guess who is legally a member of our family?
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Signed. Sealed. Delivered. They're ours.
Read Morea little therapy, a little ballet
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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.}
how I say "you will not win" to harsh brokenness
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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. Additionally, she has myopic astigmatism of 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 might not 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,
(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.
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. Additionally, she has myopic astigmatism of 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 might not 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.
our first experience with a home health provider
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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.
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:
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 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.
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.
dingle, party of 9?
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Note: I'm keeping this post up, even though our adoption plans changed. Part of me wants to pull all the posts down. I want to erase the hard. But? I think God purposed the hard for our good. And I believe all the parts of our story are worth telling. So, knowing that this and this and this and this all tell the end of the story so far, here's the start of the story I thought was coming...
We said we were done.
We're in process to adopt again.
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 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!
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| from L-R: Patu, Zoe, Robbie, Patience, me, Lee, Sam, Jocelyn, and Philip |