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What Does Life with EB Look Like?

September 3, 2015 by nohandsbutours 0 Comments

What does life with EB look like?

It looks like swinging on swings at the park.


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Epidermolysis Bullosa is a genetic connective tissue disorder. There are many types and sub-types, each affecting the individual in different ways. Regardless of type or sub-type, one thing that I have noticed about kids with EB, and their families, is the desire to live as normal a life as possible.

Epidermolysis Bullosa seems to be in the news more and more these days. Recently, I was talking to a mama about our daughter’s condition, and she responded, “Oh yes, I’ve heard about that!” Seven months ago, that may not have been the case. EB is definitely in the public eye. There are videos of brave kiddos making the rounds on social media alerting people to this condition, which is great. The more attention EB garners in the news or via celebrity appearances, the more funding we are likely to receive for research. This research works on solving a variety of common problems like chronic itchiness, or finding ways to help wounds heal faster, or even finding a cure.


What does life with EB look like?

It looks like practicing ninja moves before bedtime.


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Our daughter is pretty much like any other four-year-old, activity-wise. She does all the things her siblings do because she refuses to sit on the sidelines and just watch the fun happen. She wants to be a part of the party! And who can blame her?

Granted, there are precautions that must be made. For example, if we know we are going to be in the heat for a while, I come prepared with frozen water bottles and a fan to cool our little princess off. I bring a stroller with us most places in case her feet start to blister. I have a kit in our car with all of the supplies we have at home in case she needs to have a wound cared for while we’re out and about.

We plan our activities and outings around the weather during the summer months; outdoor craziness happens before lunchtime, and then we find indoor activities to do during the afternoons when the heat is at its worst. Overheating can cause more blistering to occur, but if we can work with it in South Texas, it can be worked with anywhere.

I know that when she plays hard, she might get hurt. That’s okay. She has spent too much time being sheltered from normal activity during her lifetime.

Wounds happen.

They. Just. Happen.

And it’s okay. We can bandage a boo-boo or decompress a blister. No problem. The time spent taking care of broken skin is well worth the experience of being a normal kid.


What does life with EB look like?

It looks like swimming on a hot summer day.


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We often encounter curiosity when we are out and about. Sometimes the curiosity is good, and we have the chance to educate and inform. Sometimes the curiosity looks like a kid yelling, “what’s wrong with her legs!” repeatedly in the grocery store while the mom ignores him and he continues to yell all the louder. Sigh.

Julianne is just starting to realize that moments like this happen because of the appearance of her skin, and these moments become a chance to talk about the importance of kindness and for us to reassure her that there is nothing “wrong” with her, that she is beautiful just the way she is. My heart will break as she encounters ugliness in the world. It’s unavoidable, really, and that’s tough to deal with some days.

Epidermolysis Bullosa is teaching us so much about perseverance in the face of adversity and how to love unconditionally, even when someone (intentionally ornot) hurts you.


What does life with EB look like?

It looks like bright smiles.


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The other night I woke up to the sound of giggles rising from the toddler bed beside me. Our daughter was laughing… in her sleep! I had heard many noises come from her during the past 7 months at nighttime… crying, whimpering, yelling, thrashing around, trying to get comfortable in a bed that was bigger than she was used to. But giggles? Laughter?!? It made me smile in the darkness and realize that when it comes to life with EB, laughter really is the best medicine. Laughter covers the moments when there is hurt and reminds us all that she isn’t an EB kid, she’s just a kid who happens to have EB.

She is a spunky, chatty, slightly bossy little thing.

She has the most precious chubby cheeks, the sweetest dimple, and amazingly awesome hair.

She loves to dance, she loves to color, and she loves to eat eggs like they are going out of style.


What does life with EB look like?

Beautifully chaotic, and I wouldn’t have it any other way.

what we’re reading: 9.2.15

September 2, 2015 by nohandsbutours 0 Comments

Hello end of summer, to celebrate we have some great links for you to peruse today!

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


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Andrea looks back on what she has Learned Over the Past Two Years. She shares powerful words which should be seriously considered within our adoption community, “as much as I want to see all of these children be adopted, a family is not doing right by the child by moving forward with an adoption that they feel unequipped for.” Such true words, adoption can be a hard journey, and stepping into it with eyes wide open is so important.

Kelly shares her heart in regard to her daughter’s outward appearance in Scales, Stares and Six Flags. “No longer do I feel the need to shield Jenna from these stares because her skin…her beautiful skin, scales and all…is simply part of who she is. And only a small part.”

Ashley Ann reminisces and shares about her daughter being home for a beautiful Three Years. “Everything is different now. I know her. She knows me. The scared little girl is gone, replaced by a confident, persistent, very opinionated four year old.”

In The Covering of Holiness, Katie wrestles with the disconnect between the church and the plight of the orphan. And she realizes that despite this chasm, despite our sin and our ignorance, we are given the gift of grace, immeasurable and undeserving. “Let’s hold it well.”

Have you watched Clementine’s foot video yet? If you haven’t, you must! And while you are at it, join us in celebrating Clementine making it back home after major surgery and a rocky hospital stay.

And since we are on the subject of cutie patootie little girls, you must go follow DOWNright Worthy, this little one is going places! From her amazing dance moves to her talented dish-towel folding skills, Worthy is definitely one to keep your eye on.


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Red Thread Advocates posted some amazing articles this month, go check out this entire site which is ran by a group of inspiring adoption and orphan advocates. Here are a few highlights from August: Welcome to China; I Was Yours, and You Were Mine-The Day We Met; and Orphanage Visit-To Go or Not To Go.

Pull out the tissues as you read about 2 Boys, 2 Journeys, Reunited by 1 Amazing God! “You know, each of us are on a journey. Our journeys are filled with ups and downs and scary moments of uncertainty that make no sense. Rest assured, the eyes of a loving Father are upon you. His plans for you are good. His attention to detail is beyond comprehension.”

Love Without Boundaries hosted the first ever Life Skills Camp for Older Orphaned Teens, such an amazing and needed program. Go read all about it and donate to support the camp for next year.

Do you need a place to ask parents about specific special needs? Maybe you have a referral and you have some questions about what life might look like. Maybe you’d like to meet other families within the China Special Needs community. The Special Needs Resources Facebook group might just be what you need, go check it out.

Dear Mom of an Adopted Child” is a beautiful read lovingly dedicated to all you mamas who display the “fierce determination. The grit. The fight” every single day as you love and connect with your child.

This initiative is so amazing! Please help us in supporting One Less Orphan’s Lucky Bunny Cleft Kit: “Our plan is to supply hospitals and clinics with Cleft Kits to being given to the family the day of birth. If we can help families get through the first few months and connect them with one of the many organizations offering free surgery we believe we can significantly reduce the number of children abandoned.”


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Hallie on Adoption Day

Hallie on Adoption Day

In China now (or super soon)…
Elli Our Gift From China
More Than We Can Imagine
Blessings from Ashes
Loman Adoption
I’d Rather be Knitting
Childlike Hope

And just home from China…
Bringing Home Anna (video)
Webb Sight by Faith
Quotes of a Boy Mom
Faith, Trust, and Pixie Dust
Happy Family of 5
Bringing Home Pepper
Hendersonian
Vermillion Rules
Strengthen My Hands

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


Thank you for joining us for another What We’re Reading edition, see you again soon!

LibertyNHBOSig

Ayi for a Day: {50 for 50 in 5 weeks}

September 1, 2015 by nohandsbutours 4 Comments

They are oft overlooked much like the children they care for. They live in a place where what you do and how much you make is everything which means they have very little. Watching over and meeting the needs of children with no known roots is hardly considered a career; it’s a job. Some of the ayis do their best to do that job well despite the meager pay they’re given. They braid little girls’ hair, make funny faces to make babies giggle, pursue the child who looks different. Others simply do their duty. All of them are in the hard and obviously broken corners of our world, and they cannot help but be impacted by it.

They go by the name Ayi or, in some places, are all called Mama in painful irony of the purpose of what they do. Their purpose is to ready children for new mamas, to care for children well enough so that they can leave to be cared for by another, living in a seemingly endless cycle of nurture and departure. Surely, most ayis are glad to see a child leave as it means he has a future and will become something he could never become where he is now. We’ve seen ayis clap their hands and laugh aloud at the news that one of their children has a family coming for her. But, we can only imagine that their hearts bear scars as well from all the goodbyes. Those scars run deeper still for those who were once little girls there themselves but never got to say goodbye.

We intercede for vulnerable children, but we often overlook these vulnerable women. His hearts breaks for them as well, as should ours. It is impossible for us to truly know what their days are like, but that doesn’t mean we can’t try to enter in. This effort launched today is to move us towards that and give us an opportunity to crack that door open and enter into the experience of a woman whose heart is not unlike our own.


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Ayi For a Day.


The team at The Sparrow Fund has thoughtfully and carefully assembled 50 kits, each one slightly different in shades and tastes, to engage and unite 50 women in interceding for the ayis in China The Sparrow Fund serves at an orphanage in Shaanxi as well the innumerable ayis all over China. The kits include various items to use over the course of one dedicated day—shoe covers, sleeve covers, tea, chopsticks, Chinese snacks, Chinese money, and more—with specific prayer prompts to lead you in prayer as you do. But, the experience isn’t over at the end of one day. Enclosed in each kit will be a postage-paid envelope you will use to return the sleeve covers to The Sparrow Fund in time to be hand carried to China on October 7th. The sleeve covers you will wear and pray over on your Ayi Day will become an ayi gift and placed on the hands of an another woman on the other side of the globe.

The Sparrow Fund needs 50 women who desire to join their hearts and prayers for the sake of 50 other women in China.

50 kits for 50 women for a donation of $50 in 5 weeks. That’s the goal. The money raised will be put into The Sparrow Fund’s orphan care and ayi care fund. And, the prayers raised will change the world.


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Click on the “Donate” button below to become one of the 50. It’s linked up to The Sparrow Fund’s PayPal account and will go directly to them. Please note #ayiday or “Ayi For A Day” in the notes field when you donate. Your kit will be sent to you next week with clear instructions on how to use it to engage your family and your own heart.




Only 50 kits are available, so don’t wait to join us. And, just to encourage you a little more, the first 10 women who join the effort will find a little extra gift in their kit.


Going to China: Gotcha Day Expectations

August 31, 2015 by nohandsbutours 3 Comments

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Today is the last day of August, which means it’s the end of our two-month feature, Going to China!, as well as our final post in the series. We’ve spent July and August covering everything from travel tips to orphanage behaviors – 23 posts in all. We hope it’s been a great resource, whether you …Read More

Life on Pause: Thoughts on Orphan Hosting

August 31, 2015 by nohandsbutours 0 Comments

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Pause. The best way I can describe the way my life feels right now is that it is on pause. On pause because I met my daughter, spent five beautiful weeks with her, and then promptly returned her to the airport just like I had guaranteed I would do. For me, the whole idea of …Read More

Belinda Waits for Her Family

August 30, 2015 by nohandsbutours 0 Comments

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Belinda is a BEAUTIFUL little girl (Born January 2008) with pink rosebud lips and wispy hair. She gets along well with other children and has a quiet, gentle personality. She especially enjoys playing with other children her age. Her caregivers report that she is very sharp! She is able to count, name colors and shapes, …Read More

The Back to School Post

August 29, 2015 by nohandsbutours 0 Comments

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I don’t think our school district fully grasps the whole paperless concept. I’m staring at a stack of forms they’ve called “children’s homework” that I must complete. Somehow, the paperwork required to send our children to public school each year feels like we’re assembling an entire dossier. There’s even a fingerprinting form somewhere in this …Read More

Going to China: Feeding Concerns

August 28, 2015 by nohandsbutours 1 Comments

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When we were adopting our two new daughters we were not really well prepared for what they could or could not eat. We knew one of the girls was severely malnourished, but we did not understand that it was entirely possible that nobody taught them how to eat or drink. Neither of our new daughters …Read More

Find My Family: Aspen

August 28, 2015 by nohandsbutours 0 Comments

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Aspen is an adorable one year old who has deformity of both legs. He is part of our orphanage partnership program. His left leg seems to more affected than his right leg. His file also reports some mild heart conditions. Aspen can stand holding onto something (as you can see in his recent video) and …Read More

A Back-to-School Letter

August 27, 2015 by nohandsbutours 2 Comments

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Dear Teachers, Here we go! The start of a new year! First of all, you both have my great admiration. I do not know how you do it. The energy, patience, and creativity it takes to shape, mold, and sometimes just wrangle a whole crew of almost-three-year-olds is something I do not possess. I’m so …Read More

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