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Down Syndrome Awareness Month

October 21, 2014 by nohandsbutours 0 Comments

October is Down syndrome Awareness Month. An entire month to celebrate those who were gifted with an extra gene. Which is kinda cool, if you think about it…like a national birthday party for your DNA. It’s hard to get better than that!

I frequently describe Down syndrome as an ‘extra chromosome of love’. It is the most perfect explanation I have for how God lovingly knit my boy and his chromosome buddies together. I imagine Our Heavenly Father sat down with the angles and said:

“Now, I’m going to create a TRUE masterpiece. I will mold these special humans together perfectly with an extra chromosome of My love. The world will say these wonderful children are broken & disabled, but they will reflect My image purely. They will move a little slower, taking time to enjoy My creation and the people I have placed in it. They will live & move & BE in My presence effortlessly. Despite physical difficulties like hearing loss and speech delays, they will hear My voice easily and learn to speak gently and with grace. Their understanding of Me will not be limited by man’s theology or legalism, it will be doubtless as it should be. Man will labele them simple, but they will love deeply and unconditionally….like Me. When the world says my splendid creation shouldn’t be born, I will declare My perfect peace, My complete joy, My total love over them again, and again, and again”.

Now THAT is something to be aware of! My child isn’t perfect, he is still human and a toddler at that, which makes him a tad bipolar. But when I glimpse of how the Lord works through my little boy’s extra genes, I am acutely aware of the damage of sin genetically inborn in me. Man’s pride has created a world that celebrates physical and intellectual “perfection”, absolutely setting aside God’s defining perfection — love, joy, peace, patience, gentleness, kindness, faithfulness. If you add serious dance moves to that list, you have a near perfect description of those with Down syndrome!

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So happy Down syndrome Awareness Month. I hope you get to love on those around you rocking an extra chromosome. (I REALLY hope they get to love on you too! My boy gives the best hugs!!) Take a moment to see the Lord’s heart at work. Ask yourself how you can be more like the One who perfectly created us all. And then ask the Lord how you can help bless those with an extra chromosome of love and their families. I betchya they’d LOVE to welcome you in!

Here are a few organizations and ministries you can consider supporting:

National Down Syndrome Society
Bethany Christian Services’s Bamboo Project
National Down Syndrome Adoption Network
GiGi’s Playhouse
Down Syndrome Community

 

The Ayers Family Writes Their Own Story

October 20, 2014 by nohandsbutours 4 Comments

As people grow up, get married, and launch into a life together, there’s a funny series of conversations that often encircles these rights of passage. Even as a teenager, I remember the chatter.

“How many kids do you think you’ll have?”

And after weddings, I’ve heard, “When do you think you’ll starting trying?”

Right after a birth, “Do you think you’ll have more?”

I’ve almost always observed these questions tossed to and answered by others. I don’t necessarily wish to be the recipient. I’ve known for as long as I can remember that there lies a complexity in these questions-and their answers-that doesn’t fit with the short, certain replies people seem to expect. Most people haven’t asked me or my husband these questions because it lingered into that awkward realm of the unknown. We are two people with a genetic disability called Osteogenesis Imperfecta (OI). OI is a type of dwarfism that causes brittle bones (mostly in childhood in our cases). We use wheelchairs for mobility and drive with adapted vehicles.

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Individually – and especially together – most people just didn’t expect we’d have children. A few years ago, I might have felt angry at that assumption. How could the same people who parenthood as the best part of their lives, assume that I would have no interest?My husband and I have mobilized creativity, determination, and hard work to achieve so many of our goals. Why would parenthood be the one path we accepted as beyond our abilities? Today, I realize a beautiful path of possibilities emerges when people absolutely no expectations for you. I’m thankful for the gift to write our own story, think outside the box and set our own expectations and vision for our family.

In 2010, we welcomed our biological daughter Hannah into the world.

I enjoyed a healthy and happy pregnancy punctuated by a planned c-section due to my short stature. We embarked on pregnancy with the knowledge that there was a 75% chance that Hannah would inherit one or both of our OI genes. We were fully confident in our ability to carry over our knowledge about living with OI to parenting a child with OI. We did fear the 25% chance within those odds that our baby would inherit both OI genes. This is called double dominance and doesn’t result in survival. At around 16 weeks, we learned that Hannah was not double dominant. Shortly after birth, we were also confident she did not have OI. We are a proud mixed-ability household that views disability as just a part of our family’s culture.

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We knew we wanted more children and my husband and I had both grown up with thoughts of adoption. Perhaps it was related to our own questions about whether biological parenthood was possible or the lack of examples of other parents like us. Yet again, I’m appreciative that we’ve never been bound by expectations assigned to those without disabilities. When you don’t know what a family like ours should look like or should do, you make up your own rules!

We connected to other parents with disabilities who had adopted and learned about programs that had welcomed this aspect of diversity. We asked about travel. While many people are wary of squatty potties, adding a wheelchair to the terrain in other countries is another dimension of challenging! We learned that it was difficult but possible. With what I imagine is the same pounding heart and lump in the throat shared by other adoptive parents, we took the plunge and locked our son’s file. Eli is 7-years-old and has a different type of dwarfism from our OI. He has achondroplasia. I was initially fearful to add adopting out of age order to our long list of relatively unique circumstances, but I’m so thankful we trusted that little voice saying, “You can do this!”

He needed us and we now know, we needed him.

We brought Eli home just two and a half short months ago! This is our first picture:

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And here here’s Eli meeting his sister:

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Throughout the entirety of the process, China was an exceptionally welcoming country to our family. Our documentation clarified that our disability doesn’t negate our overall excellent general health. In fact, our disability makes us even more equipped to parent our son. From the start, we’ve celebrated his membership to local support groups and made connections to medical experts familiar with his dwarfism. Our years of advocacy experience combined with the knowledge of living as people with disabilities continue to be an asset to the adjustment process.

Adoption is far from easy for any family. “When will you start your home study?” will probably never be one of the first questions asked at a wedding shower. It’s not the typical path and that’s OK. For those that have shared this journey, we know the unending beauty in building a family through adoption. We aren’t the typical family. Our differences have opened our hearts and our worlds to experiences we never dreamed possible. I’m thankful we took the leaps no one expected and wrote our own story.

Kara blogged about her family’s adoption journey at Ayers Adoption: Roll You Home.

Find my Family: Sam

October 20, 2014 by nohandsbutours 0 Comments

Sam is fun, engaging, and is now eleven years old. His age and the fact that he is a boy are likely his biggest special needs. He has seen many friends be adopted, yet he still waits. How hard that must be for this sweet eleven year old, to dream of a family yet never be the one chosen. Please share this sweet boy’s picture and lets make his biggest dream come true! Sam walks with a slight limp which does not slow him down one bit.

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Read much more about Sam here. He is such a special boy, let’s help him find a family!

Re-Aging and Un-Twinning: Sam and the Time Machine

October 19, 2014 by nohandsbutours 2 Comments

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Or, how my son got younger since we adopted him. We recently celebrated Round 2 of my son Sam’s fourth birthday party. On the surface, this may not seem unusual. A lot of people might have two different birthday parties – one at school and one at home, one with family and one with friends, …Read More

waiting child highlight: boys with hemophilia

October 18, 2014 by nohandsbutours 0 Comments

If you know someone considering a boy, share with them these precious faces. Each of these boys has hemophilia, which is so manageable in the United States. Right now, these boys’ access to treatment varies, depending on their location. But, once they age out, they will have little to no access to treatment at all. …Read More

what we’re reading links : 10.17.2014

October 17, 2014 by nohandsbutours 0 Comments

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From the last few weeks (okay, it might be more like months… but it was summer, y’all), some good stuff we’ve read that relates to adoption and/or parenting a special needs child. As always, if you’ve read or written something you think would be a good addition to a future What We’re Reading post, we’d …Read More

Taking Care of Business – part 2

October 17, 2014 by nohandsbutours 2 Comments

In my previous poop and potty post I shared with you about our son who was born with spina bifida and as a result he is incontinent. After watching him sit on the waiting child list the Lord made it clear that he was our son and that we could do this special need. And …Read More

find my family: Channing

October 16, 2014 by nohandsbutours 0 Comments

Channing is now over 5 years old. He is extremely cute, and his big eyes are bright and sparkling, as if they could speak. Under his delicate nose, his sweet mouth has grown into quite the talker. Everyone really likes him. However, Channing tends to speak a little childishly when he talks. All of his …Read More

When Labels Don’t Stick

October 15, 2014 by nohandsbutours 4 Comments

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It’s been a year since I paused while writing a post for this very site and glanced at the photo-listings for children on our agency’s website. And I saw her. It was a morning exactly like this one. I was up early, before the sun came up. The cup of coffee growing cold beside the …Read More

Find My Family: Jack

October 14, 2014 by nohandsbutours 0 Comments

Meet Jack! This handsome little guy will turn 2 in October. He is described as outgoing and active. He loves snuggling and attention, both of which he welcomes with a smile. According to his caregivers, because he is often smiling, he is lovely and adored. It doesn’t get much sweeter than that! His video can …Read More