How We Came to Love Down Syndrome

We are in San Francisco waiting for four hours to board our plane for home.  I thought I'd use my time wisely and do a little "journal writing" blog-style.  I love writing. I find it so therapeutic and it always helps me realize things that maybe I hadn't thought of before.  I want to write about how we have come to not only accept, but love the fact that one of our children has Down Syndrome. 

Like most people, we didn’t have a lot of exposure to people with DS, other than the occasional kid at school or person working as a bagger at the grocery store.  I always loved them and thought they were so sweet, but honestly thought I would be devastated if one of my babies was born with DS.  During my first few pregnancies, the thought would come to my mind, “I hope our baby has the right number of chromosomes.”  I didn’t think I was cut out to be a mother of a child with special needs of any kind.  What scared me was simply the fact that the child would not fit the bill as a “normal” person according to society’s standards. 

What are society’s standards?  Our society (and most other countries’) expects that people look alike, act alike and that they learn at a certain pace. By the time a child is, say five years old, she should be able to speak clearly and fully, take care of her physical needs, recite and write the alphabet, take turns with others, express her needs without throwing tantrums, look clean, dress in clean clothes, and maybe even ride a bike.  So when a child isn’t doing one or more of those things, there must be something wrong, either with the child or the parents.  And if they can’t do most of these things, there’s something really wrong, and it makes people feel a little uncomfortable for some reason.

I’ve always been an “in the box” kind of person.  I just want to blend in. I don’t speak out much in groups, I dress conservatively, drive average cars that are no more than 5 years old, wear makeup when I go in public, etc.  So when I thought about the Lord sending me a child with Down Syndrome or Cerebral Palsy or something of this nature, it scared me to death because our family would no longer blend right in.

Now look at where I am.  It’s amazing when I think about it.  Not only am I going to be the mother of a child with Down Syndrome, but I am choosing to be the mother of a child with Down Syndrome.  How on earth did I get this point?  How did Jeremy get to this point? 

Any time a person steps outside his or her comfort zone to do something they feel is right, it never just happens.  Something has changed inside of them and they feel strongly enough that that change has happened for a reason, that they act on it.  This is what happened with us. But it didn't happen all at once.  Lots of things contributed to preparing us for this acceptance.

First of all, our family knows what it's like to love someone who has special needs. Jeremy’s older sister, Teresa had a baby 22 years ago who was born 3 and a half months early.  She suffered a brain hemorrhage, which caused a stroke, which caused brain damage. She can walk fine, but she is mentally about two years old.  She wears diapers and always will.  She speaks clearly, but only by repeating what others say.  It’s been challenging for Teresa and her family, but it’s just the way it is and Kimberly is just Kimberly.  I know that Teresa’s family wouldn’t trade Kim for a typical child even if they were given the chance.  Kim has taught them incredible lessons that have brought them closer to their Savior and made them so much more compassionate toward all kinds of people.  Not just people with special needs, but also people who act differently by choice.  They never judge others.  They accept them the way they are. Kimberly is mostly responsible for this.  All of Jeremy’s family is changed because of Kimberly.  We love her so much.

Five and a half years ago, we received an e-mail from some friends of ours,  The Cantwells.  Dave was one of Jeremy’s best friends in high school and his wife Jen and I have become close friends as well.   I wish so bad they lived near us.  Anyway,  I still remember opening that e-mail back in July of 2005.  I knew it must be important when I saw how long it was.    

In the e-mail, Jen told the story of how their world had completely changed a week earlier when they learned just after giving birth to little James that he had Down Syndrome.  She talked about all of the emotions that they experienced…anger, grief, sadness, guilt…you name it.  But then she talked about a really neat experience she had when she was nursing James a day or two after he was born and the Holy Spirit completely enveloped her, changing her feelings about her baby.  Her feelings turned from fear and hurt to peace and even joy!  She saw James with God’s eyes.  She completely accepted him the way he was.  She fell in love with his almond-shaped eyes, his webbed toes..everything.  She was grateful that he came to earth this way.  She never looked back after that.  Yeah, there were times when she would have brief moments of sadness wash over her when she thought about what he wouldn’t get to experience in his life, but those moments would always go away quickly.

In 2006, when James was 18 months old, I met Jen in San Diego along with another mutual friend and my sister for a much-needed girls’ getaway.  (Well, I guess you could call it a getaway...three of the four of us brought babies!  But we had other kids, too so just having the babies along was relaxing.) Anyway, this was the first time I met baby James.  We spent four days in a condo that overlooked the ocean, just relaxing and talking, talking, talking with no interruptions.  We had hours to talk, so I got a close-up view into the thoughts and feelings of a mother of a child with Down Syndrome. 

Looking back, I see Memorial Day weekend of 2006 as something that our Heavenly Father put together to help prepare me for Anna.  That weekend, Jen talked about James with so much pride.  She loved showing him off to everyone she met. He was her gift from God.  She loved that people’s faces would light up when they saw him and realized he had DS.  She and her husband had recently purchased a home that has an apartment attached to their garage so that James could live with them when he grows up, but still have some independence.  They were happy about their future with James and the rest of their kids.

My attitude about DS changed that weekend.  I no longer feared it.  I thought of it as a blessing and wondered if maybe Heavenly Father would send us one of these special people some day.

So if we fast forward to this past year, it all comes into place in a way I never had imagined. It all started a year ago when I had strong impressions that there was a child somewhere in the world who was already born and needed our family.   This feeling grew with an intensity that couldn't be ignored. Many prayers later, we accepted our call from the Lord to find our little one.  One event led to another to another, and eventually we found Reece's Rainbow, where our daughter's picture and info was shown. When we saw Anna's picture, we knew she was the one we were supposed to bring into our family.  We were so excited to finally have found her and we decided to commit to her within a few days.  When you know, you know.

Last Monday, this beautiful little girl bounced into an orphanage director’s office and firmly planted herself into our laps and our hearts.  Any fears that we had at one time about having a child with Down Syndrome completely left our minds.  In fact, the very traits that characterize DS are the ones that we love most about her. Even having said that, we don't think of her as being different.  She's just Anna.  The Anna we have dreamed about all these months.

I was checking the Reece's Rainbow Yahoo group during our layover in Frankfurt today and noticed a post written by a woman who is considering adopting a child with Down Syndrome and is sad because her dad is very worried that the child will be too much of a burden on her family.  She wanted to know people's opinions of this.  A lot of people replied telling her lots of examples of how they are easier than their typical kids in a lot of ways.  This one really struck a chord with me. It was written by a gal named Gretchen, who has one child born to her with DS and recently adopted a second. This is what she said:

To me, this is how they are easier:

Our other kids without DS are all supposed to fit in this box, I'll call it the "normal" box and whenever they are not fitting in it because they struggle for one reason or another, it is very stressful. Because....they are supposed to be there you know!!

My kids with DS are just easier...I can't explain it completely but I think it is because there is no box they HAVE to fit in. They create their own box and we just get to see what it looks like. All I can say is I LOVE DOWN SYNDROME!!!!! I just look at someone with DS and I want to go hug them and take them home. My kids have that now too! You gotta love that, right?!?!?

Even when they are having difficulties....I just don't feel "burdened" caring for them. I feel honored to be able to care for them. They just do something to you.

They are teachers of our souls!!!!!

That's my input!
Gretchen

Really, each of our children have "special needs." They are as different in personality as five kids can possibly be.  We have to handle them each a little differently in order to maintain a healthy relationship with them and help them to reach their full potential.  Not only do they each have their own unique needs, but they also have their own unique gifts and will discover them in different ways. Anna will fit into the mix perfectly. Yeah, she'll face challenges that are unique to her disability and the fact that she's been raised in an orphanage. Some of these challenges will try our patience.  But we're not worried about this. She truly will teach all of our souls.  She has already awakened our senses in a way we never imagined.  We look forward to learning more about  life through Anna.