Did you know?

Did you know that our family is in the process of adopting Alec and Zhenya, two little boys with Down Syndrome from Eastern Europe? Isn't it exciting?!

Did you know that they face a dark future as prisoners of a mental institution if they are not adopted by the age of four? We are in a huge hurry.

Did you know that adoption is crazy expensive? Not out of reach, but pricey to be sure.

Did you know that we could use your help? There are lots of ways. Just ask!

Please visit our adoption blog at www.psalmsixtyeight.blogspot.com and stand with us prayerfully and financially as make this journey.

I noticed very early on in Ralph's life, that many people have very low expectations for a child with Down Syndrome. I'm glad that he wasn't my first or second child or I might have been inexperienced enough to listen to them.

A neonatologist at Ralph's first hospital was one of these people. She insisted that Ralph would have feeding issues and would likely need a surgically implanted feeding tube. Many preemies and babies with DS do indeed have feeding issues, but her attitude made me wonder if some of these problems may be exacerbated by doctors with negative attitudes and low expectations.

Being an experienced mom and used to being in charge of caring for my own children, each of Ralph's hospitalizations were an exercise in humility. Asking permission to feed, to hold, and to bathe your own child is highly unnatural and demeaning. In order to preserve my sanity I learned to play the game.

After his first seven weeks in the hospital, I figured that if Ralph could bottle feed, great, he would be able to come home. If I insisted on breastfeeding him in the hospital it would be long drawn out ordeal to prove that he could gain weight. So I played the game and got him home where he was entirely my responsibility. Then I taught him to nurse in the comfort and privacy of our home.

Did he do great? Nah. But I've learned to adjust my own expectations. I don't need any help.

Now I'm thinking about potty learning. I know typical kids who are not fully trained until Kindergarten or later! I know that the expectation for a child with Down Syndrome is that low or much lower. Says who?

Ralph is showing signs of readiness. He stays dry for long periods of time. He signs "potty" when I change his diaper. He says "poop" and holds his nose when he is dirty. OK, "poop" really sounds like bbbffff, but I can understand him! I can't ignore these signs. And, now that he is not taking Lasix anymore I feel like he has a great chance of success.

I've been thinking so much more about Ralph's future lately. When I think of SSI and Medicare and group homes and sheltered workshops I can't help but think, why? And, says who? He's young and I have the privilege of helping him aim high. We may have to adjust our expectations at times, but that is OK.

I pledge to continue to ignore low expectations for all of my children, but especially for Ralph.

Making it up as I go.

Tomorrow is End the R-Word Day and later this month is World Down Syndrome Day. I'll be posting more about Down Syndrome this month in observance of these two events.

The moment that Ralph was born and the midwife said the words "Down Syndrome", I had a flash of clarity. It was one of those defining moments. I crossed a threshold. There was no going back to the way things used to be. But it was OK.

Ralph was very sick at first. His lungs were damaged by meconium and I'm sure the Atrial Septal heart defect didn't help the situation. We didn't tell people that he had Down Syndrome. Not until his condition stabilized about 6 weeks later.

I was criticized for this. Fine with me.

I also got into the habit of not mentioning Down Syndrome when we would meet people. I was criticized for this also. Fine. I was always, and I still am, happy to answer questions from curious people. The truth is that most people are too afraid to ask. Too afraid to offend.

Am I ashamed of Ralph having Down Syndrome? Not at all. I just don't choose to define him by his extra chromosome. And I never felt obligated to share it with casual acquaintances.

I don't know if I was right or wrong. I'm really quite new at being a parent of a child with Down Syndrome. He didn't come with a handbook or anything. None of my babies did.

I'm still just making it up as I go.

My big project

Now that it is done it doesn't look so big! In honor of Down Syndrome Awareness Month I decorated a table for my church's Fall friendship dinner! This is probably the most fun ladies event at my church. 

The theme of my table was celebrating and protecting children with Down Syndrome all around the world. My my colors were blue and yellow with a globe for a centerpiece.


I tied blue and yellow bows on each goblet. I had a slide show of Reece's Rainbow children playing in my digital picture frame. The Gifts book was available for my guests to browse through.

Here is a wide shot of the room. There were so many beautiful tables.

I was very nervous, because I've never done this before. I don't have a lot of beautiful dishes and table accessories. I borrowed the tablecloth and coffee cups from the church kitchen.

I made little table tents with RR children from different countries. The tent held a mini flag of that country. On the back of the tent I listed the adoption program requirements for each of the eight countries that I chose.

Before the dinner started, the guests toured the room to view all the tables. I was able to visit with them about Down Syndrome awareness month and Reece's Rainbow. The speaker/singer really spoke to my heart. I have much to treasure from today. What a fun evening!

Funny, it took me several days to put this all together and about 15 minutes to break it down! haha

Day 17

I'm going to share a beautiful piece of fiction today from The Unknown Contributor. I hope you like this...

Lunch at Pizza Hut

In my dream I am sitting in Pizza Hut because that is where I first saw her. She wanders over to my table with her big blue eyes locked on mine. She has curly brown hair... curls... rare for a child with Down syndrome. She holds her baby doll up and asks if they can sit with me.

“I don’t want to be your mother.” I blurt out.

She slides into the seat and looks at me with surprise.

“Why not?” she asks.

I suddenly feel guilty and defensive. “92 percent of mothers just like me don’t want to be your mother.” I answer foolishly.

“Why not?” She repeats her question.

“Well, because you are not as smart as other kids.” I begin.

She cuts me off with a song, “a, b, c, d, e, f, g...” After it is over she continues, “Your shirt is blue. I know that and so I am too smart.”

I thought she was four or five years old but now I see she has a gap where a bottom tooth has gone missing. This must make her more like six.

“I think you will cost more.” I tell her.

As if she is reading my mind she says, “I don't wear diapers anymore. Those are for babies.” To prove this fact, she lifts up her baby doll and shows me its diapered bottom.

“You might get sick.”

“I already was sick.” She answers. “See?” She says as she pulls her tee-shirt up over her face to reveal a faint scar running vertically down her whitish-pink chest.

“Did that hurt?” I wonder aloud.

“I don’t remember. My dad says it hurt him real bad.” She answers, her small voice muffled by the cotton shirt.

“Put your shirt down.” I say and she does.

“You might grow up to be ugly.” I know this might hurt her feelings but I have to say it.

“All grown ups are pretty.” She laughs, “Except for the boy ones. Some of them are stinky.”

“I mean, you might drool or your tongue might protrude,“ I clarify.

She sticks her tongue out at me. “My tongue is pretty,” she says, “and I only stick it out when I am tired.”

“You might die.” I feel bad saying this but she needs to know the truth.

Her answer is soft, “If you won’t be my mommy, I am already dead.”

We eat in silence for a while. When my slice is finished, I tell her that I must be going now.

“Will I see you again?” She asks.

She has worn me down. “Yes,” I tell her, “I think so.”

PSA - What to say.

I guess I should balance my "What not to say" post with one about what TO say, particularly to a new parent of a child with Down Syndrome. This can be a minefield! It may or may not be a frightening time for the new parents. They may or may not have had a prenatal diagnosis. There may or may not be additional health issues.

They may not be answering the phone! Seriously folks. I was so traumatized after Ralph was born that I would not talk to anyone for weeks. (It was mostly because he was so sick. Down Syndrome was the last of our worries at the time.) I can laugh about it now. No one had the opportunity to say the wrong thing to me because I wasn't talking to anyone.

This minefield is really easier to navigate than you might think. Isn't he cute?

Here is what you could say:

Congratulations! Appropriate for any new parent. Often accompanied by a gift!

Wow! He is really beautiful! You can substitute pretty, handsome, cute, or groovy.

Can I hold him? You won't regret this. Babies with DS are so soft! (Please always ask before you grab or touch a baby or child with DS. Germ-o-phobes like me will appreciate you.)

What could you say to a parent of an older child with Down Syndrome? What would you say to any other parent of a typical child? It's usually safe to ask questions. Ask about their interests. Ask about school. Invite them over. Set up a play date with your children and theirs. Offer to babysit.

Parents of a child with Down Syndrome often find themselves becoming socially isolated. Your invitation or offer will reassure them that their child is accepted and respected. That's a treasured gift.

PSA - What not to say. Day 14

I was visiting with a dietician today about Ralph and his eating habits. She was a friendly, well intentioned person so I chose not to correct her when she told me that she could tell that Ralph was "high functioning" because of his mild Down Syndrome facial features. I found it very hard to focus on our conversation after that.

First of all, this is totally not true. Secondly, he's two. Sure, I think he's as smart as a whip, but just like any child of two, his potential is unknown. Thirdly, just who do you think you are, anyway?

I'm a little bent out of shape so I'll need to vent for a minute. For those of you who are unsure of what to say to someone who has a child with Down Syndrome, take note. (Just for the record, I'm not known for always saying the right thing.)

Do not use the word or any variation of the word mongoloid. This is archaic and racist. 'Nuff said?

Do not tell me how happy and loving people with Down Syndrome are. This is a sweeping generalization that takes away a slice of their humanity. Human beings display a wide range of emotions. People with Down Syndrome are human beings.

Do not talk about how high/low functioning my child is. I have a very bright eight year old who cannot tie his shoes. He's great at math facts. I guess function level depends on the task at hand.

Don't tell me I'm a saint or how you "don't know how I do it." That is insulting to me. If not everyone can be saintly, like me supposedly, then perhaps killing an unborn baby with Down Syndrome can be justified. I'm just a mom doing her best to raise her children. You'd be surprised (shocked?) at how unsaintly I can be. You'd be surprised at what you could do if it was required of you.

Whew! I feel better now.

Gifts - do you know what you are missing?

I wasn't going to go this direction (yet!) but something came up. I remember when Ralph was born that you couldn't drag me away from him. Sure, I had seven other children at home, but I was not going to leave Ralph's side. Kind of like the shepherd who left the 99 to find the 1, I felt that he needed his mommy  by his side.

It is only by the grace of God that Ralph was born into our family and born in this country. What would I have done if I lived in a place where parents often leave their infants with Down Syndrome in the hospital and tell their families that the baby died? A place where there are no services, no therapies, no inclusion for disabled people. Would I be strong enough to never leave him? 

Here is Ruslana. Would you pray for her today? She lives in a country where it was impossible for her birth mother to keep her, because she was born with Down Syndrome. Her new mommy and daddy are on their way to claim her but she is in a dangerous situation. She is slated to be transferred to a mental institution in the next couple of weeks and may be lost to them. 

It wasn't so long ago that babies with Down Syndrome were routinely institutionalized in the United States. These days our society is more enlightened, isn't it? No. The fact is that a large percentage of babies diagnosed with DS in utero are snuffed out. I've heard figures of 80-90% reported. They don't know what they are missing.

It's kind of sad, really. For most of us parents of children with DS, this isn't the life that we would have chosen for ourselves. But, it is a rich and rewarding life. One that we would choose again, given the choice. Having Ralph for a son has made me a better person and touched many other lives. He is truly a gift.

Which brings me to my drawing announcement! Each day that you leave me a comment this month I will enter you into a drawing for, what else? Gifts 2: How People With Down Syndrome Enrich the World!!

From the Amazon.com product description...Gifts 2 presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.  

Don't be shy, you lurkers! Leave me some bloggy love so I don't feel like I'm talking to myself! And pray for Ruslana.

Happy October! Day 1

**If you are here for 31 for 21, please click on the Ralph and the Crew title for the latest post. I submitted the wrong link for the challenge. My bad.**

When I think of October, I naturally think of...what else? Hunting! Our family has been helping with the Muzzleloader Hunt for Hunters with Disabilities for many years. Since before Leroy was born at least!

October is also Down Syndrome awareness month. I'll be posting here each day as part of the 31 for 21 challenge. I have lots of ideas about what I'll write about. I have my agenda, but what do you want to know? Really. Anything. Don't be shy.

Each comment/question you post here will be entered into my October giveaway. I'll announce the prize tomorrow. Sorry friends, facebook comments don't count!

 Here is Ralph at deer camp last Sunday. He spent hours pretending to drive! What little boy doesn't love to drive? Of course, he had to put on a seatbelt.

What would a blog post be without a photo of Ruby?

DS Clinic Day

Where to start...?

Our trip last week went well! As we made our way to our little hotel in Westport I noticed that the bars were packed. On a Tuesday evening at 7pm? Then I drove past a big white party tent stuffed full of people and it hit me...Cinco de Mayo! Of course!

The hotel was kind of dumpy in the common areas, but the room was nice and comfy. Ralph found a chair and ottoman to climb on...he had a blast! The TV kept turning itself off so the maintenance man came to swap it out for a new one. I ordered a pizza to be delivered, 'cause I wasn't taking these babies out to a restaurant after 3 hours in the car. The pizza man showed up with the wrong order, argh!


In the morning we scrambled to get over to the hospital by 8am. Traffic was light and the hotel was even closer than I thought. Driving past Ronald McDonald Longfellow House took me back in time. I used to walk from there to Children's Mercy every morning when Ralph was there in 2007. I always felt safe and walking in the fresh morning air would clear my head.

Surprisingly, I was able to navigate winding hallways and two sets of elevators and found the Down Syndrome clinic right away! We were shown to our room for the day after checking in. I gave up the idea of Ralph sitting on the exam table right away. He was going to have to play on the floor or risk a skull fracture!

The clinic coordinator asked me if it was OK for a medical student to sit in on our appointment today. I said it was fine. She was in year five of a six year combined undergrad/MD program at UMKC. Neat program, huh? Six years instead of eight! It was nice to have an extra set of grown up hands.

One by one we saw a nutritionist, audiologist, pediatrician, occupational therapist, psychologist. Ralph had his hearing tested in a sound booth and may have a hearing loss at a certain level. We have a sedated test scheduled in June to confirm this. The OT watched him attempt to walk and immediately got us a script for ankle foot orthotics. The psychologist had some good advice and strategies to help us deal with negative behaviors like throwing things and biting. We were done before noon, just in time for lunch. They will send me a report in a few weeks.

We dropped by the lab first to have blood drawn to check for Celiac and thyroid levels. Then to get into the hospital to get lunch in the cafeteria we had to go through security. They have cool new scanners which copy your ID photo onto a name tag. It's nice to know that they take security seriously. Thomas and Ralph enjoyed playing with the jukebox after we ate. What a great helper Thomas was!

We headed for home after lunch. Ruby and Ralph slept most of the way. Thomas even slept for about an hour! We got home just in time to get ready for Awana awards night. What a busy day!

But productive.

Just the beginning of a very busy weekend. More to come...

Random stuff.

I've been so lazy lately! I get caught up in reading my favorite blogs and then I'm either too tired to write anymore or my life just doesn't seem interesting enough to share! I'm also sad that I can't share any pictures until I get my computer back. No, no news on the computer yet.

It is nice to be boring. No emergency trips to the hospital. No puke stories to share, thank goodness! Just life.

Ralph is more solid on his feet than ever. He is still reluctant to take steps with a firm handhold. His PT is really intent on getting him walking. Part of me agrees...but another part of me is thinking that in 10 years who is going to care if he walked at 20 months or 24 month? Ya know?

Ralph's speech, or lack of, is really starting to get me down. Signing is going great, but I'm really hoping to hear some words soon. His receptive language is great and he can follow simple directions. He can communicate what he wants as far as food, drink, bedtime and such through signs. He even learned to sign "thank you" over the weekend. But, I've always said that what I want most for him is impeccably clear speech. Frustrating.

I gotta plan a garden. Soon. No idea where to start.

I was trying to think of an excuse to snag a trip to Kansas City today. I really LOVE Kansas City! A few minutes later the phone rang. It was Children's Mercy Hospital. They were calling to schedule an appointment for Ralph at the DS clinic. How funny! I got my excuse! Well...sorta. His appointment is in MAY?! Not sure I can wait that long. Besides, I'll have a new baby then, God willing. I'm not sure I can see myself hanging at the hospital all day with a baby and a 2 year old. I get exhausted just thinking about it!

The new baby (girl?) is due in mid-March, which is coming up fast! I'm starting to feel really big and sort of uncomfortable. The worst thing, by far, is my hands. I have carpal tunnel syndrome when I'm pregnant...usually only bothering me at night. This time I have tingly, prickly fingers all day long and dead arms at night. I'd be interested to know of anyone else in the world who has dealt with this!

It should be a fun week here. Dad is back to travelling regularly again and I've got 3 kids with doctor appointments tomorrow and 1 with his first wrestling tournament. Oh yeah, we are having an ice storm tonight. Thursday is dentists and water therapy AND my birthday. On Friday there is a fiesta night at church. A mission group that has been working regularly at an orphanage in Mexico will be sharing testimonies and pictures. Can't miss that!

A Punk Coward?!

Thank you to http://www.raisingjoey.com/ for posting this excellent interview with John C. McGinley, aka Dr. Cox from Scrubs: http://raisingjoey.com/?p=1767.



I've known for awhile that John has a son with Down Syndrome, but I didn't realize how much I liked him until I read the interview. He has a lot of good things to say, but the part of the interview that stood out to me was where he outright calls a popular award winning film director a punk coward. See if you can guess who!

Babies with Down Syndrome

I was chatting with a friend yesterday who said she thinks that babies with Down Syndrome are the cutest babies of all! I think that she is right. We both have children with DS, so I guess we are not completely objective.





Ok, this is an old picture, but one of my faves. Go on, tell me this kid isn't a beauty. I love his sweet almond shaped eyes. His eyes are a deep brown so he does not have any Brushfield spots like the girl in this picture. Brushfield spots are white flecks around the iris and are a physical characteristic of DS.

Another physical trait associated with DS is a nuchal fold, a thicker than usual area of skin and fatty tissue on the back of the neck. Ralph has this and it is the sweetest, yummiest place to nibble and kiss. I love it.

For more terms and definitions check out Kimberlee Kadar-Kallen's article here. According to Kimberlee, "it has been discovered that cuteness is located on the 21 st chromosome." Amen.

A beautiful day - not just the weather.

Today was the DSSW Buddy Walk. That is the Down Syndrome Society of Wichita. The weather was a bit breezy but comfortably warm and sunny. For my children this is the highlight of the year! There were well over 1,000 people registered this year, the 5th year of the Buddy Walk here.

Yesterday we all took a road trip to my hometown for the homecoming parade and to visit family. We had to make a detour to deer camp on the way home so we didn't get home until 11pm last night. I committed to bringing 5 dozen cookies for the buddy walk. They didn't get baked yesterday. They didn't get baked last night. They got baked this morning! I'm sure they were still warm when we arrived at the walk!

I was so worried about getting the cookies done that I forgot to grab the camera on the way out of the house. I'm very thankful for the friends we met at the walk who agreed to email us some pictures. The DSSW makes signs out of pictures of our children to place along the one mile course. We all had our picture taken next to Ralph's sign. Brian and Kellie from KFDI were there as emcee's and handed out the medals to the children with DS. I thanked them for being there. They seemed to be genuinely humbled and pleased to be there, in fact I think I heard Brian's voice crack just a bit. Good people.

After the walk, the kids played carnival games until the lunch line got a little shorter. I'm not one for waiting in a long line with kids who would rather be playing! All the little kids got tattoos, including Ralph. Somehow Rose wandered off and went through the lunch line on her own. I wonder how she managed this.

Leroy, Rose, Jordan and Thomas each went home with a bag full of prizes, little toys and trinkets. They all said that the games were the best part of the day. But I say, that the very best part of the day was watching all the kids (kids of all ages I should add) play together. There was an authentic atmoshpere of acceptance and respect. I wish you could all experience this. It was a beautiful day.

I dare you!

My son Ralph is amazing and Down Syndrome is just another part of who he is. As a result, I've developed a rather large soft spot for children with DS. It is sad that 90% of babies diagnosed pre-natally with DS are aborted. But did you know that that babies born with DS are routinely abandoned and institutionalized in many counties around the world? There is no future for these children, unless...

There is an organization that is committed to changing hearts and minds about people with Down Syndrome around the world. It starts with proving the beauty and worth of babies and children with DS through international adoption. It continues with developing special education and parental support opportunities around the world. If services and support are available, parents won't feel compelled to give up their disabled children.

In honor of Down syndrome awareness month in October, this organization, Reece's Rainbow, along with many in the blogging community commit to post once each day about Down syndrome awareness. Reece's Rainbow with be posting a DIFFERENT AVAILABLE CHILD each day this month for 31 days! That's 31 different children that will be here for you to see, pray for, and share!

Click on the button above to see all the beautiful children featured this month. I dare you!

Ralph

Within minutes after Ralph was born the midwife said, "I think your son may have Down Syndrome." He was having difficulty breathing, so this didn't seem terribly important at the time. However, James and I have known people with Down Syndrome and we were totally OK with it right from the start. We had faith that our sovereign God placed him in our family by design.

We have had more heartache than I can describe in the past 17 months since Ralph's birth. I've seen him overdosed. I've seen him crash more than once. And as terrible as the difficult times are, nothing outweighs the joy that he has brought to our family.

Here he is at one month of age.

And again, one year later.

I often wonder what my pregnancy with Ralph would have been like if I had a pre-natal diagnosis. Would we have been encouraged to abort? Would we have been devastated? Would we have worried? I don't know.

I do know that 90% of women with a pre-natal diagnosis of Down Syndrome abort their babies. In my opinion there is a poverty of thinking in this. Must we make it through our lives without difficulty and pain to be fulfilled? We end up sacrificing authentic joy and meaningful life lessons. I could go on, but not today.

I've heard many wonderful things about people with Down Syndrome - they are so happy, they are angels and so on. These are generalizations. I'm certain there are elements of truth in these sayings but above all people with Down Syndrome are individuals with unique gifts, talents, hopes and dreams.

I'm so very thankful that Ralph is a part of our family. I am just getting to know him, but here is my take: He has taught our family all about acceptance of people with and without disabilities. He holds no grudges. He knows how to celebrate. He loves without fear. He takes his time. He makes people happy. He is so many things that I wish to be.

Rose and DS Awareness Month

She has her own sense of style - dig those tights! She was sitting with me as I was reading the blogs on my list today and she noticed the Ban the 'R' word button. She got a little bent out of shape about this since her name starts with R. I tried to explain, but she is still not happy about it!

I'm so happy that it is now October - the best month of the year! I love the cool crisp mornings and the warm sunny afternoons. October is also Down Syndrome awareness month. I am accepting a challenge to blog everyday for the month of October to raise awareness of Down syndrome (a.k.a. Trisomy 21). The challenge is called 31 for 21! So check back each day to see if I am still on the wagon.

Dateline

I recently emailed some friends asking them to watch a video clip. However, I sent the wrong link and it was not clear what I was wanting them to watch. Last Friday night, Dateline aired a segment about the condition of mental institutions in Serbia. I missed the program, but was able to watch in online. It was simply heartbreaking. But I highly recommend that you watch it, too. Here is the proper link.

Next month I'll be starting a fundraiser for a little boy, Oleg, in Eastern Europe. The money raised will go into an account for the family that commits to adopting him. He is 3 1/2 years old. In this part of the world children like Oleg, with Down Syndrome, are generally institutionalized around the age of 4 or 5 years. He will then be unavailable for adoption. He needs to find a home quickly!

I wanted to share this with you, but first I wanted to see what Shelley had to say. You see, she has been there (Eastern Europe), and done that (adopted a child with Down Syndrome there). She has an interesting take on the Dateline story. I couldn't say this any better:

Take a moment and look at my son. Coincidentally, today he was wearing this shirt that we bought in Serbia. After you read this post, I'm going to ask you to go here. It's a Dateline special on mental institutions in Serbia that aired on TV this past week.Before you watch it, or even if you already have, I'd like to share a piece of my heart with you. It is quite humbling to watch this interview and to see scenes from a city that I have visited. To be able to say "I've seen that", "I've been in that building".....and more importantly to say, that is the birthplace of MY SON. My heart aches for the adults and children that were shown in the dateline interview. And my heart aches for the parents....so many parents who carry the burden of knowing they gave up their child without the peace that they did the right thing. And, if you haven't seen it, I want you to watch it. I want you to understand why my passion is for the work being done through Reece's Rainbow. And while what Dateline shows is VERY REAL, I want to share a different side of Serbia with you too. I want to share what I saw, what I felt, what I know about the change that is happening in Serbia. First, let me just clarify that Grifyn was NOT in an institution in Serbia. He was in a children's house in Belgrade. He was well taken care of. He went to a special needs preschool. He lived with a group of children and was surrounded by toys and activities and a very stimulating environment. He was learning and growing. He was loved. I saw that clearly. I also want to share with you that there are many good people in Serbia who are working to improve the quality of life for children with disabilities. There are people working to ensure that they receive therapy, medical care and a chance to learn as they are able. They DO have a system in place to work with families....to give families a chance to keep their children. They DO try to reunite these children with their parents if at all possible. And when it's not possible, there are people working to get the paper work done to give these children a chance to be adopted. They are not making these children eligible for adoption to get rid of them. They are doing it because they want the children to have the best chance to grow and succeed. So, as you watch that interview, I want you to remember something. Yes, the need is great. Yes, the conditions that are shown in these institutions is horrible and heartbreaking. Yes, it needs to be changed....and awareness is the first step. But I want you to also remember that there are a lot of good people in Serbia who really are working for the greater good of the children. I want you to know that things are changing in Serbia. I want you to know that there is HOPE in Serbia.....HOPE that parents will one day keep their children when they are diagnosed with a disability, HOPE that these children will go to a children's home where they can learn and grow and HOPE that if they do end up as orphans, that they will have the chance to find a family. I also want to mention that our doctors, in the US, are not any better than the doctors in Serbia telling these parents to give their children to an institution. Doctors in the US tell parents to not even give the children a chance to be born....and that is a fact supported by abortion rates of children with prenatally diagnosed disabilities. One of the most profound moments I had while in Serbia came on the day that Grifyn's adoption was final. We were talking with some of the officials about the opportunities that Grifyn would have in the US. Then, I was asked "Why, if your country offers so much for children with disabilities, do so many people have abortions?" A brutal reminder that we're not so far removed from what you see on this video .
Posted by Shelley at 21:18

You can help - it is so easy!

As mom of a 16 month old son with Down Syndrome, a whole new world is being revealed to me daily. I know that, historically, babies born with Down Syndrome were regularly insitutionalized at birth in the United States. I did not realize that the world, as a whole, has not yet caught on to the incredible worth and beauty of children with DS.

In Eastern Europe in particular, babies born with DS are generally given up at birth. Probably partially due to misinformation given to them by the medical professionals. Around the age of 4 or 5 the children are placed in mental institutions and are no longer available for adoption. Physical restraint, lack of stimulation, and abuse are common. see here

It doesn't have to be this way. There is a organization, Reece's Rainbow, that is working hard to provide loving homes in the U.S. for children from Eastern Europe and other countries with DS and other disabilities. They also work to provide education and develop parent support groups in these countries to reduce the number of children who are given up.

As Christians, we are expected to help widows and orphans. And, now that you've read this far you are out of excuses! "Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act" Proverbs 24:12

So here is how you can help - Reece's Rainbow has been entered in a contest through American Express. All you have to do is go here and nominate this project. You do NOT have to be an American Express card holder. You can set up an account (just your name, email address and a password...takes 10 seconds) and then nominate the project. You will be nominating Reece's Rainbow to be the recipient of enough money to provide TWENTY THOUSAND DOLLAR grants to ONE HUNDRED waiting children with Down syndrome. That would be 100 children from all over the world coming home to forever families. Can you imagine.....100 children finding families!

Our family is still dealing with medical bills from Ralph's many hospital stays over the past year. Still, we would love to adopt a child with DS from Eastern Europe! I still feel a sense of urgency, considering the political unrest in that region. A $20,000 grant would make adoption a real possibility instead of a mere dream for our family. How many other families out there would rescue a child from an institutional life if the funds were available?

Psssst...pass this on!

Church, grocery store, pool. My Sunday.

Today Ralph and I were introduced to a woman named Amy. She is the youngest of 9 children. She also has DS. I asked her about her family and where she lived and stuff. I was so pleased that her speech was easy to understand. Then she looked at Ralph and said, "You look like me!" I just had to laugh.

After church I had to run to the store for a couple of things. I was looking at the day-old bread rack when an older woman who was handing out samples about 10 feet away asked me, rather loudly, "What is wrong with your little boy? If you don't mind me asking. I've never seen a baby on oxygen."

Well, I didn't mind her asking at all. It is kind of nice, in fact. I don't try to hide Ralph. When we need to go to the store, we go. I'm sure we are rather conspicuous, but no one ever says anything. OK, no grown ups. Occasionally a little girl will whisper,"poor baby." So, I chatted for a moment with the sample lady and went on my way smiling.

I took a few children to the water park at the YMCA tonight. Rose nearly taught herself to swim tonight! She normally acts timid so I was very impressed. Leroy is more cautious in the water than you might think. Funny. The swim must have really relaxed him because he fell asleep on the floor of the family room not long after we got home.