Open eyes, open hearts, open homes

May 4th, 2012

“If there be any reserve in my giving to Him who so loved that He gave His Dearest for me; if there be a secret “but” in my prayer, ‘Anything but that, Lord,’ then I know nothing of Calvary love.”  ~Amy Carmichael

 

Friends, could I ask a favor of you?

Please read the following list, and form a mental picture of the individual described:

~Has Down syndrome.

~Is ten years old and was officially assessed to be functioning overall as an eight-month-old.

~Is considered to have multiple disabilities.

~Has severe delays in all areas.

~Shows severe cognitive impairment.

~Suffers the damaging effects of severe, long-term neglect on every level.

~Demonstrates socially-inappropriate stimming behaviors typical of institutional autism.

~Has a tendency toward auto-aggression if she becomes very upset.

~Has difficulty regulating her emotions.

~Avoids making or maintaining eye contact.

~Is completely dependent on others for her care.

~Wears diapers; cannot take herself to the toilet.

~Cannot dress herself.

~Cannot stand or walk independently.

~Cannot crawl.

~Cannot feed herself.

~Swallows her food whole; cannot suck or chew.

~Takes all her liquids through a feeding tube.  <which she pulls out on a regular basis>

~Requires special nutritional formula.

~Requires special adaptive equipment, therapy tools, and orthotics for normal daily activities.

~Requires therapy.

~Is non-verbal with the exception of one word.

~Understands very little spoken language.

~Doesn’t play properly with toys.

~Has nystagmus and her eyes occasionally cross.

~Requires daily thyroid medication.

~Is recovering from severe, long-term protein-energy malnutrition.

~Has extremely fragile bones that require expensive medical treatment and special handling.

~Has a callous on the back of her head from lying in her bed for many years.

 

If you would read that list, and allow it to form your mental picture of the child it describes…

…would you ever come up with this?  This child who brings nothing but pure joy to our family’s life?

 

No?

 

Why not?

 

Honestly, I had to wrack my brain hard to think of all the most “scary” facts about Katie.  There are probably more I can’t remember right now.  It’s part of life, yes, but it doesn’t get much attention around here.

Why is that?

 

Why the huge divide between Katie’s list of problems and our everyday relationship with Katie? 

 

Aren’t all the facts on Katie’s list correct?  Cold, hard facts?

Then why aren’t they the most important facts about Katie?

 

If I listed all the most important facts about you, would you want it to be solely a list of your bad habits, health problems, struggles, and inabilities?

Why not?  Aren’t they the most important things to consider when summing you up and assigning you your overall worth?

Then what would you want to see on a list of facts about you?

 

What’s missing from Katie’s list of facts?  If I wrote them all here for you, it would amount to a Katie-update, and that isn’t the intent of this post.  But here are a few more facts about our sweet daughter, facts that we see and experience in our daily life with her.

These facts are what impact and constitute and determine our relationship with the person who is Katie.

 

These are the most important facts.

 

Her spunk and determination to learn.

Her sense of humor and love of teasing.

Her patience when I must place her NG tube for the fourth time that day.

Her sparkling sunshine smile and infectious giggles and peals of laughter.

Her pure joy in the most basic provisions of her life.

Her response to genuine love and affection.

 

Even deeper than those facts?

That when we look into her face, we are looking at a list of miracles that is way longer than her list of problems.

 

Why are these the most important facts?

 

Because, simply stated, Katie is not a list of problems.

 

And neither are sixteen children whose photos I first saw yesterday.

A comment from a reader motivated me to visit the page of children who were newly listed on Reece’s Rainbow.  As I scrolled down through the page…suddenly…their faces.

My heart was immediately transfixed.

And this post began to form.

 

The children were all born with Down syndrome, like Katie.  This isn’t some exotic mystery condition, friends, this is ordinary, garden-variety Down syndrome.  A known entity that is NOT cause to warehouse a human being in a little bed all their lives!

Some are very small for their age although they’re all age ten or over, like Katie.  Remember what we learned way back in the very beginning about what happens to children who don’t receive enough human contact?

All the children have been impacted by lifelong institutionalization through no fault of their own, like Katie.

They are human beings, like Katie.  The Katie who also had her hair clipped short, lived in her bed, and was rejected, neglected, untaught, unloved, and headed for a lonely death.

 

They are human beings, like Katie.  The Katie who is now healing, learning, changing, growing.

A Katie who is being thoroughly and unstintingly loved.

 

Please look at the faces of these children, and see beyond the dry, cracked skin and buzzed heads.  If someone shaved your head and took a mug shot of you, would people look at your photo and see the person you really are?

I struggle for the words to convey what I want you to see!  How I wish I could reach through the screen and share the glasses we have worn since receiving our Verity and our Katie.

Please, look at their faces and see what is most important to see.

 

They are not a list of problems.

 

Joy, turning fifteen years old this year, caged up in her tiny metal bed.  I picture her hand-in-hand with her mom in Target, picking out just the right girly outfits.  I picture her waking up to all that her new life has to offer her!

 

Hope, turning fifteen years old in July, also waiting for a family to set her free from her cage and help her become the person God created her to be.  My heart breaks to see what institutionalization has done to precious Hope.  I picture this calm child safely enfolded within a family who considers it a high privilege to give her what she has never had–total acceptance and tender care from loving parents!

 

Faith will be fifteen years old in November.  I picture this quiet girl with her hair grown out and cut in a cute style.  I picture her keeping up with an active family and embracing her new world with her whole heart!

 

Bartholomew will be fifteen years old in August.  I picture this sad boy out of his tiny crib!  What does he have to smile about now?  I picture him with the sparkle in his eyes that is put there by new life and love and hope and triumph!

 

Kirk will be fourteen years old in July.  I picture this guy in an active family, leaving the mindless boredom of the institution behind him forever.  A family who will give him plenty of opportunities to burn off energy in fun and appropriate ways!

 

What a precious personality shows in Charlie‘s photo!  Way more personality than we ever saw in our Katie-bird’s pathetic file photos!  Charlie will be fourteen years old in June.  I picture him bringing sunshine to his family, making all the extra work seem light!

 

Quiet, friendly Abilene, just turned fourteen years old.  How beautiful a smile would look on her face!  I picture her being welcomed into a family who loves to have her hanging around as they work, watching and learning and wanting to help!

 

Landen just turned thirteen years old.  I picture him in a skilled and experienced family that can surround him with unconditional love and acceptance and provide him with the therapy he needs.  I picture him in a baseball hat, bursting with life and potential!

 

Helena will turn thirteen in August, two months younger than our Laura.  I picture Helena in a family who sees past her list of issues to the precious human being she is.  I picture her with her hair grown all the way out, looking beautiful with a flower on her headband!

 

Dahl will be thirteen in November.  Look how thin he is and how small on his chair.  I picture this calm child in a nurturing family who will feed him well and help bring out the best in him!

 

Seth just turned thirteen.  For crying out loud, what is a thirteen-year-old boy doing in a little metal crib?  And he still has a light in his eyes!  What a survivor!  I picture this boy in a family who wants to help him catch up on all the things he’s been missing all his life!

 

Gabrielle, how my heart hurts for this almost-fourteen-year-old!  Sitting behind bars with her head shaved as if she’d been convicted of a felony!   I picture her being doted on by her dad and mom who are finally giving her the care she clearly hasn’t received.  And maybe chattering happily with some sisters while they dress her up and put bows in her hair!  Hair grows, friends!

 

Buddy turned ten years old last December, and looks ready to get out of that place and start living!  I picture him talking a mile a minute to his new family and friends and embracing life with gusto!

 

Stefan!  He’ll be turning sixteen in September and his last chance to escape the adult mental institution will be gone, unless a family looks at him and says “Yes” to God.  He looks to me like he could be Katie’s biological brother.  I picture him with some godly and patient men in his life to model and teach appropriate manly behavior as he enters his young adult years!

Jared will also turn sixteen this year, and if he isn’t adopted by then, he will have lost his last chance to leave the institution behind and know the love of a family.  Look how tiny he is on that couch!  You can look into his face and see his history, but I picture him in a family who wants to help turn his story into one of joy!

 

Trina, oh my heart weeps!  She also will turn sixteen this year, and is available for adoption for less than six more months!  I picture Trina in a family who sees her life as a miracle and takes joy in cooperating with God to make the rest of the miracle happen!

 

Did you watch the Serbia video and grieve for what you saw there?  Did it make you feel helpless?  By some miracle, here are children in a similar condition, available to be adopted!  What are we going to do about it?

Oh, how I pray that God would continue to wake up His people!  Shake us up, grow us up, open our eyes, break our hearts, and help us get over ourselves already!  Make us eager and fit for this task!

Special-needs adoption may not necessarily jive with our previous goals for our family.  But how vital it is for those who belong to Christ that we cling to Him rather than to our own visions for our families!  If we open our hands and let Him lead us, He will bring about something so much greater than we could possibly do by insisting that our life fit into the mold of our cherished ideas.  This is the crux of why many people close their minds to the idea of adopting children with special needs.  They know it would change the way they want their life to be.

Those who refuse to listen to God’s call are missing out on being at the counter-cultural cutting edge of what God is doing in the hearts of more and more of His people.  It’s time to embrace the value of the human beings that many in our culture would openly say are burdens that should never have been born.  Children who the world says would ruin a family photo or family vacation or family goals.

Let God-haters be the ones to send the message (and many do) that there is no room for people with special needs in our vision and goals for our lives!

Let God-haters be the ones to send the message (and many do) that we can’t figure out what use the world has for people with cognitive impairment!

Let God-haters be the ones to send the message (and many do) that people with severe disabilities are embarrassing and should be hidden away!

Let God-haters be the ones to send the message (and many do) that adoption is all about us keeping our lives beautiful and not messy!

May it never be that Christ’s people even come close to a hint of agreement with this ungodly stance!  Even agreement from silence or a reluctant attitude!

Is this special-needs adoption task challenging?  No question about it!

Does this task require superhuman superheroes?  No, no, a thousand times, no!  None of the ordinary, boots-on-the-ground adoptive families I know are superhuman or superheroes.  But what we all have in common is our willingness to sacrifice.

These children don’t need superheroes, they need parents with willing hearts and open homes.  Parents who gladly say yes!

YES!

We will make room for you in our vision for life!

YES!

We will make time for you in the busy-ness of our schedules!

YES!

We will make space for you in our home!

YES!

We will make a place for you in our family!

YES!

You are light-years more than a list of special needs!

YES!

I agree with God that your life is precious and I say it with my life as well as my mouth!

YES!

My heart is willing and my home is open!

YES!  YES!  YES!

 

 

 

Coming soon–Straight Talk II: Fear

 

 

 

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23 Responses to “Open eyes, open hearts, open homes”

  1. Grace says:

    Oh sweet Susanna, thank you. Thank you a million times for speaking what HE has put on your heart. The TRUTH! Amen.

  2. Laura says:

    When I saw the videos of Katie playing, I saw an adorable little girl full of laughter and energy. I didn’t really think about the fact she was developmentally younger than her actual age, I was just watching the adorable child play. I always admire cute babies and children in public places because I hope to adopt a child of my own when I finish my graduate studies. If I saw Katie in a public place, I’d be watching her because she is cute and playful, not due to her differences.

  3. Louisa says:

    I see the pictures of those poor children, and wish I were in a position to adopt one (at least), but I am a struggling single mother and wouldn’t be able to give them the care and attention they need.  It’s painful to see the pictures and not be able to help.

    By the way, I am also an unbeliever.  Up until now, I have read this blog with a great deal of enjoyment and respect, but today I find myself very hurt by what you said about those of us who do not practice the Christian faith.

    In my experience, there have been many people who are hard of heart and show no compassion, and a small handful who have actually shown me love, understanding, and acceptance, and have reached out their hands to me when I was struggling and made the difference to me.  You would probably say they were Christ-like.  

    Of that small handful, only two were Christians.  Of the other two who particularly stand out, one practices a very non-Christian religion, and the other has a strong distaste for all religion in general.

    I was raised very immersed in a conservative Christian background, and did not know many people outside that culture.  Now I have a lot of friends, from a broad spectrum of beliefs.  I have close friends who are conservative Christians.  I have close friends who are liberal atheists.  I feel like I am blessed to know so many different people, and it gives me a unique perspective on what makes people different and what makes them similar, despite politics and religion.

    My experience is that people are compassionate or cruel in equal ratios no matter what background they come from, or what beliefs they hold.  An atheist is no less likely to value a handicapped child than a Christian. A Christian is no more likely to help someone in need than an atheist.  People are people are people, no matter what they believe in.  

    I have no problem with how vocal you are about your beliefs.  I have a great respect for that, though I do not share those beliefs.  Even though I know you are just trying to inspire your fellow Christians to compassion, it hurts that you are doing it by making a false contrast to the supposed lack of compassion of “unbelievers.”  These are my friends, the people who have stood by me.  This is me.  We’re as human as you are.  We have hearts, too.  We are no different from you.  Please don’t hold us up as bad examples, or something you want Christians to be better than.

    Thank you for your otherwise inspirational words.  You are doing such good work for those poor, neglected children, and I will keep you in my mind and on my heart.  

    Please forgive me for bringing this up like this, but I simply had to stand up for my friends. 

  4. Susanna says:

    Louisa, no forgiveness is needed. I’m not standing against your compassionate friends in any way, and certainly don’t fault you for wanting to stand up for them in any case. :)

    I understood when I hit “publish” that my words could and probably would garner criticism from both sides. I’m afraid I must stand by the assertion that out of all those whom I’ve heard openly state offensive views about disabled people and special needs adoption (and that is who I was referring to in the above post), the rest of their worldview is also antithetical to a Christian one. Please hear what I’m saying. I did not say that there are no unbelievers who have compassion, or that the compassionate non-believers are in any way responsible for the offensive views of other non-believers, or that you or your compassionate friends must hold offensive views on disability.

    We learned very early on in our journey with Down syndrome that there are many otherwise educated, respectable people who calmly state these offensive views as plain common sense and think that people like our family are delusionary or worse. Not everyone sees this type of adoption as a good thing. The blunt reality is that some people see parents like us as bringing worthless financial drains into the country and think that it will mean less to go around for everyone else. Some people consider that allowing Verity into the world was a criminally selfish act on our part. And it is not the believers who are stating these things. You can probably guess how much credibility these views carry with us, and how worried we are about them. :)

    You can google for major news articles about ethical issues surrounding Down syndrome, and read the comments sections after the articles. People who hold the views we do about the value of people with disabilities and about special needs adoption are in a small minority.

    Parents who knowingly allow pre-born babies with Down syndrome to come into the world are in a small minority.

    You may be aware that there are people called “trolls” who determinedly target the blogs of those who are adopting children with special needs, and spew forth hateful lies on them. Nearly all the SN adoption bloggers I know have been targeted by these trolls. Within a few hours after I posted the good news about Laurel’s family, and included the link to their blog, Laurel’s family received a long and ugly comment, which they forwarded to me for my perusal and thoughts. Thankfully, they were ready for it and it didn’t move them an iota.

    Whether we like it or not, those with offensive views are in the majority and they are unbelievers. My statement to other believers was to let those people hold those views if they’re going to, but please don’t find yourself standing in their camp. My challenge, as you said, is to those who call themselves followers of Christ, to examine which camp they actually find themselves in when it comes down to their life decisions. If we claim to believe that people with special needs are valuable in the eyes of God, but turn away *when we have the ability to help,* what is it that we truly believe? And *in the practical outflow of our decisions* what is the difference between us and those who say that the children shouldn’t be allowed to live at all?

    Thank you for honestly sharing your thoughts, Louisa, and I hope I have helped to clarify mine. Thank you also for hurting with me for the children. If you were a believer, even the most financially impoverished one, I would encourage you to print out the children’s photos if at all possible, and hang them where they will remind you to pray that God would send them loving families. Because those of us with eyes to see Him can plainly see that God is the true Rescuer, and our hope for the children is pinned on Him.

  5. Juliana Keulen says:

    Hi Susanna, 
    Our family has been so blessed by your family’s testimony of obedience to the Lord and seeking to nurture the little ones that He places in your care.
    Our family is beginning a homestudy in order to Lord willing adopt an older boy. We have never had Health insurance due to wanting to be wise stewards of our money and trying to take care of our own needs vs. asking the government for money. I had a question regarding how it worked for your family to use Samaritan’s ministries and if there was anyone that we should contact about that.
    If you are able to reply back, that would be wonderful. I understand that you are extremely busy, and do not want to pull you away from needed time with your family.
    Thank you so much!
    ~ Juliana K.
     

  6. Louisa says:

    I am aware of trolls, and I am sorry that you have had to experience them. Unfortunately, trolls run rampant on blogs of all types.  I’ve even encountered Christian trolls, believe it or not.  They can be a pretty disgusting example of how to not show love.

    I just think it’s really something to be careful about – allowing your experience with a few to color the way you speak about an entire group.  I and many of my friends have had horrible experiences with individual Christians, some of which were just as cruel and heartless as the non-Christians who say your daughters should never have been born.  Experiences that were more than just words, even.  Some of my friends have even been physically assaulted, if you can believe that, by people who claim to be Christian.  I could be tempted to draw a line of demarcation myself, perhaps, maybe calling on non-Christians to not be self-righteous and judgmental, as so many Christians are.  But I do not make statements like that, because I know the few, precious Christians who actually act like the one they claim to follow, and know there are more like that out there, and such statements would be painful to them, and misleading to others.  There is so much divisiveness between Christian and non-Christian, anyway, which is sad.  I was raised to look askance at non-Christians, and almost saw them as subhuman, and certainly was taught bucketloads of erroneous assumptions about what they believe or feel or want.

    That is why I say, people say and do wonderful things, or awful things, inside and outside of Christianity.  The particular subject matter may differ, but the same love or meanness is behind it.  I am very sorry that you had to deal with the human capacity for meanness as it applies to some people’s view of your beautiful daughters.

    I’m sure there are more non-Christians than you realize who love and treasure those with disabilities.  It’s a sad fact that sometimes the least worthy sentiments are the ones most loudly vocalized.  Please don’t let a few nasty trolls, or sensational journalists, color your view of the rest of humanity.  Most of us do not hold those views.

    And I may not be one to pray, but I do know that the desire of my heart is that each of these children finds love and a home, and I think that counts for something.  If what you believe is true, maybe God takes desires like mine and treats them like prayers – perhaps I can be like one of those who did not say “Lord, Lord” but who cared for the vulnerable, and received their reward.  At any rate, if I can do something, I will, and I will spread the news to anyone I know who might be receptive.  I think, if love is the one great commandment, and the true defining factor of the children of God, then you and I and my non-believer or other-believer friends are more akin than you may think.

  7. thankyou for sharing these pictures and for pricking our consciences – I am not in a position to adopt due to hubby’s long term illness but I can and do pray and advocate and donate when I can – this will be going straight on my twitter feed and Facebook page.  Godbless and give Katie and Verity a kiss from me

  8. Susanna says:

    Juliana, emailing you…

    Louisa, again, thank you for your comments. I’ve tweaked a few spots to make my meaning more clear. Thank you!

    Grace, thank YOU for living it out. LOVE YOU!

    Laura, thank you! The world needs more people like you in it! :)
    Catherine, thank you more than words can say for helping to spread the word! Bless you!

  9. Valerie says:

    Perfect message again! Word for word, as if spoken by God himself. 
     

  10. Michelle says:

    Thank you for your post. Thank you not being shy to share the truth. Thank you for the awareness you give to all who read your blog! I am always convicted, encouraged and motivated when I read and I always look forward to your next post!

  11. Awesome, wonderful, amazing post. May His people rise up!

  12. Keely says:

    Susanna, I so appreciate your blog. Thank you so much for taking time to write for the benefit of others. You work hard, you bring to light the rewards of telling God yes, you are always so forthcoming, and I learn so much from reading your posts.
    I do not want to burden your time but would you forward me any information you have about Samaritan helping cover costs of ongoing care for adopted children with special needs, that you sent your other reader above with a similar question? I understood that they did not cover pre-
    existing conditions, so I must have misunderstood. This would be of great interest to us.
    I also just want to let Louisa know that the last paragraph of your second comment made me cry, and personally, I do think God hears your heart’s longings for these kids, whatever your beliefs are at this time about Him,
    and that your hurting for the helpless has meaning for Him, for whatever that is worth.

  13. Holly F. says:

    Interesting discussion here today.  I believe in the idea of collective consciousness and that our thoughts, whether Christian in nature or not, can be counted as prayers in its own way. 

    In my opinion, caring, feeling sorrow, and wishing for better for these children is prayer…to a God, to Christ, to Gods, or to the Universe.  Sounds very new agey and probably makes many of you cringe but an Atheist that donates time and/or money to these children is as beautiful to me as a Christian that does the same thing.  But I get what you are saying Susanna, it more likely that a Christian will act because their religion calls them to do it, and the obligation is there.

    Regarding the rest of the post, I struggle when looking at the pictures to see beyond the shaved heads and sores, but I’m getting better at it.  If only my husband…  

  14. Susanna says:

    Keely, emailing you…

  15. sabrina says:

    Great post, Susanna. I love the title. God has and will certainly continue to use beautiful Katie to show what He can do if people leave their lives open to Him.

  16. Tami Ann Swaim says:

    ~Thank you Susanna for sharing your “glasses!~
    May these precious children be brought into homes where they will be loved and all those who stand by and witness such miracles be blessed by the truth of God’s love for all man kind.
    Truth.  It is a blessing to those who seek it and life to those who find it. 
    “We have a right to believe whatever we want, but not everything we believe is right.” Ravi Zacharias
    “I am the way the truth and the life no man comes unto the Father except by me.” Jesus the Christ in John 14:6
    “For God so Love the world that He gave His only son that whosoever believes in Him will not perish but have everlasting life.” John 3:16
     
    “Having predestined us unto the adoption of children by Jesus Christ to himself, according to the good pleasure of his will…”  Ephesians 1:5

  17. Denise says:

    Hi Susanna

    Could you email me the name of the HS agency you mentioned Saturday?   Jason is going to call and talk to ARS and see what is the situation there and I’d like to have a back up.

    Please pray— Jason I think is really ready and wanting  to commit to a little girl on RR– but we still do not have the funds.  He is considering a 401k loan….. to help get us started– but I KNOW GOD can WORK– and I am praying so.

    The “mental attacks” have begun– Saturday evening I was so upset thinking maybe our family wasn’t ready, or  prepared enough or good enough and plain couldn’t do this– but Jason really stepped up and said– YES we can– if you were pregnant with a child with this “problem” we would handle it and love that child– the same as we will when we adopt one.   I was so thankful for his reassurance…..

    I am so thankful for your blog– and I cannot tell you how many times I have read your blog title in so many blogs– your “small drop” has a VERY VERY BIG RIPPLE effect!!!  GOD BLESS YOU!!!  (and your family!!)

  18. Susanna says:

    Emailing you, Denise! YOU bless my life, friend!

  19. Debbie says:

    Rabbi Meir says, “Don’t look at the container, but look at what’s inside. One can have a new container that is filled with old wine, or an old container that does not have even new wine.”  Ethics of the Fathers, Chapter 4:27
    Susanna, thank you for amending your original words.  While I understood the emotions that motivated them, they still made me feel excluded.  There are many who are “God haters” in all religions of the world, as well as many who are not.
    Jewish people read the Torah (old testament) in a cycle throughout the year.  In this week’s Torah portion, we read that we are commanded to care for the orphan and the widow.  We are told  to be “kadosh”, a word that is often translated as “holy”, because that is the way God is.  I think that one can emulate God’s holiness through our actions, and that the holiness of being able to see the basic truths – that children deserve families, that people do not get to judge who is worthy of life and who is not, that there are more important things in this world than consumer goods – crosses over the boundaries of religious beliefs.  Your passion for this cause is humbling; thank you for your powerful words and images.

  20. Susanna says:

    I saw the email from her future mom before I saw this comment! Praising GOD!!!!!!

  21. Hermione says:

    Louisa, thank you for saying what I was also thinking, and saying it better than I would have been able to.
    And Susanna, thank you for taking the time to respond to Louisa’s comments and change your post. As an agnostic, I also felt a little hurt by your original words – even though I knew you didn’t mean them like that. :)
    Stories like yours and Katie’s (and thinking of what would have happened to my brother if we’d have been born just a little further east…) make me wish I was in a position to adopt one of these children… but being single and working hard just to make ends meet, it’ll be a while yet until I have the financial means and family support needed to raise any child, let alone adopt one with special needs. :(
    I may not pray, but I’m definitely thinking good thoughts for them, and if there is any higher power in the world, then I hope It will watch over these children and help them find a loving home.

  22. Thomas R Boroughs says:

    I love your family!

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