Wednesday, March 18, 2015

a little therapy, a little ballet

Hi, I'm Shannon, and I'm addicted to Zulily. 

When this Whitney Brother's Shape Mirror Wall was available for $129 on the site a month or so ago, I knew it would be perfect for the little girls' room! (It's also available on Amazon for a higher price.) Patu loves her ballet class, and Zoe loves mirrors, plus it would be helpful for physical therapy, so the combination...


Perfection.

The only downside? No pilot hole or fasteners were included to attach it to the wall, only a note recommending that you find someone qualified to safely and properly secure it in place. My solution?


Lee to the rescue!


The little girls "helped" by holding his tools when not in use.


And then? They delighted in his finished work!


*No explanation for the stray screw, hanger, helmet, play bouquet, or other odds and ends on the floor. Welcome to the Dingle casa, where anything goes! 


{Disclaimer: I did not receive anything - product samples or any other incentive - 
for this post. I just really like this product. Also, I know the pictures aren't the best... but sometimes life isn't polished, professional-looking, or pretty, so no apologies.}

Thursday, March 12, 2015

how I say "you will not win" to harsh brokenness

You know I like to write about the beauty we find in the midst of brokenness. But sometimes
it just feels like brokenness.
Not beauty.
Not yet.

That's where I was yesterday. A "you should probably take her to an eye doctor" comment at our last pediatrician's visit turned into a day of unexpected grief at the optometrist yesterday. After the first part of the exam, I knew we were bound for glasses. As a mom, I felt like I should have known something was amiss. But, nope. Nothing.


At that point, many social media friends shared their own stories about not knowing - sometimes until a much later age - about their children's vision issues until they had gotten bad. Those stories made sense. They provided some comfort - solidarity! - as others offered their "I can relate" tales.

Except as the day wore on, I realized that they couldn't. The same comments that had been comforting felt hard and taunting, even though I know they were never intended like that. But for almost all of those dear friends, their children got glasses, and then all was well.

That's not the prognosis for Zoe. She has bilateral stimulus deprivation amblyopia caused by structural deformities in a few crucial places in both eyes. She is very nearsighted due to retina damage in both eyes, caused by an illness her mother had during pregnancy. She is also very farsighted due to astigmatism in both eyes, which also means she has very little depth perception. Because of all this, she has significantly underdevelopment neural pathways for visual processing, so even once her glasses arrive, her brain won't know what to do with the clearer visual input at first.

So the plan? Wear glasses during all waking hours for the next three months and then return to the doctor in June to determine how much the corrective lenses are helping her gain visual functioning and whether or not additional interventions might be helpful.

While we are hopeful that her vision will improve, we also like to prepare with what research says. Things like this,
Stimulus deprivation amblyopia is the most severe amblyogenic case. The loss of vision is usually severe and responds badly to treatment.
In other words, we'll do what we can, but we also have to be fully prepared that her visual impairments aren't going to go away with a pair of glasses, not on this side of heaven.


(I think that picture should have probably come with a cuteness overload warning, huh?)

I'm not going to lie, y'all. The adorable factor of our Zoe in spectacles wasn't enough to touch the heartsickness of such unexpected news.
Let me be clear: 
I was mourning for Zoe, not about her. Never about her. She is perfect, but the world is broken. Yesterday, it felt a little more broken than usual. 
So after I put the girls down for their rest time, I sat at our dining room table and the dam broke. I can't remember the last time I sobbed like that, and then... the skies opened and poured down, and it felt like God was saying, "my heart is hurting over this brokenness too." Whether that theology is right or not, in that moment my raw heart found rest in our Creator, as my tears and his rain flowed freely.

And then I woke up this morning ready to figure out what's next. I like to do. I like to fix. I like to solve. And? While we're formulating a plan, this situation doesn't really lend itself to all that.

But I realized that while I can't kiss this brokenness and make it all better, I needed to do something. As I begged God to tell me what something I could do, I realized that my way of flipping the bird at the world's brokenness could be to alleviate some of it somewhere else. My friend Chris and the rest of the team at Help One Now is doing just that around the world, so we donated $189 - the same amount we paid for Zoe's glasses - to their brokenness-fighting work.

No, supporting Help One Now doesn't make our latest challenge any easier, but it's my way of saying YOU WILL NOT WIN to this harsh brokenness. I can't restore her sight, but I can take action toward restorative work elsewhere.

So can I be so bold as to say go and do likewise? No, you don't have to give to Help One Now or anywhere else (but if you can? why not?), but do whatever something you can do - an encouraging text, a meal for someone just because, a smile to a stranger who needs one, whatever.

Because the brokenness doesn't win. We know it won't. Even when it feels like it reigns for a time, I truly believe God is the champion.
Of Zoe's story.
Of my story.
Of your story.

He wins. 

Wednesday, March 11, 2015

our first experience with a home health provider

I know not all kids qualify for in-home care due to their disabilities, but some do. Zoe does. 

I tried to search blogs of other BTDT (been there done that) mamas to get advice before we started, and I realized almost no one talks about this in public spaces. So I'm donning my truth teller hat to talk about what this has looked like for us thus far.



first, let's back up a bit to explain the program itself...


Zoe's level of disability qualifies her for CAP/C services in North Carolina. Here's how that program is described by the NC Department of Health and Human Services, which oversees CAP/C:
The Community Alternatives Program for Children (CAP/C) provides cost-effective home care for medically fragile children (through age 20) who would otherwise require long-term hospital care or nursing facility care. The program contributes to the quality of life for the children and their families/caregivers, while providing care that is cost-effective in comparison to the Medicaid cost for institutional care.
Because Zoe has no independent mobility skills (i.e. walking, crawling, scooting) and no functional life skills (ability to dress herself, to feed herself without assistance, to be potty trained anytime in the foreseeable future, or to be bathed the same hands-on support that babies need), she qualifies. A few months ago, she was approved, retroactive to her third birthday (which happened to be the day all of her paperwork was submitted).


So what does that mean? CAP/C services include case management, home health care, and supplies. The case management means someone helps to answer my questions and make sure we have what we need. The supplies include diapers delivered to my door - yay for not having to pay directly for those anymore! - and an adaptive trike of some sort every so often and a few other things. The home health care gives a certain number of trained caregiver hours each week, the level of care determined by the child's needs (Zoe gets the lowest level - CNA - while some kids need nurse level care) and the number of hours based on a combination of the child's needs (mainly, is overnight monitoring necessary? no, not for us) and the parents' work schedule (because paid childcare is often unavailable or unaffordable for kids with complex needs).

And then the biggie for us - CAP/C coverage also makes a child eligible for Medicaid coverage, not based on income but on disability, which means all the therapy needs Zoe has can be covered despite the annual caps set by our private insurance. She needs weekly private therapies, so we need that coverage to give her all she needs. (If you're a numbers sort of person, Zoe is allocated 30 visits a year of PT & OT - not each, combined - but she needs PT three times a week and OT once a week outside of school, so the gap is wide between what is covered and what is needed before Medicaid.)



our home health care experience so far


Our home health provider started a week and a half ago. It's been weird, for sure. I'm a stay-at-home mom, and having another person there to support Zoe is a huge help but also a huge change. Zoe is playing more and watching TV less, because someone is readily available to help her move and play and be a typical three year old in all the ways she wants but her body doesn't allow without assistance. I really like Tina, the CNA we hired, and it felt pretty natural and not as awkward as I thought it might. I felt like she was as good a fit for us as we could have asked for, and all of the kids adore her.


All except for Zoe, that is, which is why yesterday was Tina's last day with us.

Our plan from here on? We're taking a break for now, and then we'll find our own people who Zoe already knows and trusts. Our friend Kayla is getting her CNA and will work for us this summer while she's home from college. Then our friend Meghan, who is a student at Meredith and who hopes to be a child life specialist in a hospital setting, is planning to get her CNA too so she can work with us during the school year. Even my bestie Angie is probably going to get her certification.


Should we have tried harder to make it work with Tina? Some would say yes. I think Tina thinks we should have. But the reality is that Zoe joined our family by adoption after never having parents care for her before us. She had to learn to trust us and attach to us. She does fine with caregivers and teachers when we aren't present, and I know she would have done fine with Tina if I wasn't at home too. But Zoe knows now who Mama and Dada are. She knows our role. She knows the access she has to us. And she doesn't want someone else filling that role, which is what it seemed to her like Tina was doing.

So was the extra support helpful? Sure. Will it be more complex to coordinate that help with friends whose availability will fluctuate instead of with an agency that sets hours? Yes. But nothing is worth damaging the hard-fought attachment she has with us. Nothing. 

Sometimes the harder road is the better road.



so this is not the post I thought I'd be writing


I thought I'd be sharing about how we manage life with a home healthcare provider - how life has changed, how it's stayed the same and how we're all adjusting. But that's not our story just yet.

Our story now is one of sharing how these beneficial services are working - and not working - for us right now. I've written before about accepting government services in a world that often judges or shames people for doing so. I think part of being a truth teller is standing up and saying, "Hey, y'all, we're the ones you're talking about here. We're not some faceless, nameless stranger whose story you think you know. We're flesh and blood and brains and heart, and the current state of healthcare in this country means that kids with disabilities - like our Zoe - need some public supports to have all their needs met."

Because she's worth it.



Wednesday, March 4, 2015

dingle, party of 9?

We said we were done.

We were wrong.

We're in process to adopt again.

No, I'm not kidding.

What changed? Well, you know we’re committed to keeping siblings together. That’s why we adopted three at once last time. So when we found out about Zoe’s younger biological brother who is currently living in an orphanage, that's what changed.

We’re going back to Taiwan.


When they began listing Zoe's brother for international adoption, we were contacted. We said yes. Right now, we’re in the early stages, so there’s a possibility something could change. That said, we’re far enough in that we feel safe sharing with confidence that this process will end in Zoe and her brother growing up as siblings in our family. (In other words, if this were a pregnancy, we’d be entering the second trimester - not completely out of the woods for complications but far enough along that the odds of everything else going smoothly are pretty good.) 

I can’t share his age, but he’s a baby. I can’t share his picture online, but we’re smitten. We would have said yes even if this weren’t the case, but his development is typical so far. Laws in Taiwan have changed since we adopted Zoe, plus he is in a different orphanage in a different county which means different facilitators handling the paperwork there and a different judge hearing the case… in other words, timelines are hard to estimate.

And his name? For Taiwanese-Americans, it’s common to have an English name and a Mandarin Chinese one. So just like we gave Zoe her English name and kept her Chinese name as part of her legal name, we’re planning to call this sweet boy Samuel with his given Chinese name as a middle name.

I think that answers most of the pressing questions. 
Side note: One question I’ll never answer is anything about their first family, so please don’t bother asking. I’m not going to tolerate speculation about, judgment of, or prying into their first family. Lee and I know the circumstances behind first Zoe and then Sam needing a new family, but that is not our story to tell. So, please, don't ask.

Oh, and fundraising… nope. I’ll write a whole post about the details, but we have all the money we need. This adoption is covered, as is a small addition to add a bedroom, small bathroom, and larger laundry area (with two washers and two dryers! swoon). An inheritance received late last year has met all those needs.

Finally, adoption is a family affair, so we wouldn’t have said yes unless the kids were on board too. They’re ecstatic! (And they’re lobbying for newborn twins after this, and then “can we adopt from another warm place after that, because I’m tired of being cold?” and Robbie wants to know if we can adopt from another planet… and, no, none of those plans have been affirmed by us. We’re done. Seriously. I mean it. Unless we aren’t. Because we’ve been “done” before, and now...)


My favorite part of all this? Every kid will have a biological sibling in the family once this adoption is complete. Every kid will have someone who mirrors them. Every kid will have someone who shares a unique part of their history. Every kid will have someone else who can relate in a way that no one else can. Goosebumps, y'all. What a gift!

We know this is crazy, but I hope you’ll share in the joy of this story we never would have crafted on our own. We said our family was complete, but God didn’t agree. We know He writes the best stories, so we’re looking forward to what’s in store.

#dinglepartyof9 coming soon, God willing!

from L-R: Patu, Zoe, Robbie, Patience, me, Lee, Sam, Jocelyn, and Philip

Tuesday, March 3, 2015

the ministry of presence,
aka "a lesson from Christopher and Maroon 5"

"I don't know how to help."

I hear that a lot. I say that a lot. I feel that a lot.

Just this week, a friend of mine whose son has complex medical needs is recovering from a hysterectomy. I brought meals, but that felt inadequate somehow. Another friend is in the hospital with her warrior son who is recovering from a new trach, whose heart defects are proving to be more complex than they thought, and whose condition needs to stabilize more before they can have schedule open heart surgery. Just down the hall at the same hospital, one of my best friends from high school is camped out with her little three-year-old rascal whose rare immune disorder renders his body unable to fight infection; last week that meant that all of his baby teeth had to be removed, and in a few weeks, that means he'll be getting a bone marrow transplant.

And I don't know how to help.

But Maroon 5 gave me a sweet reminder this morning.

source
That handsome boy in the middle is 10-year-old Christopher Warner. Last week, his teachers made a video to share how much Christopher loved Maroon 5 and Adam Levine, and a local radio station made it happen at their concert last night. Upon meeting them backstage, Christopher was so excited, he nearly had a panic attack. He had to lie down because he was so overwhelmed. It could have been an awkward moment, but?

The whole band laid down with him.

Goosebumps, y'all.
Just when we thought we couldn't love Adam Levine more, right?

When we don't know how to help, I think this is the answer. I think the ministry of presence is more than enough. Just being with someone speaks volumes of kindness.

Maroon 5's simple act with Christopher reminded me of a story my friend Emily Colson, author of Dancing with Max and single mother to an adult son with autism, tells about a meltdown Max had as a child in the grocery store one day. As he laid on the floor and Emily held him, she watched the wheels pass as other shoppers strategically avoided them with their carts. And then, she saw a pair of shoes. Looking up, she expected judgment, but the woman simply said, "Can I help?" Emily didn't know what could help, so she expected the woman would just leave. After some time passed, she noticed the shoes were still there. When Emily looked up again, the woman attached to what Emily calls the compassionate feet of waiting grace was still there. "I will wait until you can think of a way I can help," she said. And she did.

We like grand gestures. We like quantifiable measures of helpfulness. We like concrete solutions.

But, sometimes, our presence is a ministry of its own. Sometimes just being present is a gift like nothing else.

And Maroon 5 both gave and received a precious gift last night, as they were present with Christopher while he was present with them.

Monday, March 2, 2015

a letter to Mattel from my daughters

When your eight year old daughters get riled up about injustice and ask, "Mommy, can we use your blog for something?" the answer is obvious: yes.

They didn't know I've already written about why diversity matters in dolls or successfully pushed back on Amazon for their whitewashed selection of sale Barbies. My girls just knew that a new Barbie movie is coming out this week. When they saw all white faces on the movie's cover art, they were frustrated.

"When is Barbie going to have a black girl as the main character?" I don't know, I told them.
(I thought, probably never. But I didn't say that because I try not to pass down too much of my cynicism to them.)

"Have they ever?" I knew the answer, but instead of just giving it to them, we sat down together to figure that out. We looked at the cover art for the 29 Barbie movies made since 2000, most of which can be found here. Our findings? Only two included black Barbie characters on the front (6.9%), only one of those did so prominently (3.4%), and none featured black characters in the primary role. We clicked through to find out who was the voice actor for the only featured black Barbie on cover art, and the girls were dismayed to find that a white woman spoke for her. Then we looked up racial demographics of kids in the US and found that about 15% are black.

That's when their question came about using my blog.
(I'm pretty sure they think I have far more readers than I do!)
And that's when this letter was written.


Dear Barbie makers,

There are only 2 Barbie movies that have black and white girls as main characters, and 27 movies with just white skin main characters. 15% of the kids in the US are black, and it is not fair. 0% main characters are black and 7% black characters are on the front cover. Will you please make more movies with black people who are main characters and more black people on the front cover? Can you also make black people [in your movies] more dark please? We want you to do this because we are sisters, one white and one black, and we are a little upset about this, and all of the black people in our family are more dark.

From, Jocelyn & Patience

P.S. Please make darker skin black dolls too, and more Asian dolls because our sister is from Taiwan.
We'll mail it tomorrow, but I know sometimes the power of the internet can be more effective than snail mail. Plus, they asked specifically for me to share it here.

So, Mattel, what do you say? After all, I'm not the one asking.

photo by Rebecca Keller Photography

They are.

Wednesday, February 25, 2015

the lie of "I could never do that" or "I can't imagine"

Anyone who knows me knows I'm a talker. At the Global Access conference last week, my friend Mike complimented me as he passed me mid-conversation yet again, saying something like, "Look at your networking skills! You're always in a new conversation with someone else every time I see you!"

My reply? "Or maybe I just like to talk a lot!"

Confession: Mine is probably closer to the truth.

But sometimes I'm quiet. Or to be more accurate, I talk about the things that don't matter so much while staying silent about what's really on my heart.

When I do lay it all on the table -
the challenges of scheduling multiple therapy and specialist appointments every week, the uncertainty of knowing what Zoe's future looks like, the concerns about racial tensions in our country as the white mother of children of color, the difficulty supporting two second graders with drastically different educational foundations such that homework times can feel hellacious, our medicine regimen of 2-4 daily inhaler or nebulizer treatments and twelve pills a day between all of us and one injection a week and 4-5 physical/occupational/speech therapy sessions a week outside of school, my meal planning for a large family, and so on 
- the reply is usually some variation of "I could never do that" or "I can't imagine."

But if it were your kid, you could. You would.

And the look on your face usually tells me that you did just imagine what that might be like but you're afraid of offending me with what your imagination showed.

I wouldn't mind all of that, except that after the "I could never..." or "I can't imagine," the conversation usually ends. A long pause or a quick excuse tells me my truth was a little too truthy for you. Friendships are hard enough to come by in the midst of mothering a gaggle of kiddos with varying needs. At the risk of sounding pitiful, here's another truth: I need you. And maybe you need me too. We were created for community, after all.

We can't be truth tellers if we're afraid of the truth, if we're afraid to admit that, maybe, you just don't want my struggles or you're glad they aren't yours but that you love me and are glad to know what my reality is and are willing to listen any time I want to talk. (And that's okay, because I don't really want your struggles either, if I'm telling the truth.)

I like to talk. I do. But lately I've been convicted of my laziness with words at times. I don't think anyone who has ever said "I could never..." or "I can't imagine..." is intentionally lying - I know I wasn't meaning to when I used to say them - but a lazy lie lacks truth all the same.

Let's be truth tellers, y'all. Part of that is giving others permission to tell their truths, even the uncomfortable and hard and messy ones.

speaking of mess, here's a little of mine. i snapped the pic because i was struck at how beautiful my mess looked in the late afternoon light. isn't that just how it is, though? all our brokenness has beauty in the right Light.

Monday, February 23, 2015

let's be truth tellers and not mask wearers

When did the people of Truth (myself included) stop being truth tellers instead of mask wearers?


What if... 

...we stopped presenting polished versions of ourselves and let it all out, even those parts the world says we should hide?

...we cared less about our kids' behavior and more about their hearts?

...we sought to love people rather than impress them?

...we valued differences instead of ignoring, dismissing, or ridiculing them?

...we really truly wholly believe that every person - including you and me - has a story worth sharing and a voice worth hearing?

...we answered honestly when asked, "How are you?" and
...we were ready and thankful for genuine answers to that question?

...we acted like God's purpose in each of us mattered so that we stopped trying to pretend to be someone else?

...we dealt with our own logs instead of attacking the specks of others?

...we offered up our broken pieces to create a beautiful mosaic instead of hiding each chip under the rug to never shine?

What if?

In my writing and speaking and friendships and family, God is stirring up great things. I'm realizing more and more that I need to stop hindering that work by trying to be who I think I should be instead of who He made me to be. To be honest, I don't know exactly what that looks like, but I do know one thing for sure: I want to be a truth teller and not a mask wearer.

Who's with me?

Monday, February 9, 2015

where I'll be writing & speaking in 2015

This blog has been quiet, in part because of the holidays (Christmas break doesn't offer a lot of writing time!) and bouts of sickness (when does cold and flu season end?) but also because I've been elsewhere online. To find me when this space in quiet...


conferences

Global Access Conference
presented by Joni & Friends
February 17-20, near LA

The Global Access Conference will bring together disability leaders, ministers, educators and practitioners from around the world. It’s an unprecedented opportunity to share experiences, forge strong working relationships, and learn how to practically and effectively promote disability ministry in the Christian community.

I'll be leading two sessions

  • The Special Needs of Foster and Adoptive Families and 
  • What are some practical implications of the verse "Blessed are the nations whose God is the Lord? (a roundtable discussion follow-up to Nick Vujicic's main stage talk). 



Accessibility Summit
McLean Bible Church
April 17-18, near DC

I'm not speaking this year, but many good friends will be - Matt Mooney, Harmony Hensley, Jolene Philo, Barbara Newman, Amy Kendall, Marie Kuck, Jackie Mills Fernald, and Emily Colson - so I'm excited to learn, enjoy, and recharge at this well-established special needs ministry conference. I am, however, moderating a pre-conference panel of some AMAZING leaders titled Tips, Tweaks, & Tune-Ups for Sunday School Curriculum & Classrooms. For more information, click here.


CAFO 2015
Longhollow Baptist Church
April 30-May 1, Nashville

The Christian Alliance for Orphans’ CAFO2015 Summit inspires and equips Christians to care for orphans with wisdom-guided love. The CAFO Summit has become the national hub for what Christianity Today called, “the burgeoning Christian orphan care movement.” Last year’s conference drew 2,600 foster and adoptive parents, orphan advocates, pastors and leaders from 35 countries.

Last year I spoke about Making Your Church a Welcoming Place for Families with Special Needs, and this year I'm following that up with a session titled Post-Placement Church: Children's and Youth Ministries That Are Safe Places for Special Needs.


Southeast Disability Ministry Summit: Irresistible Church

Christ Covenant Church
September 18-19, Charlotte

I'll be joining John Stonestreet and Emily Colson (who is truly one of my favorite people in the world!) at this amazing conference hosted by Joni and Friends Charlotte. My workshops will be on Joy Prom 101, which I'll co-lead with Katie Honeycutt, and The Special Needs of Foster & Adoptive Families. This conference will have a substantial ministry track as well as smaller family/caregiver and worldview tracks. If you're in the Southeast, you don't want to miss this!


Together for Adoption 2015: Simple
Summit Church
November 5-7, Raleigh

I'm not sure if I'll be speaking at this conference this year, but since it's in my hometown, I'll definitely be there!


*More to be announced soon*
as I'm in talks with a few other adoption, women's, and children's ministry 
conference organizers to firm up those opportunities
(Side note: I'm available to speak on a variety of topics related special needs parenting, adoption/foster care, disability ministry, and extending grace to ourselves as women, so please contact me if you're looking for a main stage speaker, workshop presenter, or panel member for an upcoming event. That said, I do have to be selective about speaking engagements because of family and local church responsibilities that come first, so please understand that I turn down great opportunities each year and yours might have to be one of them.)

regular contributions and guest posts


I also contribute guest posts elsewhere, and I'll do my best to link up to them more regularly here.

(Also, I'm starting to use my Facebook and Twitter
pages more to interact with readers, 
so please like it if you haven't yet!)

So please forgive me for being a stranger here from time to time! I hope to see you around elsewhere and, of course, here too. As a matter of fact, I have a bunch of new posts coming soon that you are not going to want to miss! (Way to leave you in suspense, huh?)

Wednesday, January 28, 2015

Our siblings have been home for more than a year. Their siblings still wait.

I've never written this sort of post before. I've never devoted this blog to criticizing the US government's handling of orphan visa cases. Usually, when the US prolongs a case to make sure every aspect is ethical, I am thankful because I witnessed unethical practices by others during our time in Uganda. I never want to see American desires used to trump or ignore necessary investigations to make sure a child truly needs international adoption before we remove him or her from everything familiar to join a family here.

But I know this family. I know their story. I know their integrity. I know their willingness to walk away if this adoption wasn't in the best interests of the girls. And knowing all that, I know it's time to write this post in hopes that it can help draw attention and bring help to their case.


In May 2009, Mary and Comfort entered orphanage care in Ghana, their mother unable to care for them and their father having left years before. In November 2012, the mother terminated her parental rights. And in 2013, Gretchen and Doug Hanna began an adoption. They were matched with Mary and Comfort, who were ages 7.5 and 6 at the time. With the support of their two older children, the Hannas began the process to become Mary's and Comfort's family.

their referral picture, early 2013

A couple months later, we found out about three siblings in another African country. They were 6, 4, and almost 2 at the time. While they were waiting for family, they hadn't been living in an orphanage too terribly long. They hadn't been waiting for years like Mary and Comfort had. Like our friends had done a few months prior, we said yes to being their family.

our referral picture, spring 2013

Both sibling sets needed a new family. Both sibling sets met the US criteria for being considered an orphan, which are that the child "does not have any parents because of the death or disappearance of, abandonment or desertion by, or separation or loss from, both parents OR has a sole or surviving parent who is unable to care for the child, consistent with the local standards of the foreign sending country, and who has, in writing, irrevocably released the child for emigration and adoption."


But now our three siblings from Uganda are here with us and have been for 14 months, while Mary and Comfort still wait. Until their denial, every step of Gretchen's and Doug's process was ahead of ours - referral almost three months earlier, court five months earlier, and embassy interviews one month earlier. Then they screeched to a halt, because the USCIS said the girls' biological father needed to give consent. Nevermind that he had left the family long ago, nevermind that their biological mother gave her consent, nevermind that she and others testified that the father had intentionally abandoned them and could not be found, nevermind that USCIS investigators couldn't find him (nor could private investigators hired by the family). Nevermind that the courts in Ghana had declared Mary and Comfort to be legally Hannas and deemed all requirements for adoption to be met. And nevermind that denying these girls a visa wouldn't make their father appear or decide to parent.


No, a refusal to issue a visa just means that Mary and Comfort still wait for a stable family. Meanwhile, our Patience, Philip, and Patricia have been in our home and family to celebrate two Thanksgivings, two Christmases, one Easter, one summer, and one birthday each with second birthdays right around the corner.


Meanwhile, Doug and Gretchen have visited Ghana, assisted in investigations, paid for their own investigations, responded meticulously to every request for information from the USCIS, found foster homes to care for the girls until they can come to the US, and connected with them via Skype whenever that's possible.





In case you're wondering about the adoption ban in Ghana, that doesn't apply to this case. They were finishing the adoption just as the ban took place, so absolutely everything is legal according to the laws of Ghana and the policies of the US. In fact, the Hannas received a letter from Social Welfare of Ghana assuring them that it was fine for the girls to be adopted and asking the US to grant their visas.


Yet, they wait.




I want to issue a call to action here, but I'm not really sure what it should be. As Gretchen said in her last blog post about this, any advocacy can help. So if you're willing, contact elected officials (especially if you already have an established relationship there) or media sources (see here for one media appearance they've already made). Consider sharing this post in hopes that it will catch the attention of someone who can help.

And pray for progress, please. Our children have been home for more than a year while theirs still wait. These girls have been without a family for nearly six years and can't yet join their legal family.

I'm praying and writing this in hopes for some change to bring their wait to an end soon, because it's not right that our family picture looks like this


while theirs looks like this.


Friday, December 12, 2014

Firefly's new home therapy tool:
THE PLAYPAK!

I saw this and became obsessed with it immediately. All special needs parents know that moment when we see or hear about something and think, "THIS!" This is a tool or strategy or help that can serve my child well.

For us, the Playpak by Firefly was that item.
(We also own the GoTo seat and Upsee, also made by Firefly. I'll include two shots of at the end of this post, but they really deserve features of their own, so those will come in due time.)



We can use it for tummy and back activities too, but the best help the Playpak offers Zoe is in sitting. All the pieces can be configured in different ways, depending on the child and the purpose. For example, I wanted to stretch her abductors in addition to working on sitting, so I used the orange piece to spread her legs into a prolonged static stretch (and also used on knee immoblizer we already had to keep her knee from bending up and out of the stretch).


Zoe doesn't sit independently yet, but her trunk control is pretty good and her core is growing stronger day by day. With so little stability on her own, sometimes sitting progress hits a plateau, and I'm confident the Playpak is going to be just the external stabilizer she needs as she learns to do more and more on her own.


Prior to her SDR surgery, the tightness in her hanstrings rotated her hips forward when sitting, causing her back to reflexively pull back. (Note: the blue therapy bench in several of these pictures is a different product, but I'll link to that below.)


Now that spasticity is gone, but her body has to un-learn that reflex as it gets strong enough to sit without support.


This is part ab workout system, part seating support system.


The best gift the Playpak gives Zoe? Independence. 



Thank you for that, Firefly.


(Even if we do use that independence for snacking during Barney.)


The Playpak isn't just for passive sitting, though. For this next series of play pictures, I used the strap instead of the larger curved piece so that Zoe could lean forward more.


All the pieces can be positioned as your child needs, using secure velcro.


How secure? Well, for the first time in Zoe's life with us, I left the room to do a couple things while she was sitting and playing.


I've never been able to do that before. She's never had the freedom to just sit and play with her sister, something most three year olds have been doing for quite some time.


THIS. This is a beautiful first, y'all.


Behind Zoe in the picture above, you can see a few pieces we weren't using this time. To give a little more flexible support, I used the orange piece behind her back, setting aside the small yellow support piece, and the yellow strap in front instead of the green curved piece. This time, we also didn't use the blue head pillow which is best for activities done when lying down.


She felt secure in playing without thinking too much about sitting, which is exactly how kids ought to feel.


The Playpak looks bright and fun and welcoming, so her sister wasn't intimidated by it at all. In other words, it's a help and not a barrier to playing with peers!


(Our sweet girls have no idea that every bedroom shared by three year old sisters isn't full of therapy equipment!)


Such precious smiles!


Such secure sitting!


Such fun play!


Now to the details: the Playpak includes a carrying case that doubles as a mat. Inside, the red horseshoe, green horseshoe, orange support piece, yellow support piece, yellow support strap, and blue head cushion are packed in the mat, which also includes loops for toys to be attached.


All of the pieces fit together


so they can be zipped and carried easily.


Seriously, the case is ultra light and easy to transport. I was skeptical about that. But, truly, this whole thing can be easily transported from place to place.


The outer part includes a few small pockets, and so far the manual is the only thing I regularly tuck in there. This booklet is helpful with lots of tips and illustrations, so I like to have it easily accessible.


And Firefly's slogan? It's not a gimmick; it's honest. What they make makes so much more possible for my girl.



To learn more about the Firefly products shown here...
About the Playpak ($449)
About the GoTo Seat ($265-299, depending on size, available in pink, green, and blue)
About the Upsee ($489, available in different sizes and colors)
To buy any of those products or others from Firefly

Other products...
LiteGait harness system (contact them for a quote)
LiteGait GaitKeeper Mini treadmill (contact them for a quote)
Kaye adjustable therapy bench (shop around for the best price; ours was $153 from Amazon)

Disclaimer: This Playpak was given to us from Firefly for review purposes, but my opinion is all my own and I gave no guarantees of a positive review.