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Stay the course. Help is on the way.

April 27, 2017 0 Comments


In an article posted by on orangeblogs.com it’s noted that 90% of people with special needs do not attend church. A study concluded in 2014 shows that 1 in 6 people in the US have a diagnosed special need. That means for my small city of 160,000 people there are roughly 26,000 with a diagnosed special need. That’s a lot of people who need to know there’s a church prepared to love them, invest in them, work to understand them, to nurture them, and to lead them.

They’re not showing up because they don’t feel welcome.
They don’t feel welcome because we’re not prepared.
And we’re not prepared because as an organization, we don’t get it.
We don’t truly get the need.

If 90% of people with special needs don’t come to church, we’ve lost a huge opportunity to tell them God made them… perfectly, God loves them… tirelessly, and Jesus wants to be their friend… forever. And for many, this also impacts parents, siblings, sometimes grandparents, aunts, uncles… Ninety percent of people with special needs aren’t showing up, but if you’re the parent of a person with special needs, you’re probably not showing up either. You probably didn’t get much sleep the night before. Maybe you tried church before but couldn’t stop wondering if your child would actually be cared for or simply managed until the service is over. You constantly worry, “Are they a distraction? Too noisy?” All these roadblocks keep families away as we electively neglect them.

Until we change some things, these families (maybe you’re one of them) will not come back. We don’t get to tell them the truths about God if they’re not here. But they won’t be here if we’ve not prepared for them. They might come once. Maybe twice. Maybe even a third time if they’re liberally optimistic. But 90% won’t stick around past that if we aren’t making strides to be prepared for them.

If you can relate to any of these figures or experiences, you’re not alone. Even though you probably feel very alone. Unfortunately, sometimes it comes with the territory.

I’m a staff pastor at our church. As an organization, we’ve not done our best work caring for families with special needs. But as the actual living, breathing, hands and feet of Christ’s body, our church has been amazing. Let me explain this a bit… The federally recognized 501(c)3 organization of the church has policies, budgets, benchmarks, etc., just like every other non-profit or business in the world. The ground-level care for individual families falls outside the scope of how this particular organization has chosen to operate.

Take it as you will. Maybe it upsets you. Maybe you’re in favor of it. That’s another discussion. Either way you look at it, I think we can all agree that in order for the Church to thrive it must be more than a legal organization. It must be made of people, carrying out the life of Christ to the marginalized (Eph 4:12). And it’s in this way our church has shone like stars in the sky.

When we brought our babies home, people made us meals, took our other kids out for play dates, cleaned our house, did some laundry; the gritty stuff of life. This stuff wasn’t mandated by any policy and procedures manual. It doesn’t fit into a systemized process. This is a good and pure work; unfettered. It allows for a response moldable to the need. But when it comes to Sundays inside a corporate setting, many of these policies often cripple the church’s ability to care for families like mine.

Yes, this is heartbreaking. And no, I don’t think this is okay to continue.

But as of this moment, the organization we call church has no plans in place for how to offer real, valuable care to families of children with special needs. Personally, for our family, we have come to the sad, painful, heartbreaking understanding that our church as an organization is a place where it’s still hard, because as an organization we just don’t get it yet. We don’t get the unique situations families with special needs face. Often standardizations and policies are what get in the way.

This all sounds pretty discouraging. And if you go into it with certain expectations on your church, it can be when your expectations are unmet. So where does this leave us? Well, first I’d love to invite you to join me me in praying for changes in our churches where a special needs ministry is as common as having a worship team or a choir. But if your church doesn’t have one yet, don’t give up. I believe there are ways to communicate value and honor to people and families with special needs outside of established organizational procedures and still act in alignment with the mission of your church.



First, to my adoptive families:

Don’t be discouraged or defeated if your pastor or staff members don’t seem interested or able to launch a special needs ministry. There will be the temptation to demand one. From my experience, that doesn’t get you very far. I am certain there are people in your church who are eager to care for your needs, just like there have been in ours.

To adoptive families and anyone who loves adoptive families:

Here are some simple, practical things to consider…

It can be difficult, if not downright impossible sometimes, to attend church if your child has a special need. But someone is probably already in your world who loves you and your children.

Watch and see. One of them is going to volunteer to be your child’s buddy.

Community can be hard, too. And on top of that, families are spending so much money on specialist visits, gas to and from, increased grocery bills and medical expenses, that trying to secure and pay for childcare or daycare so they can attend a MOPS or MDO or daytime bible study can break the budget real quick.

But I’m confident there’s somebody in your circle who’s going to step up and offer to cover the cost of childcare so you don’t have to miss out on the community you so desperately will need.

And when you haven’t been able to get away one-on-one with your spouse in years, someone will respond to the prompting of the Holy Spirit and will cover your expenses and handle all the details for a weekend getaway.

Here’s why. Because when you feel invisible, God hasn’t lost sight of you. He knows right where you are. And while the organization of the church probably won’t be able to meet your needs, the people who give the church its life are called and perfectly equipped for this moment and these situations to meet you right where you are and to carry you through.



Adoption is hard work. It’s the long game. But it’s not a work to be done alone. Help is on the way. Jesus said it simply, “There’s work to be done; more work than workers. Pray to the Lord for workers,” (Luke 10). I’ve seen it over and over again, when we pray God responds by prompting the hearts of His people to act. The workers are out there.

And now more than ever, I’m fully confident our God who calls you to follow his lead in serving the margins, in caring for orphans, in the work of adoption; He has all the resources you need stored up, just waiting to rain them down on you.
RandallNHBOSig

 

All She Needed Was A Family

April 26, 2017 0 Comments

I saw a serious and sad little girl when I looked at her referral picture for the first time. My experience with referral photos told me that she had been through a lot in her short time here on earth. Her eyes reminded me of an old person who had known loneliness and sorrow. Her body language was of someone who felt hopeless.

My experience also told me that there was unlimited potential if given a chance.

The diagnosis for our daughter was serious: a spinal cord tumor called glioma that would continue to grow.

It took me a long time to say what it really was.

Cancer.

The tumor had already caused her to be paralyzed. We saw video of Josie walking, then limping and finally where she lost the ability to walk. The combination of cancer and life in a wheelchair is hard for any family to imagine. But for us, it was impossible to imagine that Josie would continue to live her life in an orphanage. No matter what medical conditions or disabilities she had, her life would be infinitely better in a loving family.



We did our best to bring Josie home quickly and consulted with leading neuro-oncologists about her tumors. Thankfully, we had many medical reports to share, and we could prepare ourselves for a range of outcomes.

All our children were willing to support their new sister if she had to go through surgeries or chemotherapy at any time. We prepared the best we could, but there were still so many unknowns.

Would she be able to attach and bond with us after all she had gone through?
Would we have to admit that even the best medical care couldn’t help her?

These thoughts would always fade away as I looked at the first picture we saw. We would figure this out together, and she would always have us no matter what.

There was no way to predict what happened next. My husband flew to China to finalize Josie’s adoption and bring her home. He met an intelligent, talkative little girl who was eagerly waiting for her family to come for her. She knew our names and faces from a photo album we sent, and she was ready to begin her new life. All the people who met her couldn’t believe how excited she was and how much she understood about adoption.



She had seen other children leave the orphanage, and she was waiting for her special moment.

At home, Josie was learning new things each day. She wanted to learn English and with the help of a translator at the children’s hospital, she understood that we would do everything in our power to help her medically as well.



During the first appointments and procedures, old memories of surgeries came flooding in, but this time she didn’t have to be alone. Now, there was a Mommy and Daddy who would never leave her alone in the hospital again.

We waited anxiously as our team of doctors reviewed her past MRIs from China and now looked at a brand new one done here. The news was much better than we’d anticipated, and we were given so much hope – for a long life and a good quality of life. It would not be without surgeries or even chemotherapy, but it would be possible to live with the tumor.



There was no cure, at least not yet, and her paralysis was permanent. Armed with this new information, we decided to take every day as it came knowing that once the tumor began growing, we would fight to shrink it. And in between those days, we would give Josie the most full, normal life possible.

I could tell you what we did for Josie, but the better story is in what Josie has done for us.

She is a remarkable, intelligent little girl that has brought so much laughter and joy into our family. She is determined, imaginative and full of life. I am thankful that the labels and the sad picture didn’t scare us away. There was nothing to fear. She wasn’t her tumor or paralysis or any other diagnosis that was listed.



She was a little girl who just needed a family and a chance to fight her disease.

Today, she has both. And with that, there is hope and a future.

– guest post by Jenni

Find My Family: Bristol

April 26, 2017 0 Comments

Goodness gracious – just look at that smile.



Bristol was born in March 2015. She is a sensitive little girl and gazes at people when they talk to her. When her caregiver gently touches her on the head, she will call “mama” and smile.

Bristol is diagnosed with Down syndrome, and also had surgery for a heart defect in February 2016. As of October 2016 she can roll over easily, and hold herself up when lying on her stomach. When lying on her back she will grab her feet to roll around and play.

Her caregivers play a game with her throwing her pillow back and forth, and she smiles when they tease her. She started babbling at six months old, and at a year and half she could say “mama.” Her favorite toys are the ones that make music!



Bristol needs a caring family to help her grow and develop.

Bristol’s file is currently with WACAP. She has a $4,000 grant available for qualified families. For more information, email Ckids@wacap.org.

…………………..

A few resources or those considering adopting a child with Down syndrome:

An excellent Q and A post on Down syndrome adoption
A dad’s perspective on Down syndrome adoption
More posts on NHBO about Down syndrome
National Down Syndrome Adoption Network Facebook Page
China Adoption Special Needs Information Facebook Group
The National Down Syndrome Society website

Love Stories: What I Saw When I Stopped Searching

April 25, 2017 5 Comments

We are so quick to fill in the blanks, aren’t we? We get one part of a story, and we use our imagination to complete the rest. But it’s too simplistic to do that with the care of orphaned children halfway around the world… to see an image and create a tragic narrative, hear a …Read More

Love Stories: A Second Chance

April 24, 2017 2 Comments

We are so quick to fill in the blanks, aren’t we? We get one part of a story, and we use our imagination to complete the rest. But it’s too simplistic to do that with the care of orphaned children halfway around the world… to see an image and create a tragic narrative, hear a …Read More

Urgent Medical Need: Owen

April 24, 2017 1 Comments

Owen is a precious 9 year old boy who is currently living in an amazing foster home near Beijing. Owen quickly adjusted to his new foster home and reports that he likes it there. He has become a kind big brother to many of the younger children living there. He wishes to have a family …Read More

Find My Family: Francesca

April 23, 2017 0 Comments

Beautiful Francesca, born in November 2012, is a happy girl who warms up to people quickly. She enjoys playing with other children and dancing to music. Sometimes she pats her caregiver’s shoulder and gives her a kiss – usually because she wants to eat whatever food her caregiver has! Francesca is diagnosed with Down syndrome, …Read More

Severe Feeding Challenges: The Hardest Part

April 23, 2017 8 Comments

We started the adoption process in 2005, right before the big slowdown. We didn’t end up traveling until 2007, so I spent every free moment reading adoption stories and joining every adoption-related yahoo group out there. I felt as well-educated as one could possibly be. Unfortunately, there were only the “ladybugs and unicorns” stories out …Read More

Waiting for You: Shaw

April 22, 2017 1 Comments

Shaw is a precious three year old boy who waits for a family of his own. He is currently listed with WACAP with a $2,000 grant. He needs someone to help him put a smile on his sweet little face. Shaw’s primary special is transfusion dependent thalassemia. He also has some cardiac issues which may …Read More

Love Stories: Luo Mama

April 21, 2017 0 Comments

We are so quick to fill in the blanks, aren’t we? We get one part of a story, and we use our imagination to complete the rest. But it’s too simplistic to do that with the care of orphaned children halfway around the world… to see an image and create a tragic narrative, hear a …Read More

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