she says they’re insane, but I say they ROCK

So we have some great friends in this life. Tamara & Jason are among them. We met back in the late ‘90’s when our hubbies were attending seminary in Fort Worth. We were carefree… with good jobs, a love for coffee, and no kids between us. We played often, laughed hard, took trips and lived out a fantastic friendship during these years.

After school, the Lord took them one direction and us another. But the ties that bind us remain unbroken and when my phone rang a few months ago, from Missouri, I thought… “I only know one family there…”

Tamara was one the other end and after the usual “Girl! How in the world are you???” stuff…she just began to open up about what the Lord was doing. I was really surprised, desperately happy and a little bit in awe.

They were adopting! That’s always music to my ears!

But here’s the kicker.

Several years ago, during a particularly difficult time in their ministry, Jason and Tamara had traveled to see us. They ended up staying the weekend with our family at my parents’ home. They needed refuge and respite. I’m not sure they got either! But we loved having them here and sometimes laughter truly is the best medicine.

At one point, their toddler son, Zach, was attempting to walk up my parents’ staircase. Tamara mentioned to me that they was concerned about him…that they actually had several concerns.

And they were completely founded.

Enter Duchenne Muscular Dystrophy.

We’ve watched them from afar raise their son with grace and prayerful parenting. We’ve begged God on their behalf and have grown in our love for them as we see the effects this devastating disease has had on their precious son.

We recently had dinner with Jason when he was in town for a ministry conference. He spoke a lot about Zach, DMD and their life…and their adoption. It got me to thinking, maybe some of you need to know Tamara. Maybe you need to hear from her. Maybe THIS is what No Hands But Ours is really about on some level.

So I wrote to her and asked for her help. I sent over several questions that I thought readers here may benefit from hearing the answers to. As always, this great friend of mine didn’t disappoint.


Tell me about your day to day. What does life look like with Zach?
Zach lost ambulation almost two years ago. He uses a powerchair fulltime. We use a hoyer lift for all transfers. We have a van with a built-in ramp. He is completely dependent on Jason and I to get dressed, get in and out of bed, use the bathroom, shower, etc. His arms are still strong enough for eating, brushing his teeth, using his laptop, etc. When we tuck him in at night, since he is lying flat, we have to physically pick up his arms and put them around our neck in order for him to hug us. (sorry, that is so sad but it is true…)

What is your hardest struggle?
Our greatest struggle is watching the devastation of this disease and being helpless to do anything about it. Others have compared it to your child being stuck on the tracks and a train is barreling down and there is nothing you can do to throw him off the tracks. The physical burden of caring for Zach is nothing compared to this. Most days are okay, some days it seems like this disease is devouring him.

What is your greatest triumph?
Our greatest triumph is that Zach has the best attitude and perspective on all of this. He has said out loud that he does not know why God allowed him to have this disease but He must have a good reason. He seems wise beyond his years and understands that God does not always give us the answers and that is okay. We can trust Him anyway.

Tell me about your adoption…
International adoption has always been a possibility for us. We always planned on having three or four biological kids and then adopting. After Zach’s diagnosis and my diagnosis as a carrier, we decided against having any more biological children. We often wondered how adoption would ever fit into our story. Caring for Zach is a full time job that requires so much of us, physically and emotionally. We had sort of put adoption out of our minds.

Then this picture of an orphaned little boy with Duchenne came across our path. We both felt that God had uniquely blessed us with everything we needed to care for this child. We have an accessible home, we have an accessible van, we have good health insurance, we have access to excellent doctors in St. Louis. How could we not share these blessings with this new child? How can we leave him there, knowing that he is going thru the same awful disease as Zach but without a mommy and daddy? We can take care of him, we can show him the love of a family and most importantly, we can introduce him to Jesus.

Since there is no cure for DMD, and knowing what you know as a parent of a child with this disease, how did you come to the decision to choose to adopt a child with the same need?
We felt that if not us, NO ONE may want him. How many families really want a child that cannot be “fixed.” Not terribly many. And that was too much to bear. We HAD to take action. We know that our adopting him will not save his physical life. There is no cure for this. But we can make his life better.

What do you want to say to other parents who are considering a similar situation or an adoption like this?
Don’t do it.! Just kidding. I don’t have a good answer for this.

What have you learned about yourself though this?
That we are insane.

Is this a risk? Aren’t you putting yourself in a nearly impossible position? {I only asked this because it is what so many are thinking. Tamara knows my heart, and our history in choosing a child with CHD after losing one to it in China. There is absolutely NO JUDGMENT intended from me in this question.}
Yes, this is a great risk. We are willfully opening our hearts to this child knowing that we will most likely outlive him. And he will most likely be the second child we will have to bury. But, we believe the eternal benefits outweigh the temporal. That in the end, when we are all with God in eternity, whatever sacrifices we made on earth will be worth it (Romans 8:18). And if our behavior is going to match our theology, we made the only choice we could. To obey God’s call to go get this boy.

Don’t you just love her!?! Don’t you want to reach through your screen and hug her neck and say, “YES!!!” Because no adoption is without loss and pain and heartache. But so many times, we as parents can make a devastating choice to let go of the expectation to play it safe {we’ve played it safe in adoption too…so again, no judgment whatsoever!}, to embrace the risk and the heartache and to LOVE a child that seemingly no one else is willing to love.

As she stated here, Tamara told me on the phone that morning that she knew that outside of an accident or some crazy unexpected circumstance…she would outlive both of her sons. She said to me, with a strength I don’t possess, “I know I’m likely going to bury them both, Kam. But what else am I to do?” She went on to ask me several times over the course of an hour {and a few times since then}…”Do you think we’re insane? This seems crazy.” And in the next breath she’d say, “But we know it’s right.”

I don’t know about you, but I love this kind of “insane.” I’m drawn to this kind of “crazy.” It seems to me that a little over 2000 years ago some pretty smart people were calling Jesus those very same things.

So, Tamara, my dear friend…you’re in excellent company.

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{In case you’re unfamiliar with DMD}

About Duchenne (from Parent Project Muscular Dystrophy)

Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.

Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.

it’s different

One of my friends recently shared on Facebook that she was struggling with being newly home with her second Chinese son.  She received so many encouraging comments, it was beautiful!  But she also received a hurtful comment implying that parenting biological and adopted children is exactly the same, and she should roll with the punches because everyone else had been through the same things with their new children.  Although I know this could be true in some cases, I also know that parenting adopted children is sometimes very different.

Of course, each child is unique and different.  There is no one-size-fits-all status for any child, biological or adopted.  But as a parent of both biological and adopted children, I see the differences, especially when they first become part of your family.  Parenting a new child who may have been institutionalized for the first part of their life – who may not have had someone to meet their needs consistently, who may not have been loved or told how precious they are, who may have been neglected and/or abused – can be very challenging and delicate compared to parenting a child who was loved and had his/her needs met consistently from the beginning.  While I know that biological children can also offer significant challenges, institutionalization introduces a number of issues not typically common with biological children.  Children who have been institutionalized can be traumatized, hurt, and delayed.  Children generally lose one month of development and linear growth for every three months they are institutionalized.  Our children often come to us with behaviors learned to survive.  We usually do not share most of those behaviors with others to protect our hurting children.

Teaching them that they have parents who love them unconditionally and will meet their needs often takes a lot of intentionality and time.  This may include not letting anyone hold our children or help with any basic needs until he/she is firmly attached and bonded to us as their new parents.  As much as we may want and desperately need the help that is very naturally accepted when we bring biological newborns home, we oftentimes hold off with adopted children because we know it’s best for our children.  There may not have been a consistent caregiver in their past.  They may have depended on only themselves to survive.  Survive is defined as “to continue to live or exist, in spite of danger or hardship.”  Survival is the most basic human instinct that children shouldn’t have to worry about.  If consistency is lacking, our children may think they can only depend on themselves.  Oftentimes the only way to teach them that mama and daddy will always be there for them is to be the only people to meet their needs.  It can be exhausting and isolating.

Add in the fact that you are parenting a new toddler (or older child in many cases) with a very clear personality for the first time … the road can be much harder and may look a lot different than parenting biological children.  Throw in a the possibility of a language barrier, institutional delays, weekly therapies, and medical special needs … it all just compounds how difficult adoptive parenting can be.  It may be easy to look at the beautiful airport homecoming pictures and new family portraits and think the family is filled with love and everything is perfect.  The truth is the family is filled with love and it is very beautiful indeed, but things are not always perfect.  Fortunately we are filled up daily with His perfect love and that shines through.  It is only from the Father that we have the strength in those first few months (or sometimes years).  Only He makes beauty from ashes and has the ability to redeem the brokenness of adoption.  His beauty and truth always shine through.

nicole

I do not think everyone should feel sorry for anyone or adoptive parents deserve a big pat on the back.  We all mess up daily (often minute by minute) just like every other parent on the planet and need Jesus desperately!  I write it only to offer a different perspective and to hopefully share that parenting biological and adopted children can be very different. It’s hard to understand for most people who haven’t parented children from hard places. I get that.  But when adoptive parents are struggling through something tough and are asking for support and prayer, it may not always be the normal everyday parenting stuff.  Of course, it is ALL worth it. Totally worth it. Biological or adopted, it doesn’t matter – every bit of it is worth it. Every child who we have the privilege of parenting here on earth is precious and unique. We get such a special opportunity to borrow them for a bit from the Father to train them up!  It is surely beautiful and we are overwhelmed with love.  Our children are gifts from the Lord and it is our privilege to parent them.



little white one

They call her “little white one” and the name suits. She’s a pretty little thing and can flit about like a little pixie at times, her snowy white head bobbing here and there, her cold wet bottom peeping out of quilted pink split-pants.

She’s a little singing fairy at times, but usually… she’s crying.

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When we first started working with this particular CWI, “Little White One” was a seemingly normal, happy child, but by our second visit two weeks later she was already looking more like an orphan.

What does an orphan look like? For one, they have nearly no concept of being treasured. They seek affirmation, affection and love from anyone who looks available and then as time goes by and they realize that nobody has time for just them they either shut down or go crazy. Sometimes they do both. Eventually, maybe, they develop a new normal and learn how to cope with not enough. Some of them just wither up, others become favorites and get “spoiled” which is (almost) the exact same as being “loved” in a family. And some little ones, like Little White One, hang desperately onto their innate need to be loved and fight for it, savoring each miniscule victory.

Someone held her today. Keep fighting.

No on wants to pick her up. Cry.

She was spoken to gently. Fight harder.

They snapped at her. Get in the way again.

Someone handed her a toy. Fight. Fight. Fight.

The other kids bullied her. Run to nanny even if she can’t do anything about it.

Someone put her on their lap and kept her there. Keep fighting.

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It’s a battle, and one that each of us working on the ground in orphanages need to be aware of, and actively engage in.

“The most terrible poverty is loneliness, and the feeling of being unloved.”

― Mother Teresa



Yes, No, Maybe*

Neatly laid out in Times New Roman in alphabetical order are a list of labels, special needs, what China calls diseases.

Albinism…Anal atresia…Cerebral palsy…Cleft lip/cleft palate…Club foot…Congenital heart disease…Delayed development…Down syndrome…Hemofacial macrosomia…Hemangioma…Microtia…Syndactyly…

Some of them you’ve heard of. Others you struggle to pronounce, and you wonder if they’re even in English. Little “x”s in columns with a ball-point pen seemingly have the power to determine the rest of your life.

Yes.

No.

Maybe.

Every adoption agency’s going to make you do it. And, even if it wasn’t inevitable to the adoption process, it’s important to think through. Are you willing and able to walk a child through multiple surgeries? Does your insurance company cover serial casting? speech therapy? prosthesis? hearing aids? Do you live close to specialists? Can you afford to travel if you don’t? Do you feel uncomfortable about physical differences that will invite even more questions? You have to have the conversations, as uncomfortable as they are, even though they make you squirm in your seat.

But, there’s something very important you have to remember—real life children who don’t lay neatly on a page in alphabetical order.

KangMing6He hates bananas and loves to dance.

MeiNuo8Don’t even try to take a cracker out of this one’s hands.

YaLi4She likes to ride behind a buddy on a plasma car.

XiaoYue8She’s pretty serious except when you tickle her and blow air in her face.

They may be listed in an orderly fashion by name, birth date, and disease on a database that your social worker can easily sort. But, do not be deceived by the order of it all. Every child listed there is very much a four-dimensional child who is way more than a special need.

Let your YESes be YESes. And, do not be afraid to let your NOs be NOs. But, maybe, just maybe, there should be more MAYBEs than anything else with a very un-neat * disclaimer handwritten on the bottom that says something like this—

*We do not necessarily feel called to parent a child with this diagnosis assigned to him or her. But, we are not comfortable closing the door on the possibility that He may call us to a particular child and that that child may come with this label. So, unless you hear differently from us while we wait, consider this a MAYBE because we’re holding this whole process in our hands loosely with hearts not only willing but desiring only to do that which He’s called us to do.

Feel free to blame me if your social worker has a mini panic attack. I can take it.



Upheld

We are connected, you and I. Our stories different, our kids’ needs unique, but I’m guessing we’re on a similar trek.

Is your family being refined and blessed by a medical needs child? Yep, mine too.

Are you worn out, and a bit fragile? Uh, huh.

Feeling deep gratitude for the care of friends and family, but somehow just a bit alone? Yes.

Your new journey intensely hard, but profoundly beautiful? With ya.

Worry that you are burdening friends with too much medical talk? Same here.

God is writing such stories with our families. We face heart defects, vision & hearing loss, blood disorders, cerebral palsy, kidney disease, deficiencies and syndromes. Some of us said yes to conditions pre-adoption, and others received diagnoses post adoption. Some have one condition and others have multiple. We are living in different states and our syringes administering different meds, but each of our hearts carry the weight of parenting a child with medical needs.

Connections have been made through Instagram, agencies and adoption events. We share stories and have quicker than customary, intimate conversations. We cheer each other on, pray, grieve, and follow along; carrying each other’s burdens in a tiny way.

Much of our experience is shared:
We are worn out.
Our planes touched down on US soil, and it was game on.
Some test results have rocked us, and others have driven us to our knees in thanks to a great Healer.
Our faith is both depleted and intensified.
Some days we are hopeful, and others, full of fear.
Nurse, advocate, and momma are the hats we wear.
At dinners with friends, we zone out during talk about TV shows or vacations.
We are on our knees more than ever, but have missed lots of Sunday services.
The little bodies we care for carry surgical scars, and we ponder how their hearts will process it all.
Our calendar boxes are filled with doctor appointments, surgeries, therapies and tests.
Our marriages are stronger, but stretched thin.
We need only five minutes to know if a doctor is going to be the advocate we seek.
Late nights are spent researching and typing questions to mentor mommas in FB groups.
We’ll travel long distances for the best doctor.
IVs are dreaded.
Strength is found in the faces of our little people, and we lean in for the lessons.
Weekly, we coordinate babysitters, not for date nights, but appointments.
Ice cream is spooned up post doctor visits, because we must celebrate as we go. 


We know the ins and outs of our insurance policies, deductibles and medical caps.
Our medical needs child has siblings, and we wonder if they are getting enough attention.
Still, we are in awe of the profound work being done in the hearts of those siblings, as they soften with a deeper kind of love.
Our mailboxes usually hold at least one medical bill.
Our kids need to be catheterized, dilated and medicated. They need therapy, glasses, wheelchairs, blood transfusions, cochlear implants, casts and ostomy bags. They’ve had MRIs, echocardiograms, X-rays, scans and blood draws.


rebecca

We are different, but the same. Many of us are FB, blog or adoption group friends. I read of your surgeries, and stop to pray, checking back later for an update. I grieve over hard test results. I celebrate with you when your child rolls out of a hospital in a red wagon with balloons. I’m humbled that you do the same for our family.

God has given us the blessing of this sisterhood, and calls us to “consider how we may spur one another on” (Hebrews 10:24). So be spurred on, friend, knowing that you are not alone.

I can’t be with you in the waiting room, or sit with you on your bathroom floor as you give a high volume enema, but I can pray. I can give you the name of a neurosurgeon and offer advice. I can tell you that your family is a light in this world, and is making much of God. I can tell you that I see such hard won beauty rising in you. The roots of your faith are deepening, and I’m challenged to dig deeper too. Most importantly, let me remind you that Isaiah 41:10 promises that each of us is upheld.

Do not fear, for I am with you; do not be dismayed, for I am your God.
 I will strengthen you and help you; I will uphold you with my righteous right hand. – Isaiah 41:10


Dear sister, you are also the daughter of a Most High God, and He upholds us. Dictionary.com tells us that to uphold means to defend, raise, support, lift upward and keep from sinking. Um, yes, please.

So, as much as we medical adoptive mommas “get” each other, as much as we hold each other up, let’s lean most deeply in, as daughters, to God who is with us. His hands are so much stronger than ours. Let’s find rest first in He who promises strength and help. Let’s give Him whatever hard thing is penciled in next on our calendars. While at it, give Him the bills, the antibiotics and the therapy sessions.

Mentors and encouragers are a gift as we traverse this path, but ultimately this is bigger than you and I, or even you and your child. It’s about Him and us. Let’s let the needs of our little people draw us to God.

Be spurred on, sisters, knowing that we walk together. Pray for my family, and I’ll pray for yours?

Take your next step with brave faith, daughters, knowing your Father is actively keeping your family from sinking. You are fully and perfectly upheld.



four more ways to raise funds for your adoption

When I talk to most people, their number one roadblock to adoption is MONEY, and I am so thankful to be invited to share a second blog post about funding your adoption. You can read the first post with fundraiser ideas HERE.

After becoming more and more involved in the adoption community, I have seen family after family begin their adoption journey without the necessary funds. Then, through grants, fundraisers, extra jobs, and frugality, they have every penny they need to bring their children home. One woman wrote me and said:

“There was only one time we doubted [that we would have enough money] near the beginning. We had a payment due and didn’t have enough. I started to really doubt. The very next day a check for the EXACT AMOUNT we lacked was in our mailbox with a note that said “God prompted me to give you this amount at this time.” They had no way of knowing! Totally God. He funds what He favors!”

Moreways

We can read story after story in the Bible about how God provided when His people were in need. Why do we believe that He would stand by without blessing us – without helping us – if we follow His command to care for the orphan? When we step out in faith, God provides! Experiencing that first hand has helped me believe it all the more.

When we made the decision to adopt, we cancelled our contract to buy 4 acres of land and build a house that we had designed ourselves. This gave us $25,000 at the start of our adoption process. My husband’s employer reimburses $5,000 of adoption expenses, so we asked people to sponsor puzzle pieces in order to raise $5,000. We would then take the reimbursed money from Ryan’s work and pay it forward to another adoptive family. In 9 days, our friends, family, and coworkers donated $5,425. It still blows my mind! We can’t wait for God to show us where to pay forward that money. We also held a garage sale for 3 days with many of our own items but also dozens and dozens of donations from other families. This sale resulted in just over $1,000.

We knew that bringing Tucker home would cost more than $31,000. Just as I was beginning to wonder how we would find the rest of our funds, I got an email from my friend who said that her husband wanted to raise money for our family during his 100 mile race. I was blown away!! These friends gave us $6,000 of the donations to fully fund the rest of our adoption, and with the remaining $5,000, they gave $1,000 to five different families who were also adopting. God provided for our family through a combination of our own financial decisions and the generosity of so many friends, family members, strangers, and coworkers. When God leads you to it, He will see you through it! To doubt that would make us just like the Israelites doubting God in the wilderness, Sarah and Abraham doubting that God would give them a son, and Gideon doubting that God would use him to defeat the Midianites.

Below you will find four different ways to help acquire the necessary funds to care for orphans through adoption: Adoption Tax Credit, Grants, Interest Free Loans, and Employee Assistance Programs.

1. ADOPTION TAX CREDIT:

For families who completed their adoptions in 2013, they might be eligible for the Adoption Tax Credit of a maximum of $12,970. Eligibility is dependent on your family’s tax liability. Your family might only be eligible for a portion of the Adoption Tax Credit the first year, but the remainder can carry forward through four additional years. For example, if you only are eligible for $7,000 the year following your adoption, the remaining $5,970 can be received in subsequent tax years. For more information, please view my post explaining how this credit works.

2. GRANTS:

Adopt Together - This nonprofit organization allows your family and friends to make tax deductible donations to your family, and then they will match or exceed the amount donated.

Hand in Hand - Tax deductible donations are made to this organization by your family, friends, coworkers, and strangers. Matching grants are then provided to adoptive families.

Lifesong - Matching grants ($1,000-$4,000) are provided to families adopting, and donations made by family, friends, coworkers, and strangers are tax deductible.

JSC Foundation - The amount of money awarded varies and is at the discretion of the foundation. I know one family that was given $10,000 by this incredible organization. Applications are due January 15, March 15, May 15, August 15, and October 15 of each year. Families are notified by the end of the following month.

Show Hope - This organization was founded by Steven and Mary Beth Chapman in honor of their daughter, who they adopted from China, but passed away tragically. The six application due dates are Feb 28th, April 30th, Jun 30th, Aug 31st, Oct 31st, Dec 31st. These grants are $4,000 on average.

Families Outreach - Families must be adopting through a nonprofit agency, have a completed home study, and have endorsement from their pastor.

Global Orphan Foundation - Applications are due June 1st and December 1st. Grants awarded up to $11,000 to aid families with adoption.

NAMB - This organization provides grants to pastors/families in ministry.

Chosen for Life - Their mission is to educate and engage the people of our local churches and communities on ways they can live in obedience to God’s command to visit orphans in their affliction in our neighborhood and around the world. They provide grants to families in the adoption process.

Salvation International - Applications are due April 1st and October 1st. Grants awarded range from $500-$5,000.

Rollstone Foundation - Aids with the adoption of children with special needs (FYI: Tucker is considered special needs). One family reported a grant of $2,000 from this great organization.

ABBA Fund - Your family, friends, coworkers, and strangers can make a tax deductible donation to ABBA fund, and then the money is awarded to your family at the end of your fundraiser.

Affording Adoption Foundation - Many grants are around $1,000.

Brittany’s Hope - Families are asked to raise half of the money granted to them.

A Child Waits - Grants up to $5,000 for people pursuing international adoption through a nonprofit agency.

Gift of Adoption Fund - Grants between $1,000-$7,500 for families who have completed their home study.

God’s Grace Adoption Ministry - Provides matching grants to families who are Christian, are a two parent family, and make less than $60,000 per year. A typical matching grant is $2,500.

Help Us Adopt - Provides up to $15,000 grants to families adopting. Applications are due in April and October.

Katelyn’s Fund - Provides grants for families making less than $100,000 per year.

National Adoption Foundation - Grants range from $500-$2,000.

Parenthood for Me - Grants range from $2,000-$5,000 for families who do NOT have any children.

Sea of Faces - Applications accepted in March, June, September, and December. Their goal is to provide three $1,000-$3,000 grants per quarter.

3. INTEREST FREE LOANS

Lifesong

ABBA Fund

Pathways for Little Feet

Forever Family Ministries

*Many people will use their Adoption Tax Credit money to pay off these loans immediately.

4. EMPLOYEE ASSISTANCE

Check to see if your employer provides a benefit (like my husband’s company) for adoptive families. Holt has published an extensive list here. This is an amazing benefit for employees!

At the end of the day…

Money cannot be the reason that these children stay in orphanages.

Money cannot be the reason children with treatable medical conditions do not survive.

Money cannot be the reason that children do not get to experience the love of a family.

It is my sincere hope that this post gives you hope that resources are available to help families bring these precious children home. Don’t let the fear of money hold you back from experiencing one of the amazing gifts you will ever receive.

amy


Amy Abell My Passionate Balance

Created Perfectly

Today, 3/21, is World Down Syndrome Day! (Get it? 3-21? Trisomy 21!) A day intentionally set aside to be aware of and to embrace the overwhelming BLESSING that is Down syndrome.

Down syndrome is indeed a spectrum of special needs; some children & adults with Down syndrome are much more medically, developmentally & emotionally affected than others, but I believe DS has been wrongly labeled a disability. In fact, the more I learn about my son the more I realize that it is I that have the ‘disability’.

Isaac’s ‘genetic aberation’ allows him to see and feel and interact with people in a way that I will never be able to do; I have been crippled by selfishness, pride, ignorance & social morays. If he sees someone who is hurting, he simply hugs them. It doesn’t matter if we are in the middle of Costco, that person needs a hug! And not just any person… THAT person. Sadly, it wouldn’t even cross my mind to minister to a stranger that way, especially while shopping for fifty pounds of hamburger. What crushes my ignorant heart is to see that stranger just melt in the short little arms of my sweet boy. They needed that hug deeply. They were starving for the hands of my Lord to physically touch them and He did… through my child with Down syndrome. Isaac pats them on the back and looks them straight in the eyes as if to say, “it’s going to be alright, you’ll see. Me and Jesus love you!”

It’s true, Jesus does love them and my son just loved on them. Do I love that stranger? I mean, really love them, like I know Jesus does… like I’ve been asked to by my Loving Creator? Like my son in his ‘disability’ seems to do so easily? The truth is no. I’m the one with the disability, and now with fifty pounds of hamburger.

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Down syndrome is not a disease. It is not a health hazard. It is not a disability. It is an extra chromosome of love placed PERFECTLY by our Heavenly Father with intention and purpose.

Today is a day the entire world stops to acknowledge that very fact. What could we learn by letting go of our selfish, ignorant, crippled hearts and really loved like our friends with Down syndrome do? Would we love like Jesus? Would we be overwhelmed by the joy of the Lord like my son is? I can guarantee it’ll make your trips to Costco more interesting!

You can see some precious children with Down syndrome who are currently waiting for their forever family here, here and here.

“Let me give you a new command: Love one another. In the same way I loved you, you love one another. This is how everyone will recognize that you are my disciples — when they see the love you have for each other.” – John 13:35 MSG

For more information regarding World Down Syndrome Day events in your neighborhood, please visit the World Down Syndrome Day website here.



what we’re reading: links

From the last few weeks, 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 love to hear about it…

To share a blog post or news article go here.
To share your blog with our readers, as a soon-to-be traveling to China family go here.

Around the Blog World:

Did you know that boys outnumber girls on the shared list, 5 to 1? Andrea at Home is Where the Heart Is shares transparently about her initial preference for adopting a girl instead of a boy from China… and how she feels now, two little boys later.

On Brain Child, Avra Wing, mom to a teenaged daughter from China, reminisces on the surprising and unexpected effects of a return trip to China.

Our own Amy recently experienced one of her worst fears – her daughter Grace was hospitalized with pneumonia. And here she shares the rest of the story.

Six weeks after bringing home daughter Kaili from China, mom Jodi shares her thoughts on special needs adoption on the America World blog.

Rebecca at The Sweet Life follows up her first homeschooling post (found here) with this post about homeschooling Pre-K. Great ideas for encouraging learning between toddlerhood and kindergarten.

Johanna from Stop and Smell the Flowers writes about their word for the year – and how it has affected their adoption journey.

On Forty Days, find forty days worth of Chinese orphan charities to help, support and fund.

In the news:

News anchor in Dallas is surprised by the on-camera visit of the formerly orphaned teen for whom she helped find a forever family five years before. Have a tissue.

Down Syndrome: A Year of Grief and Joy – a mom looks back at all that has changed since she first discovered the little boy she was carrying had Down syndrome.

‘Baby hatch’ in Guangzhou closes – unable to care for any more than the 262 babies with special needs and/or illnesses that have been abandoned since it opened in late January.

Read something inspiring lately? Informative? Encouraging? Share the link HERE.

Traveling Families:

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Alisa at A Family4Him with her family – now grown by one adorable little guy

In China now, or just home with their child…

NowHere – our very own Carrie!
A Family for Him
Shouts of Joy
A Mother’s Love
Polkadots on the Windshield
We Are Coming for Chu
His Plan. Our Joy.
Seeing Double
2 Red Threads
The Oasis – Adopting HIS Children

Getting close to travel for your little one in China? Share the link HERE.

P.S. A special thank you to everyone who submitted recommendations for What We’re Reading this week.


Six Pills a Day: A Cure for My Ignorance Regarding HIV

Mike is dad to six. Two of his children, adopted from China, have HIV. Today he shares from-the-heart about their journey. You can read a previous post he shared here.

Growing up in the Midwest in the 80s, my picture of HIV was framed by after-school specials, the evening news, and MTV. I had never met anyone with HIV or AIDS, and its only real impact on my life was that I used extra toilet paper on the seat of public toilets.

In my naïve picture of the world, HIV was something that happened to other people. It happened to people who made bad choices. It happened to people who lived far away in scary places like San Francisco and New York where a lot of those bad choices were made. (I cannot imagine how much toilet paper I would have consumed on a class trip to one of those cities…)

There were only two exceptions to my simplistic view of HIV – People who got HIV from a blood transfusion and kids in Africa who got it from their parents. Those two groups were more likely to receive my pity than my self-righteous judgment. (Have I been clear enough that I was both ignorant and a jerk?)

With this as background, you can imagine my surprise in 2013 when my wife called me at work to talk about our pending adoption from China. Anne and I had four kids at the time – two “tummy babies” and two “airplane babies” from China, and we had recently decided that we could muster the love and capacity to add one more child to our family.

With our paperwork fully filed, we were in position to review the profiles of available special needs kids. Our first two adopted kids live with hearing loss, so I assumed that the third would as well. You can imagine my surprise when Anne said that we had NOT been called about a child with hearing problems. Oh no. Her three-word description remains as one of the most shocking phrases I have ever heard – “Twins with HIV.”

I could write a book about everything that went through my mind in the next few moments. I think I laughed out loud when she said it. That’s how ridiculous it seemed to me. I literally could not decide which half of the equation scared me more… TWINS or HIV. I just knew with absolute certainty that neither of those were going to work…

Three months later, we arrived in Changsha to meet Sam and Ellie… my twins with HIV. When I consider how much I love them today, I cannot imagine that it was ever an option NOT to adopt them. (God’s plans are not our own; they are far, far better. To quote CS Lewis… “He’s not safe, but he’s good.”)

Our healthy, bright, hilarious and much-loved Ellie and Sammy, celebrating their first Christmas at home. My mind cannot reconcile the fact that they would be considered the lowest of the low in many parts of the world today.

Our healthy, bright, hilarious and much-loved Ellie and Sammy, celebrating their first Christmas at home. My mind cannot reconcile the fact that they would be considered the lowest of the low in many parts of the world today.

 
That was one year ago today. And in that year, I have worried about a lot of things relative to Sam and Ellie. I have worried about the tremendous losses that they have already had to face. I have worried about how old they really are and when to send them to Kindergarten. Sometimes on the same day as my kindergarten worries, I have worried about how I am going to pay for their college. A surprisingly common worry is precipitated by the question, “Does anyone know where Sammy is?”

One thing I have not worried a lot about is HIV. The primary reason for this is a miracle of modern medicine called Antiretroviral Therapy. Sam and Ellie each take 3 medicines in the morning and the same 3 pills again at night, and those six pills a day literally keep my children alive.

I should note that this life-saving cocktail of drugs only exists because of the courage, perseverance, and sacrifice of those same people I was so quick to judge in my youth. Those communities which faced the HIV/AIDS epidemic in the 80s and 90s bravely fought uphill for the acknowledgement, funding, and research necessary to fight this terrible disease. Many of them lost their lives during the pursuit of the drugs which now keep Sam and Ellie alive. It would be difficult to overstate the respect and gratitude I now feel toward the HIV/AIDS community.

You see, my 1980’s picture of HIV is as outdated as my pleated pants from that same decade. (I have become more informed on HIV. My pants remain a problem.) Some of the things I now know:

How HIV is Spread (or not) – HIV cannot be transmitted through casual contact – this includes hugging, sharing snacks and drinks, diapering, or even the dreaded toilet seat. The virus is only present in blood and sexual fluids/breast milk. Since none of our family members or friends plan to have sex or exchange needles with Sam and Ellie, we are not at risk. We “glove up” and use a few extra Band-Aids when they fall off their scooters and have bloody knees, but that is more because of their love for the printed Dora or Buzz Lightyear than protection from the virus, which cannot survive outside of the body. (The 8 of us do go through a shocking amount of toilet paper, but none of it is used to cover the seat at home.)

Day-to-Day Life with HIV – My children are not defined by their HIV status. They have to take their medicine each day. They visit our wonderful Infectious Disease team at Cincinnati Children’s Hospital quarterly to draw blood for viral load and immune system monitoring. Because of the drug therapy, the level of the virus in my kids’ blood is so low that it is considered ”undetectable,” and their immune systems have been within or above normal ranges during each of their five visits so far. A slew of illnesses have passed through our family since the kids’ arrival, and Sam and Ellie have recovered at the very same rate as our other kids. Some HIV patients experience side effects from the meds, but we have been blessed by a lack of any issues to date. Aware that the medications can be very expensive, we braced for a serious hit to our budget upon Sammy and Ellie’s arrival, but we were pleasantly surprised by the availability of generics, and we are thankful, as always, for great insurance. For both kids, our after-insurance cost is around $150 per month at the pharmacy and about the same for each round of labs.

The Long-term Prognosis – With proper treatment, people living with HIV have normal life expectancies and they can expect to live normal lives, including marriage and parenting healthy children. Our specialist has genuine hope to be out of a job in the next 10-20 years when she believes a cure will be available.

How Others Will React – Importantly, we have been warned that “HIV stigma” would be one of the most difficult aspects of parenting kids with the virus, especially in light of our choice not to assert privacy rights. After one year with Ellie and Sam home, we have not experienced any of the negative reactions that were anticipating. Everyone we’ve encountered has been positive, interested in learning, and so loving to our kids. We were prepared to lose relationships – potentially a lot of relationships – but we have experienced nothing but open arms eager to welcome our kids home. We know that others have not been so fortunate and also know that the challenges may shift in nature as the kids get older, but our experiences to date have been almost universally positive.

As hopeful as I want this article to be, it is essential to highlight that there are kids just like ours who are dying from HIV and AIDS every day, almost always because they don’t have access to the medicines Ellie and Sammy casually throw back with their Cheerios in the morning and in their PJs at bedtime. A significant percentage of the orphans in the world today are kids who acquired the virus during birth and lost their parent(s) to AIDS.

Our family today

Our family today

 
In the face of so much ignorance and misinformation, that may be the only area where I have been consistently right in my understanding of HIV. There are a lot of kids in far away places who have it. Kids who will die… and die alone… from HIV if they don’t get the help and hope we have the power to give them. Kids in desperate need of a mom, a dad, and six pills a day.

Rescue the perishing; don’t hesitate to step in and help. Psalm 24:25

Waiting Children

Wilma

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Wilma is six years old and described as a sweet and smart little girl. She is gentle, optimistic, and is able to find joy in many places. The nannies say that her happy laughter makes others smile. She gets sick a lot and usually has a cough. She has just started kindergarten and enjoys school. She is listed with Lifeline. For more information or to review her file, please email Lifeline.

Zeb

Zeb

Zeb is almost thirteen and is from Southern China. He is waiting on the shared list and is HIV positive. Zeb has a provincial accent, can express his needs, but can not pronounce clearly. He likes playing with other children when he was in institute, knows to share food and toys; he is popular with caretakers and children. He gets along well others, respect teachers and get along well with classmates in school. He is a good kid who is praised by parents and teachers.

Daniel Update: my family has found me!

Daniel5

Daniel was born in February of 2006. Daniel’s birth mother was tested HIV antibody positive. Right after she gave birth to Daniel, she disappeared from the hospital and left Daniel at the ward. Because the birth mother was tested positive in HIV antibody test, Daniel’s HIV antibody was suspected to be positive at the age of one month. The doctors suggested doing another HIV test one year later. Daniel also had a hemangioma on his arm. Daniel was admitted into the CWI in April of 2006. He has received loving care from the staff members at the CWI. The HIV test done after he turned one was negative. In May of 2009 the hemangioma on his arm was broken and needed surgery. The surgery was successful. Now there is a scar on his arm. Daniel is active, energetic and affectionate. He likes playing with other children and is good at expressing himself. He can speak fluently and likes dancing. He is helpful with younger children at the CWI and knows how to share. Daniel is looking forward to having a loving home of his own. He is listed with BAAS.

You can view Daniel’s videos via youtube here and here.

Jack

Jack

Jack is a sweet 8 year old who is HIV positive. At 6 years old, Jack was described as active and “naughty,” liking to play. He attends school and can prepare his bag and clothes every day. He is said to obey the traffic rules and cares for his little foster sister. Jack is also stated to like making friends and playing with friends. He is said to be able to finish his homework carefully and is independent. His file states that he can put on his clothes, go to the bath, brush his teeth, wash his face and make the bed. He is also said to like to talk, to draw and to do math homework! Apparently wonderful Jack has a “pet phrase.” It is, “I am a little tiger!” So cute! Jack is listed with Lifeline. For more info or to review his file, please email Annie.

Resources for prospective parents:
HIV Adoption Yahoo Group
Project Hopeful

For more information on beginning the adoption journey, please contact the Advocacy Team.

Wonder

My daughter and I reclined comfortably together at a park yesterday, beside a calm lake in which Chinese men, bent with age, stood stirring the water around their boats with long oars. A thousand Chinese faces passed us by, upturned at the sunny sky and squinting at their beloved kites in the wind. Some of the kites were fighting it, dipping and wobbling, wrapping around the tops of trees. But some of the kites positively soared, as if their strings didn’t exist at all.

This is where we live. My daughter’s birth family might be only miles from us for all we know. And yet we’ll never know, for she was laid on a street corner in a box when she 6-days old, give or take. Sometimes I look at the faces around us, and I wonder “Could any of these people be her people? Is that lady in the red sweater her mother’s cousin, who moved from the village to the city to get married? Is that one her father’s brother, a migrant worker, living in a shanty beside the construction site, working his fingernails off in order to send a small amount of money home to his wife?”

And then I look at my daughter, with her soft brown cheeks bitten red by the March winds, and her bright eyes dancing from kite to kite, and I feel so connected to her that I could cry. In all this big world, she and I came together, mother and daughter. We are an island in a sea of relatives, and because of reasons we will never know, we are related now, too, in the most wonderful way imaginable.

Adoption.

Take part in the miracle if you can. It will leave you in wonder for the rest of your life.

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