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.

dingle, party of 9?

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 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

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.

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.

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.