Sunday, August 31, 2008

Perfect timing - Dateline

The Dateline report about the conditions of Serbian mental institutions, aired last Friday, could not have come at a more perfect time! I'd like to remind you of the American Express Members Project. One project is going to get $2.5 million. Reece's Rainbow will use this money to provide FULL GRANTS to rescue 100 children with Down Syndrome from countries where this type of institutionalization is common.

Grab This Button

But, there is only ONE DAY LEFT to nominate Reece's Rainbow. They need to be in the top 25 tomorrow when the preliminary nominating is done. Right now they are at #22. They were #18 yesterday, I believe. Wouldn't it be a shame to finish #26 and be out of the running for the top prize? Oh, and there is less than 200 votes between #22 and #18. We need to spread the word today and move up a bit.

You do not need to be an American Express member to participate. You may simply sign in as a guest. It takes about a minute. Seriously, I know that the Dateline program had a profound effect on many people. Many people were left feeling helpless and wanting to do something. THIS is something everyone with an email address can do!!

By the way, if you have more than one email address, you can nominate Reece's Rainbow more than once. Just log out, and then do a guest sign up with the other email address. I did this today with my work email and also my children's email addresses. Hope they don't mind.


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 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 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

Saturday, August 30, 2008

Firetruck fun

Last night a firetruck drove down our street. It backed up into the dead-end and parked. Well, naturally we had to go see what was going on, right? It turns out that they were there to rescue our neighbor's flag. It has been stuck at the top of their flag pole for a while through rain and storms and dark night. As former military persons that just won't do.

So we all watched while they got out a big ladder and a stick with a hook on the end and brought down the poor flag. Afterward the firefighters let Thomas, Jordan, Rose and Leroy tour the firetruck. The men were so friendly! I mean they are supposed to be friendly, but they were REALLY NICE to the kids. They probably spent 30 minutes showing the kids all their stuff and turning on the lights and sirens. They invited the kids to visit the station anytime.

At bedtime last night Rose kept getting up. She is usually very good about staying in her bed so I asked her what was wrong. She said she just couldn't stop thinking about the firetruck! This, coming from a little girl who used to cry and insist that she was afraid of firetrucks. (Trains, too. I guess it is the sound of the sirens and horns) I guess we have to visit the station today. I'll try to get some pictures.

Friday, August 29, 2008

I have goosebumps...

What a morning! Ralph had a great visit with the cardiologist this morning. His pressures are back down...half what they were last month. He does, however, have a small PDA that is showing up again. We will continue to watch this. He is up to 22lb. 5 oz!

Ok, and while we were waiting for the doc to come in, James got an email that McCain has picked Sarah Palin as his VP pick! I'm so tickled, and shocked, that he picked her! Talk about change...this woman will stand up to corruption and politics as usual. I do indeed have goosebumps!

Wednesday, August 27, 2008


One of my favorite memories is the way my seven other children adored Ralphie when he finally got to come home from the hospital last summer. Here is Leroy holding and feeding him...I can't believe how tiny he looks!

Tuesday, August 26, 2008

Not ready for this

Ralph sees the cardiologist later this week. I usually look forward to these visits, but not after last time. He has been on a liter or more of oxygen since last month, although he rips it off probably 200 times every day. Also, when he rolls over in bed at night the prongs come out. This happens about 25-30 times every night. Can you say sleep deprivation?

On another note, Ralph will be moving up to the Beginner's Sunday school class around Christmas time. Which is funny because he has only been in the nursery a few times due to my germ-o-phobia. Will I have the guts to send him to Sunday school during cold and flu season?

Our church has a new way of accommodating children with special needs. They set each child up with a buddy, which is a grown up who guides them through the activities of the Sunday school class each week. Well...Ralph's new teacher would like him to have a buddy when he moves up. I'm not quite sure how I feel about this and I know I'm not ready to deal with this yet.

On one hand, I am supportive of this system in general. Children who might not normally attend Sunday school due to behavior issues have a regular buddy they can count on to help them out. The teachers are happy because they have support. The parents are happy that their children are able to participate.

On the other hand, Isn't 18 months of age a little young to expect a whole lot as far as attention and class participation? I have a hard time seeing how Ralph would act much different from any other 18 month old child. In fact, he may be better prepared. I actually spend time reading to him and singing songs with him and teaching him how to play with toys, things that I never did with my other babies when they were babies.

Maybe my real problem is that I am not ready for Ralph to be singled out as special. You know? Somehow I thought I had a few more years before I needed to worry about this. And I figured it would be the school setting not the Church where I would find him singled out.

Friday, August 22, 2008

Keepin' it real - and other stuff

It has been quite a week. We have had doctor's appointments and/or therapy every single day. Monday was Richard's sports physical and Ralph's P.T. Tuesday was Rose's Kdg. physical and shots. Oh, I guess no doc visit on Wednesday, but I did have a web site appointment. (Yes, I made the sale!) Thursday I took the dog in for his next round of heartworm treatments and Chipper to the neurologist.

I thought I might get a break today, but no. Chipper has a sore throat, so we'll be visiting Dr. Larry after lunch. On top of all of this, I began serious homeschool with Thomas this week. Learning a new curriculum and online system has had me tearing my hair out. I'm thankful that I had the chance to conference with an experienced K12 user who gave me some tips and tricks. Now we are cruising through the lessons!

Also, I don't think Ralph is feeling very well. I wonder if the other kids brought some bugs home from school with them. We need to reinstitute the hand washing and sanitizing rules. (Rose calls it hanitizing!) He has been less energetic than usual this morning. I couldn't get him to practice "stepping". He was very snuggly, which is highly unusual! I took an axilary temp of 98.8 before I put him down for a nap.

I generally monitor his O2 while he sleeps, but I can only put it on after he is asleep. He will eat the tape off of the probe if I don't wait, or if I don't take it off right away when he wakes. Yes, I put a sock on over the probe. He can even get the tight socks off with no trouble. I guess I could use duct tape!

So, Ralph's O2 is running a little low today. He is running a little fever. He is not himself. This generally happens on a Friday. If I wait to call the doc, which I usually do, I end up with a sick child on a weekend and not many options to be seen. If I call the doc, it turns out to be nothing and I wasted a co-pay. Hmmmm.

Richard has cross country time-trials tomorrow morning. His running time will determine if he is on the varsity or the J.V. team. The parents are providing breakfast for the kids after the run, so I've got to go buy a case of juice boxes today.

Wesley started his new job this week. He has been working from 4-8:30pm at Goodwill. If I am not careful when I drive him to work, I will miss Rose and Jordan coming home on the bus. I missed them on Tuesday. The phone rang when I got home-it was the neighbor down the street. They walked down there and told her no grown-ups were at home. Smart, huh? Embarassing? Oh yeah.

I only share this because I'm committed to keepin' it real.

Wednesday, August 20, 2008

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!

Wordless Wed. & Special Exposure

I really enjoy watching Ralphie work with stacking blocks or stacking and nesting cups. He is very persistent and has a great attention span! He will work like this for 30 minutes, no kidding! Do you think all the fish oil I give this kid is helping?

We tried a shape sorter at a therapy appointment on Monday and did great. Now we need to buy one to keep at home.

Monday, August 18, 2008

First Day of K

Rose started school last Thursday. Afternoon Kindergarden. Needless to say, she was dressed and ready to go at 8 am! Here she is posing for the obligatory first day of school photo.
The buses have been at least 20 minutes every day due partially to construction on one side of town and partially to extra traffic from the nutso parents that put their kids on the bus and race to the school in their own cars to get video of their babies getting off the bus!

I've been trying to stay home with Ralphie now that four of the kids are gone at school for much of the day, but I'm not having much success yet. Between doctor appts, sports parent meetings, meet your teacher night, and tour the building night I'm going a little nuts. Of course, dad is traveling so I lean on Wesley to watch little ones alot. I'm very thankful that my teens are responsible and helpful.

Tuesday, August 12, 2008

Say what?

I'd like to invite you to read Once Upon A Time There Was A Retard…. . Won't you please ask your family and friends to go and read it as well?

It’s important. Really.

Friday, August 8, 2008

Conversation with Rose

**I apologize if you don't think is cute. I love the innocent honesty of children as they try to make sense of the world. We had this conversation shortly after I invited the little kids to come with me to the Down Syndrome Society meeting tomorrow morning. They enjoy playing in the nursery there, but I've been waiting for this subject to come up.**

Rose: Mommy? Is Ralphie Down Syndrome?

Me: Yes. Why do you ask?

Rose: He doesn't look Down Syndrome.

Me: What does Down Syndrome look like?

Rose: Like this. (Picture Rose with her tongue between her lips.)

Me: People with Down Syndrome look different from each other, just like everybody else. Do you love Ralphie anyway?

Rose: YES!

Oh, my darlin'

The house has been pretty quiet since the big boys have been gone. NOT! Yesterday Thomas started freaking out because it was soooo loud in the family room. You know it's loud when the kids are complaining!

Ralph has a new toy on loan to us. It sort of takes up the whole room. His PT wanted him to work on crawling up stairs. These work great, but instead of crawling up, he goes on hands and feet! He's been crawling down the slide on his belly. I keep it fairly warm in the house in the summertime, so he is normally wearing only a diaper. Baby flesh doesn't slide well on plastic.
Leroy has been fun. He tried to flush a ball down the toilet yesterday. It got stuck in the s-bend. Chipper told me this. I don't recall what he said but I remember that I said, "Well, I guess you better reach in and get it out." I was not in the mood for this. He did finally figure out how to get the ball out without pushing it farther down the pipe. Yes, he washed his hands thouroughly!
Can you imaging the spanking that Leroy got?
Later in the day, while Chipper and Thomas were at piano lessons, we found a 3 pound bag of clementines marked down to $0.99 at the grocery store. Ever since I showed the kids how easy they are to peel, Leroy has eaten nothing else! Between Leroy, Jordan and Thomas (Rose won't eat fruit) the whole bag is gone this morning.

Wednesday, August 6, 2008

Special Exposure and Wordless Wednesday

5 Minutes for Special Needs

How am I supposed to keep your sats up?

Sunday, August 3, 2008

Please pray...

This is Emma. You'll notice her picture and a link on the top right column of this blog. She'll be having a long awaited potentially life-saving surgery early tomorrow morning. It is also a risky surgery for a number of reasons. I pray that God will preserve her life as a testimony to the beauty of adoption and the human potential of persons with Down Syndrome.


Last week was exhausting. Now that I know Ralphie NEEDS his oxygen on all the time he has started ripping it off at night! I've been very thankful that he has worn a cannula for so long that it doesn't seem to bother him. Now it seems to bother him while he sleeps.

I reset his O2 meter to alarm at 93, so I can get him back above 95 ASAP. So now I'll bet I get up 15 times each night to put the cannula back on. Thank goodness James was home this weekend so I could catch a nap. He is taking Richard and Wes to North Carolina tomorrow for a week, so I'm sure I won't get another nap for awhile.

Tonight I'm going to try mittens on Ralphie. I've heard that other children are less likely to grab and pull things off when their hands are covered. I'll let you know how it goes.

On another note, Wesley got a job this week. He will start when he gets back from N.C. I was on my way to pick him up after his last interview when I noticed that he had started walking home. Then I noticed him fall down. Then I noticed him fall down again! He really hurt his ankle.

When we got home I could see a huge lump on his ankle, like a bone sticking out. I grabbed daddy's crutches, from when he broke his leg last fall, and we set out for the minor emergency office. I have to laugh every time I picture Wesley using his daddy's crutches. They are way too short, but it was better than nothing.

It turns out that the lump was just swelling and the ankle was not broken or dislocated. It was just a very bad sprain. Thank goodness.