Taking the low place, part 1

July 13th, 2012

He has no form or comeliness;
And when we see Him,
There is no beauty that we should desire Him.

He is despised and rejected by men,
A Man of sorrows and acquainted with grief.
And we hid, as it were, our faces from Him;
He was despised, and we did not esteem Him.

 

A couple sat in the front row, looking up at the speaker.  They’d been asked to speak about special needs adoption to a Sunday school class in their church–one of the biggest, wealthiest churches in the county.  Our friends had recently come home with two little ones with Down syndrome from state-run institutions in Eastern Europe.

 

Their two sweet dumplings are ages four, wearing a size 2T like Verity, and five, wearing a size 3 T like Katie~

 

They fervently desire that God would use their family to open hearts in their own church to orphans with disabilities.

While they waited for their turn to speak, they listened intently to the adoptive dad standing before them.

He explained that adoption is a good way to grow your family.

He joked casually about what a drag all the adoption paperwork was.

He mentioned special needs adoption.

My friends perked up their ears.

Don’t be scared off by the special needs label, he said.  Many times mild special needs turns out to be nothing at all, like it did for our adopted child.  It doesn’t have to complicate life.  Special needs adoption doesn’t always have to involve brain problems, he said with a laugh, “Not all of them are retards.”

 

For a long time, such a long time that most of us aren’t aware that there is any other way to see it, the North American church has confused “social acceptability” with “being a good witness.”  We think that if we can make ourselves blend in to our culture that somehow outsiders will want to run to us and ask how they can learn to know Jesus, too.  Of course we can carry private pro-life feelings inside us, and feel vaguely sad for the “less fortunate,” but Heaven forbid we commit any embarrassing social gaffes, or even have a lame sense of style.  Not only would that be personally humiliating, but it would be a bad witness. Right?

 

Using this logic, Jesus would be a bad witness for…um…Himself.

 

If He showed up during the morning worship service at many churches, His presence would cause awkwardness.  Jesus would not blend in unobtrusively with a formal, affluent, polished, gracious-living congregation.  What is this odd-looking guy going to do?  I know I should go over and welcome him, but honestly, it could get embarrassing.  Maybe it would be best to just keep chatting with my friends and sort of pretend I didn’t see him.  There are other places that would probably be better for people like that.

 

 

 

Something has been growing in my heart over the past months as I have taken Katie out into public multiple times.  Her different look, her odd ways, her noises, her obvious disability—nothing about Katie blends into acceptable society.  Her most obvious issues have very little to do with Down syndrome, and a great deal to do with years of severe neglect and institutionalization.  And they are obvious issues.

Sometimes we cause an inconvenience to others.  Maybe they have to wait for us as we make our way slowly through life with Katie, or maybe we are in their way.  Maybe she makes them unmistakably uncomfortable.  The phrase that often comes into my mind at those times is, “a stone of stumbling and a rock of offense.”

People ignore her, they turn their faces away, they stare curiously (unobtrusively or not), they act embarrassed.  Some folks hesitantly ask whether she has Down syndrome, and tell me about someone they love who has Down syndrome.  A few are intrigued and entranced by her.

People always notice Katie, and always respond in some way.  Her presence seems to require a response.

And there is nothing unobtrusive about the real Jesus.  His presence requires–demands–a response.  A stone of stumbling and a rock of offense.

 

What does that mean for parents adopting children with obvious special needs?

 

 

Question:  We are considering adopting a child with a severe disability.  I must be honest with you…her looks are quite jarring and I wonder if we would have what it takes to parent her….we live in such a cruel world and people can be so mean.  I think it would break my heart to watch her try to make her way in this world only to be stared at, mocked, belittled…etc.  Obviously her future would be way better here than where she is now but it still concerns me. I wouldn’t have a problem loving her but I am not one to sit by idly as people point and stare. I might have to mess them up…lol.

Answer:  Assuming you qualify to adopt, if you love this little girl, and that’s why you want to adopt her, you have what it takes to be her daddy and mama.  All the other stuff can be learned.  You can learn to choose grace and forgiveness, even when your cheeks are burning and adrenaline pumping.

You will sometimes fail to offer a gracious response, as I do.  I’ve come a long way since I first heard that Verity would have Down syndrome, but my claws still occasionally prickle up at certain things, especially depending on the character of the person who makes the statement. “When their baby was born, it was a Down syndrome.”   

It helps me to remember…they treat Katie as though she has little value?  How did they treat Jesus?

From my experience with Katie, the reactions you get will fall into a few categories.

~By far the most common response from people who don’t know Katie’s story is awkward avoidance. Most people have kind intentions but feel very uncomfortable and genuinely don’t know where to look or whether they should say something. Their response is intended to avoid causing offense, perhaps because they have been attacked in the past by offended parents of children with disabilities.  They truly have no understanding of how it can feel to have people coo over other children and pretend not to see yours, over and over and over again.  I handle this by being ready to open up the conversation myself, usually by saying, “This is a little special girl,” and briefly telling her story. We made up cards to give people so they can go to the blog and learn more if they want to.  I help them understand her a bit better, and also explain to them how to interact with her.  It’s often the not knowing what to do that can make any of us feel awkward.

~A few people have enough personal familiarity with people with disabilities to give them the edge over the majority.  They feel comfortable coming up to me and chatting about Katie, and often mention that they have a relative or friend with a disability.

~Sometimes people are comfortable talking to me about our girls, but end up being unintentionally hurtful because in spite of their kind intentions they just don’t get it.  “You know, we’re all ugly and retarded to God.”  (Uh, you just told me without knowing it that when you look at my little girls, you see them as ugly and retarded.)  This is the same type of hurt that happens if someone accidentally treads on your bare foot with a heavy boot.  You could be understanding as the day is long, and your friendship with that person would remain unchanged, but your toes would still be sore for a while.

~When people are blatantly and offensively rude, which doesn’t happen very often, my ready response is to smile sweetly into their eyes and ask, “Did you really mean to say that out loud?”  This puts the ball in their court.  It may not be your style, but I prefer to engage people in conversation and hope to help them see things from a different perspective.

~An unusual but very telling response to Katie was the one we received from the therapists and specialists who came to our home one or two at a time this past spring to assess her.  I had clued them all in ahead of time by phone.  All they had heard was that she was ten years old and had been adopted from Bulgaria last year.  It seemed prudent to prepare them a bit more than that.  I explained Katie’s issues and what had caused them.  After hearing her history and current status, when the experts actually came and observed her, they were awed by how alive and alert and interactive and spunky she is.  (Hmmm, listening to a long description of her issues didn’t give them an accurate idea of her individual, unique personhood?)

~Some people respond to Katie by telling me I’m a hero, especially after they know Katie’s story.  That can actually sting a little, although the sting is caused unintentionally.  (My child is so obviously unlovable that it takes a hero to love her?) You can be ready for this response. I like to say smilingly, “No, she’s my daughter and I love her. That doesn’t make me a hero, it makes me a mom.”  The folks in this category are kind through and through, and will often just lean toward me and say, “God bless you.”

~A few people are immediately drawn to Katie, like the woman in the cafe at the children’s hospital where I sat helping Katie to drink her specialty drink concoction, trying my best to keep us both somewhat clean in the process.  The woman couldn’t tear her eyes away, and eventually told me that Katie was the most beautiful child she had ever seen. Or like the radiant older pro-lifer who came up to us, held Katie’s hand and said with tears, “Precious child, I love you.  I love you.”  This stranger had no idea of Katie’s story, and wept as I recounted it.

 

Question:  Now that you brought up the subject, what response do you recommend I give to a child with disabilities?

Answer:  Thank you for asking!  The counsel appropriate for you is very different from the counsel appropriate for the parents involved.  Yes, I’ll encourage Christians who are treated badly to identify with Christ and bear it with grace.  But if given the opportunity, I will tell potential offenders how to help instead of hurt!

Katie and I were at the pro-life convention for almost a whole day before I spoke.  A small number of the other attendees had already read about Katie here on the blog, and knew her story.

As I walked through the crowds with Katie in my arms, most people looked at her, then awkwardly kept their faces turned away from us.

Once in a while, I witnessed a different reaction.  People glanced at Katie in my arms and did a double-take.  Their faces immediately flushed and their eyes teared up.  A look of awe came over them and they lit up like a Roman candle, reaching out a hand and asking, “Is this Katie?

During my presentation, I recounted these two reactions to the audience.  And gave them the challenge that I now give to you.

If you don’t remember anything else I say during this talk, I want you to remember this one thing.

For the rest of your life, whenever you see a child with special needs, my wish is that you would light up for them like a Roman candle.

 

Sometimes I wonder whether some who know our story think that special needs adoption is okay for our family because we didn’t have much to lose anyway. But why would anyone ask them to give up their great life or social status to care for a disabled child? It’s one thing to make the best of an unfortunate situation, they may think, but to deliberately choose it would be insane.

Living with Katie has become a treasured constant reminder to me of the life and death of Jesus.  He had everything to lose by coming down here.  He deliberately chose to give it up.  He chose to lay His reputation down, take the lowest place, and give up His life.  Out of love and obedience to His Father, Jesus willingly and purposefully humbled Himself to the point of death.

Since it makes sense for followers to follow, it makes sense that everyone who really follows the real Jesus would also willingly and purposefully humble themselves and give up their lives, out of love and obedience to their Father.

 

 

My dad and I stood, chatting, in the street outside his home.

I wanted to break it to him gently.

“We hope God lets us be one of those families who keeps bringing home children that nobody else wants.”

“Oh Susanna,” he replied without hesitation, “You know you could fill your house with Alzheimer’s patients and we would be overjoyed!”

 

 

 

Let this mind be in you which was also in Christ Jesus, 

   who, being in the form of God, did not consider it robbery to be equal with God,

  but made Himself of no reputation,


taking the form of a bondservant, and coming in the likeness of men.

 

And being found in appearance as a man, 

   He humbled Himself

   and became obedient to the point of death,

   even the death of the cross.

 

 

 

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32 Responses to “Taking the low place, part 1”

  1. Christine says:

    Oh my! How much cuteness can you fit on that blanket?!?! SOOO CUTE!

    Thank you for this post. I admit that I am one of those who has no experience with special needs and don’t know how to react to people who do.

    I would always be kind if spoken to, but I usually look away or smile, but carry on.

    It is because of you (and the numerous others whos blogs I visit) that I will try to go out of my comfort zone and “light up like a Roman candle” for others. Every person deserves to know how beautiful they are.

    Thanks again. (hugs)

  2. Susan says:

    Thank you for sharing this – so simple, so effective, so easy, so filled with common-sense suggestions –  why is it so hard for some to understand ? I admire your graceful response to those who are well-intentioned but awkward, as well as to those who are awkward and perhaps not so well-intentioned, along with those who are simply clueless.

    There’s a new-to-me BBC documentary titled “Ukraine’s Forgotten Children”, first shown in June, 2012 and now viewable on YouTube. It was produced by the same person who filmed the Mogolino documentary in Bulgaria a few years ago, and I hope this new program will have the same – actually, I hope it will have a more extensive – effect as did that one. It focusses on a remote institution in southern Ukraine, one with a caring director but inadequate support, and it points out very clearly near the beginning that Ukraine has recently heavily invested in infrastructure because of the world soccer tournament, but the children in its inadequately funded institutions languish.

    It also pointed out that TEN TIMES more children are “in care” in Ukraine than in England.

    So I’d urge all who read here to watch this very important documentary – don’t know how it escaped my notice for the last month!   

    Thanks again for keeping your blog so current and so moving. it’s a great reminder of so much, for so many.

    Susan in Ky
    Cousin to 2 from EE    

  3. Catherine says:

    “Did you really mean to say that out loud?”
    Oh, please may I use this one? I am not sure I would ever feel brave enough to truly say as such but I’d like to think I could. I tend to just blanche/turn red or run away.

  4. Amy says:

    Oh Susanna, God has given you such a gift with words. Thank you for sharing your heart. I have to remember the response “Did you really mean to say that out loud?”, because I’m usually left speechless! It’s hard to explain to folks what a positive response to my children means to me as a mom.
    My prayer is for more families to truly seek what Jesus would have them do in regards to “the least of these”. I remember the fears of submitting our future into His hands. How did I not realize He always held it? The work is demanding, requires sacrifice, and somedays is absolutely exhausting, but I would never go back! The blessing is immeasurable.

  5. sabrina says:

    What a great post! The whole thing. Lots of good advice for people entering SN adoption.

    Thank you for sharing about the Kimbles. I’ve been wondering how their girls were doing. It’s so BEAUTIFUL to see them with Katie and Verity. They look like they’re doing so great!

  6. Kimberly says:

    Thank you thank you. I see these pictures and just see beautiful little girls who are loved.  Loved the update on the Kimbles.  Still praying for them!

  7. Aunt Carol says:

    Oh, they are so precious!   When Jesus said, “Suffer the little children to come unto me”, He meant all children.  He sees them through the eyes of Him Who made them in His image.   If we could see them as God sees them, I believe there would be far more adoptions of these special little ones.  If only I were a lot younger…..

  8. Sharon Robbins says:

    After reading one of the above comments I realized there were PICTURES in this post.  I was reading so intently, for the first time ever, I didn’t look at pictures first and read the post second!  So powerful!  Working in an elementary school, I’ve had several opportunities to have the “retard” conversation with children.  I usually start with the question “When you called him/her a ‘retard’ were you paying them a compliment?”  This usually brings a smirk and a “no”.  That’s when I tell them about my children, that “retarded” is a real word that was used to describe a real condition (but not any more) and that when they use it to mean ‘stupid’ that’s what they are calling my children.  I tell them it hurts my heart to hear it because my children are so precious to me and not so different from these students.  We talk about what my children like to do and what things are hard for them.  These children are almost always contrite and loving and express their sorrow at using the word.  But what makes me feel the best is when I overhear them on the playground explain the same thing to a peer that uses the word.  We will make changes one person at a time…  

  9. Holly says:

    I am shy, Susanna, so I never know what to say.  I don’t know if I’ll make people uncomfortable by paying extra attention to their child with disabilities, so I’ll usually smile and try to engage the child – but maybe not the mom so much.  :)  Thanks for the thoughts and the advice.  :)

  10. cindy says:

    Thank you Susanna for being such a ‘voice’ to help guide the rest of us and to keep us posted on needs.  How I pray for such people and churches as you alluded to to get the message that you and your friends have to share.

  11. Kelly says:

    I have to say that when I came across your blog the first thing that caught my eye was Verity’s picture. My first thought was how beautiful she is. Then I saw Katie’s photo and thought that poor baby. I read through you blog and learned about your family. My heart broke for Katie. I came to your blog everyday for updates on Verity and Katie. I felt so much joy for your family on the day Katie was in your arms for good. Through your blog I have come to have a deep passion to adopt a DS baby. I get tears in my eyes every time I read updates on the girls. They are so sweet and so beautiful, You have been blessed with the most precious gift. God Bless you and your beautiful family. 

  12. Elizabeth says:

    “Oh my goodness, did you know you said that out loud?!” Has been my favorite response to ridiculous, hurtful comments for a long time. 

    I also wanted to say sometime in response to the question about adopting a child with an obvious physical difference and dealing with the public. We adopted a 9 year old girl with facial tumors and her appearance can be startling to people.  (Frankly, we just don’t even see it anymore.) One of my biggest concerns before coming home was how she would be treated when we were out in public.  I didn’t want her to be hurt. I have to say, I have been remarkably surprised. For the most part, everyone has either not paid any attention to us or been very gracious. For all the rest, I have decided that my job is to first protect my daughter and communicate that there is nothing wrong with her appearance and then deal with the offender.  The response you shared is one I use and is very helpful. 

    And your girls are too cute!  My children and I always enjoy when there are new pictures of Verity and Katie… you just can’t have too much cute. 

  13. Anna T says:

    Dear Susanna,  Thank you so very much for sharing your adoption story last evening with our local group!  I learned some new things and I’m continuing to pray for you and for Tommy’s forever family.  I am currently reading “Kisses from Katie” and parts of the book have reminded me of you and your blog story.  Enjoy your day with your precious family!  ((Hugs)), prayers and love,  Anna

  14. Amanda says:

    Dear Susanna, I think this post is beautiful and everyone should read it.  I appreciate learning how to interact with families who have children with visible disabilities.  I have never approached any of the families I have seen, partly because I’m not very outgoing, and partly because I don’t want to intrude.  But I have always tried to smile at them and their children.  My family is currently adoption two children internationally who have fairly major medical needs, but only one is likely to be visible to other people.  Our future daughter is severely delayed and malnourished in addition to the medical problems she was born with.  I hope that I am able to be as gracious and Christlike as you are.  Since we have been building our family through adoption we are a multi-racial family already and have had a lot of very strange comments made to us by people in the grocery store.   It is so hard as a mommy to think that someone could say things about your child.

  15. Missy says:

    What did Stephanie say after that man made the “retards” comment? Did she say anything? I am stunned. 

  16. Amy Dasher says:

    Wow! What an incredible post! I especially love your father’s response.

  17. Jan says:

    Susanna,
    I would like to assert that a person does not always mean or intend to devalue children with down syndrome when he or she uses phrases like “downs child” or “they had a down syndrome baby.” I have observed people who have lovingly raised and treasured children with down syndrome use without thinking some of the insensitive and impolite language that seems to gather around these precious little ones. While I always feel awkward and disturbed to hear it, and try to encourage people to speak otherwise, I also think it’s important to remember that sometimes in ignorance we are thoughtless! Thank you for having patience with those of us who are still learning. We do not necessarily lack love, but
    only education and courteous habits.

    Tommy is continually in my prayers. His picture is on my desktop, and I see it every day when I log into my computer. Thanks for keeping him at the fore-front of our minds!
    Sincerely,
    Jan

  18. Susanna says:

    Jan, thank you for writing. You are exactly right, and I know that everyone who uses the wrong terminology about Katie and Verity has nothing but loving intentions. They are my dearest friends and relations and I love them and they love our two little girls. That’s why I very rarely address the issue, even en masse, although it comes up frequently. I did blog about it once, very gingerly, about two years ago: http://theblessingofverity.com/2010/06/cluing-you-in/

    Although the issue comes up regularly, I’d rather keep kind and loving people as friends than offend them by attempting to educate them about the correct terminology. (And that’s saying a lot, because unfortunately, I’m a picky teacher-type, and notice things like poor vocabulary choices even when I don’t want to! Haha! So I hear the poor choice of words many times a week, but mention it about once a year! I’ve only spoken about it to one person face-to-face, and that was the person who said, “…it was a Down syndrome.”)

    P.S. I hate to defend myself, because it is so very obnoxiously icky, but if any of my dearest friends and relations read your comment, I want to hasten to reassure them that I know they love our girls and even if they don’t, I love them anyway!!

  19. Barb says:

    As a brain tumor survivor who lives with a disability everyday, I’ve had my share of rude and thougtless comments. It is hard to handle as an adult, I can’t imagine hearing them about my child. Susanna, you have a way with words and thought that is very calming. Thank you for continuing to educate us everyday.

  20. Kenna says:

    What an awesome post!!!!  You say it beautifully!!
    That said.. I can’t get over the difference in size between Katie & Verity!  AMAZING.  Verity looks positively tiny now!  And Katie’s smile just lights up every photo.  Such a delight to see the two of them!

    I think Katie is the true hero here.  She is the one who had the guts to survive! 

  21. Holly F. says:

    I think I may have to number my comments because there is so much I want to say and I’m afraid I will forget some of it or my comment will seem a mess otherwise.

    1.  Shame on that man!  His implication that only those children that are not “retards” are more worthy of adoption is so sickening to me and completely un-Christ-like.  And what kind of adult still calls children “retards”??  I hope your friend found a way to make him ashamed of himself without causing drama within the church. 

    2.  I do still think of you as a hero Susanna.  Not because I believe Katie could only be loved by a hero but because you didn’t shy away from adopting a child with severe medical needs.  As you have mentioned before, she is not the sum of her health needs, but as a mom of a child with Ds that almost did not survive his first year of life, I recall the anxiety and desperation so easily.  The smell of a hospital can trigger powerful emotions for me.  If my husband ever does agree to adopt, I’m not sure I could willfully consider children with severe medical needs.  But then again, if the child meant to be mine has severe medical needs, it is not my place to refuse. 

    Your hero status for me is also how far you have taken your adoption of Katie to rescue so many others like her.  You remind me of Andrea (founder of RR) in that you are like a mom to many orphans.  You could have brought Katie home and been done with Pleven.  You continue to fight.

    3.  I used to be a person that smiled at a mom of a child with special needs but did not interact with the child or the mom.  I smiled then looked away.  After having Trent, children and adults with special needs draw me to them like a moth to a flame.    I find their “imperfections” the most beautiful of all. 

    4.  Trent’s birth led me to my current job as a Case Manager for Early Intervention for my state.  I’m so lucky to meet wonderful families with wonderful children.  I have noticed that my reaction to their child (especially newborns) sets the tone for their own reaction.  I always greet the child as warmly as the child and parent will allow, provide sincere compliments, and/or congratulations.  This lets the parent know that I see their child as a child first and that their child is precious like every other child.  

    (I realized later  on that I experienced this myself as a new mom to Trent.  The nurses that came in and told me how sweet he was and how much they just want to kiss his cheeks all day set the tone for me to stop grieving and see him as the baby he was.  The nurses that came in and apologized that I had a child with Ds set the tone for me to grieve some more.   My friends that didn’t want to hold him, either from ignorance or fear of hurting him, made me feel worse.  My friends that scooped him up and loved on him made me feel better.)

    5.  Due to those above experiences, when I am contacted by friends that have friends who just gave birth to a child with special needs and they want to know how to help, I tell them to first love on the baby and say congratulations.  It really makes a difference. 

    6.  The blanket is surely covered in cuteness!!!    

      

  22. Maria says:

    I didn’t read everyone’s replies so maybe someone already mentioned this but I think it is often just as hard to have a child who has invisible disabilities. One of our adopted sons suffers from FASD (Fetal Alcohol Spectrum Disorder) and drug addiction at birth. He looks just like any other 6 year old boy, in fact he’s particularly handsome with bleach blonde hair, bright red lips and the bluest eyes. 

    So when we walk through a store, or try to sit through a church service at a new church people are angry when they see his behavior. They aren’t just embarrassed by my child they are angry with him, and they are angry with me. This little boy doesn’t look disabled so when he hums loudly during prayers, we get angry stares. When he gets angry and starts to kick at me and scream, passerbys think that he is not well trained, that he just needs more discipline.

    And instead of getting to share the story of this child’s life because people are wondering or confused, I put out angry fires by saying “I’m so sorry, he’s disabled.” So, then we’re all embarrassed. 

    I’m not sure what I wanted to say but when you said it’s Katie’s obvious issues that cause the most stares or avoidance I thought maybe I should share our story. The hidden disabilities are tricky to navigate, in public, too. 

  23. Kelly Mayr says:

    Susanna,
    You rock!  I love your posts!  It is amazing what people will say.  A friend once said to me “if I had a child like yours I wouldn’t have anymore.”   Hmmm rude!  But I do believe that people are usually not trying to be cruel.   My mother asked me if all my friends had kids with “issues.”  I said well a lot do because when I see a family with a child with special needs I walk towards them not the other way.
    You are doing an amazing job for all the kiddos you are raising and all the ones you are advocating for!
    We are still trying to move forward with adoption.  I will keep you posted 

  24. Jan says:

    Susanna,

    Thanks for your gracious reply. I recognized the conversation reference right away. For what it is worth, I did want you to know that the person who said that regretted phrasing it so before you even said anything. And I think that if you had been there for the hours after the baby came, observing the reassurance that this baby was beautiful and good and precious, seeing this baby being lavished with love and cuddles even while the parents were too shocked and horrified to hold it, until they were able to look at their child and say, “Perhaps this is not as bad as we first thought; perhaps this child too will be a treasure,” you might have felt slightly less outraged at the words used the next day. Your experienced input was much desired. :)

    Jan

  25. Susanna says:

    Jan, thank you so much for letting me know; you’re right, it is reassuring to hear this. That moment in time is a flashbulb moment, and the demeanor and words of the people surrounding the parents at that time is so crucial.

  26. Susanna says:

    Maria, it is so valuable to anyone who reads your comment to get this view from the inside; thank you.

  27. Rachel says:

    “Precious child, I love you.  I love you.”
    This is was so beautiful to me it brought tears to my eyes.  These are Jesus’ thoughts/words. 

  28. Jessica says:

    Thank you THANK YOU for the part on how to respond to someone’s child.  I am often guilty of minimal glances, always afraid I will be interpreted the wrong way.  I will remind my self to SMILE and comment as I would any other child!

  29. Sheri says:

    Just beautiful!! Thank you! I can tell you stories about 20 years of looks and behaviors we have encountered with my mom. Its the other end of the spectrum but no different. She had 2 ruptured brain anuerisms. She has a big ole dent in the side of her head and she uses a walker. When we are out people look to me to answer her questions. What would SHE like, etc. I usually just wait uncomfortably until they decide to ask her what she would like. A couple of times I have said, “She knows what she wants and in fact she’s buying today!” There is nothing wrong with her mind. She just isn’t perfect anymore. If someone had decided 20 years ago that her “quality of life” was not what they thought it should be our family would not be the same. She would not have met 4 of her 5 grandchildren and watched them grow up. She isn’t  the grandma to take the kids hiking but when one of my kids needs a little extra attention (spoiling) who do they call? My girls know that Mimi will listen and give good advice. They talk over card games and puzzles. She has traveled the country and she and my dad have taken the kids are great get-aways.
    As your kids grow up and have children of their own they are not going to see the differences in Katie and Verity they are going to see that they are their favorite aunts with whom they will have very special relationships with. Relationships that their parents and other aunts and uncles are not able to have with them because they are too busy with  “normal” adult activities!  I honestly think my mom is a better grandmother because of her brain injuries than she would have been if they had not happened. Yes, life is different, its better!!

  30. Tara says:

    Beautiful post! I, too, appreciate your graciousness toward people. You’re an awesome example! I wanted to comment about this:
    “Sometimes I wonder whether some who know our story think that special needs adoption is okay for our family because we didn’t have much to lose anyway. But why would anyone ask them to give up their great life or social status to care for a disabled child? It’s one thing to make the best of an unfortunate situation, they may think, but to deliberately choose it would be insane.”

    I actually felt some measure of relief when I realized this. I had been worrying and wondering if we’re just nuts for what we’re doing (adopting an unknown child with Ds from Serbia). When I realized that it is so counter cultural, even in the church, to pursue difficulty, I felt better knowing that, to most, we ARE nuts! :) Christians are better at receiving difficulties, I think. When “bad” things happen, we have the foundation to reframe them rather quickly, but we still buy into the lie that comfort and ease should be pursued and are the goal. We so rarely choose to suffer with Christ.   
     

  31. Tara says:

    Oh, and I really feel the need to hear the rest of the story about the the “gentleman” speaking. How in the world did your friend follow that?!?

  32. Hannah says:

    I always come back to this post to read about that one, dear woman’s reaction to precious Katie. “Precious child, I love you. I love you.” It moves me to joyous tears every time.

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