Look Ma, no…

May 8, 2012 at 6:20 AM by Susanna

 

 

…tape on my face!

 

 

 

…more tape changes at least daily because of disgusting, loose tape peeling off near my nose!

 

 

 

 

…tube in my nose and throat!  Or having to put it back in after I pulled it out!

 

 

 

 

…more syringes and tube flushes and Press and Seal on the port end!

 

 

 

 

…need for you to put my milk into a tube to get it to my belly, because I can drink!!!   Okay, so it takes me just under an hour to drink eight ounces, but that’s down from almost two hours so I’m getting faster, and I know you don’t care how long it takes, because…

 

 

 

 

…best of all…

 

 

 

 

No need for a g-tube!  Hallelujah!!!

 

 

 

 

 

 

P. S.  I think maybe the only reason you can’t hear my mama whooping and hollering from where you live is that she has laryngitis!

 

 

 

 

 

 

 

 

 

 

 

 

get pregnant fastdiet to have a baby girl How do get pregnant youngest couple to have a babyman having baby

Open eyes, open hearts, open homes

May 4, 2012 at 3:45 PM by Susanna

“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

 

 

 

Update on Pleven!

May 3, 2012 at 6:26 PM by Susanna

The following update is copied from the blog of Shelley Bedford:

 

Two weeks ago, there was a big meeting in Sofia with the Vice Minister of Health, representatives from the Child Protection Agency and a whole lot of other people, including representatives from various Bulgarian NGOs. The meeting’s purpose was to develop a plan for improving the conditions at the orphanage in Pleven and to see who (what organizations) could do what RIGHT NOW to help the children of Pleven and meet their current needs.

The Vice Minister of Health was pleasantly surprised to hear how much money has been raised so far to meet the medical needs of the children at Pleven (The fund is currently at $36,000).

Earlier this week, the official proposal was released. As expected, the 2 projects we are advocating for are on the list and “officially assigned” to be done.

So, we continue to need your help!!!!!

Here are the 2 tasks we are trying to complete as part of the efforts to reform the conditions and level of care the children at Pleven receive and how you can help:

1.) One Heart Bulgaria will be employing 2 nurses full time to work on the 6th floor, where the children with the most severe special needs live. These nurses will be trained by Prof. Lilova and will have the responsibility to ensure that the children are properly fed and that all medical needs are addressed.

We are raising the funds to cover the salary and training of these 2 nurses for a minimum of one year. Initially, the goal was to fund more nurses for less time. But, after the inspection of the orphanage and the findings there, it was determined that the greatest need is for well trained supervised nurses on the 6th floor. To date, this project has raised over $6,000, with a projected need of $10, 815.
To donate to this project, you can make an online donation using the chip in at the bottom of this post or you can send a check with the designation, “Pleven nurse fund” on it to:

One Heart Bulgaria
561 N. 150 W.
Centerville, UT 84014 USA

All donations made by check or through the chip in are tax deductible through One Heart Bulgaria.

2.) Through a partnership with Tokuda Hospital in Sofia, Dreams Foundation (in Bulgaria) and Eli Project (in the US) have established a medical fund to provide surgeries and other medical care above what is covered by Bulgaria’s national health insurance to the children at Pleven.

The money raised through this effort will fund the medical treatment and cover the transportation costs to get the children from the orphanage in Pleven to the hospital in Sofia. Tokuda Hospital will in no way profit from this partnership, as Prof. Lilova and the hospital have volunteered their services for the children at Pleven. Per the agreement with the hospital, detailed expense reports on each child that receives care will be provided so that every dollar donated to this account is accounted for. Updates on the care provided and the number of children benefiting from this fund will be shared.

The first child to have surgery covered under this fund will receive his surgery TOMORROW! He’ll be having an eye lens implant done. The surgery is covered under the Bulgarian health plan, but the lenses are not. So, the Pleven Medical Fund will cover the cost of the lenses so that this little boy can SEE! Six children have already received evaluations and basic feeding care and those expenses will be paid as well.

Currently, the medical fund has received $36,000 in donations.

As fabulous as this is, more is needed.

I wish that I could say that only a few children need extensive medical care, but the reality is that there are many many children that need treatment and procedures to improve their health.

Donations to the medical fund can be made via the chip in below or directly through Eli Project on their specific page for the Pleven Medical Fund Project, which is located here. All donations are tax deductible through Eli Project.

Several people have asked about donating Pediasure, clothes, toys and other items to the orphanage in Pleven. One of the things revealed in the investigation is that over $300,000 worth of donations are “missing”. Donations and funds were mismanaged by those previously entrusted with the care of the children.

All donations made to any orphanage in Bulgaria should be legally documented in writing, which wasn’t happening at Pleven.

IT IS NOW.

Pediasure, formula, food items and medications (including things like diaper rash cream) all have strict guidelines on what can and can not be accepted. That is why, at this time, we are NOT asking for these types of donations. There are organizations going in and providing food and diapers and such. These things need to be bought in Bulgaria.

We are currently trying to determine if there is a way to get specialized formula that is not able to be purchased in Bulgaria in for the children who need it. There is a legal process that must be followed in order for that to be done and we’ll update as soon as we have information on that. There are also families traveling to adopt children from Pleven that are taking donations to purchase diapers and other items once they are in Bulgaria, so that the donations can be legally documented. One Heart Bulgaria is also accepting donations to provide diapers and food to the orphanage in Pleven. They have a provider in Bulgaria that provides diapers at a discounted price. People wishing to donate for food and diapers can do so through this link, and specify that the money is for “food and diapers for Pleven”. We are thankful that there are many organizations stepping in to meet the day to day needs of ALL the children at Pleven.

If you’d like to help the children with medical needs and those with the most severe special needs, please consider a donation to one of the 2 above mentioned projects. Both projects are being supported by US non-profit organizations for accountability and so that all donations are tax deductible to donors.

[Note from Susanna:  There are Chip-in buttons over on the sidebar for both projects.  Please pass the word along.  This is literally life-saving help!]

The next update on Pleven will be about all the children benefiting from these efforts!

PRAY. SHARE. GIVE.

~Shelley Bedford