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. 

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. 


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. 


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.


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. 

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.

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

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

Tuesday, January 18, 2011

What's in a Word?

As an English major and teacher, language is important to me.  A word or phrase -- or the way something sounds in tone or style --  can have a major impact on a person's thoughts.

This isn't about being  "PC."  Politically correct means over-embellishing something to the point where it has no meaning, like calling a house cleaner an "environmental improvement engineer" (though my house could definitely use some environmental improvement!).

Rather, this is about helping people exist as fully part of the world in which they live by being truthful and accurate through the words we use.

Such is the case with words surrounding adoption and with people with special needs.  For example, I get annoyed with the "Adopt-a-" whatever programs, since highways and zoo animals are nothing like the commitment to adopt and parent a child for life. 

This didn't concern me too much until I adopted a child.  But  now it bothers me and my child by adoption.  For example, she once walked by a scenic area at a local garden that had an "adoption drive" and asked, "How can they adopt the ground?"  She is seven, but her logic shows.  A garden plot is nothing like a life.

These kids are happy to be siblings -- wonderful kids by adoption and birth. 

So I have made below a list of terminology related to adoption and people with special needs, gathered from my own experiences as well as sources (credited at the end).  This list is by no means exhaustive.  In fact, I welcome comments which add to the list! 

  • Natural child: any child who is not artificial. 
  • Real parent: any parent who is not imaginary. 
  • Your own child: any child who is not someone else’s child.
  • Adopted child: a natural child, with a real parent, who is all my own.
  •  "was adopted":  a child who, at one point, was adopted (versus "is adopted," as if the adoption is still ongoing)
  • Regular  or average child:  a child, just like any other, whether he or she presents a special need or was adopted
  • Typical child:  a child who is like many others but not all, who does not present an obvious special need (Note:  "typical" is the term often used to describe a person in the population who does not have a special need;  for example, I have two "typical" children and one child with special needs.)
  • "Person with ____" or "Child with _____":  a person  who is a person first, and who also has a particular condition or disorder.  (Note:  this means it is better to say, "child with autism" or "person with Down syndrome" versus "Down's person" or "autistic child." 
  • Down syndrome:  the common terminology for the medical condition known as Trisomy 21, first identified in England by a physician named John Langdon Down.  (Note that "syndrome" is not capitalized and "Down" is not possessive -- Dr. Down did not have the condition)
  • "Intercountry adoption" for an adoption from a country other than the one in which the adoptive parents live
  • "Domestic adoption" describes the adoption of a child who resides in the same country as the adoptive parents

So...any other suggestions? Love to hear them (remember, positive words carry more impact).

Let's all look out for each other and support each other in our words and deeds.

Many thanks to Perspectives Press and Growth charts for positive language suggestions.

Sunday, January 16, 2011


My positive attitude about people with Down syndrome didn't just happen overnight.  Yes, it certainly helps by having such a cutie to wake up to each day!

But there have been many people before me who have worked tirelessly so that I can say with pride, "I have a son with Down syndrome."

One family that has helped me along the journey could definitely be called "trailblazers." Forty-five years ago, their son, Dan, was born.  Their actions and beliefs -- and the actions of many other parents like them  -- have given me and my son many opportunities and much hope.

How did they blaze a trail? Let me recount just a few ways...

  • They said "No" when offered the institution after their child's birth (yes, in 1965).
  • They said "No" when told their child couldn't read.
  • They said "No" to doctors and educators with grim prognoses.
  • They said "No" when people asked whether their other children might be "harmed" by a sibling with special needs.

  • They said "Yes" to giving their child as many opportunities -- and responsibilities -- as their other children.
  • They said "Yes" to schools and programs which pushed Dan to be his best.
  • They said "Yes" to letting him live with as much independence as possible, even though it is very hard to let go.

Today Dan is an amazing man.  He lives in a group home and helps care for some of his friends in the house.  He can read the bus schedule better than many typical folks and go wherever he needs in his area.  He loves baseball and the amusement park.  He has a job.  He has a girlfriend.  He lives in another state than his parents.  He has a cell phone.  And an e-mail address.  Did I mention he has an extra chromosome?

Dan and Henry meet for the first time

Because of Dan and his family -- and many families across this country like them -- I don't have to fight for my child to go to school.  Or live with his family.  Or so many other opportunities that I take for granted.

What a great pair they make!

So, to Dan and all of his family -- thank you for blazing the trail!

Friday, January 14, 2011

Beautiful video and Bone Marrow Drive Update

Kelle Hampton is a well-known blogger whose birth of Nella last year caused an blogworld sensation.  She describes, poignantly, the myriad feelings one has when one gives birth to a child with Down syndrome.

On the eve of Nella's first birthday, she put together a beautiful video about Nella and many others with DS.  If you love someone with Down syndrome, you will love seeing the many faces and hearing the message of acceptance and hope.  To see the video, go to Kelle's blog here

(Yes, the video also mentions fundraising. If you want more info about Nella's ONEder Fund, click here)


UPDATE:  I want to thank everyone who has prayed for Lois in the past week.  Keep praying!

The Bone Marrow drive went really well (my husband was the first one added that day!).   According to Lois' mom, "fifty three new names were added to the National Bone Marrow Registry today, and $2,500 dollars was raised to help support the work of the Registry - all in Lois's name."
Super Lois!

Thank you for all of your support.  If you have yet to be registered as a bone marrow donor, scroll down to the end of the last post for the link to the marrow registry.  It is EASY and may save a life!

Monday, January 3, 2011

Save a Life -- Like Lois!

I have written so far about orphans and the need to raise awareness of the positive impact of people with Down syndrome have around the world.

Today I bring the focus close to home, to a beautiful, precious girl named Lois.  I met Lois and her family soon after my T-21 cutie was born.  Lois' mom reached out to me at my first parent meeting, and I am forever grateful for her welcoming me into this special club!

Lois is an amazing, sweet three-year-old girl.  She has an infectious smile and a great little brother who cheers her on.  And if Lois doesn't make you laugh, her mom sure will, as she is a hoot and a great lady (and dad is cool, too).

But Lois is in the fight of her life right now. Earlier this year, she was treated for Myelodysplastic syndrome leukemia.  While there was hope that she was in remission, unfortunately her condition has now worsened into a fast-growing, severe leukemia called acute myelogenous leukemia (AML).  It is every parent's worst nightmare.

Such a cutie!!!   

Lois' best hope is for a bone marrow transplant.  This means she needs someone to willingly donate a sample of tissue (easy cheek swab) to be tested to see if she can have her life saved.  Are you willing to help?

This issue is near and dear to me not just because I love Lois.  But also a member of my husband's own family, Ashley, had this life-saving treatment two years ago and is blessedly with us today.
Cousin Ashley and my husband, Kevin
No one asks to have cancer.  No one wants their child to be terribly sick.  To spend days in hospitals, getting painful tests and procedures -- while missing work, family, and wondering how this can all get better.

It is SOOOO easy to get tested to see if you are a match for bone marrow.  If you live in the Richmond area, there is a drive this Saturday at Ginter Park Presbyterian Church, 3601 Seminary Avenue, from 10-1.  This church is in the North side of Richmond, near Brook Rd and Laburnum.  As I wrote above, you will have the inner part of your mouth cheek swabbed with a big Q-tip.  That's it.  A cheek swab, potentially to save someone's life.

If you are out of town and not able to come, you may still get on the registry!  Just go to Be The Match and click on Join the Registry.  Fill out a few online forms and you will receive a swab kit in the mail.  I did mine at my desk while my oldest worked on her spelling words.  Very, very easy.

It is free to register, and registration is open to anyone age 18-60.  There are costs involved in the matching process, though, and so if you are able to make a donation, you may do so at the drive on Saturday, or when you register online, or you may go here for Lois' team.

Let's work together to save a life -- and save Lois.