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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How To Find Your Child!

At least, this is how we found our children!

We started with prayer. Prayers for strength, perseverance, guidance, grace and for the child that HE was leading us too. Once we felt God’s presence we proceeded.

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This is a good place to start! The NHBO site is filled with information on different special needs, parenting in adoption and current waiting children. Start by looking at all the other posts on this blog! You will see pictures of children along with a little bit of information on each child. This site has so much information on it! Take it all in, educate yourself and be proactive.

This is how we started- we knew our child was out there so we felt led to search for her/ him. Many times we both agreed- that’s her or that’s him but sometimes we had to step back and pray over it. We had to wait for God to move our hearts.

The children on the NHBO site are listed with different agencies. Most likely, if you find a waiting child on an agency list they will want you to adopt that child through their agency. Of course I have my favorite agencies but then so do others and the good news is my favorites are different from others- meaning so many of the agencies are wonderful! There are occasions when an agency has had the file for over 6 months and they are willing to transfer the file to the agency you are working with.

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The next step is to join this yahoo group: advocateforwc-subscribe@yahoogroups.com. They continuously advocate for the waiting children in China. They answer adoption-related questions and they are extremely helpful! This group is so active you may have to sign up for the daily digest! We have found a few of our children through this advocating group! We are so thankful for that!

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Next you will want to check out Rainbow kids. This website has pages and pages of waiting children from many different countries and agencies! They also have articles on different special needs that you may or may not be considering. It is very informative!

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At this point I would start making a list of special needs that would work for your family. Sometimes the names of the special needs seem rather confusing and the information on the internet can be overwhelming but once again pray over it and look for God’s guidance. Sometime the actual need of the child is not as serious as it sounds.

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The first time we adopted, our list of acceptable special needs was very short. After the first adoption, I couldn’t fill that list out any more. Our agency would say to me “we need your list,” “we need your list” and I just wouldn’t fill it out… I couldn’t… What if I did and missed our child because I was afraid to include a certain special need?

I will tell you right now we never intended to adopt a child with
Cognitive delays
Cognitive disabilities
Imperforate anus and a colostomy
HIV
Cataracts
An older child
An incontinent child

Thankfully GOD intended us to do all of this and we have been blessed because of it!

Unlike me you should still fill out the list of acceptable special needs. But with time other special needs may feel more comfortable to you. Giving your agency this completed list will help them find a child that may be a fit for your family.

Once we know a child is ours their special need becomes insignificant. They simply become our child and we will do what ever we can to help them! We have also found that many of the special needs are more doable than we originally thought and caring for the child becomes part of our routine and daily life.

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So let’s keep searching!

Next I would start checking out the advocating blogs!
Here are just a few that I know of:

There are so many more blogs and websites on the internet, so start searching! Your child is waiting for you!

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At this point you have seen many children that need families. You may have even found a few that make you heart skip a beat. Now it’s time to find an agency if you haven’t already found one. You do not need to go with an agency near your hometown. You can go with any agency in the USA. Cell phones, faxing, attaching, emailing, and overnighting has made it a small world. Our family is in Minnesota and we have adopted with agencies in Minnesota, Colorado and Alabama.

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After this I would contact a few agencies that you are interested in adopting through and see if you can view their waiting child lists. You will need to fill out a form to have access to their lists. However, this does not mean you are committed to adopt through that agency. There may be a small fee but many of the agencies will allow you to see their lists with just filling out the form.

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I hope that this information will be helpful to you and at least get you started on the amazing journey of adoption! I am unable to have a comprehensive list because there is so much information available. We have found that one list or one contact will lead you to another! Somewhere out there is your precious child. The journey to your child will be filled with excitement and challenges! It is amazing and you will see God at every turn! ENJOY!


22 ways to raise funds for your adoption

Hello! My name is Amy Abell, and I am so excited to have this opportunity to be a guest blogger for No Hands But Ours.

I began blogging soon after I became pregnant with my first son, Noah, in 2007 and continued to blog when my second son, Liam, surprised us with a cleft lip at birth. We knew Liam’s smile had a purpose for our lives, and when it finally led us to adoption in July 2012, we were both shocked and excited! I chronicled our adoption journey and grew more and more passionate about orphan care every day. After bringing our son, Tucker, home from China in October 2013, my desire for more families to get involved in helping the fatherless has gained a stronger sense of urgency.

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Typically, I hear people name MONEY as the number one reason they are afraid to move forward with adoption. Few people have $30,000 lying around to use toward an adoption, and they think they must finance their adoptions alone. Men seem to feel especially ashamed or too prideful to ask for help. When people adopt this kind of attitude, they miss out on three critical opportunities.

First, people miss out on the opportunity to see God work through the people in our lives. Seeing people donating items to our garage sale, running a 100 mile race, fundraising on our behalf, sponsoring puzzle pieces, and selling t-shirts was all so very humbling. The appreciation, love, and reverence we experienced for our friends, family, coworkers, and strangers is still carried in our hearts today. I was brought to tears so many times seeing the people around us supporting us and sacrificing for our family. It still gives me chills to think about how we felt God’s presence through all of their actions.

Second, when people hold fundraisers, their family, friends, coworkers, and strangers have an opportunity to get involved in orphan care. For many, this will be the first time they have lived out James 1:27. When people give their time and money to any cause, it automatically becomes more personal to them.

Third, when people donate time and/or money to help a adoptive families bring home their children, they experience the intrinsic reward of helping someone else, which can result in wanting to get more involved in orphan care. Your adoption could be the door God uses to open other people’s hearts to the fatherless. Maybe they will become foster parents. Maybe they will find a way help children who will never be adopted. Maybe they will host orphans or even adopt themselves. You will never know unless you invite people into your journey.

Information is power, and if you are scared to pursue adoption because of the finances involved, then today I am going to empower you with many ideas to raise money for your adoption.

1. Garage Sale – When you add your items to the collection of items donated from friends, family, coworkers, and strangers, you can really raise a lot of money for your adoption. One family told me that they raised $6,000 just through garage sales! Here are some tips for holding a successful garage sale. Here is a recap of our garage sale adventures.

2. Craigslist or Ebay – Sell more significant items through these websites. I even know one woman who sold her wedding ring. Seriously, when you make the decision to bring a child into your family through adoption, you will do nearly anything to get that child home.

3. Photography Session – For those of you who are amateur or professional photographers, this is another way to raise money.

4. Selling Items for Businesses - Scarlet Threads, Mudlove bracelets, Goat’s Milk products, Mixed Bags, Tukula Bags, bed sheets, cookie dough.

5. Selling Handmade or Homemade Items – nursery letters, quilts, jewelry, key chains, coasters, self-designed cookbooks, Christmas ornaments, hair accessories, knitted or crocheted items, paintings, pizzas, desserts, etc. If you have a gift for creating, you can sell your creations to others.

6. Food-Related Fundraising Event – Ice Cream Socials, Spaghetti Dinners, Banana Split Social, Soup Dinners, Chili Dinners, Lasagna Dinner, Pancake Breakfast, or Murder Mystery Dinner.

7. Restaurant Fundraising EventChick-fil-A, Orange Leaf, Panda Express, Pizza Hut, Fazoli’s, etc.

8. Benefit Concert with Dinner – If you or someone you know is gifted musically, this could be a great option for you. One family shared with me that they planned a nice meal, had a silent auction (63 baskets filled with everything from donated Diamond Rio VIP tickets to oil changes) and had a group of friends come and perform (singing). They charged $10 a ticket and sold between 80-90 tickets. The food was donated, the location was donated, the entertainment was donated, and most of the baskets and items were donated. They had great success with their benefit, raising $4,000!

9. Make and Sell T-shirts – Everyone wears t-shirts, and it is fun to have t-shirts to remember various events in your life. Contact local printing companies or even use an organization like Fund the Nations, 147 Million Orphans, or Adoption Bug.
 
10. Puzzle Piece Fundraiser – Your family, friends, coworkers, and strangers can sponsor puzzle pieces for $5, $10, or any amount that helps you reach you goal. Then, you can hang your completed puzzle in your child’s room as a constant reminder to all of the people who worked to bring your child home. Here is my post about our puzzle piece fundraiser, along with the You Caring webpage we created (our video is still there) and used to process donations. Here is my post at the completion of our fundraiser after people donated $5,425 in just nine days.

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11. Change Collection – One family wrote and shared they passed out containers (paper printable) to their friends, family, and coworkers and asked them to put spare change into them. It is amazing how quickly loose change can add up and help bring these kids home.

12. Grow Your Blog Giveaway – For those of you who have a network of bloggers, one family held a Grow Your Blog Giveaway. Various bloggers donated their ad space for a chance to win a prize. To be honest, I know less about this option, but for those of you who are serious in the blog world, I’m sure you understand what this means.

13. Online Auction – Families can use Facebook or their blogs to host an online auction. You can post pictures and descriptions of various items and services, set minimum bids, and hold an auction. Many artisans from Etsy will donate items and appreciate the free marketing you provide.

twelve year old Grace held a China-themed babysitting night and raised $430 to bring our son home

twelve year old Grace held a China-themed babysitting night and raised $430 to bring our son home

14. Lawn Mowing  or Babysitting Night – Do you have older children who want to help bring their siblings home? They can mow lawns or hold babysitting nights and donate their earned money.

15. Create an Etsy Shop – For those of you who have the ability to create, opening an Etsy shop is an easy way to sell your craft. This is an easy way to raise money if you can make desirable items.

16. Send a Formal Letter - Sending a formal letter to friends, family, and coworkers explaining what led you to adoption, who the child is (if that is known), why their support would be appreciated, and how grateful you are for their consideration. If you have a matching grant or a way for people to make tax-deductible donations, make sure you provide that information, as well. If you have a blog or a website where they can follow your journey and/or make donations online, provide that, as well.

17. Painting Party – Are you a talented artist? If not, could you find someone to donate their time to hold a painting party? You could charge a set amount to cover the materials, and the remainder could be applied to your adoption fund.

18. Both Hands Fundraiser – The purpose of a Both Hands Fundraiser is to help people raise funds for orphans while serving widows through home improvement projects. I have seen several families hold a Both Hands Fundraiser with great success. Not only do they team up with their friends, family, and coworkers to serve a widow in their community together – donating hours of service time – but they are able to then raise money to bring home their children. One family shared that $8,000 was donated to their fundraiser!

19. Create a You Caring Website for Online Donations – The best website, in my opinion, for adoption fundraisers is You Caring when you do not have a matching grant where people can make tax deductible donations. This website only allows certain types of fundraisers, and adoption is one of them. You Caring does not retain any portion of donations. The only fees collected are through PayPal (2.7% + 30 cents per transaction). All other fundraising websites that I viewed kept a percentage of the donations for themselves. This ended up being 10% of total donations for some websites, and to be honest, I will not make online donations to those websites, as I want as much of every dollar I donate to be used. Our total PayPal fees collected on $5,425 worth of donations was only $117 (note: we had some donations made offline by check, so fees were not taken). Here is an example of a family trying to raise funds through You Caring to bring home four brothers from Haiti.

20. Hold a Sporting Event or Participate in One - If you are someone who likes to organize events, create your own 5k, 10k, volleyball tournament, 3-on-3 basketball tournament, or golf outing to raise money for your adoption. If organizing events is not your specialty, participate in an existing event such as a mini-marathon, marathon, or in our friend Andy’s case, a 100 mile race. You can ask people to sponsor you per mile or just donate a lump sum. Have friends participate with you and ask them to do the same! Having friends and family working to support your cause is one of the most humbling feelings in the world.

21. Christmas-Related Fundraisers – If you are going to fundraise around the holidays, you could easily incorporate the theme into your fundraiser. If you enjoy gift wrapping, offer to wrap others gifts for a set price or ask for donations only. I also remember a family having a Meet Santa fundraiser where they provided breakfast, the opportunity to meet Santa, a craft, games, etc. and charged for tickets. You could sell individual tickets or charge per family. I can’t remember how much money they made specifically, but I remember it being a successful fundraiser!

22. Be Willing to Make Personal Sacrifices – This is so important! When you are fundraising for an adoption, you are putting yourself under a magnifying glass in some ways. People can be very judgmental, and they will appreciate seeing you make financial sacrifices. Working overtime, getting a second job, cancelling your gym membership, cancelling your cable/satellite service (that can be $1,200 easy), going out to eat less often, etc. are all ways to show that you are being responsible. Taking several trips or vacations, buying unnecessary items, and obvious overspending can deter people from wanting to help your family.

Not every single one of these ideas will work for your family, nor do I suggest having 20 different fundraisers at once. People get overwhelmed and confused by how to get involved. Keep it simple and be intentional about choosing your fundraisers. You need to feel invested in them and excited about them if they have any chance of being successful.

example photo we emailed or posted on Facebook for each family who donated to our puzzle fundraiser with a personal thank you note

example photo we emailed or posted on Facebook for each family who donated to our puzzle fundraiser with a personal thank you note

As you determine how to fund your adoption, please remember to raise money with a grateful and humble heart. I cannot stress this enough! People want to know that you appreciate their donation no matter if it is $5 or $500. Find a way to thank each person individually if possible in order to show your gratitude. Making someone feel appreciated goes a long way. Try to use language such as “$5,000 was donated to our fundraiser” rather than “We raised $5,000 with our fundraiser.” By saying it the first way, you are recognizing the support of other people rather than your own efforts. This is so important! Yes, of course you worked hard to execute your fundraiser, but without donations, they would not be successful.

I hope you find these fundraising ideas helpful! My goal is to remove any barriers that exist to bringing more children home. Next week, I will share some other ways to fund your adoption through grants, interest free loans, employee assistance programs, and the adoption tax credit. Additional fundraising ideas can be found at a blog called Walking by the Way. I wanted to highlight these top 22 ideas in order to give you the idea that there is a variety of ways to raise money for your adoption.

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Amy Abell
My Passionate Balance

the need is great

This month I meant to share with you about a difficult conversation one of my kids and I have been dancing around for months now. And I will share that conversation at some point.

But it won’t be today.

Today my heart is broken, my thoughts are disjointed and my emotions are raw.

I just got a text from my sister about a boy she and her family have gotten to know during their three trips to work at the orphanage their church sponsors. My nephew, himself less than four years removed from orphan status, considers “Pedro” one of his best friends and talks excitedly about visiting him when they return to Honduras later this year.

But it looks my nephew will not see his friend again. Last week it was discovered that the cancer that took his leg early last year has come back..and apparently with a vengeance. After his exam today the missionary doctor has given him weeks at best.

Weeks.

While I’ve never personally met Pedro, I’ve seen pictures of his contagious smile, I’ve heard stories about his delightful personality, and I’ve seen how he’s impacted my sister, and more importantly, how he’s impacted my nephew. So today I’ve openly cried for him in front of my children. We’ve talked about cancer, lack of good medical options, and facing death as a child in an orphanage.

Then I stopped to think about the thousands of other kids in institutions across the globe with stories like his.

The tragedy of children walking through difficult times without a family to lean on is almost too much to bear.

There are days that I wish I could close my eyes to this crisis. That by distracting myself I could disconnect from the injustice. But eight “ish” years ago when we stepped into the waters of international adoption our eyes were opened and the crisis of the orphan has become part of our reality.

Some days it hurts. It hurts nearly to the point that I feel I will break. I become almost paralyzed at the vastness of the need. I just want to throw my hands up in the air and give up. But giving up won’t make the tragedy disappear.

My family can’t solve it all. And neither can yours. But I have to believe that if we continue to link arms…to support adoptive families…to make more people outside our little adoptive community aware…to sponsor organizations that are working both to provide life-giving surgery to orphans and to keep birth families together…that we will make a difference.

One life at a time.



special need highlight: adopting a child with thalassemia

In August 2011, my daughters and I returned to China as part of a mission team working to help orphanages assist their children with special needs. It is no coincidence that my background as a pediatric Occupational Therapist would be needed in the place so close to my heart. I partnered with the incredible organization Grace and Hope for Children, just as I had done almost every year since 2005, and was close to adopting Mia who was living in a different orphanage within the region with a diagnosis of beta thalassemia major. When we arrived at one particular orphanage, children were everywhere. It was a much different experience than 2008, when I was only shown a few of the kids living there. This time, we were to see every single child. Every single life. My heart broke for all of the children, orphans, who needed to be wanted, cherished, and loved.

The orphanage already knew I was in process for the adoption Mia and had some questions. They were very curious as to why I was adopting Mia, and what the medical care would be for children with thalassemia in the US. As I explained how we live in an area where one of the centers of excellence for thalassemia is, they brought out a baby. He was pale, yet playful. Lianna held him and he looked at me, calmly and cautiously. I was told he had thalassemia, and they never had a child with thalassemia survive. Ever. I tried to encourage them. I told them that there are families who are open to adopting children with thalassemia. That this sweet baby had a chance. Several months later, I was told that this sweet baby had not survived. He never got his chance.

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In October 2011, as I was adopting Mia, her orphanage begged me to help find a family for another child with thalassemia who had been on the waiting child lists for adoption for several months already. He was getting sicker and the orphanage was very worried. They already had several children with thalassemia adopted from the orphanage, and were hopeful someone would adopt him too. Nobody had come forward for the boy with a sweet smile who was at the top of his class. He had many friends. He was adored by his foster family. The orphanage pleaded for a chance for him. He never got his chance, and is now smiling that brilliant smile in heaven.

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A few months later, I received word from that orphanage we visited in August 2011. They had two more baby girls with thalassemia. They wanted these babies to have that chance. The chance that the pale baby boy never had. They asked me to help, so that they could live. They asked me to find each of them a family, and they would begin the paperwork needed for adoption. The photos were heartbreaking. One of these children was so fragile. So sick. The other had such a sadness in her eyes. These babies needed someone. Someone to come forward and give them a chance. Someone to say yes. I thought back to the baby I met whose eyes seemed to beg me to give him a chance. And how he never got that chance. I started advocating for these two Guangxi girls, and a year later one of these precious baby girls came home to me. She was to be my Hannah Joy. Her orphanage sister came home a few months later to a very special family. The orphanage finally had two survivors of beta thalassemia. First.Time.EVER.

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When the orphanage saw these two girls survive, and then thrive, they had hope. Despite the fact that Guangxi typically suffers blood shortage, they committed to trying to transfuse children as much as possible. Three more children entered the orphanage with thalassemia, and they quickly prepared paperwork. And yet, I learned last week that one of them, a precious baby boy, would not survive. Another chance lost.

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The thought of my Hannah Joy being one of two who lived from her orphanage, one of the survivors, is a thought that haunts me sometimes. She brings insurmountable joy. A joy that never would have been experienced if she did not survive. If she had been one who did not have a chance, it would have been a void in my life and a void in the world. She is a gift, and it is a privilege to be her mother. Her infectious laugh, her brightness, her sweetness, her inner beauty is gift to all who experience her. And yet, it’s a fact I struggle with this week learning that one more life was lost to thalassemia. The world is now void of these other children who did not have a chance. We will never again have the opportunity to experience the love they could have given to us. The hope they could have shown us. And the courage they could have displayed to us.

I am determined to not let their short lives be in vain. Children with thalassemia intermedia and thalassemia major are just like any other children. They develop, learn, are playful, and add so much to a family. I know this first hand. The difference between kids like my Mia and Hannah Joy and other kids, is that they are anemic, and their anemia is not fixable with iron. They need donated blood for transfusions and then chelators to remove the consequences of these transfusions. The transfusions are given under the care of a hematologist, at a hospital, every 21 to 28 days. It is likely Mia will need transfusions every 14 days as she reaches adolescence or young adulthood. These transfusions continue for life, or until the current research enables better treatments or a cure.

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People will ask me how I do it. How do I parent two children needing such care? I just do it. Just like any other parent would. I take care of them, and we live our life with school, piano lessons, Sunday school, and dance class. It really is no different than learning a biological child or family member needs medical care. Biological children develop chronic medical conditions all the time. Unfortunately, no child is immune to diseases such as diabetes, learning disabilities, cancer, lupus, syndromes, asthma, epilepsy, cystic fibrosis, cardiac conditions, or thalassemia. And yet, we learn to live with these things in our lives, as a small part of what we do in taking care of our children. As parents, we learn to adjust to whatever medical or developmental issue befalls our children. And we do whatever it takes to help them live as normal a life as possible. The issues or conditions never steal the joy our children bring and what they add to our families or give to the world. The same is true for my sweet girls with thalassemia. The world is a better place because they are in it. And I believe that the world is awaiting the gift of the presence of the many other children with thalassemia who continue to wait to be chosen. Take the chance. Choose the gift of a child. A child who just happens to have thalassemia. It’s a chance which will never be regretted.

~Guest post by Cindy

Waiting Children with Thalassemia

These children still wait
These children still wait as well

Micah with Lifeline UPDATE: My family has found me!

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Contact the Advocacy Team for more information on beginning the adoption journey.

TEF, TOF, and VACTERL, oh my

Don’t you love those acronyms? I have come to really appreciate the time they save, the space they save, and that I can safely dodge oodles of mispronunciation. For example, until 2012 those letter sequences meant nothing to me. If someone would have told me years ago how much I would come to know about their meaning I would have laughed. I would have laughed a lot, and then I would have freaked. out. As I write this, it occurs to me that it might look as though I ripped my information from a medical journal. Rest assured, this all came spilling out of my brain and heart. If there was a site or a journal to credit I would. Perhaps some of you parents can relate. If you have a child with acronyms in their medical file – you tend to know stuff. You tend to become an expert about those acronyms, about what they stand for, what procedures are required to treat and diagnose and repair. I can hardly remember what I walk into Target for on any given day, but if someone asks me what TOF means I will promptly spew forth so much information in a matter of seconds that I hardly recognize myself.

Moms of kids with acronyms unite!

We brought home our daughter Grace, from China in May of 2013. You can read all about our miracle girl at our blog. We started our journey to Grace in January of 2012, and it has been quite the adventure. I’m forever in awe of how God knit us together as a family. We went from a family of four with zero “special needs” to a family of 5 with a bunch. There were scary times, scary terms, scary travel with a cyanotic baby, and scary surgery (all kinds of scary) – but for all of the scary we have survived together it’s in the top 5 all time favorite seasons of our life as a family – for sure. I have learned a lot as a mom of a child with multiple congenital defects and I am passionate about sharing what I’ve learned because sometimes acronyms can scare you right out of someone amazing and I cannot imagine my life without our daughter, acronyms and all.

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TEF: Tracheo-esophageal Fistula: A congenital (born with) defect where the trachea (breathing tube) and esophagus (food to stomach tube) are connected. A baby born with this defect will get very sick fast since half of what they drink goes to their stomach and the other half the aspirate into their lungs through the trachea.

Grace was born with this, I’m sure it is why she was extremely sick when she was found at approximately one week old. She was immediately hospitalized and had the TEF repair surgery at three weeks old. She also had a raging case of pneumonia among other things. When this necessary and time sensitive repair is done (removing the connection between the trachea and esophagus that are meant to be close but separate) there is inevitable damage to both the trachea and the esophagus. The trachea, which should grow and become more rigid with age is left with a bit of scar tissue at the repair site. This almost always leaves the trachea “floppy” which makes for several challenges and concerns: it’s noisy, its a trap for bacteria and things that shouldn’t be in the trachea, it can easily become irritated, it can (in severe cases) fold in on itself cutting off air supply. Next door, the esophagus is also left with some scar tissue, which can and often does cause stenosis or narrowing of the esophagus. When this happens and you’re on a liquid diet it’s hardly, if ever, noticeable. When you begin to introduce solid food, it’s inevitable that unless you are very carefully taking and thoroughly chewing small bites of food, and following it up with a drink of something, what you swallow will get stuck. It’s not choking (choking happens in the trachea) it’s that feeling that there’s too much in there and it will either have to make it’s way down – or come back up.

The second result of the esophagus repair is how it affects the chain of nerves that make the esophagus squeeze food to the stomach in a matter of seconds (peristalsis). When that series of nerves is interrupted – the esophagus cannot function the way it should. It might have some function – but truly gravity is doing most of the work to bring the food into the stomach. We knew Grace had the repair. We did not know until after we were home all that the repair had created. It is very manageable in her case. We closely monitor what she eats and as she’s growing she is learning to drink between swallows and chew well. There is a ton of progress in her eating and swallowing since we brought her home.

TOF: Tetralogy of Fallot: This is one of the most common congenital heart defects (CHD). There are four defects that are accounted for in TOF, but two are necessary to be repaired and the others you live with. One of the two that must be repaired is a Ventricle Septal Defect (VSD) which is an opening between the ventricles. This allows oxygenated and deoxygenated blood to mix before entering the body, resulting in insufficient oxygen saturation throughout the body. The other repaired defect is a poorly or non functioning pulmonary valve.

When we met Grace in China her oxygen saturation on a good day was in the 70′s. When she was upset, terrified, or crying they would drop into the 50′s. At 19 months old she was 16 pounds and had blueish gray finger tips and toes and sometimes lips, she was cyanotic. Her overall color had a grayness to it.

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Her body had adapted to her condition to survive in this way but the older you get and the bigger you get, the more oxygen you need, the harder your heart works. Her heart was enlarged and when she laid down there was a noticeable difference in her rib cage from where her heart was larger than it should be. The doctors in China were ready and waiting for months to operate but she was chronically sick with pneumonia. She had a chance once and spent over a week in the hospital preparing for surgery but the noise in her trachea was concerning and they refused to operate. I’m so glad they did. We traveled to and from China with a portable oxygen concentrator (POC) that helped some when she was especially cyanotic.

We returned home from China on May 19, 2013 and on June 21, 2013 we got to be her family when she went from blue to pink and her oxygen saturation read 99%.

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pink fingers

Grace and mama hospital

It was a glorious glorious day and we praise God for how He brought about healing in her tiny body at just the right time. Today I’m happy to say that in the almost 10 months since we have had Grace as our own, she has only had three colds (after 19 months of chronic pneumonia) and her cardiac function is great. It’s not even a part of our daily life any longer, other than her “battle scar” reminding us that she is a walking miracle.

VACTREL:
V: Vertebral anomaly (congenital scoliosis for example)
A: Anal (anal atresia or some other type of malformation in that area)
C: Cardiac (congenital heart defect)
T: Trachea (tracheoesophageal fistula)
E: Esophagus (esophageal atresia)
R: Renal (kidney abnormalities)
L: Limb (defects in legs, arms, hands, feet)

When you receive medical information with a referral for an adoption, most agencies if not all agencies suggest (and some require) that you submit that information to “International Adoption Clinic” where doctors are familiar with looking through referrals carefully and giving you a clearer picture of what needs are diagnosed. When we received our response from the international adoption clinic in Minneapolis we were very well educated in what to expect from the cardiac defect, and the TEF repair was explained. What I didn’t know anything about was the suggestion of “VACTERL association”. Even in all of my researching of medical conditions while we were paper-pregnant I had never come across that term.

VACTERL is a collection of congenital defects that often are associated. For example, after returning home we met with a genetic counselor who explained that while there’s nothing really to be done for VACTERL association – it’s a map and fits a fairly common pattern for other potential anomalies that may not have presented in a child yet. If a child presents with two or more congenital defects it is often recommended that the other systems within the VACTERL association be examined as well. One
doesn’t have to have every letter accounted for to be considered someone with VACTERL association but more than 2 suggests a possibility.

At the time of referral, I didn’t think much of it. I researched it, I was prepared to have our docs look into it upon returning home and I brought it up to every specialist we have seen. All agree she fits the pattern – especially when she was diagnosed with congenital scoliosis due to a hemi-vertebrae (a uniquely formed vertebrae which sets everything above and below it a bit curvy. She doesn’t have anal atresia, no obvious limb defects, but she was born with hydronephrosis (one kidney larger than the other) which has since resolved. She may have a tethered spinal cord but shows no symptoms currently (which is a post for another day… perhaps April).

scoliosis

Sometimes it’s comforting, in an odd, way to have a pattern that makes some sense, you know? It has been noted, and docs nod and say – “yes she fits, so we will look into other things to make sure there’s nothing we are missing”.

*gasp*

…Good heavens… What else could be missing?? Sometimes, I have to look back and remind myself she was created, I believe, this way on purpose.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well. My frame was not hidden from you when I was made in the secret place; when I was woven together in the depths of the earth your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them they would outnumber the grains of the sand. When I awake I am still with you.” — Psalm 139:13-18

Grace gymnastics

What do you tell a child born with multiple defects why they were created “like that.” The same thing you tell a child who was created with one – or none. You tell them Psalm 139:13-18. You tell them they were fearfully and wonderfully knit together by a God who has ordained each one of their days, and that nothing is hidden from God even though it’s sometimes hidden from us, and that nothing surprises God, even though it might surprise us. We brought a child home with known congenital defects – and we brought that same child home with even more unknown congenital defects. We were surprised by some, but God wasn’t surprised by a single one. We either believe that or we don’t, and I believe it as much as I will believe that the sun will rise tomorrow. I don’t know why a good God creates some people with no “defects” and others with several, but I believe He is good. I have seen how the hard things in Grace’s life have not just been redeemed but have been used for good. I have seen time and time again the miracles that occur in people with congenital defects, the healing that doesn’t make sense to the experts, the children who out live the odds, and that is precious and rare to behold. The reality is, we live in a world where bad things happen that we can’t explain, can’t prevent, and through no fault of our own – exist. It’s what we do in those moments, and how we live with those things. That is what defines us – not the “defect”.

The “defect” never defines us. The “defects” never define the child. The acronyms, the medicines, the scars, the prognosis – must not define our children and it must not define our life.

Grace and mama

What if we would have known it all ahead of time? If you read our story to Grace you’ll know it was far too late to say no. By God’s grace, and through no effort of ours, we were matched with the one child we already so loved. She could have had two heads and we would have brought her home. What if before that we would have said “no…defects are too scary…acronyms are too hard…she will need surgery(s)? I can’t watch a child suffer like that…” What if we had said no to it all at the very beginning. I shudder to think of all we would have missed out on. I spend my days with the most beautifully, spunky, energetic, loving, hilariously sassy, independent, brilliant, adorable Chinese girl with more “defects” than I can count on one hand.

I wouldn’t change one thing.



what we’re reading :: we’re back

Because you asked so very nicely.

Thanks to those of y’all who messaged, commented and emailed, we have officially revived our What We’re Reading feature.

If you’re not familiar with What We’re Reading, it began 5 years ago as a once-a-week post by Tonggu Momma to share links that encourage, inspire, enlighten and inform those of us on this journey of special needs adoption. Because, don’t we know, this is a journey that is full of hills, valleys and everything in between. It morphed a smidge over time to be a little less frequent (that’s when TM handed the reins off to me, ahem).

We also added links to blogs of families who are in China meeting their new little ones. Because that? Is so. much. fun.

And we would love your help to make our What We’re Reading posts even better. We’ve created some very simple forms to complete with any links you think would be of interest to our readers. It might be a news story, a blog post or a special needs resource – anything adoption related, China related, special needs related or parenting related. If you thought it was a good read, let us know. We’d love to check it out and consider sharing it in a future What We’re Reading post.

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:

Connie at One More Ladybug reviews the last year with her newest child, Khloie. They’ve tackled cardiological, neurological, vision, verbal and motor issues – and Khloie’s progress has been nothing short of miraculous.

Fannie at Crazy Life of the Wilks Family shares her heart after hearing the news of the death of a child in China with thalassemia.

Photographer/Designer extraordinaire, Ashley Ann, on her blog Under the Sycamore shares the story of Noelle – a little one at New Day who is in desperate need of life-saving heart surgery. Amazingly, all the necessary funds were raised for Noelle’s surgery. Yay!

Katie at For the Love of One with a profound post about what it feels like to live with “the constant reality that I will more than likely bury my own son.”

Rebecca at The Sweet Life recently brought home her son from China who, developmentally, has much catching up to do. She shares a bunch of wonderfully fun and effective ways to encourage learning for little ones, especially those who have not received appropriate opportunities to learn.

Hannah at Loving Dangerously reflects on a visit to an orphanage where she visited with the frailest and sickest children of all.

Tara at Gladney’s blog All I Need shares a powerful guest post about the adoption of her daughter with a similar need to her very own – severe burns.

In the news:

Maybe She’ll Go To The Moon – father of a little girl with Down syndrome speculates on all that his very special daughter will be able to accomplish. At her birth, he was told by the geneticist “you’ve probably seen them bagging groceries” in reference to his daughter’s Down syndrome.

The Holcomb C3-R, an alternative to corneal transplants for people with keracotonus, helped make bobsledder Steven Holcomb’s Olympic dreams come true. The Today show has a 7 minute video on the Holcomb C3-R here.

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

Traveling Families:

precious Maggie, newest daughter to Ginny at 4URuthie

precious Maggie, newest daughter to Ginny at 4U Ruthie

In China now, or just home with their child…

4U Ruthie and Mountains for Maggie
The Oasis – Adopting HIS Children
Is There Not A Cause
Fancy That Design House
Our Adoption Journey
Troncalli Family Adventure

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

P.S. A special thank you to Holly and Liberty for your contribution to What We’re Reading this week.


Timing is everything

There’s an old saying that “timing is everything.” And it’s true. The moment at which something enters our lives does make a difference in how it is received. For better or for worse.

My “baby” just celebrated his fifth birthday, which is his fourth birthday with us. This one was bittersweet to me. After nearly 11 years of having a child home with me, my youngest reached the age that he will begin school…in what seems like only a few short months. But he was oh so excited about his special day and that brought a big smile to this mama’s heart.

Caden's5thBday

I was up to my eyeballs in Teenage Mutant Ninja Turtles party planning when a seemingly harmless scroll through my Facebook newsfeed left me broken. Only a few short days before my baby celebrated his birthday, a baby boy in the care of an organization in China died due to complications from exposure after being abandoned on a cold February night. It suddenly hit me what a milestone the party I was prepping for was. Because five years and a few days earlier another baby boy was left outside on a cold February night in China. And by some great miracle he became my son. As I looked at the picture of the sweet infant in my newsfeed, I saw a strong resemblance to the boy playing upstairs. In another time, it could have been him that didn’t make it. I’ve always viewed my kids as miracles, and that feeling has intensified with adoption. That out of all the people on every waiting list my “babies” ended up with me is a phenomenon that leaves me speechless. But as I looked at the sweet face of this baby boy, I realized what a gift it was that my birthday boy was even alive to celebrate his special day.

I wish we didn’t live in a world where babies were left on cold nights. I wish we didn’t live in a world where families are unable to keep their children due to medical needs. But since we do live in this world, I’m thankful beyond words that on a February night five years ago my baby boy stayed warm enough to make it home to me.

Had I seen the picture of this precious baby at any other time, it would have broken my heart. But the close proximity to the anniversary of my son’s “finding day” definitely made the impact stronger. As they say, timing is everything. And in this instance the timing made me fall to my knees in gratitude for the little boy that’s not so little anymore. For his life. For the chance to be his forever mama. And even for the green icing on that cake he just had to have on the day we celebrated his birth. Yet, at the same time, I hurt a whole lot more for the one that was lost. Because in the face and story of that sweet orphan baby, I saw a piece of my own heart.

 

This is Goin’ Out to all the Second Opinions…

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So there we were driving into a parking garage of a strange new hospital with a strange new hospital smell to ride the elevator up the flights to the long row of specialists and into the fish aquarium waiting room to wait. To wait for the second opinion.

The second opinion that became necessary after two not so great surgeries with two not so great complications. And we feel like traitors in that fish aquarium waiting room, me and my surgeon husband, abandoning the ship that feeds us to jump to another with hopes of something better for this little one. This little one who is resilient and adjusted and beautiful.

My eight year old biological daughter is self conscious of her smile with crooked teeth that braces are aligning. How much more will this little one be at eight with a mouth and nose that don’t look like they should even though we think she may be the cutest thing that walked.

So we listen and ask and listen some more to a completely different treatment plan with more surgeries, small surgeries, grueling sounding surgeries and this doctor is kind and confident and asks where she is from. She opens her mouth and tilts her head back like the professional she is to let him get a glimpse of this mouth and nose and she smiles and nods. And we are so proud of this little fighter and so broken hearted that things have not quite gone as we had hoped for her medically. And we know there is hope and that she will be fine but we grieve this process for her. It feels like starting over.

And we leave the hospital in a fog of “what ifs” and tears come down my face as she happily asks from the backseat, “What doc say bout’ my lip?” “He says it’s beautiful.” “We say it’s beautiful.” “He’s going to make it even more beautiful for you, is that ok?” “Yes!” (Big smile) “Do you like him?” “Yeah!” (Big smile). And we crawl through rush hour traffic to get home to our other children who are waiting amidst board games and crayons. Dinner that would have been cooked is now pushed aside because there is too much on our mind to cook it and clean it and “How about cheeseburgers?” is met with a round of applause. So we go to a new restaurant that has TVs everywhere and two children push their seats around to try and block their view so they can’t see the chaos of the news and the angry comedy and boxing. And we sigh over not so great burgers and I feel the depravity of this world closing in. Loud and foggy and overwhelming and sad. We get in the car to go home and my car pulls a random song from my phone (still not sure how it does this) and it is “Silent Night.” Silent Night in late February. A newer Silent Night with a “Hallelujah He is King” chorus and it’s dusk and our hearts settle. Grace (the little one) is singing “Jesus Loves Me” as we are silent and I close my eyes and remember that He does. There is no pain unseen and nothing that He can’t work for good. Suffering, no matter how big or small, is not for loss. I close my eyes and focus on Him as we drive home in dusk. Yes, He is King and yes, He loves her.



Urology Woes & Successes

So happy March, y’all! Are you as excited about spring coming to your neck of the woods as I am about it coming to mine? Whew. And I only live in the South. Can’t imagine how you folks in other parts of the country are still managing to maintain sanity right about now!

But hold fast! It’s coming!

I’m a big dork and missed my February post…partially because our Little Prince had his umpteenth surgery and mostly because, like I said, I’m a big dork.

I shared in January that Gabe would be headed to the OR yet again for yet another urological reconstruction. We knew that this time would require a large buccal mucosal graft from the inside of his mouth to build a much needed urethra through which he could urinate normally. Amazing, really. The tissue from just inside your bottom lip is nearly perfect for constructing a tube that most all of us take for granted. We prayed for this day and dreaded it.

A mere few days before surgery, the South was slammed {don’t laugh, people!} with a winter storm. We were blessed to be home that day and not stranded like so many others. Our kids played and we soaked up a fantastic morning in the snow…all the while, thoughts of Gabe’s upcoming operation lingered in our heads.

snow jan 2014-5825 copy

Monday came and the surgeon walked in smiling and simply said, “Big day.” We agreed. He went on to say that he wanted to admit Gabe to the hospital for a day or two and that post op would be very difficult. To give the graft the greatest chance of survival, he would have an anchor pressure dressing stitched into and across his groin and would need to lay flat for 10 days. No sitting, no standing. At all.

Our son was to turn 3 years old just a few weeks after this surgery.

A very busy, near three year old… laying down…for ten days.

I’m sure our faces, hubby’s and mine, were laughable. We just stared at the urologist. {The one who intimidates the heck out of me and whom I routinely make an idiot of myself in front of…}

This was to be a double surgery…Gabe, sweet baby, was also very tongue tied. We wondered if he was just speech delayed or if there were more to it. Five minutes with the speech therapist confirmed, he’s got a tongue that’s cemented down. :( So that was getting “clipped” during the same OR visit as his urological reconstruction.

The ENT came in to tell us that his tongue had been successfully “loosed” and said that she just had to share with us…the urologist, the brilliant man in front of whom I fall apart and say the dumbest things, was telling everyone in the OR about our family…and about some of you.

She said that he shared with them how diligent we are with Gabe’s care, how it’s so evident that we love and adore our son, and that “somehow” we manage to refer many China adoption families {some from other states} to him for the care of their children. She said that he told them that he thinks so much of Jase and I.

We were floored. And humbled.

Because you know something? It’s not us at all. It’s the Lord. It’s His goodness in maintaining perseverance in us. It’s His grace that grafted Gabe into our family and it’s most definitely His hand that has led some of you to us for advice or encouragement about adopting a child with extensive urological needs.

Make no mistake. We would do this over and over again. We would choose him again and his SN again and the whole lot of it again. There are MANY special needs that we’re NOT equipped for. And no, we didn’t anticipate that Gabe would need this many surgeries. And no, I wasn’t open to some of them when checking off boxes on the waiting child application.

But I’d do it again in a heartbeat.

As the surgeon said would be the case, Gabe was admitted to the hospital and had a hard few days post op. The Lord was so faithful to honor the prayers of so many people who were lifting him up…

For TEN DAYS, this boy did not sit or stand. And what’s more, he didn’t fight us when we reminded him. His pain was managed well and within three days, he was off the meds. But he never complained, never fussed. We took turn about pulling him in a wagon when the sofa or the bed wore on his nerves. And we got through a long ten days successfully.

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The jury is still out on whether or not this graft will be sustainable. We are 8 days post catheter removal and there are concerns. But still, we hold fast to Jesus and entrust Gabe to Him…knowing that His ways are higher and His heart is trustworthy.

Like my dear friend, Rebecca, posted a few days ago, please reach out to someone here if you are feeling led to a certain special need but are fearful. We would count it a privilege to speak to you and encourage you with honesty and grace.

XOXO