Happy Halloween!

I'd like to close out Down Syndrome awareness month by sharing our Halloween photos. Max was totally into the festivities! He wasn't scared or overstimulated at all. He just rocked!

Actually, he is always in motion, so it's difficult to get a photo that's not slightly blurry. He's a fun kid!

I was so pleased to find matching outfits for Max and Theo!

Ralph is always entertaining and today was no exception. He just adds spark to our family!

We laughed so hard when he snatched that clown wig! Aching sides!

The addition of children with Down Syndrome to our family has enriched our lives beyond measure. Thanks for letting me share these boys with you!

Ralph is a character!

I had the camera out this morning, trying to get some photos of Theo. He is SO happy in the morning, and I would just love to get a nice photo of him smiling. He wouldn't sit still, so that was a fail.

But, as soon as a camera comes out, Ralph shows up ready to pose. He's still a little sleepy here...

Funny face!!

Every day, when we are waiting for Ralph's and Zhen's school bus, we have to count the spiders. Spiders are Ralph's new obsession! We have two. We have to go see them both. One on the porch roof...see it?

We watched her spin this beautiful web one afternoon. She works quickly and precisely.

The other big spider on the hostas...right at Ralph's eye level. I sometimes pretend to touch the spider, just to hear Ralph squeal with delight. Well, today he touched this spider himself, for REAL!! Oh boy! Poor spider!

Oh, and guess who was "Caught with Character" again?? Now I'm demanding that my other children tell me why they have never been caught with character! Ever!! I guess some people just shine a little brighter. 

No soup for me!

It's rainy today. So I'm making a pot of chili, and a double batch of cinnamon rolls.

I don't get to eat any of it, but I'm not sad.

I'm fasting.

And I feel great! Let me explain...

I was driving home from a special ed coop meeting (sorta like a school board for special ed students - lots of power in their hands) not too long ago when I just felt awful. Just sitting behind the wheel I felt gross. Unbutton-your-pants bloated. Worn out. I grabbed my phone and called my friend Traci Heim. It was a call for help. I was living through a storm of pure stress. I was even having a difficult time putting together a coherent sentence in conversation. I didn't want to blog because my brain fog was making it nearly impossible for me to find my words. Very concerning.

Now I've always been a dumpling, big boned my mom would say, but I've also always been enegetic, athletic and strong. The past six years - a medically fragile baby, sleeping with one eye on the pulse oximeter, near tragic drug overdoses, emergency c-section, failure to thrive, hospital stays, fights with doctors, fights with insurance companies, fights with school districts, hyper-vigilance, adding four children to our family, two adoptions, whacked-out post institutional behaviors, off the chart levels of stress - all these things and more had sapped my strength and energy.

I could not make it through the day without a nap.

Uncontrollable junk food cravings made me feel worse. And guilt was the cherry on top.

I needed a change, but how? With all my responsibilities? I bought a raw food cookbook, maybe that would help - sounded delicious! How about low glycemic index foods? Fine and good, but a mom who cannot count on getting a shower on any given day cannot count on having time to plan and chop and prepare those wonderful meals. Half of the kale I bought for green smoothies went bad and ended up in the garbage. Same with the beets I got to make borscht.

When I called Traci for help. it was because I knew that she had been doing something called a cellular cleanse. She experienced renewed levels of energy and significant weight loss. THIS! This is what I wanted. This is what I desperately needed!

I found out that Traci was part of a group of friends who had come together to reclaim their health and support orphan loving missionaries, my dear friends, the Twietmeyers, on their way to Guatemala. I wanted to feel better. And I wanted to help, too! I was ALL in!!        

I started my first Isagenix 30 day cleanse in September. Since then I have released 16 pounds and 28 inches, including 6 (SIX!!) inches off my waist. I can sit comfortably in the car with the seat belt on! More importantly, my brain fog vanished within a week. I could think clearly and use my words again! I could deal with the stressful school situations (oh my goodness!) and therapy drama we were experiencing.

I no longer need to "rest" in the afternoon.

I knew I was in bad shape, but I didn't realize how bad until I started to feel better. Oh goodness! I did take my measurements initially, but was too uncomfortable to even take a "before" photo of myself. I have a long way to go to reach a healthy weight, but I'm so thankful that I can say I have taken control of my habits again. I am managing my life instead of letting it push me around and hold me down.

There's more to my journey that I need to share, so please come back...

"Don’t you know that your body is a sanctuary of the Holy Spirit who is in you, whom you have from God? You are not your own, for you were bought at a price. Therefore glorify God in your body."
 1 Corinthians 6:19-20

Imagine!

I simply do not have time tonight to adequately express the good things that are happening with my little bitty Max. But I wanted to quickly share what has become a theme when discussing him with any given friend, teacher, paraprofessional, or therapist...

Imagine if ANYONE had EVER expected him to do ANYTHING...imagine where he would be right now.

Imagine if he had been encouraged to walk, to run, and jump instead of sitting in a wheelchair he should have never needed!  Imagine if he had been encouraged to make choices and express his feelings!! Imagine if he had been well loved and well nourished from birth!

Yesterday Max had a verbal explosion. He said "bye!" when I picked him up from school for private therapy. He said "ball!" to his physical therapist. He said "hi!" and "eat" to his speech therapist!! WHAT?!

I'm so encouraged by the measures we are taking to help him heal and grow. I can't wait to share more!!

Where did the weekend go?

Whoa...where did the weekend go?

We had Friday off school here. It was an unseasonably cold day for October, we even had some big sloppy wet snow flakes for a few hours. I baked a couple hundred cookies to split between our family and the high school cross country team dinner.

I made several types of dough in the morning, chilled them in the fridge, then started rocking the oven after lunch. I lost track of time and missed an appointment. Ugh. I was a genius to schedule an appointment on a day when the kids were out of school, but a dork to lose my place and miss it. Sheesh.

Friday night we had a senior recognition night for fall sports at the football game. I barely had time to clean up, so I arrived at the football game with damp hair. Thank God I dug out my warm winter boots and coat. I just about froze to death! In return I got a medal and a red carnation, and I got to hang out with my hubs and Chipper. 

Saturday morning was lazy and slow. We made some more cookies, because they had magically disappeared the day before. I found some half price school clothes for the little boys at Goodwill. It warmed up so nicely in the afternoon, I took some boys outside with a magnifying glass and showed them what kind of fun things they could do with the sunshine!

For the first time in a long time today, we got to go to church together! Theo was able to make it through the entire service...he is often too noisy and needs to be taken to the Friendship Room. Ralph showed a little bit of interest in singing today. I could feel his chest resonating as if he were really singing. We take an entire pew at the very back of the sanctuary. I'm very happy to have this spot in case we need to slip out unexpectedly.

The weather was so pleasant today that I took a bunch of kids out for a nature walk. We picked up a lot of aluminum cans. We found butterflies, purple flowers, dog tracks, deer tracks, and a beaver skull, too!

Ruby walked most of the way, but got tired on the way home. This is how I roll with three kids in a double stroller. It was a great upper body workout for me!

This should be a busy week as I'll be shipping out t-shirts and catching up with some other overdue projects. Can't wait to share.

Happy Birthday Jordan!

Happy birthday to my cute little Jordan! Look how cute and little you were...

You are an awesome kid! I love everything about you. Can't wait to see you rockin' your new climbing shoes...umm, after I send them back and get the right size anyway. Oops! Sorry!

Glad you got to play Wii for 4 hours today. That won't happen again until next year!

Stay Calm...

I'm not keeping up well with DS awareness month. I hope that I don't disgrace the whole awareness scene. No shame here...this is real life.

Tonight I want to share a bunch of photos with you. James and I met the neatest family in Ukraine in 2010 and we have been great friends ever since. Toby and Suzanne adopted their son Toby Jr. from the same orphanage as we adopted Theo and Zhen. Toby and Toby Jr. were headed for home as we first arrived in the country. I got to babysit little Toby one afternoon while the men went out for something...can't remember what.

Here is Toby Jr., Theo with Toby Sr. in the background. 

Toby Jr., Zhen and Theo. They have the exact same shade of ashy blonde hair!

Thomas with Toby Jr.

Emmalee with Zhen. They have a special thing...

See?

<3

Toby Jr. is so blessed to have such a fun family to call his own now. And I know that he has been a great blessing to them all. The love him so much that they want to give him a brother! And they want to bring another boy with Down Syndrome into their family! 

I can't find the words to tell you how much these folks mean to us. They are the perfect family for a boy with DS. To raise funds to get the adoption ball rolling, they have made up these great shirts!

The shirts come in toddler through adult sizes and in many different colors, too! Only $15 for kids, or $20 for adults, You can go here to order a shirt:  http://www.youcaring.com/adoption-fundraiser/a-brother-for-toby/94887

Everyone who orders a shirt will have their name entered into a drawing for the book, Sun Shine Down...an AUTOGRAPHED copy, signed by Gillian Marchenko AND her daughter, Polly!! Read the reviews of this wonderful book here: http://www.amazon.com/Sun-Shine-Down-A-Memoir/product-reviews/0989854205/ref=dp_top_cm_cr_acr_txt

The adoption community can be really tight. We generally support each other, ordering shirts and bidding on auctions to raise money for each other. It is a beautiful thing. Let's show this family that the DS community is just as supportive!! Only three more days to order these fun shirts for you and your kids. Thank you!

  http://www.youcaring.com/adoption-fundraiser/a-brother-for-toby/94887

A fun day

Today was the Buddy Walk in our city. It's my favorite day of the year! I just love all the beautiful faces and the feeling of brotherhood in the Buddy Walk crowd.

But we didn't get to go this year.

It's not the end of the world. We have had to skip a lot of fun and good things lately. We still manage to find other fun and good things to do.

We had pancakes for breakfast. I experimented some more with coconut flour...be warned, it sucks up a lot of moisture so I needed to increase the milk in the batter. But, it's got a great aroma, is gluten free and has lots of fiber. We are really paying attention to good nutrition here!

After breakfast we loaded up the strollers and headed over to the fall festival parade. Max had fun waving at all the politicians and beauty queens riding in convertibles. Zhen had to cover his ears to deal with the fire truck and police car sirens. Ralph and Ruby filled up a couple of plastic pumpkin buckets with candy tossed by cheerleaders, church groups, and nearly everyone else in the parade.

The afternoon was simply beautiful! The kids played out back and got filthy dirty while I baked a cake. Max decided that he would allow us to place him in the baby swing today without having an anxiety attack! It was nearly too much for him to handle, but he looked around and saw Ruby swinging next to him. I believe that he decided that if Ruby could do it, then so could he!

It was a great day, but I think we'll try to do the Buddy Walk next year.

Challenges and victories

I'm pretty sure I've shared this before, but Ralph is pretty awesome. I remember thinking he was the cutest baby ever, the moment I saw him for the first time. It was a brief but sweet moment of calm and pure love before our world caved in.

It wasn't Down Syndrome that devastated us, it was heart and lung disease...ambulance rides and snotty doctors...pulse ox monitors and experimental drugs...insurance, overdoses, oxygen and so on.

I recall with some embarrassment, the day the sweetest lady from the local Down Syndrome Society came to visit me at the hospital. I wasn't ready. I wasn't particularly pleasant. I wasn't convinced that my son would live long enough for me to concern myself with DS.

Ralph survived. He made it through one challenge after another. The challenges are different now, but we like to celebrate our victories. Like today...

Ralph was "caught with character" at school today. He was caught in the act of sharing toys with a classmate. For him to be interacting with his regular ed peers and to be accepted by them is a huge victory. 

It is one thing for me and my family to understand Ralph's awesomeness. It's a super special thing for the world to grasp it.

The teen boys...

Teen boys, I've known a few. Most are just little kids in awkward, suddenly-big bodies. When my oldest boys were young, they were kind and polite, at least in public. People would say to me, "just wait until they get to be teenagers," as if they would sprout devilish horns and become miserable, anti-social and uncivilized. Some kids do, I guess. Maybe I just got lucky. I know I wasn't a perfect mom, because they have been open enough to share with me the ways in which I failed them.

I just remember LOVING them during their teen years. I rejoiced at the transitioning from dependency to independence. I relished letting them take risks and challenge themselves. It wasn't intentional, and I didn't really understand it until I had a chance to look back.

I met some amazing teens in Ukraine last year. Maybe because I'm a mom of so many boys, but those motherless and fatherless boys really grabbed my heart. Take Sasha, for example...

...he got his hands on my iPad one evening and went bonkers! The sweet boy took photos of EVERYTHING he could find. The toilet, the cabinets, the towels, fruit in a bowl, himself in the mirror. When I showed him that he could take photos of himself without the mirror, he was so excited...and he took a bunch more photos of himself. I cannot bear to delete a single photo that he took. His childlike spirit touched my heart. He's a sweet boy!

 


And then there is Valeriy, a university student I met, an orphan from the age of four. He accompanied me to Kyiv as I prepared to fly home with Max. Valeriy has a tender heart for orphans and was such a big help to me in the first few days caring for Max outside the orphanage. My apartment was not ready the morning we arrived in the city, so we went to stay with another adopting family for breakfast and to hang out for a few hours. This sweet family had just taken custody of the sibling group they adopted, so the apartment was full! I know that Valeriy would not have wanted me to see it, but it was painfully plain on his face...he won't ever be adopted...he was the only person in the apartment with no family.

He applied for a visa to visit the USA, but was denied. He is now attending a trade school, and not getting enough to eat. The life of an orphan graduate is brutal. It's no wonder many of them give up altogether.

It makes me think of sweet boys like my Sergey. I makes me wonder what his life will be like in three or four years. Will he be strung out on pain pills or huffing glue? Will he be stealing things to sell for food money? The statistics don't look good. Without loving guidance, how will he navigate the big bad world?

Have you ever considered adopting a teen? Have you actually done it? Would you share a little bit about your experience in the comments section below? Thank you so much!

The hardest part

The most difficult part of our Ukrainian adoptions has not been the maddening and seemingly impossible paperwork. Not the multiple layers of government clearance. Not even the huge mountain we call fundraising.

The most difficult part for me is leaving the other children behind, knowing what will likely happen to them. Most kids with even mild disabilities will live their lives behind locked gates of an asylum. Typically developing boys and girls growing up in orphanages face huge challenges as well.

Unwanted, unloved, and with few practical skills, orphan girls often turn to prostitution. The boys get involved in crime. Drugs are freely available to escape from the pain. 10% commit suicide before they reach the age of 18.

I consider myself fortunate to have visited many facilities during our adoption of Max. From an adult mens' mental asylum to trade school dorms, I met some of the most precious people. The young man with Down Syndrome who begged me to pray for his hurting teeth. The big talking teen boy with a swagger...who remembered my name after a whole month when I visited his dorm a second time. The little girl who gave me her Masha doll as a gift. The young woman who had escaped a life of drugs and prostitution, but not without losing her good health. I hold all these in my heart now.

One boy grabbed my heart and just won't let go. Today was his birthday and I just get very emotional when I think about this sweet boy.

The first time I met him, he would not leave my side. He wanted to show me his English book and we practiced reading some sentences together. He wanted to please me so much!

The second time I visited him was for his facility's Christmas program. All the kids did a wonderful job performing. The priests were there giving out baskets of candy, but he was willing to hang out with me for a few minutes and let me take some pictures.

Perhaps you wouldn't ever consider adopting a disabled child (it's NOT for everyone, I get it)...but would you consider a teen? Gosh, I have met some of the absolute SWEETEST teens...I'll tell you about a couple of others next time.

KC once again

I was in Kansas City with Max again yesterday. He finally had his eye surgery!

God willing, we are done with surgeries and medical stuff for the year. Sweet Max got his eyes straightened out and we jumped in the car and drove home like no big deal. His eye is red today, and I don't feel like I should share that kind of photo, so here he is glaring at me beforehand. No breakfast makes him sorta grumpy.

Really glad that's over with! Time to get on with life.

I shall take the heart

Occasionally I will read something so beautiful and well thought out that I have to toss whatever I'm working on into the waste basket. Enjoy this, from my friend Michelle, mother of Ciarra - who has Down Syndrome:

"Did you know that in the original Wizard of Oz book, the tin man actually started out with a heart? In fact, he was wildly in love. But a witch cast a spell on him that caused him to hurt himself, over and over again, until he had lost all of his limbs, and had to have them replaced with tin. The tin man believed that this made him stronger, he was like a machine, and unstoppable. But the wicked witch cast another spell that split him in two, and tore the heart from his body. Still, he believed this made him stronger, because he didnt have to feel, didnt have to care. But he knew something was missing, and even with his invinceable body, he craved a heart. His body became rusty and old, and he longed to love again.

Dorothy and the Scarecrow found him and took him to the Wizard of Oz to get a heart. Along the way, the Scarecrow and the tin man talked. “I shall ask for brains instead of a heart,” said the Scarecrow, “for a fool would not know what to do with a heart if he had one.” “I shall take the heart,” returned the Tin Man; “for brains do not make one happy, and happiness is the best thing in the world.”

Indeed.

When they arrived, the Wizard of Oz said to the tinman: "As for you, my galvanized friend, you want a heart. You don't know how lucky you are not to have one. Hearts will never be practical until they can be made unbreakable." 

Said the Tin Woodsman: "But I still want one."

In many ways, Ciarra is like Dorothy to me, leading me to my heart. Taking me back to when I was young, before judgements and bias clouded my vision and stole my heart. The world is like the Scarecrow, trying to tell me that heart doesnt matter, that brains are all that count. Like the Wizard, I know that having your heart laid open for the world to see is painful, and that being this open to another human being will leave me vulnerable and scarred.

I still want that.

I am like the tin man, regaining myself piece by piece, allowing myself to learn to see what matters, searching for what is real and important and vital to life. The rust is falling away, my heart is open, and I have learned that it doesnt matter what the world thinks or wants. The only thing that matters is love.

"You DARE to come to me for a heart, do you? You clinking, clanking, clattering collection of caligenous junk!"

Why yes, yes I do.

Happy DS awareness month, Ciarra. Thank you for teaching me to see past all the things that dont matter. Thank you for bringing back my heart."

THIS is how I feel about my boys. Thank you for putting perfectly into words, Michelle!

Hello October!

I love October. It's the best! Warm days still, but crisp, starry nights make a regular appearance. Fall colors are on their way along with shorter days. Time to break out the boots and jackets. What's not to love about October?

It so happens that October is Down Syndrome awareness month. If you have followed us here at Ralphcrew for any length of time, you probably already know that I usually try to write something every single day in October as part of a DS awareness challenge. It will be a real challenge for me this year, considering the non-stop drama we have been experiencing.

But, I think I'll go for it. Happy DS awareness month!