to work his cuteness in his favor.
• Conner gives wet kisses often. And he hugs everyone he sees.
• Cooper is learning to show affection through hugs instead of hitting (which is what was modeled for him for his first six years).
• Both boys are growing exponentially and amaze us every single day with how much they’re learning and doing and progressing.  Each time the boys’ teachers and specialists write their goals, it seems that they meet the goals by the end of the week, and sometimes by the end of the day!
• Conner is now walking independently and has finally chosen this as his preferred mode of transportation.
• Cooper is now taking a few steps independently, and he will walk alongside someone for long distances as long as he has the security of holding someone’s hand.
• Both boys are sweet blessings of the Lord.

 

A Big Fat Thank You…and Party Favor Winners

Our family’s going CRAZY over how much you blessed us and the special needs orphans at Village of Hope in Guatemala!!!

 

I bet you can hear us all shouting with squeals and screams of gratitude and glee, “THANK YOU!!!!!!!”

 

WOW, a total of 53 toys were donated to Village of Hope—Guatemala, in memory of Chrissie’s 7th birthday.  The toys valued at $2,833.02!!!  (Actually, a few extra toys were donated (not from the Amazon Wish List) that are not included in this total figure!!!)

 

A total of $915 was donated via the ChipIn, in memory of Chrissie.  A few more donations were mailed, but those are not accounted for in this total.

 

That means a total of $3,748.02 was given in memory of Chrissie’s 7th birthday.  Actually, it’s probably closer to $3,800 because of the extra gifts and donations that haven’t been accounted for yet.

 

I bet you’re saying “WOW” now, too!!!!!!!  And I think I hear your squeals and screams of delight!!!

 

Isn’t that just amazing?  A week long fundraiser in memory of our daughter blessed our socks off AND will bless the socks off special needs orphans in Guatemala.  God is good!!!

 

I’m so very grateful to each and every one of you who prayed, shared, and donated.  This was all made possible by you.  God poured out His abundant blessings upon this fundraiser, and my mouth is now gaping as I stare at the totals, a picture of His goodness. 

 

WOW.

 

THANK YOU!!!!!!!!

 

Oh, and no party is complete without passing out the party favors!!!  Below is a list of the party favors winners.

Winner of Sterliing Silver and 14K Gold Necklace is Roberta Fanelli

 

Winner of Autographed Boss Your Heart Book is Christine N

 

 

Winner of Boss Your Heart little girl’s shirt (size 2T) and girl’s stampers is Chelsea T

 

Winner of Boss Your Heart shirt (size 2T) and Boy Stampers is Kathi Lolla

 

 

Winner of Boss Your Heart shirt (size 3T) and cowboy owl pillow is Kelsey Jakubauskas

 

 

Winners of the handmade bead necklaces from Uganda:

1. Dannon McMullen Jones
2. Lyn
3. Kara
4. Lydia Whitt Rosencrants
5. rdf30s
6. Laura Lynn
7. Emily Schmidlin

 

Winner of the USANA Children’s Vitamins is Shelley

 

Winners, please email me at BossYourHeart (at) gmail (dot) com to give me your shipping address (please write “Boss Your Heart party favor winner” in the email subject line so I can find your email more easily).  Be sure to include in your email the shipping info (shipping name and address).

 

Winners must contact me and give me this information within one week (7 days) or a new winner will be chosen.

 

PS  It was on this very day in 2010 that Chrissie became an American citizen, as she stepped foot for the first time on US soil.  Our plane arrived in Houston, and Chrissie exited the plane, walking through customs and into the airport saying, “Hi, y’all!” to everyone.  She met all the members of her forever family for the very first time.  She knew her siblings and greeted them with warm, gentle, genuine hugs.  Oh how we look forward to the day Chrissie greets us like that in heaven!!!

 

PPS  Happy 21st birthday, Samantha!!!!!!!  We’re so very proud of you!  We love and miss you!!!

Last Day of Boss Your Heart Birthday Benefit

Today would have been my mom’s 68th birthday.  It’s still hard to believe the shock the night of December 23, 2011 delivered.  It’s still hard to understand God’s plans, because we have such painfully limited vision of the bigger picture.  I’m grateful for the one constant in all of this unexpected change—we still trust, worship, and adore our Savior, regardless of our limited understanding of His ways.  No matter what, His ways are ALWAYS higher.  Always.

 

Today is the final day of the Boss Your Heart Birthday Benefit.  It’s been good this past week to have my mind focused on helping special needs orphans at Village of Hope—Guatemala, in memory of Chrissie.  Satan would love to steal our joy, especially with two birthdays back to back, exactly a week apart, of two of the most special people in my life (Chrissie and my mom), who both now reside in heaven instead of here on earth.  But Jesus has already won this battle, so we keep our eyes fixed on Him.  I remind myself often that Chrissie and my mom are the blessed ones, getting to eat all the brownie batter they want in Paradise.  Earth is not our home, heaven is, and I look forward to the day when we’ll all be reunited again.

 

 

Helping orphans, particularly in memory of Chrissie, brings joy and peace that passes understanding.  Having so many of you join us on this mission truly does wonders for our hearts.  To see so many people, most of whom we’ve never met, give so selflessly—it’s just overwhelming.  That overwhelming feeling squeezes the sadness out of our hearts as Jesus replaces it with His joy.

 

I’ve been completely blown away by the incredible support displayed in this mission.  53 of 56 toys on the Village of Hope—Guatemala Amazon Wish List have been purchased (and we still have today!).  These toys were not inexpensive either, in fact, many of the toys cost over $100/item, and yet God has chosen to bless this toy drive abundantly by providing so many selfless and caring givers.  And, in addition to the 53 toys purchased, $815 in monetary donations has been given.  I am in awe.  There will never be adequate words to express our gratitude.  Thank you, thank you, thank you.

 

Today is the last day of the toy drive.  Be sure to get in on the giveaway of party favors, too (leave a comment on THIS post to enter).  Hurry, everything will end at midnight CST, Oct. 15—tonight.

 

Here are the details again—it’s not too late (up until midnight CST Oct 15):

• Purchase a toy online by clicking HERE. This link will take you to the Amazon wish list for Village of Hope—Guatemala. When you purchase toys directly from this Amazon wish list, when you check out, you will see the option to have the toys shipped to my friend Gina, who will then ship ALL of the toys directly to Village of Hope—Guatemala. Think BIG—gather your small group buddies, Sunday School class members, neighbors, Facebook friends, and your family to pool your money together to purchase sturdy toys that will withstand much lovin’ from many special needs orphans. Perhaps you could donate a toy in honor of a loved one as a Christmas gift? Think out of the box and let’s bless the socks off the orphans who will soon be living at Village of Hope—Guatemala.
• You may donate your gently used toys, in a good condition, to Village of Hope—Guatemala. VOH will need good sturdy toys that will hold up to the love of many children. Thrift stores and garage sales often have fabulous toys at fabulous prices. If you’d like to donate gently used toys, you will need to ship the toys directly to my friend Gina, and then she will ship all of the toys directly to Village of Hope—Guatemala. Click HERE to contact Gina for shipping details (or email her directly at ginamshiland@msn.com).
• Donate money directly to Village of Hope—Guatemala, in memory of Chrissie. Tax-deductible donations may be given directly via the Chip-In gadget below. Our goal is to raise $7,000 because Chrissie would have turned 7 on her birthday this year on earth (October 8, 2012).
• HURRY, Chrissie’s virtual birthday benefit is only ONE WEEK long! October 8, 2012-October 15, 2012. We’ve got 7 days to raise $7,000—that’s $1K per day. God can do this! Spread the word, pray, donate! Help us help orphans in memory of Chrissie. Thank you!!!
• Oh, and we’ve got some fun “party favors” to throw in. See details on this post.

All donations given in memory of Chrissie during her virtual Boss Your Heart Birthday Benefit will be dedicated to purchasing much needed toys, educational items, and play equipment for Village of Hope—Guatemala. Your donations are tax-deductible and all funds donated in memory of Chrissie will go directly to Village of Hope—Guatemala to help provide FUN (in addition to faith, family, and future) to special needs orphans in Guatemala.

Laughter is the Best Medicine

Yesterday blew me away.  40 toys have been purchased from the Village of Hope Amazon Wish list, in memory of Chrissie.  WOW!!!  I cannot thank you all enough.  This is happening because God’s army is working together for the least of these.  What a beautiful thing.  Your prayers are so important to this benefit, and every time you share this story, it’s a chance for someone else’s eyes to be opened to God’s love for the orphan and His provision, right down to the details of toys.  Thank you so much!!!

 

Just in case you’d like to view a small glimpse of what the special needs orphan in Guatemala will experience when they play with one of the many toys that have been donated in memory of Chrissie, watch this video:

Oh my, how we miss that laugh.  This video was taken just 8 days after Chrissie got home from Serbia. That is JOY, folks, PURE JOY!!!

 

The Jack-In-The-Box toy that brought so much laughter to Chrissie was donated to us, just like you’re donating toys to the special needs orphans at Village of Hope in Guatemala.  I know without a doubt that the toys donated will bring joy, smiles, and laughter to these kiddos, just like this toy brought to Chrissie.

 

Thank you so much for praying, sharing, and donating.  I can’t express my gratitude adequately, not sure there are words.  Our hurting hearts receive so much comfort and healing when we see God’s people move in memory of our daughter.  This salve is better than any boo-boo bandage out there.  Thank you.

 

PS  Don’t forget to click HERE to register for a party favor and to view the story of the Boss Your Heart Birthday Benefit.

Love the Way God Works!!!

I just love watching the various ways God works.  His ability to accomplish His will is beyond my ability to fathom.  Well, everything about our mighty Father is basically beyond my ability to fathom.

 

Take a look at these screenshots of a friend’s Facebook page (the first photo is the status update of Chelsea, and the second photo is a screenshot of the comments that followed Chelsea’s update):

 

OK, I’m just blown away by this.  I LOVE, LOVE, LOVE how God works!!!  He sent a dream (multiple dreams) to Chelsea about Guatemalan orphans last night, and He rattled her so much that she got up at 4:30AM and purchased toys for the orphans, in memory of Chrissie!!!

 

As if that wasn’t enough to bless me this morning, I then saw that one of Chelsea’s friends also had a dream about an orphan last night, then saw Chelsea’s status update AND WAS MOVED to purchase a toy in memory of Chrissie.

 

HOW COOL IS THAT?!?!

 

I just can’t get over how God works.  Man, can I get a shout out for how much we adore God and His miraculous ways?!?!  WOOOOHOOOOOOOO!!!!!!!!!!!!!!!!!!!

 

Alright, now for an update on where we’re at with the Boss Your Heart Birthday Benefit for special needs orphans at Village of Hope in Guatemala.  As of 1PM Thursday 10/11/12 (love that date!), over 35 toys have been purchased/donated and $702 have been donated to purchase toys/educational items/play equipment for the special needs orphans at Village of Hope.

 

Let’s get another big shout out for this success!!!  Go God and go God’s people!!!  Y’all ROCK!!!  Keep up the fabulous work of praying, sharing, and donating. 

 

Oh, and just to remind you that there’s no judgment or criticism in any way for those who aren’t able to donate.  Please know that my pleas are not made with a critical spirit, I’m just rallying for the special needs orphans at VOH who are so heavy on my heart.  The more we share the need, the more people’s eyes will be open, the more hearts will be touched, the more lives will be affected, the more smiles will be brought to orphans.  “Prayer and Share” are equally important (if not more!) than donating because this is a team effort.  God’s hands and feet are not from just one person.  It’s all of His people working together, serving the orphan in whatever way He calls.  Praying and sharing the need are ways to serve.  Prayer is the most important ingredient of this benefit, and I’m so very grateful for every prayer lifted, every shared message, every ounce of support, and every toy and dollar donated.  This is all for His glory.  Thank you from the bottom of my heart!

 

Click HERE to enter the “party favor” giveaway and to view the info about the Boss Your Heart Birthday Benefit.

Toys for Guats

 

It’s time to get this party started, peeps!

 

We’ve raised $535 for Village of Hope—Guatemala and 20 toys have been purchased via the Amazon Wish List.  We’re SOOOOOO grateful for all those who have so generously and selflessly given, shared, prayed, and supported this benefit in memory of our precious princess.

 

Keep up the good work!  Let’s all do our best to raise awareness for this “Toys for Guats” mission!  (Not to be confused with ‘Toys for Tots’:-)

 

Click HERE to view more about the reasons why we’re begging you to help us with this benefit.

 

Click HERE to get registered to possibly win some party favors (giveaways)!

 

Thanks for sharing, praying, giving, and supporting—you mean the world to us!!!

Sad Hearts Transformed to Smiley Ones

Last night, we celebrated what would have been Chrissie’s 7th birthday.  I’ve got pictures to share below, but first, I’d like to remind you to help us spread the word about the online toy drive benefiting special needs orphans at Village of Hope in Guatemala, in memory of our princess. 

 

Click HERE to read more about that in case you missed it.  We absolutely cannot do this without your help and support.  We need you to help carry out Chrissie’s legacy here on earth.  Help us help orphans in memory of a very special princess who was once a Serbian orphan.

 

There’s lots of ways to help, and there’s even some fun party favors involved!  Read, pray, share, donate.  We’re so grateful for your help.

 

“I will not leave you as orphans; I will come to you.” –John 14:18

In case you didn’t know, Chrissie’s FAVORITE food in the whole wide world was BROWNIES, so, of course, we celebrated what would have been Chrissie’s 7th birthday with some ooey, gooey, chocolate-caramel overload brownies that Chrissie would have loved.  Yum!

We were blessed to have our precious friend, Rowan, join us for the celebration.  Rowan was recently released from the hospital after his 53rd surgery, with the most recent surgery being a massive brain surgery.  What a miracle to have him standing in our home on what would have been Chrissie’s 7th birthday!

 

Not only did Rowan bless us with a hand-drawn picture, roses, cupcakes, a princess balloon, a hand-made Chrissie bookmark for my Bible, and a beautiful card, but he also blessed us immeasurably by blowing out Chrissie’s candles (see video below).  Rowan is truly a hero, such an amazing inspiration and blessing to many, but such a special young man to our family.  Click HERE to read a little more about his amazing God-connection to Chrissie.

 

God always decorates for Chrissie’s parties.  Can’t beat this custom decoration—God painted the sky with a heart in the middle of the clouds, just above Chrissie’s grave (look at the blue heart shaped sky in the center of the clouds and use your cloud picture imagination to see it):

Chrissie’s horse, Navidad, joined us from the pasture.

After it got dark, we brought some fun glow-in-the-dark pink princess balloons to Chrissie’s grave.  It’s a tradition for us to release balloons in memory of Chrissie, but we’ve never released glow-in-the-dark balloons.  What fun!

The camera flash ruined the effect of capturing the glow of the balloons, but they were really awesome. :-)

We said a prayer, then sang happy birthday again to Chrissie, then released 7 balloons.  (It was really dark by this time, so the camera had a really hard time capturing the balloons.  The night setting on the camera made it look like there were more than 7 balloons in the sky, but there really were 7 glow-in-the-dark balloons released.)

Every single time that we’ve released balloons, there’s ALWAYS one balloon that doesn’t go up into the sky.  Always. 

 

We have a pond on our ranch that Chrissie named “Lake Palic”, after a beautiful lake in Serbia near the small town of Subotica, where Chrissie’s orphanage was.  There’s ALWAYS one balloon that hovers over our Lake Palic.  Always.

 

The three photos below capture the presence of this one pink glow-in-the-dark princess HELIUM balloon that hovered over our Lake Palic after its release.  It didn’t fly toward heaven with the rest of the balloons.  The photos below show the balloon with its reflection in the pond.

 

I LOVE how God sends us reminders of His presence.  When there’s no reason why this one balloon should have stayed around and hovered over our Lake Palic, we have no doubt that it’s God.  He gently whispers His presence to our hurting hearts and somehow turns that sad face to a smile.  He’s just so good at that!

 

And speaking of God’s smiles, here are a few snapshots of what Rowan and his mom brought us.

 

Rowan always draws the best pictures for Chrissie, and his explanations always turn a sad face into a smile. 

And, of course, Rowan’s mom knows how to bring smiles, too.  I love the card she chose for us, but I love the hand-quilted bookmark even more. 

 

God is good, and He displays much of His goodness through the actions of His hands and feet here on earth, the ones who serve Him by loving on others.

 

God is using all of you who have donated in memory of Chrissie to bring smiles to special needs orphans in Guatemala.  When these orphans play with the toys you’re donating to Village of Hope—Guatemala, in memory of Chrissie, the sadness in their hearts will feel the love of their Savior, turning sad faces into smiley ones.  Just as you’ve turned our sad hearts into smiley ones, these orphans will feel that same love.

 

Thank you so much for praying, sharing, and donating.  Keep up the awesome work!  We couldn’t do this without you!!!