Saturday, December 10, 2011

It Was Bound to Happen

As I sat in the restaurant last night, my goal was twofold:  (1)  keep the kids quiet and entertained, and (2) eat food that is relatively warm.  During the first course (aka, waiting for the food), my five-year-old mini-me was fooling around and said in her silliness, "I'm retarded."

Oh, wow.  Talk about a pause.  I couldn't even believe it. 

From where had she heard this word?  This is a child who is relatively sheltered, I admit it.  She is homeschooled.  We live on some acres in what is considered one of the most conservative areas ever (land of Rep. Eric Cantor).  Her Internet usage is heavily monitored, with only daddy pre-approved sites like Starfall.com getting any viewing time.  We go to church, ballet, and homeschool group. And Kroger.  And the library.  She can sing songs about Jesus, Eleanor of Aquitaine, and various Veggie Tales characters. 

And then it hit me.  It could have been from anywhere.  Television.  Other kids.  Overhearing something at the store or while out and about. 

We are not safe.  Things creep in from our culture that we do not like. 

This isn't a post bemoaning television or culture or whatever.

It's more of a wake-up call.  For me, in particular.  While I do what I do for the glory of God, I admit that there is some hope that my actions and intentions will bear good fruit (and, yes, I have examples of that).

But we live in a fallen world, where words like "retarded" creep into the lexicon of a five-year-old whose brother once would have been labeled as such without the blink of an eye.

Yet when I said to her these words, she changed.  "Sweetie, I know you mean to be funny.  But that word is not nice.  It means to some people that they are acting  like Henry and need extra time to do things  But then people use it to make fun of people with disabilities.  I know you don't mean it.  But please don't use that word again."

Her face went ashen.  She was sorry.  She didn't want to make fun of Henry.  She loves him, totally, unconditionally.  But in the moment, she just wanted to be silly, and she said a word she had heard. 



Pray, church.  Pray for the words we speak and the words in our minds and hearts.  Let us truly open ourselves to let the Spirit talk and work through and within us.  Amen.

Thursday, December 1, 2011

Why Orphans?

(Reprinted with permission from Trish Hatton-Jamison  This woman thinks like I do.  Love her!)
As I become increasingly vocal about my passion for the orphan, I occasionally get some blatantly honest questions from people. I like that. I like it because I have a feeling that more people have those questions and are afraid to start the awkward conversations. So here it goes. My best shot at answering the questions that have (and haven't) been asked.

Question 1: 
Why Orphans?
I don't think I know anyone who would say, “Why would you help an orphan?” Regardless of your stance on faith, I believe the innate goodness in people makes them feel sorry for the orphan and think (in principle, anyway) that someone should help them out. Someone else, that is.

Yet according to UNICEF there are 165 million orphans in the world.
Clearly someone else isn't doing enough.


As a believer who wants desperately to be more Christ-like, I have to take my cues from God's Word. And the Bible clearly shows that God has a heart for vulnerable children. Scripture references orphans a lot. Sometimes by name like this:

“Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.” (James 1:27, NIV)

and sometime more like this:

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ (Matthew 25:40)

So in response to my prayer “to make my heart look more like Yours,” God has broken my heart for these children. Is it because I'm a mom now? Maybe. Perhaps I can't imagine my Addie Jane laying in a bed, often sedated, living off of 600 calories a day, with no hope of ever having a Christmas with a family. Perhaps I can't imagine my runny nosed Reese rocking and self-soothing herself to sleep because there is no one to hold her and tell her that she is loved.

So why do I love orphans? Because God loves orphans.
Russell


Question 2:
Ok, I get the orphan thing. But why international? And why in the world are you advocating for kids with special needs?


I get this first question a lot. I love the “God bless the USA,” “Made in America,” strong sense of nationalism people seem to have. And I get it, I really do. But in my mind, God didn't create political borders, man did. And while I absolutely 100% support the adoption of vulnerable children in the US, the waiting children have a VERY, VERY different life in this country.

Yes, there are waiting children in the US. Though it is an imperfect system, waiting children in foster homes have advocates and social workers and protection laws and sibling visitations. And did you know that there is a list of over 200 families waiting to adopt an infant with Down Syndrome from the US? These children, when given up in the US, are wanted. Cared for. Cherished.

Unfortunately, the same cannot be said for waiting children with disabilities internationally.
The community of children I feel called to advocate for have lives that we would not subject our pets to. They are living in orphanages from birth because they were born into a culture that does not see them as special, but as a waste. Into a society that does not offer intervention or support. And to parents who, for whatever reason, do not have the strength to raise a child with extra needs without help.

Children with Down Syndrome, Spina Bifida, Cerebral Palsy, HIV, cleft palates, missing limbs, visual or hearing impairments, facial deformities, etc. often have no one to advocate for them. They are left without intervention or services. With no physical therapy, outside stimulation, or even education, many spend the first few years of their lives in an eerily quiet baby house... where rooms full of babies do not cry because by a few months old they have realized that no one is listening. They say that it is one of the most haunting things to see/not hear.

When transferred to an older child home, some cannot walk yet because there was no early intervention. So they spend hours in cribs, sedated so that they do not fuss, laying in their own filth because frequent diaper changes are too expensive and time consuming to waste on such children. So they are changed once a day. Once.

And then the dreaded transfer. If not adopted before 4, many children with DS are transferred to mental institutions. Yes, you read that correctly. Mental Institutions. When asked about the life expectancy of children with Down Syndrome born abroad, Andrea Roberts, founder of Reece's Rainbow, replied, “They are transferred to mental institutions at 4 and a great many of those children do not survive their 5th birthday.”

But it isn't just children with Down Syndrome at risk. Children who cannot walk because of Spina Bifida, cerebral palsy, or missing limbs are often left in their beds in rooms called “lying down rooms.” They do not go outside. They do not receive therapy. They are not visited and talked to. They just waste away, gagging on the food that is hastily thrown at them, unable to move enough to relieve the pain of the bedsores plaguing their bodies. Can you imagine living a life in that hell?

I don't tell you this to upset you or make you feel sad. I actually hate commercials like that. But I'm trying to make it clear why these children need to be rescued. And why it's the Church's responsibility to love people like Jesus.

Question 3:
The need is so great. How can you make a difference?


You're right. The need is overwhelming. Daily I read the stories and names of children whom I can never hold, never kiss, and never whisper softly that everything will be all right. Children who are days away from transfer that I cannot scoop up and bring to safety.

But I can help one.

There are families who would like to rescue these children. But adoption is expensive. (ridiculously so). By the time a family travels twice (and sometimes 3 times) to a foreign country, staying in a small flat to complete in-country paperwork and jumping through Hague Convention hoops, thousands upon thousands need to be spent.

It takes almost $30,000 to ransom a child that nobody wants.

That's pathetic.

But that's how it is.
Isaiah

*****

And so this season, I am raising a ransom for an orphan (Trish is raising funds for Russell.  I, Gwen, am raising funds for Isaiah). Our goal was $1000 by Christmas, but let it be known that I'll be continuing to raise funds until the 25th even if we meet our goal.

Every dollar he gets increases the chances that a family will look at his adorable little cheeks and say, “Oh my. He is my son” instead of “Oh my. That's just so sad... we could never afford to get him out of there.”

And I hear you. Times are tight. But I refuse to accept that you cannot spare $5.00. We are among the most wealthy people in the world. We spent $6.8 BILLION dollars on Halloween this year as a country. ON HALLOWEEN. Really people?

We spent $52.4 BILLION last weekend on Black Friday sales. We have cars, and cell phones, and this Christmas our children will ask for DS's, iPods, and Smartphones.

All Russell - or Isaiah - wants is a family.


  Merry Christmas!

Wednesday, November 9, 2011

The Gift of Family

(reposted with permission from Reece's Rainbow)

The Reece's Rainbow Annual Christmas Angel Tree is here again!  

The Angel Tree is Reece's Rainbow's biggest fundraiser of each year, from November 1-December 31.  It is a very special time to share in the future of an orphaned child with Down syndrome.

In only five years, donations have made it possible for more than 500+ children with Down syndrome and other special needs to find their "forever families".  That is PROOF that your gifts truly are saving lives and changing hearts around the world.

Donate $35 or more to a waiting child's adoption grant, and you will recieve a beautiful photo ornament of that child. 

These are great gifts for friends/family/teachers/therapists, and your money will truly help to save a child's life.  Gift cards are also available with your donation.

Nobody wants more scented hand lotion! 


GIVE THE GIFT OF A FAMILY to a child with Down syndrome.  Ornaments are limited in quantity, get yours today!

Give online with Paypal or send a check to:
Reece's Rainbow, PO Box 4024, Gaithersburg, MD 20885
All donations are tax deductible!  
Tax ID 20-5466141

Tuesday, November 1, 2011

Another Year on the Angel Tree

For the second year in a row, our family will be prayer and fundraising warriors for Isaiah.  As I wrote in THIS POST about a year ago, Isaiah is a young boy with Down syndrome living in an orphanage in Eastern Europe.  He is not with his birthfamily simply because he has one extra chromosome.  


My hope and prayer is that this year will be the LAST year for Isaiah to be on the Angel Tree.  My family and I pray DAILY for him to know God and to know the peace and love of a family.  (And due to regulations in Russia based on my health history, we are not able to adopt him ourselves.)

Our goal is to raise $1000 in the next 60 days.  He already has a grant of $1418.  The total cost to adopt a child in Eastern Europe is over $25,000.  I know that there are MANY people who might want to bring him home, but the issue of money is a huge stumbling block.  Together, we can help lessen that burden and show our love and support to this sweet boy and his future family!

In the sidebar, you will see a donation box.  This is a link directly to Reece's Rainbow.  All donations are tax deductible! 

I do not see the list of donors.  However, if you are comfortable and as a favor to me,  please leave a comment or send me an e-mail if you have donated, so that I may thank you personally.  May God bless you richly for your prayers and support for this little boy!

Monday, September 26, 2011

Q & A with VCU Medical School Students

Recently, I was blessed to be a part of a small group of parents and children who had the opportunity to speak to students at the Virginia Commonwealth University School of Medicine.  As parents, we all shared a common bond of having a child with Down syndrome, ranging in age from 2 to 30.  The students were all in their first year of med school, having just finished a week on genetics.

On a Friday afternoon, the class of 100+ viewed a terribly outdated video about Down syndrome, and then each parent (and in some cases, a young adult w/DS) had a chance to speak.  In many ways, we were the first human faces these students saw in a somewhat clinical sense -- they had spent their first several weeks getting acclimated to Richmond, to med school, and to the rigors of learning about the human body.  We parents of T21 kids each shared our stories in different ways -- the joys, the challenges, the positive and negative interactions we have had with the medical community through parenting a child with unique needs. 

After class, several students congregated around each parent/child group and asked questions.  I am so grateful for the thoughtfulness of these folks.  For my own memory's sake, I want to keep these questions in mind for the future -- and I thought others would be willing to read this and humor me after a long blog-posting desert.


What is the toughest thing about having Henry?
Umm...he's a boy, and I was used to girls!  Seriously, most things about Henry are such a joy.  But to answer the question, the hardest thing has been seeing the children near his age do much more than him, well before he does so.  A dear friend of mine's child was born the day before Henry, and I have several other close friends whose children are within a few weeks or months of Henry's birth.  These children were walking, talking, eating, etc., well before Henry.  So, yes, there have been times when it has been hard to see what they are doing.  It is hard sometimes to remember that Henry is on his own timeline.  But...that is OK.  Henry is Henry.  Every child, whether they have an extra chromosome or not, achieves milestones on his or her own terms.  I have learned that with Henry, he may take longer, but such an achievement is a huge celebration. 


You seem to have a very positive outlook.  What advice could you offer on dealing with parents who see their situation as the glass half-empty rather than full?
As I reflect now on this question, I wish I had answered better than I did.  That Friday, I recommended that the physician be a listening ear, but also that he/she be prepared to refer their clients to helpful resources, such as Early Intervention, counseling, etc.  But I missed something big in my own life:  I deal daily with the shadow of depression, and have for several years, since the post-partum issues I had after Emma's birth in 2006.  So to hear that I am "positive" is a testament to God's healing power, and the work He did to bring clinicians into my life that properly diagnosed me and have helped me through a subsequent birth and postpartum adjustment, and to do so positively.

Each of us faces struggles in life.  How do we handle them?  Do we cry and gnash our teeth and boo-hoo to everyone around us?  Or do we lean on God, rally supportive friends around us, and make the best of what we are given?  And, honestly, "the best" is very much a part of Down syndrome.  Who doesn't want extra hugs, love and attention?  I could be sad, but honestly, it is hard to stay sad around Henry very long.  He exudes life, unconditional love, and joy.  There is only fullness around Henry -- nothing half-empty about it!




What are some things that a doctor has done that are positive and helpful? 
More than anything, treat Henry first and foremost as Henry.  A boy who is busy and curious, and who also has Down syndrome.  I want them to joke and call him "tiger" and "sport" and interact with him like they would any patient.

At the same time, I am appreciative of those things that clinicians have done to make Henry's situation both normal and special.  For example, in my pediatrician's office, each doctor or nurse practitioner uses a tablet computer versus paper records.  But the problem has come up that the tablet does not have the Down syndrome growth charts loaded into the main system.  So one doctor just wrote down Henry's stats and suggested I look them up at home on the DS growth chart.  Umm...no, I will not be requesting you again.

Contrast this with two others in this large practice -- one carried in a book with the DS charts in them, so that she could accurately place Henry on charts appropriate for him.  Another doctor downloaded the DS growth charts onto his personal tablet.   These are small, simple acts.  But they make a world of difference. 


(To all the parents/kids) What did you think of the video?  It seemed very negative.  
Henry clapped.  I don't think he likes the video, either.  Truly, a video that uses words like "retarded" over and over again can perhaps be updated, I am sure.




You said that Henry uses sign language.  How many signs does he know, and how hard is it to teach him sign language? 
I used simple signs with each of my kids, such as eat, milk, and more.  It is amazing to see what children can communicate before they are able to speak.  With Henry, this goes beyond mere "baby signs" to a true need to communicate long term.

Henry knows and uses more than 25 signs, and he recognizes even more.  He watches a "Signing Time" video once a day.  We have Signing Time on DVD, and we also DVR shows that air on PBS.  For Henry, Signing Time is his favorite show -- he requests it every morning after breakfast (and most of the day afterward). 




Stay tuned for more Q&A!  And thank you so much to the VCU medical students who were so enthusiastic!

Saturday, August 20, 2011

Fun fundraiser!

With back to school time approaching, the quest for the perfect lunchbox once again comes to the horizon.  Remember years ago those metal lunchboxes we had?  Rusty Scooby Doo and Barbie squares carried our WonderBread PB&J to school.

Now we have so many better choices!  And I am thrilled to share my favorite with you:  Easy Lunchboxes!!  (Yes, I mentioned these in a previous post).  These are so simple and versatile, and they are a great way to pack a quick, healthy lunch.  

These pictures here shows the whole package. Four EasyLunchboxes containers...plus a cooler if you wish. Think about the possibilities! Two kids..two lunches a day...just wash each set as needed. Or, family picnic? Three of the EasyLunchboxes containers fit into one cooler. Easy, simple.




Another great idea -- wraps, veggie straws, fruit, cucumbers.  Voila!  Lunch.



Or get super creative -- dips and veggies round out a fabulously fun lunch!



The best part of these EasyLunchboxes?  You can help raise funds for Vilis and Isaiah while you pack a great lunch for yourself or your family.

Local friends -- I'm hosting a fundraiser through September 1. The bonus is that I'll cover the shipping for you! Send me an e-mail at gwensmith93 at gmail dot com for a flyer, or post a comment below and I'll send you one!

Friends across the globe -- clink on the pic/link to the right or click HERE to place an order any time!!

One lucky person will earn a FREE SET of containers and a cooler.  Just post a comment below, and I'll pick a random winner on Sept. 1.  If you share on your own blog or Facebook or Twitter, please post an additional comment saying so for extra chances to win!

Remember, the proceeds will go to the grant funds to help Reece's Rainbow boys Isaiah and Vilis!!


Thursday, August 18, 2011

They aren't on vacation

I've been on vacation this week, which has been awesome. I left my laptop at home. Tried to unplug. But tonight, those little boys tug at my heart. Isiah and Vilis. My girls prayed for them tonight, like they do every night. The boys don't get a vacation from loneliness and longing.

So I will break from my vacation to make a new post (coming soon) that won't be perfect, but I can't wait until I get home...or, more exactly, those boys cant wait!!

Monday, July 25, 2011

Praises and prayers!

Thank you so much for praying for the Warner family!  Their son, Joshua, was declared safe to travel, and they are ALL coming home.  A week ago, they were threatened with the thought of having to stay 6-8 weeks in country, all due to a single X-ray. 

Praise God from whom all blessings flow.  May God continue to bathe them in His strength and perseverance.  Unfortunately, when the Warners disembark from their flight, it will be to attend a funeral.  We live in a fallen world, and it is sad that such a sad event must juxtapose the arrival of a new blessing.  (Reminds me of Claudius' first speech in Hamlet, but that is the English teacher in me -- sorry). 

I have been praying for this little boy for so long -- I knew him as "Cliff" on Reece's Rainbow last fall.  I am thrilled that this little boy -- now Joshua Warner -- will have a forever home and a family who loves him. 

Saturday, July 23, 2011

A Steakhouse with Steak?

Many thanks to  my friend Cindy Shufflebarger, who is our guest blogger today.  Cindy is the author of Dancing in the Rain: Finding Joy in the Midst of the Storm. Her writing, inspired by God’s healing hand following the death of her daughter, encourages and offers hope for rediscovering the joy in living. A homeschooling mom of three, she now views life as an adventure with God and invites others to join the journey.   Visit her at www.cindyshufflebarger.com.

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My husband scheduled his annual company Christmas dinner at a local steakhouse.  And all was going well until it came time to order.  The waiter informed us that they were all out of steaks.  No steaks of any cut.  We could have chicken.  We could have pork.  We could have seafood.  But no steak.

The entire party looked at the waiter not knowing how to respond.  Was he serious?  It was only 6pm.  And we were in a steakhouse after all.  How does that happen? I shot a quick glance at my husband, trying to assess how he might respond.  I knew he would be embarrassed, but how would he handle it?  He managed to contain his irritation and all decided to make light of the situation, viewing it as a funny mishap and minor inconvenience instead of a major crisis.

That steakhouse is no longer in business, but I will never forget that night.  I still shake my head and laugh when I think about it.  I felt bad for the waiter actually.  How hard his night must have been telling each customer the news with a straight face – thank you for coming to our steakhouse where we have no steak.

So, my steakhouse experience begs the question:  What about us?  Are we steakhouses with no steak? Are our churches ones without evidence of God?  Are we a temple of the Holy Spirit without yielding any fruit?

I know it’s not a pleasant thought, but I think we need to seriously consider it.  If we are the hands and feet of Jesus, what evidence do we show to our community and our fellow brothers and sisters that God is present in our midst?  Are we gracious and forgiving or quick to judge? Are we snippy and always pushing to get our way or do we kindly yield?  Do we attend church for the entertainment value, always wanting to be fed, yet never serving?  Are we open to the leading of the Holy Spirit?  Are we committed to growing in our relationship with God?  Are we reaching out to others in the community as Jesus would have done?

I challenge you to consider your spiritual health.  Then, ask God to reveal to you one way He wants you to reach out to someone to demonstrate His love.  I pray that we’ll never find ourselves in a position that someone would say that we’re a godless house of God, personally or as a body.  Let’s not be that steakhouse – let’s show some real meat and substance with our lives.

Blessings, my friends, as others see Jesus in you!

On that day you will realize that I am in my Father, and you are in me, and I am in you.  Whoever has my commands and keeps them is the one who loves me. The one who loves me will be loved by my Father, and I too will love them and show myself to them. John 14:20-21
 

Wednesday, July 20, 2011

G-Free Girly!

Thanks again for all of your prayers for Emma.  She is doing OK but is still complaining often of stomach pain. Hopefully the diet changes I describe below will help!

The results of her tests were somewhat inconclusive.  Blood work showed high levels for celiac disease (gluten intolerance).  Her endoscopy showed intestinal inflammation but no damage to the small intestines.  This could mean that she DOES have a gluten intolerance but it hasn't had an effect on her intestinal walls yet, or it could be something else going on.  And X-rays show that she needs to, um, get moving in the bowel area, which is also a possible cause of stomach pain (and we are giving her meds to help get things going).

But though the tests were not completely clear in pointing to gluten intolerance, she does show enough of the antibodies and the complaints that we decided to try her on the gluten-free diet for a few months and see if she feels better.  Changing her food intake can't hurt her and may even help, as we are all trying to eat more fruits and vegetables, things like hummus as a dip, and get creative with sides and desserts (we had a great g-free dessert "fruit pizza" thanks to Granny!). 

I decided to go "g-free" with Emma to support her and be her buddy (and if I lose my muffin top, even better!). This past weekend, we headed to the bookstore to get cookbooks and then to Whole Foods to stock up on foods and flours that will allow us to be g-free.  Next, she and I rearranged the pantry so that she has her own "g-free" section of safe treats.  However, Emma has been a picky eater for a while, perhaps because of her stomach pain, and so getting her to eat a variety of healthy foods is definitely going to be challenging. 

Going g-free is not easy;  it's not just a diet but a true lifestyle change.  You can't go through a drive-through and expect something g-free AND kid friendly, for example.  So we are being more purposeful about bringing our own snacks and lunches when we are out and about, which is healthier and cheaper in the long run.  Emma and Bella love Lunchables, which are neither nutritionally substantial nor g-free, and I'm thinking of getting these cool Easy Lunchboxes things to make our own:


We're also keeping a running list of g-free foods and restaurants.  Thankfully, there are several phone and Ipad apps that are helping us as well.   Check out Gluten Free Registry -- this is how we found a place to eat out last night.  We tend to avoid chains when we go out, though there are several that do offer g-free and other allergen-free menu options.  We ended up at a cool cafe that had a gluten-free menu and a kids menu (thank you, Xtra's Cafe in Carytown, you were AWESOME!). 

We are blessed that we live close to a metropolitan area that has many g-free food and grocery options.  And I am grateful that gluten intolerance is manageable, requires no medication, and won't put Emma in anaphalytic shock if she is exposed.  My heart goes out to the many folks whose allergies (or those of their loved ones) require supreme vigilance.

We are also blessed with many friends and supporters near and far.  Thank you for sharing this journey with us!

_____________________________


Please be in prayer for the Warner family.  They are in Eastern Europe right now to pick up their son, Joshua.  He is very sick and suspected of having either pneumonia or TB.  If it is the latter, they may be stuck in country for weeks.  On top of it all, mom (Lisa's) sister died two days ago.  Oh, my heart aches for them.  They are stuck in limbo, grieving, running very low on funds, and parenting a child just out of the orphanage who is sick and not used to his new surroundings.
  • If you want to read more of their story, click HERE.  
  • If you want to contribute to their Family Support Fund, click HERE.  (Donations go through Reece's Rainbow and are tax-deductible.  Every little bit helps.)   Thank you for your prayers!

Tuesday, July 12, 2011

Thank you!

Emma was so cute waiting for her procedure -- some of the nurses called her "Shirley Temple."


Thanks for all of your prayers for Emma.  She did so well yesterday!  We should know the results of her tests soon. 

One of Emma's prayer requests each day is for orphans to find families (sweet girl!).  As a favor to me and Emma, would you please be PRAYING for the many families trying desperately to raise the ransom to adopt children all over the world.  Every single one of these children need a family!

Adeye's blog has a great list and series of photos  HERE.   Would you be willing to pick a child (or three!) and pray for them and their families?  Many of them are in need of funds and have some great giveaways and raffles.  Let's all consider skipping our lattes today and sending in a few dollars to one of these precious waiting children. 

Thank you, and Emma thanks you, too!

Sunday, July 10, 2011

A Prayer for Emma

Tomorrow, my middle child, Emma, will be having an outpatient medical procedure, and I would appreciate your prayers that all goes well.

She has been complaining for a while that her stomach hurt, often when we would all sit down to dinner. So for a while, we thought she was trying to get out of eating dinner. But one day I called her bluff and asked if she wanted to go to the doctor, and she surprisingly replied "yes.". (And, as a side note, I hate that the ignorant iPad programmer adds an extra period after quotation marks--drives this former English teacher batty.)

So we saw a nurse practitioner who has three daughters with celiac disease (gluten intolerance). She checked out Emma thoroughly, even bringing in a fellow ped to check for appendicitis. When the NP heard that my mom has celiac, she ordered a blood test for Emma. Emma's blood work showed a high level of antibodies, meaning it is very likely that she is gluten intolerant. Tomorrow's test will help us know for sure.

What does this mean? Well, it may mean that we need to change Emma's diet significantly, and by association, that of the whole family. Wheat is in many things, and even sneaks its way into soups and salad dressings and things we don't think about. But we are certainly better off eating apple slices versus Cheez-It's, in any case.

I am in prayer that the procedure goes well tomorrow, that the doctors and nurses find what they need, and that Emma doesn't react badly to the anesthesia (she is my drama princess, after all!).

Thanks to all for continuing to lift us up!

Wednesday, June 29, 2011

Three Years Ago

Please forgive my lack of posting lately.  I have been caught up in many things -- the end of the school year, start of summer, focusing on family issues, kid sickness -- in other words, life as usual.  I also worried that I didn't have anything "profound" to say in a sea of many bloggers who bring God's truth to the world every day.  And so please excuse some of my rambling...which I'm sure I'll do tonight since this is my first post in over a month!

But today, I realized that words aren't always profound -- sometimes they are laid on our hearts, maybe to share, maybe to reflect, maybe just to abide in the One who put them there. 

So tonight, I was thinking about all these things while  Henry and I were having our usual before-dinner ritual, where he swings in the swing, the kids and I push him, and I let dinner sit or bake until daddy is done with work.  Watching Henry smile and giggle is always enjoyable, every night.

And I realized that, three years ago, I received the news that Henry had a high risk of having Down syndrome.  I was scared.  I didn't know what Down syndrome meant, really, since I knew few people with DS.  But I knew I loved my son, and more than anything, I wanted the best for him.  I did my best not to worry and wait for the birth of our first son!

The pediatrician who met with us after Henry's birth exuded kindness...and tiredness.  It was 5 p.m. on a Friday, and I'm sure she wanted to go home to her own family.  But she calmly explained the signs that showed her why she thought he had Down syndrome.

Reflecting now...she described
- A extra space between the first and second toe....which I now see as adorable
- Low muscle tone...which I could tell right away holding him, as he was like a rag doll.  Now, of course, he's dancing and walking and climbing on furniture
- Eyes spaced a little far apart, nose a little flat...which makes him Henry
- No palmar crease...which is a single line on the hand which some kids w/DS have, but Henry doesn't.

What did I see?  A sweet, teeny boy.  Born early but never spent a day in the NICU.  Born with an extra chromosome, and loved every moment from birth. 

I admit -- I did cry.  Who wouldn't?  Our world touts perfection, normalcy.  But it didn't take long for Mama and Papa Bear fierceness to come in.  We loved this boy.  We didn't know where life would take us.  But it was going to be OK.


Today?  I feel a little silly for worrying so much.  All those blood tests and ultrasounds and doctors visits and days on bedrest were important -- but they don't define what it is to have this child.   I am SO LUCKY to have Henry.  Our family is so immeasurably blessed by Henry -- and because Henry has Down syndrome.  There is something just special and unique about this little guy, and I am grateful every day that Kevin and I have been blessed with two and a half years with him.

There are many parents that would give anything to have a child, or to have their child with them a little longer.  Meanwhile, I have this amazing bundle of happiness, plus two big sisters who adore (nearly) everything he does.



Thank you, God, for sharing all of your blessings with us.  Forgive me for worrying so much, and for not trusting You.  Forgive me for not savoring the blessings I have.  May others feel the call to share -- and savor -- your blessings.

Tuesday, May 24, 2011

Household Names

All praise and glory to God the Father, and our Lord Jesus Christ.  For what we did not understand, what we could not comprehend, has been all for your glory.  Kirill is coming home. 

For those who wonder, who is Kirill?  Yes, he is, like many in our family, almost a household name, and so my apologies for using his name so freely.  He, along with Isaiah and Vilis, Mandy, Kareen, and so many others, have a place on my lips and that of my family. 

Kirill's story is HERE.  I've written about him before.  His family was denied the chance to adopt him time and again, but after prayer and perseverance and the power of God Almighty, this beautiful little boy with an extra chromosome is going to be in the US of A very soon!

And I praise God tonight for Kirill's story.  And for Kareen's.  Check out her link and see the beautiful hairdo's the orphanage workers have given her each day her parents visit -- she is obviously loved by them, and she is loved by her family.   And, this week also, the Hartmans have their Brady, whom they will name Judd Denis. 

All rescued.  All loved.  All who suffered immeasurably in waiting, as our fallen world crumbles around them.  Why must they have been put aside?  Why can't our world value difference?  Thank goodness their families have bared their souls and crossed oceans to defy the world -- to say, "Let the little children come" and "Here am I, send me."

I pray tonight for these families, and for so many others who have crossed oceans or highways or barriers, and also for those waiting to cross.  Be still and know that God is with you.  Be imitators of God.  Run the race toward the prize.  Your God is with you, and your God will not forsake you. 

And for those of us who are not adopting right now -- I challenge you (us), too.  Make these precious little ones part of your hearts.  Go to www.reecesrainbow.org  or a similar site and pick one or two or more children and pray for them every day.  Make them household names, the ones you pray for when you rise up and when you walk along the way.  Let your kids ask if they can have a party to raise money for Isaiah and Vilis, like my little Emma did recently (and yes, we hope to have a fundraiser party soon!). 

My heart is so touched tonight by watching God work.  Please, God, keep us humble.  Keep us focused on You and Your glory.  Let us revel in your goodness and pray through joy as well as adversity. 

To God, be the glory, great things He has done. 
 

Saturday, May 14, 2011

Rockstar morning

Today was a fabulous morning.  It is SO important to celebrate good times, even seemingly little things, to share joy with each other.  Here's what made it great!

  • I got to sleep until 8:30.  Any mom of young kids knows this is huge.  For me, I've not been sleeping well lately due to allergies, and so I've been up a lot at night.  So getting some much-needed shut-eye was awesome.  Many thanks to my dear husband for herding kids and dog so I could rest!
  • Breakfast was to die for at Marty's Grill!  California omelet -- 3 egg whites, turkey, avacado, goat cheese, and fresh salsa.  Yum.  Girls had pancakes.  Henry ate threw toast.
Henry rockin' his bed head at Marty's Grill

  • We went to the Fisher's yard sale for VANYA.  Despite the drizzle, there were lots of people there.  Many neighbors and friends came out to support them. Praise God!  Kristin and Mat are great people, and I am thrilled for them as they hope to travel this summer.   
Fisher's Yard Sale at New Highland Baptist Church Pavilion

  • My girls found some great books and things at the yard sale. 
  • I got to meet ADEYE!!!  And all her precious kiddos.  Adeye is beautiful, inside and out, and her kids are so sweet. Adeye advocates for many orphans, and she helped bring Vanya's situation to light.  If Adeye's name is unfamiliar, then please check out her awesome blog  here. 
Adeye Salem and Kristin Fisher

  • Kevin fulfilled a dream that many a man has -- he is now the proud owner of a (to-be-delivered) John Deere.  Congratulations, honey!
I think the kids "drove" every vehicle on the lot.

Now I'm at home, hanging out with the dog and listening to Henry babble in his crib as he settles down for a nap.  I may not be a rockstar with a seemingly glamorous life.  But I'll take a pleasant morning and be very thankful!!  I have a rockin' Savior, and I am learning to celebrate joy where I find it.
Our new dog, Taylor, checks out the cows in a pasture near our house.

Friday, May 6, 2011

Myth of Supermom

I was graciously asked to write a guest blog for my sister in Christ, Cindy Shufflebarger.  Cindy has an amazing testimony, and I hope to feature her work here soon.

The post I wrote is about how many women try to be "SuperWoman" or "SuperMom."  I get caught up in this mythology sometimes, too.  So catch a glimpse of a day in my life -- a not-so-super-mom who is learning to laugh at my imperfections and celebrate Jesus' love. 

Check out my post at Cindy's blog here!!   http://cindyshufflebarger.com/blog/

Wednesday, May 4, 2011

Bubbles Therapy

There are days when I focus too much on milestones yet to come rather than those Henry is reaching right now.  Guess I just need a little bubbles therapy to get me laughing and -- as always -- recognize that I am amazingly proud of my son.  He may take longer to get where he is going, but each moment, each achievement, is a celebration.  Go Henry!

video

Sunday, May 1, 2011

Our Children's Words and Hearts

I can take no credit for the brief item I will describe in a moment.  It is all about God, who changes hearts, in this case starting with mine.  Because nearly three years ago I learned I was pregnant again (surprise at 38!!!) and months later learned that my special one had an extra chromosome.  Through this amazing little guy, our family has learned about kids with special needs and orphans and Reece's Rainbow and so many other things.

Such "things" led up to a quiet moment in church this morning as we were in line for communion.  Every now and then, instead of having kids off in a children's worship area, our church has families all gather together for prayer and communion with elders and pastors, each family at a time seeking prayer.  As we waited our turn, I asked little Emma, age 5, if she wanted the elders to pray for anything for her.

"Isaiah and Vilis," she whispered. 

My heart.  She could have prayed for a Barbie, for her upcoming birthday party,or even said nothing.  But she has learned, in her own little way, that she is not the sole person on Earth -- quite a feat, as most of us feel the universe should revolve around us at all times. 

Isaiah and Vilis.  We pray for them.  Emma also prays for Mandy, a little girl on RR who has fused fingers.

Moments later, it was our turn to approach the elders.  Henry, in true boy fashion, leaped for the wine/juice tray and grabbed it, promptly raining Welch's on the elder holding the tray.  Oops.  So, so sorry.

But he and the pastor took it in stride.  This is what kids do.  They make messes.  They are exuberant.  Let the little children come.

And let the little children pray.  Emma shared her prayer request -- Isaiah and Vilis.  They are on her mind -- and mine, and all of ours -- every day.  (As I have shared before, due to my history of postpartum depression, we cannot adopt in certain countries, and so we are praying and exploring what our role is to be for these particular boys and other orphans in the world). 

But what a blessing this morning to have my quiet little girl, the one who usually is off in her own, independent world, think of Isaiah and Vilis for whom to pray.  Thank you, God, for turning her heart toward those in need, and for helping us all see that prayer isn't about "gimme" .... but about so much more.
Emma and T21 brother Henry at Buddy Walk, Oct 2010 

Thursday, April 28, 2011

A Smile, A Laugh, a Blessing

I am learning to be grateful for many little things in life.  A dish brought to the sink instead of left on the table.  A pair of pants put in the laundry basket rather than left on the floor.  Simple things, basic things, yet I am learning to appreciate them. 

And then I look at Carrington.  Follow the link HERE and watch how this little girl has blossomed.  How she smiles, finally home with her family. 

This is a horrifying picture of what neglect and institutionalization can do to a child.  In this picture, her parents have just released her from the orphanage and brought her straight to a hospital in the US.  She is thirteen pounds. 

I can't even imagine what this family has been through -- what this child has been through.  And what many others are experiencing each day.  Starving -- for food and affection, for warmth and family.  I mean, she is older than my Henry, who also has Down syndrome, and he weighs 28 pounds!!  (Granted, he has never, ever missed a meal....but this discrepancy is huge). 

Thankfully, Carrington had parents who felt the call to love her (and to bring home another sister as well!).  And there were many others praying for her, contributing to her adoption fund, and raising awareness of orphans with special needs everywhere. 

Thankfully, Princess Carrington is home now, learning to love and thrive. 





Asleep, resting, knowing that God loves her!

Monday, April 4, 2011

Prayer and homeschooling

While I originally intended for this blog to be mostly about the plight of orphans and people with special needs, I do have other aspects of my life that I'll share to give all (15!!) of my faithful followers a wider perspective on the Smith household.  Yes, we do try to pray for orphans every day, and specifically Isaiah and Vilis by name.  Part of how we do this relates to our school time. 

Four days a week, my kids and I do school at home (the other weekday, we attend an academic group, Classical Conversations). And in the past few months, I have made a special effort to have each day start with some form of Bible reading and/or verse study, plus prayer.

Though I had prayed a lot before starting homeschooling, and though I pray now while engaged in it, I didn't always start our homeschool day with prayer with my children If going to God is the most important thing I should do, and which I want to teach my children, how did I think they were going to learn this if I didn't model the right way? 

Conviction.  We needed to pray each day at the start of school. 

At first it seemed awkward.  "OK, kids, we're going to pray."  They are used to us praying at dinner and before bed, and when someone is sick, but before school?  It was a new thing.  But then I started adding Bible reading, and sometimes including the Bible memory verse from either Classical Conversations or AWANA, the program we do at a local church on Wednesday nights.   It seemed natural to add prayer at the end of the reading and study time.  And it honors God and blesses us to have our focus first on Him.

I'm heartened by how my girls are responding.  They will sometimes pray out loud with me, and other times keep silent.  Sometimes they will remind me to pray for Isaiah and Vilis, and other times will add their own prayers, such as for Japan, or their brother, or others. 

Now for those who are wondering, How does this happen?  How do you homeschool kids of different ages, including a toddler with Down syndrome?  Well, I will discuss some of those details and organizational tips in the future.  Truthfully, there are some days when it is amazing, when everyone appears to listen and Henry hasn't yelled or filled his diaper during the few minutes focused on the Lord.  Other days, the cliche of herding cats come to mind (like the day I left my Bible on the floor during prayer time, and the next thing I heard was Henry ripping out pages!!!).  

Keeping one eye open during prayer time is sometimes my only option, while other times, I feel God's Spirit of peace as we focus first on what really matters in life! 

I encourage you, no matter where you are in life, whether you are married or single, whether you have children at home or not, whether you homeschool or do private/public school --- pray.  Pray with your spouse.  Pray with your kids.  Pray with God -- talk to God and give God your day. This is a lesson which I am learning now, and it is bearing much fruit. 

Blessings to you all!
Gwen

Life With My Special Ks: A Seven Day Blitz for Kirill!

A group of moms w/T21 cuties are sponsoring a fundraiser for Kirill's family to help pay the expenses of their appeal. For more information, please click below:

Life With My Special Ks: A Seven Day Blitz for Kirill!: "On March 17, 2011, the Davis family sat in a Russian courtroom and listened as the judge rejected their plea to adopt Kirill, an orphan with..."

Wednesday, March 30, 2011

Time to Tweet!

I have never been on Twitter before.  Curious, but never went there.  Facebook is enough of a time-waster, I mean, interactive zone for me. 

But then I learned that I could help Reece's Rainbow just by agreeing to follow them on Twitter!!  Patricia Heaton (the actress) is donating $1 to Reece's Rainbow for every person who becomes a follower on the Reeces Rainbow Twitter page, up to $10,000 for 10,000 followers!   If you are a Twitter person, go here to follow along.  If you don't Twitter, would you consider signing up, just for this great cause?

From the Reece's Rainbow blog:

EMMY Award winning actress, Patricia Heaton, from ABC's "The Middle", after learning about Reece's Rainbow on twitter, has generously offered to donate $10,000 when we reach 10,000 twitter followers. What a blessing to our ministry she has been and in less than two days, @ReecesRainbow has already reached 3002 followers!

You can also tweet any of the children or families on the Reece's Rainbow website to help them to find their 'forever families'!

Please join in and if you aren't following @PatriciaHeaton, be sure you follow her, as well!

We are proud to welcome Sean Hannity, Sarah Palin, Congresswoman Cathy McMorris Rodgers, and many others who are also committed to raising awareness for our ministry and our orphaned children with Down syndrome and other special needs!

Thank you, Patricia, for all you are doing for our angels! And thank you to all of our @reecesrainbow followers!


________

Also:  Please remember to keep in prayer the Davis family (Kirill) and the Hook family (adopting Evan).  The Davis' are appealing a judge's denial of their adoption of a child w/DS, and the Hook family is facing the same judge in just a few hours to plead their case with her for their daughter.

Tuesday, March 29, 2011

New Ministry Video and Prayer updates

Reece's Rainbow has come out with a beautiful new ministry video.  Please take two minutes, five minutes, or all twelve minutes and view it and pray for the many children in need!

Link to the video is HERE


Prayer updates and praises:
  • Please continue to be in prayer for the Davis family as they wait for their appeal to be processed for Kirill.  Tomorrow is a dedicated day of prayer and fasting for the Davis family and the two other families headed to the same region.  The Hook family is supposed to be in a hearing Thursday.  Click HERE for Julia's blog, which gives more information about these families and the day of prayer and fasting.
  • Praises!  I received a message from someone today who came to the blog for the first time.  She saw the blog in my signature in a post at Richmondmommies.com.  This great person won her company's NCAA pool and, after reading about Reece's Rainbow here, has donated her pool winnings to RR!!
  • There are several families in countries right now to adopt. I pray that they have positive visits with their children and that paperwork and other issues be handled smoothly and quickly.
  • Carrington, whose picture is on the sidebar, is doing better but still needs prayer.  She was immediately hospitalized when her parents brought her to the states.  Pray that her body heal and grow!
  • Pray for healing for some dear friends whose adoption in EE did not work out, and they returned home with empty arms.  Pray for their hearts to be filled with Jesus as they process their journey.
  • Pray for Lois' family, the Hogans, who are coping with her loss while still celebrating her short life. 
  • Praises for my own little T-21 cutie, who learned to sign "Jesus," "mama," and "dad" this week!
  • Pray for Isaiah and Vilis and many others to have a family!

Sunday, March 20, 2011

Praying for K

Those of you who are my Facebook friends may have seen a few recent posts about a family trying to adopt a child from Russia and how the judge recently denied their case.  It is HEARTBREAKING.  They have crossed the ocean -- TWICE -- to see their son.  And a judge has said no. 

This family loves their son.  They have held him.  Snuggled with him.  They have appealed their case, and it will take several weeks to know the result.

His picture is on the sidebar -- what a cutie in his glasses! 
Go here to see them and read more of their story from one of their many supporters: 
 Pictures and story of K and his family

Or go to the family's own site, where they beg us to pray for God to be glorified, no matter what the outcome.  What faith.    http://www.oureyesopened.blogspot.com/


All Christians are called to care for widows and orphans.  Let's do our part and pray this little boy home!!

Thursday, March 17, 2011

Eradicate what?

A recent research study concluded that a new, non-invasive blood test can correctly detect babies with Down syndrome in utero.  The lead researcher, Philippos Patsalis of the Institute of Neurology and Genetics in Nicosia,  told reporters:

    This method can apply to all pregnancies not only those at risk," he added, describing it as "one of the most important milestones in the history of the institute."
   He said the cheaper and quicker method of blood sampling rather than collecting fluid from the womb will encourage more couples to take the test and therefore slowly eradicate the disease.
   "There is no cure, so this is a test for couples who want to know and prevent it, they are the ones who must decide on the fate of the pregnancy."      
(Click here for the full article) 

 After reading this, I felt kicked in the gut.  This person is a clinician, and he thinks that people with the trisomy 21 "problem" should be "treated" or in other words ....terminated. 


Let me be clear:  Down syndrome is not a disease to be eradicated.  It is not HIV.  It is not smallpox.  It is not life-threatening in ANY way.


Yes, Down syndrome is a condition, some would say a "disorder."  But it is not a disease.  It is not something that can necessarily be -- or needs to be -- "cured."

Yes, Down syndrome is challenging, both for parent and for the child, as well as extended family.  There are more medical appointments.  More therapies.  More interventions.  More need for patience.  More money for things not covered. 



But...there is more joy.  More life in the moment.  More hugs.  More smiles.


By choosing life for my child with Down syndrome, my husband and I stand differently than most in this world.  Yes -- 92% of people who learn their child with have Down syndrome will terminate.

(Disclosure -- we knew we had a 1 in 2 chance of having a child with DS, but did not have an amnio, and so delivery was still somewhat of a "surprise" of sorts).


Ninety two percent.  Don't believe me?  Check out this link from National Institutes of Health.

This is 92% of those who know---who have to go through an invasive test, such as chorionic villus sampling at 13 weeks or amniocentisis at 18-20 weeks.  Both of those test have fetal risks.  And this isn't counting those who may have terminated prior to 13 weeks.

But this new test brings new ethical issues.  There are currently some who don't want to "harm their baby" and go through the tests -- but might they do so now, that there is a simple blood test?


Have I not scared you -- or myself -- enough?  Here are some more sobering facts.

From the Wall Street Journal in 2005:
Researchers at the University of Connecticut Health Center examined birth-certificate data and, in a paper published last year in the American Journal of Obstetrics and Gynecology, estimated the number of Down syndrome live births in the U.S. declined 7.8% from 1989 to 2001. They suggested that the drop was due to the use of prenatal diagnosis and the termination of pregnancies.

From Science Daily in 2009 [note:  Slotko, the researcher mentioned, has a sister with DS]
Research reviewed by Skotko showed a 15% decrease in births of babies with Down syndrome between 1989 and 2005 in the United States. 


I could keep quoting.  But it is disturbing.  And it's not just about Down syndrome.  The NIH study includes Klinefelter syndrome, Turner syndrome, and others.  What's next -- autism and cerebral palsy?  Are we going toward a Gattaca society where even the slightest thing -- say, a child's gender, or chance for brown eyes, or my middle daughter's too-curly hair -- is to be silenced and finished?

This is scary.  I know that many people may read this and think it doesn't apply to them.  They aren't pregnant.  They don't have a child with Down syndrome.  But....you are alive.  You have life.  You have dignity.

At what point did God decide you were worthy?  Did Jesus choose some on the cross to die for, and some not? 

Of course not.  He died for all.  But our world changes the question, and so let's pose it again.   At what point did another human being choose your worth?  That, my dear, prayerful friends, is the ultimate question I am struggling with tonight.  And I say this angrily, humbly, prayerfully, and with a heart full of tears.  For my heart was not what it is now, or what it will be in the future.  But I have three precious beauties upstairs, one with an extra chromosome, and through them, God has taught me much.

Blessings to all who have gotten this far!
Gwen

Tuesday, March 8, 2011

Vilis has a FAMILY!!!!

Edited on 3/27/2011:  I received word today that Vilis no longer has a family committed to his adoption.  I don't know the circumstances, just that Vilis is still in need of a loving family!  His grant today lists at $8430.  Hope someone will commit to him soon and bring him home!!!

 -----------------------------------------------
When I first learned the awesome news, I began to squeal and run and holler for my husband.  He must have thought I had seen a mouse or something.

But no -- I saw something much better.  Vilis was here on the "My Family Found Me" portion of Reece's Rainbow.  We have been Reece's Rainbow Warriors for Vilis and Isaiah (both pictured in the sidebar at right) for weeks and months.  Thank you, God, for answered prayer. 



This is awesome!  Congratulations, little Vilis.  I look forward to reading about your new family and hearing about you. 

And while I rejoice fully for Vilis, still I pray for many others waiting.  For Isaiah, Jonah (about whom I'll write soon), Karina, Doug, Mandy, Tomas, Heath, Pauline, and so many others whose names are becoming written in my heart.

Thursday, February 24, 2011

Jesus and Justin Bieber

My daughters and I were out yesterday when my seven-year-old became aware of the song playing in the background.

"This is Justin Bieber," she announced.  And then she paused and asked, "Who is he?"

I explained that he is a singer and made a movie, the trailer of which we had seen a month or so ago when we went to "Tangled" during Christmas break.  Since we don't listen to much popular music, I was surprised that she recognized and remembered the song and singer.  But we don't live under a rock, and  I figured that between the Disney channel and sports and clubs, she'd heard of him and his music, to which she agreed when I asked. 

Then she added, "Someone in AWANA [Bible club] has a T-shirt she wears all the time with him on it, and she sings this and says she loves him."  Then she looked at me like that was a very strange thing to do, to love a singer.  But I also know that she's a curious kid and also a sensitive one, always wanting to make sure that she is doing the right thing.

So I said, "I'd rather you know about Jesus than Justin Bieber.  And I think you do know Jesus."  And she smiled broadly and nodded, as if she knew a special secret, and then she changed the subject to other things, leaving me to cherish her honesty and simple faith.  

I give all credit to God for giving me those words, and for leading her to Him.  But I worry about a world where more people know who Justin Bieber is than who Jesus is, where people proclaim love for someone on TV or on screen versus someone who can live in our hearts forever.  And that's not Jesus' fault -- it's mine, and yours, and everyone who knows about Him and who is called to proclaim his name. 

Yet it is easy to glamorize the things we see and hear so much, rather than that which is often unseen (or segregated to one hour a week on a Sunday morning).  It's easier to pick up People magazine at the doctor's office than to spend time in prayer or reflection.

 But God tells us in 2 Corinthians not to lose heart (chapter 4, verse 16).  And two verses later He continues to remind us of what is important:

 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 


This is a wake-up call for me, to focus on the "unseen," on the faith in our Lord, than just what is in the world around us.   What can we do to make sure that the words of Christ are more well known that the ubiquitous notes of some pop song?

Wednesday, February 23, 2011

A Bystander's Perspective

This post has been making the rounds of Facebook today:

Today I may have actually learned something

It's about a man's perspective of a Starbucks employee who has Down syndrome, and how he realizes her everyday humanity.

I appreciate his honesty, because most people aren't that open.  But while I don't know all of his thoughts, I can relate to the idea that some people are uncomfortable around someone different from them.  I didn't have much experience with people with disabilities before Henry.  My eyes have been opened -- and softened -- to the myriad needs in the world around me, just because my youngest has an extra chromosome.

I hope he sees Amber again, and speaks with her just as he would any other employee.  And, to Amber, I look forward to Fridays, too!

Saturday, February 19, 2011

Signing Time with Henry

It's been fascinating to see a world of communication open up for Henry.  We've been using American Sign Language with him (ASL), and he's adept at getting his wants met through sign -- eat, milk, more, water, all done.

We signed with the girls, and our oldest, Isabella, took to it well.  Our middle child was more interested in moving than signing, but she still would sign for some things.  But unlike our girls, Henry at age 2 is still delayed verbally (as is typical with kids with Down syndrome).  So signing, plus loud yells and claps, is his main way of communicating with us.

Henry loves the Signing Time videos and even has his own sign to request them.  Isabella signs with him constantly, which helps, as repetition is important to reinforce the signs.  Bella wanted to learn even more beyond the Signing Time videos, and so she and I signed up for a local sign language class for homeschoolers.  She's doing so well and is signing sentences.  I can sign my name. :)

I know that not everyone agrees that signing is right for kids with DS.  Some people worry that signs will delay speech.  I'm not an expert, just a mom, but I believe in doing what works for you and your family.  Signing is working with Henry, and so we will use it.  We always say the word and try to reinforce the sound, not just the sign.  He is starting to make sounds related to the signs, like saying "duh" when he signs "done." This, to me, is progress! 

It's also fun to use signs with the girls.  They can quietly communicate with me -- potty, more, let's go, etc. -- without being overly distracting.  Of course, this can backfire, such as when Isabella kept signing "I'm bored" when we were listening to someone give a speech lately.  Oh well.  I'd rather know what she's thinking -- and the other kids, too -- than be left out.  So, we welcome signs and would love to hear from others about their "signing" experiences!

--------

Unfortunately, my videos of Henry signing are not uploading today, and so I'll leave you with a few pics of the guy just for fun!

Loving his 2nd birthday cake!







Very protective of his Elmo





Cruising the gate in the family room



Happy time with daddy

Monday, February 14, 2011

Sick and....Grateful

We've been beset by illness at our house lately.  Stomach flu.  Ear infections.  Sinus infections.  Upper respiratory infections.  Walking pneumonia.  We would get well for a while, and then back to the sick bed.  The receptionist at the pediatrician's office knows us well, and even Kevin and I had to make trips to our doctors and Minute Clinic. 

So why would I say I am grateful for all of this illness?  Truth be told, it's not been fun. 

But the grateful part comes that....we can get the help we need.  We are blessed to have jobs (though mine is all of two hours a week).  We are blessed that my husband's job has good insurance.  We see good doctors and nurses.  We get the medicine we need, the same day it is prescribed. 

In too many places in this world, including in my own city, people don't have jobs.  Or health care.  Or access to doctors and medicines.  So if Isaiah or Vilis or some of the other orphans on this page were sick....would someone lovingly care for them?  Change their sheets each day when they are sick?  Call the doctor and get medicine?  What would it take for them to get the help they need?

So, yes, we've been sick.  And we are getting well...though Henry began to cough this afternoon.  But God, our Eternal Physician, gives us the healing we need -- the Truth that sets us free.

---------------

Please be in prayer for the following families:
- The Hogans, as they celebrate Lois' life and grieve her loss. Pray that God be with them as they cry and help them keep her memory alive in their hearts. 
- The Drozdowskis, who are currently in Ukraine to adopt and running into roadblocks.  Pray that God make his will clear and break down all barriers.
- Families trying to raise money to adopt right now.  There are so many to name, but God knows them and their needs.

Thursday, February 3, 2011

Her Sweet Face

Sweet, beautiful Lois, about whom I wrote here, died peacefully at her family's home this morning.  She is free from cancer, free from pain, and sharing her smile with eternity.

But her death leaves behind grieving family and friends.  There are no words to comfort right now. 

There are others who have shared the same, awful pain of losing a child.  So I will share those words rather than attempt to write my own.  After the tragic death of his daughter, Maria, singer/songwriter Steven Curtis Chapman wrote:


Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...

Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams

And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.

But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy.

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.

Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.



Please pray with me for Lois' family and friends as they remember her and grieve her passing. 

Sunday, January 23, 2011

Beautifully Woven

 In recognition of Sanctity of Life Sunday, it seems fitting to read Psalm 139.  As you read, please pray for the precious "fearfully and wonderfully made" children who need a forever family.

You have searched me, LORD,  and you know me.  
You know when I sit and when I rise; you perceive my thoughts from afar. 
Jayson

You discern my going out and my lying down; you are familiar with all my ways.
Before a word is on my tongue you, LORD, know it completely. 

Shane

You hem me in behind and before, and you lay your hand upon me.
Such knowledge is too wonderful for me, too lofty for me to attain. 

Lisa

Where can I go from your Spirit? Where can I flee from your presence?
If I go up to the heavens, you are there;  if I make my bed in the depths, you are there.

Isaiah

If I rise on the wings of the dawn,  if I settle on the far side of the sea, 

even there your hand will guide me,  your right hand will hold me fast. 
Mandy

If I say, “Surely the darkness will hide me and the light become night around me,”
even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.




For you created my inmost being; you knit me together in my mother’s womb.


Henry
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 


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To learn more about the children pictured here and others available for adoption, go to Reece's Rainbow.