Thursday, January 26, 2012

What is different?

Tonight, Henry fed himself mashed potatoes. He sampled some chicken and blueberries before letting his plate fly (which means "no more" at our house, whether the thrower intended such or not). Later, he went potty, got his teeth brushed (fighting all the way) and went to bed.

Though he didn't utter many distinguishable words, between his signs and word approximations, I knew what he meant. I knew he needed to go potty. He signed "yes" when I asked if he wanted a stuffed animal in bed with him. He signed "dog" and said "wuf wuf" when our pup came bounding into his room. White dog, Henry signed. Yes, I thought and signed.

He gets it. Our dog is white with brown spots, and Henry's class has been studying the "Brown Bear" book all week, and so of course "white dog" is now part of his lexicon. He is learning so much. He can even write an H to start his name.

To me, this is normal, and also wonderful. For too long, kids with Down syndrome were considered not able, not capable to do many of the things I listed above.

Feeding himself. Toilet training. Throwing food. Snuggling with stuffed animals.

Sounds just right to me!

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 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.

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.


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., 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 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!!