Monday, November 24, 2014

our first second

This has been a year of firsts. On October 14, 2013, we were first together as a family of 8. A few weeks later, we were first recognized legally as a family by the high court in Uganda. And one year and two days ago, we landed on US soil, for the first time for our newest three. Since then here's a sampling of more firsts we've shared:

  • first time in a car seat
  • first Thanksgiving
  • first birthday party of a friend, at which Patience whispered to me with alarm, "Mommy, why they put fire on the cake!?!"
  • first Christmas with a tree and stocking and gifts and such
  • first birthday celebrations as a family followed by first birthday parties with friends
  • first tacos, pizza, hamburgers, hot dogs, Sprite, and more
  • first Easter
  • first 4th of July
  • first days of school for most of them
  • first trip to the state fair

And now as Thanksgiving rolls around, we're experiencing our first second as a family of eight. Instead of choruses of "what's this?" and "why we do that?" they're asking, "Are we having turkey again this year?" and "Who is going to join us?"

(Side note, local friends: If you don't have anyone to celebrate with, there's a spot at our table for you on Thursday. Seriously.)

Instead of firsts, they know traditions. They know family. They know what it is to be Dingles.


When we took our family pictures, we tried to move the tombstone from the background but it wasn't budging. Our photographer offered to edit it out, but I said no. In so many ways, our family is marked with great losses mix in with great gains, and it just felt right to have a symbol of brokenness in the background of our present beauty. We were their first second, as in their first second family. In a perfect world, their first would have been their only, and as we rejoice in our firsts and in this transition into our seconds as a family now, we don't forget the pain interwoven with our joys.

Unlike this second Thanksgiving, though, which will be followed by a third and a fourth and so on, they won't have a third family. They're secure now. We're stable. One year, one month, and a couple weeks after they first met us, we're familiar to them now.

And we're thankful.

Friday, November 21, 2014

when unexpected grief hits in special needs parenting {part 2: preschool edition}

The start of special education preschool is looming for Zoe, and I'm feeling an unexpected sadness. Yes, some of it is the same bittersweet brooding that came with sending our oldest four to school for the first time, but that's not all of it. This feeling, my friends, is that special needs parenting grief I wrote about yesterday.

Let me start with a little context...
  1. None of our other children have gone to preschool: for Jocelyn, home was the best place for her learning and for me since she was my first and I was soooooooooooo not ready for her to start school. for Patience, she wasn't in our family through the preschool years. for Robbie, his epilepsy wasn't controlled enough for preschool plus we were spending part of fall in Uganda. for Philip, he joined our family no long before he turned 5 and our focus was on family attachment. for Patu, she's 3 now, and Lee and I have always said that if we do preschool, we'd wait until age 4. Meanwhile, Zoe just turned 3. She won't enter kindergarten until the fall of 2017, which means she'll have almost 3 full years of preschool.
  2. By federal law, kids with disabilities are guaranteed educational services from birth through age 21 if they have need for that support. Until a child turns 3, those services are usually through an early intervention program in which supports (usually a physical therapist or speech therapist or occupational therapist or feeding therapist or developmental therapist or some combo of those) come to the child's natural environment, which was home for us but can be a daycare center or somewhere else for other kids. At age three, services transition from meeting IFSP (Individual Family Service Plan) goals through early intervention to addressing IEP (Individual Education Plan) goals through the local public school system. Zoe is 3, so that's the transition we're in right now, with a slight delay in her start due to recovery from her surgery. For preschoolers with IEPs as extensive as Zoe's is, placements in our school system are usually in a part-day class for 2.75 hours Monday through Thursday or in a full-day class for 6.5 hours Monday through Friday. Technically, Zoe's IEP is for a part-day class, but the school that's the best environment for her is a full-day program, so she'll start half days Monday through Friday for this year and then probably move to full days or close to it in the fall. 
In other words, preschool hasn't been a given in my book for my other children. Furthermore, when we did consider and tour some preschools for Jocelyn before deciding not to go that route, I felt a sense of agency I don't feel this time around. I could say yes or no. I could pick anything I wanted for her. The options were wide open for which days, which hours, and which environments for her early education.

This time, we know Zoe will benefit from special education preschool, so that's not the struggle for me. Instead, my conflict stems from feeling like my social and opinionated yet immobile and largely nonverbal kid might not be understood by her teachers or classmates. We see a beautiful, spunky, bright girl when we look at Zoe, but most of the world sees a wheelchair for movement and an iPad for communication and assume that she is less than. She is not. 

For early intervention in our home, I could be there to protect her and help everyone see her just like we do. For schooling outside of our home, I can't. That lack of control definitely contributes to my sadness.

(Friends, please stop yourself if you're tempted to comment, "Oh, I felt just like that when my typically developing kid went to school, so this is normal." No. I know what you felt because I felt that too with my other four who are in school. Comments like the example I just gave can be hurtful because (a) those words minimize the extra challenges special needs present and (b) remarks that minimize our realities dismiss us and our emotions. Yes, what I'm feeling is similar to what parents of typical kids feel when their darlings start school, but there's an extra layer... and that layer feels particularly heavy to me right now. No, while there are some similarities, it's not the same.)

I know some of my grief flows from our experience at our first pick school. We went there, we met the director of the center, we met the coordinator of the program, we took a tour, and all was well. They called to schedule a new parent orientation and a new student home visit, and while we postponed putting those on the calender until after her IEP was finalized, everything was perfect and positive and progressing. Until the people at that center who I had talked to in detail about Zoe, who had met her, who knew exactly what her strengths and weaknesses and needs were, changed their minds and, instead of having the decency to communicate their decision to me after all our prior communication, made the director of preschool special ed services do so. Basically, they didn't want to accommodate a child in a wheelchair, and they weren't adult enough to tell me that themselves, instead choosing to hide behind someone else who broke their bad news to me. Because they are a private center that contracts with the district to provide a few spots for kids with IEPs, what they did is completely legal. 

And I was left feeling like they saw my girl as less than. She is not.

Obviously if that's their attitude, then they aren't the right place for us anyway. (And not that I'll ever do it, but I'm cheering myself up a bit with an image of pulling a Pretty Woman "big mistake!" moment of bringing Zoe by someday to show them what they missed out on.) 



This round of grief is a little about the lack of choices we get for preschool for Zoe as compared to what I had for Jocelyn but it's even more about my sadness for a world who views my girl and others with special needs as less than. They are not. 

Sometimes the grief of special needs parents is about what our kids can't do or won't ever do, like I shared yesterday. Other times, like now, we grieve for all the people who miss out on how absolutely amazing our kids are. They are so much more than diagnoses and labels, so much more than medications and equipment, so much more than differences and IEPs. Zoe is clever, and she has a wicked sense of humor, and she loves Barney, and she can belt out parts of Let It Go, and she adores her older siblings... and she also has cerebral palsy. I'm saddened because some people will fixate on the last characteristic in that list and then choose to miss out on all the rest. 




She prays with her sisters after school, and she loves all primates, and she demands to be in the middle of all the activity in our home. Zoe is so much more than cerebral palsy. She is. 


Thursday, November 20, 2014

when unexpected grief hits in special needs parenting {part 1: the diving board}

In our minds, Zoe had cerebral palsy before she even had a face. We had medical information and MRI images of her before we ever saw her picture.

Because of that, I used to think I'd get a pass on grief in special needs parenting, at least with Zoe, because I never had to reconcile my dreams for a child with a diagnosis that came later. Disability wasn't a surprise that came after we were already in love with her; we fell in love with a little girl who would become our daughter who also happened to have CP. A lot of special needs parenting comes from grieving what might have been in the absence of a diagnosis' limitations, and I thought knowing her disability from the first moments we knew her - before we even saw a picture of her, actually - would eliminate that.

I didn't realize that watching other kids her age would sometimes catch me by surprise with a grief that she can't do a lot of fun little girl things that other kids can.

Part of why I didn't expect any of this is that it didn't hit until this past summer. We had two years of Zoe in our family before I met special needs parenting grief face to face. Up until then, when I'd talk or think about Zoe's limitation, I was matter of fact about it and not really emotional. Our knowledge of her needs prior to adoption did insulate me from feelings of sorrow for that a time.

And then I was skimming my FB feed in June or July, and a short video of a girlfriend's little girl on the diving board started with autoplay. I'm a little obsessed with this particular Sunday school classmate of Zoe's, so I paused to watch (whereas I don't for other kids because confession: I find most videos of little kids to be insufferable). This sweetheart is right around Zoe's age but what she was doing was so far from anything Zoe can do. I was overcome with a grief I didn't expect because we all want our kids to be able to do anything they want and because I know Zoe would love to walk to the end of a diving board and jump off but I also know she can't do that now and probably won't ever be able to.

I had to close the computer and let the tears flow and go clean something to take my mind off the sweetness of my friend's daughter's successes.

Before finishing this post, I paused to message my friend whose daughter's antics prompted an surprising grief to bubble to my heart's surface, because I didn't want her to read this and feel like she had hurt me or like she should hesitate to share videos like that in the future. I wrote (with a few edits to remove the identity of the friend because that's not relevant),
I'm not sharing this to make you feel bad at all - actually, it's the opposite! I adore your daughter, and I want you to keep sharing her successes and spunk and sweetness. In the same way that you wouldn't stop posting about your husband if a good friend of yours became a widow, you shouldn't ever hesitate to post anything about your girl or feel bad about anything you've posted because Zoe won't be able to do the things she can. Maybe you wouldn't have ever felt that way, but my biggest concern in my post was that you'd read it and recognize your girl in my story and think you hurt my feeling or something like that by posting the video. You didn't! The broken reality of this fallen world is what breaks my heart, not your precious girl's diving board skills. I love you and her and the rest of your sweet family, and while I think the story of my reaction to her video is one worth sharing to help explain special needs parenting grief to those who haven't experienced it, I wanted to make sure to message you first to share my heart so that you wouldn't read into my words any hurt or offense directed at you - that's not there, even a little bit. I'm actually thankful that God used your video to stir the feelings I didn't know I had because I think it would have hurt more and been harder if it wasn't a precious little girl I love as much as I love yours and a mama I love as much as I love you.
So, please, mamas whose kids are all typically developing, don't confuse our grief with jealousy or hurt feelings or any anger about the successes of your darlings. The realities of this world are what feel like a gut punch at times, not your precious ones and their on-schedule milestones. If we share our grief, we're not trying to make you feel bad for your typical kiddos' wins, we're not complaining about our amazing kids, and we're not seeking pity or praise.

(In fact, many moms have told me they stay silent about grief because of the awkwardness of pity/praise responses. When I talk about my grief for Zoe's disability or for the medical needs due to Robbie's epilepsy or for the stigma that our dear one with HIV will probably face, I'm sharing a challenge of motherhood much like I might also share the frustrations of juggling homework in the evening or the chaos of trying to get everyone out of the house in the morning or the disdain I have for all things potty training except for the end point of that painful process. Just as you'd let the conversation keep rolling when I discuss the latter, please feel free to do the same when I or another special needs mama friend of yours opens up challenges like the grief-related ones I listed. Sure, ours might be a different hue on the spectrum of mothering difficulties, but our feelings truly aren't so different that sharing them should bring ordinary conversation to an awkward pause or complete halt!)

This is just part of the parenting journey for most all? of us who are raising children with special needs or continuing to support them in adulthood. The joys, oh, they are plentiful for us! Our pile of stones of remembrance from all God has done in and through Zoe is greater than we ever imagined. But I'd be lying if I presented our lives as all cheer and no challenge, because that's just not reality.

And speaking of cheer, I'm getting through this week's grief by breaking out the Christmas music and decor before December, which I NEVER DO but this week my heart needs a little more tinsel than tradition and a little more What Child Is This than routine to help me prepare to have a heart of Thankgiving. Because while grief is sometimes part of our lives, it's not a place I want to camp out for too long because it's a wonderful world even in brokenness.

... and on that note, to close out this not-so-cheerful-but-totally-honest-and-real post, here's a picture void of grief and full of cheer, thankfulness, and blessing from our first Christmas with Zoe girl. (One word: pigtails. You're welcome.)

Tuesday, November 18, 2014

adoption, parenting, life... all totally messy and completely worth it

When a mommy friend comments on the terrible twos, there's nothing I hate more than the not-helpful-at-all-so-stop saying-this-please comment from a more experienced mama, "Oh, you think two is hard? Three is way worse."

(Can we all agree to quit it with these sorts of "just wait" snarks? I could write a whole post about that, but my lovely friend Katie already has.)

Regardless of whether you think the hard preschool stage is age two or three or something else, I think we can all agree on these three rules of thumb: (1) Every kid is unique in what timing the I-want-to-do-it-myself-but-can't-yet-so-I-will-defy-authority-as-I-test-my-limits stage hits, (2) Every kid has one, but some are more committed to their oppositional ways than others, and (3) This too shall pass.

Kind of. We still have some tantrum like moments with our older ones, just with less frequency nowadays.

(Side note: Sometimes older adoptive kiddos hit their own stage at one or two years in the family, as they exist the honeymoon stage - or, for some, skip it altogether - and jump into testing boundaries like a two or three year old but in an older child's body. This post isn't about that, but let's suffice it to say we're at that point for at least a couple of our three who joined the family a year ago.)

And then there's Zoe. I feel like a mental meme held by many is the angelic sweet person with Down syndrome or another disability, as if special needs mean an individual doesn't get angry, doesn't shed tears of sorrow or frustration, and doesn't have PMS or pubescent angst... sorry to shatter your false image, but that's not real. In our house, we're seeing that as WE HAVE ENTERED THAT ROUGH STAGE for our littlest preschooler.

But, as much as this stage can make me feel inadequate as a mother because I don't know how to best discipline her through this and because I often don't understand her because her speech is limited, l love it. 


She doesn't have the communication skills to say, "I can do it by myself," but she certainly has the spunk.


I'm not allowed to assist her in moments like these unless she explicitly asks - "hiking mama," translated "help me, mama" - but she'll tolerate a hand from her partner in crime and in being three.


Our sanitation grade around here isn't very high, you might notice.


But mess matters less than character, and we had a lot of development of both this morning.


A lot of messes made. A lot of character shaped. A lot of this-is-so-worth-it moments.


(I couldn't help but think, "Girl, thanks for the effort, but that paper towel is so insufficient for wiping up all the yogurt you're wearing!")


Yes, these days are challenging. Yes, I feel like I don't know what I'm doing or if I'm doing the right things some all most of the time. Yes, the dirty shirts and sticky surfaces seem like they reproduce faster than bunnies. Yes, I fall into bed exhausted more often than not, only to be woken up by little footsteps or loud cries.


But the wonder of parenting the youngest of six is this: I know this will pass. I know she'll gain more independence (though, given cerebral palsy, we don't know how much more). I know kids are able to help with laundry and cleaning surfaces and whatnot as they get older. And most of all, I know I have to let her make messes and throw fits and work through this tough stage so that she can learn to do it all better over time and so that we both can discover grace for the moments in the future when life won't be easy.


I'm learning that parenting is full of paradoxes. In motherhood, thoughts of "I love this" and "This feels crushingly hard" can occupy the same space in my mind.


But I wouldn't trade it for the world.

Thursday, November 13, 2014

when the blog is on the backburner until HuffPo links to it

I haven't forgotten about this space, despite all evidence to the contrary. Promise.

But between prep for Zoe's surgery, then Zoe's surgery, and then recovery from all that, with a little public school preschool special ed drama in the mix (short version: still not sure where Zoe is landing there, but WCPSS is working with us on that), life has been too full for the blog to be tended. 

No apologies there. 

But I do have a few disjointed bits I'd like to share... first, a lot of new readers have been asking about Zoe's surgery because that was my last post and because The Huffington Post included our family in a recent adoption picture feature, along with a link over here. (Side note: Hi, new friends! Welcome.) I'll be writing a post about the surgery, but here's the Cliff's Notes:
  • surgery: good.
  • initial recovery: terrible.
  • support from sweet friends and strangers in STL: amazing & sustaining.
  • longer-term recovery phase we're in: busy with lots of therapy, but good.
  • Zoe's attitude about it all now: good.

After her surgery came some acute upper respiratory issues for me (read: my exhausted body gave up for a bit to recover from it all) and Patu (read: she's a cute little asthmatic), the state fair, Halloween, and now we're in the deep of the school issues I mentioned above. Life is busy but good.

My blogging efforts haven't been getting rusty, though. They've just been elsewhere. Over at Key Ministry's main blog site, I've been sharing about ways the church can love and support adoptive and foster families well. I'll end this somewhat disjointed post with links to each of those posts...

I never planned to have a large family. I never expected to have six children from three continents. I would have laughed in your face had you told me we would adopt four children from two countries in less than 18 months.
The four kinds of special needs found among children in adoptive and foster families
Special needs in church are anything that can hinder a child or family from full inclusion in YOUR church.
Five ways the church can love and support adoptive and foster families well...
(1) Avoid treating us like idols.
We’re human. We struggle. And when we’re up on a pedestal that others have built for us, we’re set apart from the rest of the community. That’s not what God’s design is for the church.
(2) Become trauma- and attachment-informed.
Can there be beauty there? YES! But is it borne out of hard places? YES! God calls us to care for unparented children, so we should be willing to say, “Here I am, Lord, send me,” but we aren’t serving anyone well if families dive in after being presented with a glamourized version of the realities of adoption and foster care.
(3) Partner with us.
When adoption, foster care, orphans, or the fatherless are talked about in your church, be mindful that you are describing people not abstract concepts. If you would change your words if you knew a former or present foster child, orphan, or other unparented child was in your congregation, then choose different words.
(4) Let our kids be kids.
They might have been called an orphan in the past, but they’re not orphans anymore... they are kids, first and foremost.
(5) Be willing to listen and learn.
Adoption can be hard, and adoption can be beautiful. No matter how hard adoption or foster care is, though, when the church commits to loving adoptive and foster families by listening to and learning from us no matter what our circumstances might be, that’s always an act of beauty.
When saying yes is scary
But you’re not alone. As you say yes, even to families who have diagnoses that might be on that list of ones that scare you, you might need some help. That’s what Key Ministry is here for. We offer a free consultation service for churches, and I’m one of those consultants who is glad to help you figure out how to say yes and keep saying yes. Because sometimes hard things can paralyze us so that we don’t know what the first step should be. And if that’s where you are in your desire to say yes to families affected by disability, including but not limited to adoptive and foster families, then we would love to come alongside you. It’s what we do.
I love adoption, but...
Please, church leaders and friends, be careful how you portray adoption and foster care. Especially in front of my children, who – like most kids – don’t want to be singled out as different or as being or having been needy at some point in their lives. Especially to other people in our church who while well intentioned might not be prepared or equipped to say yes to adoption or foster care, maybe not ever or maybe just not yet. Especially when so many Christian messages imply or outright present adoptive parents as the savior when we have only one Savior (and it’s not us).

Monday, September 29, 2014

Zoe's surgery next week
(aka why you might find me in the corner breathing into a paper bag)

A week from tomorrow, I'm letting a doctor cut up some nerves in my little girl's back.

No big deal, right?

Okay, so it's a pretty big deal.

The surgery is called selective dorsal rhizotomy (or SDR). Selective, because it involves the surgeon carefully selecting which nerves to focus on, using an EMG to measure the electrical activity in them and identify which ones are problematic. Dorsal, because it involves the nerves in the dorsal root (that is, the sensory portion) of the spinal nerves involved rather than the ventral root (that is, the motor portion). Rhizotomy, because that's that fancy medical term for a surgery that involves severing some of the nerve roots.

This surgery is a common procedure for kids with spastic diplegia due to cerebral palsy. That's the case for Zoe. She was born prematurely, probably around 30 weeks, which resulted in periventricular leukomalacia (PVL). Those big words mean that portions of her brain that control motor development never formed. As a result, her brain sends some wrong messages to her body. For her and other people with spastic diplegia, those error messages tell her muscles to tighten up. We do a lot of daily stretching, but that's not enough. The spastic tightness in her hips, legs, and feet are why she can't sit, crawl, or walk independently like other kids who are about to turn 3 like she is.

In SDR, the surgeon will open up Zoe's back, remove part of one of her vertebrae, separate her motor nerves from her sensory nerves, prod her sensory nerves with an EMG to determine which ones are sending the wrong messages to her body, and then permanently cut those unhelpful nerves.

Yikes.

But we wouldn't be doing this if the benefit didn't outweigh the oh-my-goodness-they're-doing-to-do-what? feelings about it. Zoe doesn't need this surgery to live. So if we decided to say "forget this" and walk away, we could do that.

For Zoe, though, other options aren't great. We're already doing a lot of physical therapy each week, but that's not enough. Less invasive options like baclofen or Botox aren't great for her. Baclofen affects muscle tone all over, and her core has low tone while her legs and arms have high tone, so it would hinder the muscle development in her trunk which she has fought hard to gain. Botox can help but it's also toxic in high doses; dosing is determined by a child's weight, and Zoe is so petite that her safe Botox dose is too low to target all the muscle groupings that could use it. Plus Botox deadens all the sensory nerves in the area and not just the unhelpful ones and it wears off, so SDR is a more precise and permanent.

also, this cute bob brought to you by SDR to prevent a tangled mess
during the first 3 post-op days in which she has to stay lying in bed

If you're a details person, here's the link about the surgery from the team in St. Louis who will be operating on Zoe. Why St. Louis? Because their surgical team has the most experience and best success rates of anywhere in the world. If I'm going to let someone slice and dice on my kid's spinal cord, I'm not okay with anyone but the best.

those threads in the pic? they're nerves. that's kind of a big deal.
(source: St. Louis Children's Hospital)

We leave this Saturday the 4th, pre-op is Monday the 6th, surgery is Tuesday the 7th, and we'll be in-patient until the 12th. If all goes well, we'll fly home the 13th and begin post-surgery therapies here the next day. Lee will hold down the fort with the other five kiddos here, working during school hours while Patu has daily playdates with her bestie.

Following surgery, she'll have physical therapy 4-6 times a week for the first six months post-op and then 2-4 times a week for the next six months. Thankfully, Zoe's longtime physical therapist will cover 3 of those sessions, along with a new therapist for one session a week and a school-based therapist for two sessions a week once she starts her special ed preschool program on December 1. (This is all in addition to speech therapy twice a week and occupational therapy once a week. Thankfully, Zoe loves one-on-one attention, so she thinks her loaded therapy schedule is pretty awesome.)





In other words, this surgery is a pretty big deal. Prayers, warm thoughts, encouraging texts, and the like are appreciated!

Tuesday, August 26, 2014

the sacred and awkward moments of motherhood and Christian community

Our church is dear to us. My heart breaks when I hear stories from other mamas who have not found their churches to be havens of support through the ups and downs adoption or special needs.

Providence family, thank you for loving us well.

Never have I felt that love so profoundly as this past week. Friends checked in on us about Robbie's seizures, which have started up again, probably because of the excitement of school starting (a good sort of stress, but a neurological stressor nonetheless). And then, this past Sunday...


Yes, Patience was baptized while Robbie threw a tantrum in the background. Sacred meet awkward.

Before I go into the details of the day, let me provide a little background, especially for those of you who don't come from a faith tradition in which baptism by immersion is the norm. I didn't grow up that way either, so I totally get where you're coming from. In elementary school, I remember seeing my best friend's baptism pictures, also in a pool instead of a church, and I thought, "Those people are crazy," and "How can something so sacred be done in such a pedestrian place?" For me, coming from a Lutheran high church upbringing with robes and acolytes and gold-plated baptismal fonts, a pool baptism seemed weird, disrespectful, and maybe even a little cult-like.

Just being honest.

In my childhood church, babies or young children were baptized and then the rites of first communion and confirmation are steps taken as children grow into their own Christian faith. In biblical terms, that church treated infant baptism much like circumcision was for the Jews and then the later rites are like baptism and discipleship in the Bible. In our current faith tradition, parents dedicate their babies or young children to God before the congregation and then we practice what's called "believer's baptism" in which baptism only happens after a child or adult has accepted Christianity as their own. As such, baptism doesn't make anyone a Christian but rather it serves as a public profession of what God has already done in the heart of the person being baptized.

While we praise God that Patience knows God in a real and personal way, we also know that Robbie isn't yet at that place... thus his tantrum in the background of all these pictures as he cried that he wanted to be "bathamatized" too and insisted during one song "but I have been washed in the blood! Really, Daddy!" (which was kind of creepy to hear come from his mouth because he doesn't understand metaphorical language yet).


Once again, I say: sacred meet awkward.

Which is kind of the definition of motherhood, I think.


Because believer's baptism in the Bible was done by immersion, that's what our church does.

(I grew up calling it dunking. I still do most of the time. The word immersion is a bit highfalutin, don't you think?)


The reason behind dunking is the Christian belief that we were spiritually dead in our sin but have been given new life through the grace, mercy, and forgiveness extended to us through Christ's sacrificial death on the cross. As such, going under the waters of baptism symbolizes dying to sin and identifying with Christ in his sacrifice for us,


while rising out of the water symbolizes rising to new life and identifying with Christ in his resurrection.


The hugs afterward aren't part of the sacrament of baptism but rather the sweetness and love our church family has for our kids.

Once again, thank you for loving us well.


"We were buried therefore with him by baptism into death, in order that, just as Christ was raised from the dead by the glory of the Father, we too might walk in newness of life." Romans 6:4
"having been buried with him in baptism, in which you were also raised with him through faith in the powerful working of God, who raised him from the dead." Colossians 2:12


Do I still think it's weird to have such a sacred moment in the same pool where the kids splashed and played during their week at summer camp? No, not really. After all, the Philip in the Bible baptized the Ethiopian eunuch in a body of water they were passing on the road. It's not about the place but the purpose.


Immediately after her baptism, Patience and Jocelyn ran to each other and embraced in the water. I didn't have my camera ready for that, so this is the best shot I managed.


This unplanned moment meant Jocelyn, who didn't have a change of clothes, rode home wet.

Sacred meet awkward.

Then one of the pastors led us all in prayer at the end, and Zoe bowed her head and folded her hands as she's learned to do during family prayer times. Philip wasn't paying attention to the pastor, and he started tickling Zoe and messing with her. She lifted her head, yelled "NO!," slapped Philip in the face, and shouted, "Pray!"


Finally, in the last intersection of sacred and awkward of the night, we didn't stay to celebrate with our church family because school started the next day and showers & bedtime routines took priority. Patience doesn't like people to make a big fuss over her, so it was probably for the best because I know mine weren't the only teary eyes poolside.

So I'll end this post as I began it:
Thank you, Providence family, for loving us well and celebrating with us. 
(Even though we didn't stick around to let you celebrate with us in person.)

Friday, August 15, 2014

why I press on when I can hardly bear it {on #Ferguson, Ebola, & my own racism}

Y'all, some days I just can't even bear it.

As much as I love technology, lately I've found myself longing for the days in which it didn't exist and I wouldn't know about another unarmed black man being killed or the loss of another life to mental illness or the death of more people to Ebola or the persecution of many people groups (including, but not limited to, Christians) in the Middle East.

But we need to know. 

Let me step back for a moment, though, to share a different story, one from my small life that I think fits in the context of the bigger stories being discussed today.

Two weekends ago, a rainy Saturday morning found our family at Monkey Joe's. We had our Groupons printed and our socks on, and our party of eight was all set for bouncy house fun. As we pulled up, though, I felt my chest tighten as I noticed that everyone else in the place had much darker skin than I do.

I hate to admit this, but I thought, "Next time, we'll go to the one in Cary."
You know, the whiter suburb.

But we unloaded and filled out waivers lest my crazies ended up injured and tucked our shoes into cubbies and let loose. And as our time in that packed play place wore on, I was convicted.

As I chatted with the black mama sharing our lunch table, sharing words in between pages she read on her Kindle, I was convicted.

As I saw my children light up when they pointed out other little boys and girls who fros and twists and mohawks like three of our children were wearing, I was convicted.

I was convicted and ashamed as I realized the assumptions I had made, the ingrained attitudes I felt, and the judgments I passed about a group of people who mostly resembled three of my children more than me. As I shared with a friend in response to the events of Ferguson, Missouri,
"I thought I understood, but I didn't. Not until I became a mama of a black boy who will one day - God willing - grow up to be a black man. Stories of Trayvon and Michael Brown and John Crawford and others like them mean more to me now, and I'm ashamed that they used to mean less. I know many mothers battle anxiety about the future for their kids, but that's never been a temptation for me... until raising a black boy and having my eyes opened to so much of what that involves. Oh, my heart."
The next time we go to Monkey Joe's - after all, we have at least 2 more trips of Groupons to use - it will be that location again. Next time, I will see the beauty in diversity and the blessing in differences. Next time, I will know better and be better because I was willing to let God convict me of an ugly part of myself where racism and prejudice dwell even though I'd like to say I'm better than that.

I'm not.

I don't think any of us are.

When I think about Ferguson, I can't help but think about the Ebola outbreak in parts of Africa. What does it say about us that few people here knew or cared about the deaths in Liberia until the virus was contracted by someone who, for many Americans, was raised like us and believes like us and looks like us and has the same passport as we do?

Does a white life matter more than a black one?

I've been following the outbreak for a few months because of a friend in the area, but Ebola didn't break into my news feed until a white Christian American got sick. I'm uncomfortable with that, because my God cares just as much for the sick Liberians.

God cares as much for my black son as He does for my white one,
my son from Africa as much as my son from America.

photo of my boys by Rebecca Keller Photography
He loves them both.

And so do I.

On the days when I can hardly bear it all, I press on for them. And I write on for them too, even owning my own ugly places, in hopes of making the world - and myself - a better place for them.

Monday, August 4, 2014

Undetectable: The word every HIV affected person loves to hear

A couple weeks ago, while seeing our child's pediatric infectious disease team, we received wonderful news: UNDETECTABLE. In the latest blood test, our child's HIV viral loads were undetectable.

Undetectable. 

This is the goal of treatment, I know. But knowing that intellectually is very different from feeling it emotionally when you see the lab results and hear the word. Glory.

Most readers of this blog aren't members of an HIV affected family, so let me back up a bit to explain. The two blood tests for HIV are CD4 counts and viral load counts. The first measures immune system function, the higher the better, while the second measures the number of copies of HIV per milliliter of blood. When our child came home, that CD4 count was dangerously low while the HIV count was high. Over time, the CD4 count has been improving as our child gets stronger and healthier, and the viral load has been dropping.

And now? UNDETECTABLE.

We don't have to been seen again for a few months, but the nurse calculated a next weight benchmark for medication adjustment because our child might gain enough pounds before our next appointment to warrant a dosage change. HIV can, among other things, stunt growth, and that was true for our dear one. Reaching undetectable viral loads means a major growth spurt is right around the corner.

Technically, undetectable means - at our lab - less than 40 copies of HIV per milliliter of blood. But to give you some scope of what that means beyond the anticipated growth spurt, here's a snippet from a news story on the reported findings so far of a multi-year study of sexually active serodiscordant couples (that is, couples in which one partner is HIV+ and one is HIV-):

When asked what the study tells us about the chance of someone with an undetectable viral load transmitting HIV, presenter Alison Rodger said: "Our best estimate is it's zero."

In this study, undetectable is defined as less than 200 copies of HIV per milliliter of blood, whereas our lab's definition is a little stricter. In two years so far in the study, the 1,100 couples have recorded 44,400 instances of unprotected sexual activity. In those 44,400 encounters, the only precaution against HIV transmission was the HIV+ partner taking ARVs and having undetectable viral loads, just like our child. The result? No transmissions of HIV occurred among those couples as a result of their sexual activities.

None.

Our child wasn't a threat to any other child before reaching undetectable viral counts, because HIV is only transmitted by sexual activity, breastfeeding, or shared blood, as in transfusions or reusing syringes. Childhood accidents and spilled blood have never transmitted HIV - not in a home environment, not at school, not on the playground, not in the NFL or NBA or any other sports environment. But eventually our child will become sexually active, so this latest research is very good news to us, especially in light of our child's undetectable viral loads.

So what do we do now?

We'll continue to stick firmly to our child's medication regimen, because that's what will continue to suppress the viral load. We'll keep sharing the truth about HIV, in hopes that the world will be a less ignorant place by the time our children are adults.

And we'll celebrate, because undetectable is definitely worth celebrating.


Wednesday, July 23, 2014

I love my modern village.

Just this week, I've seen a HuffPost Parents piece pop up again and again in my newsfeed, lamenting the loss of village-style parenting in our modern world. To that, I say, "Hogwash."

Even if we assume that the village always functioned in the romanticized manner she described, I'm happy to wrap myself in my online village. In that archaic village, for starters, I wouldn't have the rich opportunity to connect with as many families like mine: transracial adoptive families (and adoptees or first parents who round out the adoption triad), special needs families, other parents with HIV+ children (in private groups I can't link to, for the sake our our children's protection), and so on. Our daughter Zoe will have a potentially life-changing surgery in St. Louis in October, and I would never have known about that from a local village without more global connections. Furthermore, she and I will stay with one online friend and her family while we're in St. Louis, and we have a back-up option with another Facebook friend.

I promise, Mom, these friends are safe. Don't worry!

Beyond that, though, I know I'm not alone in making a mothering village out of Facebook. Just as the HuffPost blogger wrote about "doing the washing side by side, clucking and laughing hysterically, tired in body but quick in spirit," I find myself checking in online with other mamas, near and far, in between filling my modern washer and dryer (which, after washing by hand for six weeks in Uganda last fall, I will not take for granted again). Even as I get frustrated at times at all the lack of listening and lot of yelling online, I don't buy that those same behaviors wouldn't be present in the village too, even if they would be much less public.

Here's how my village works. I posted, with great vulnerability, what I was feeling on Monday without any pretense or facades.


What happened? My online village rallied with likes to affirm that I wasn't the only one and comments, messages, and texts to encourage me in this mothering work. A fellow mama of many whose youngest is about to turn 18 asked if she could bring me Starbucks and then stayed to join in the sorting, folding, and hanging of little girl and boy clothes, making heaping baskets seem far less daunting as we tackled them together. A couple friends asked if we needed food (after all, that's how we show love here in the South) and  another - after seeing a couple posts on Instagram about our summer colds - offered to run an errand or two if that would help.


Does Fakebooking happen online? Yes. Does wearing a mask and pretending all is well and then crying in the confines of your own house or hut or tent happen in the village too? Yes.

Community doesn't have to be the village. Community can be an online forum or a group of adoptive parents at a guest house in Uganda or the passing conversations in the halls of the elementary school as we meet the teacher and drop our children in classrooms and head off to homes or jobs or the discovery of who we are as women after the years many of us spend primarily as moms with little ones underfoot until they're school aged and we're not quite sure how to fill our days without those grubby hands ever present. Community is a homeschool co-op or a Bible study group or a series of group texts. Community can be Twitter or Facebook or blogs, and community can be coffee shops and laundromats and mealtimes.

I refuse to buy into the notion that present day villages can't be made, that community evaporates in the presence of doors that lock and machines that wash clothes and other modern conveniences, and that today's motherhood has to be as isolating as that HuffPost blog writer describes.

What would our parenting experiences be like, I wonder, if instead of wistfully waxing about the village of days past, we chose to create our own modern villages using the technology from afar and touches near that this day and age has to offer?

Sunday, July 6, 2014

U-NEEKs: Uniquely crafted and loved, just like each of our darlings

Obviously, our family is unique, so when I heard about the U-NEEK line from Dayspring of toys, apps, and gifts for children, my curiosity was piqued. Even more so when I saw the tag line from Psalm 139: "fearfully and wonderfully made."

LOVE.

Jocelyn and Patience have Jazz and AllieBird, who are purported to be best buds respectively with Robbie's Indigo and Philip's Mustachio, according to their tags. (Mustachio's tag also offers the nickname of Bubba, which rolls off Philip's lips more comfortably, so that's what his green guy goes by.)

  
 

Patu has Dweeber, and anyone who knows us in person needs to ask her to say Dweeber. Seriously.
Because three year old pronunciations are awesome, and because laughter is good for the soul.


Zoe has Splat. She only has about 40-50 words she uses regularly, and one of them? "Plat." Heaven help the person who tries to play with Splat! This weekend's "NO!" and "bad Patu!" from Zoe were the result of that sort of attempt from her sister.


Each stuffed U-NEEK is only slightly larger than a Beanie Baby or Beanie Boo, making them handy to bring on a roadtrip or tuck into bed with a sleepy little one. Our little ones didn't care much for the tags, but Jocelyn and Patience are obsessed with knowing the backstories for each of our little Dayspring friends. That curiosity includes an insistence on learning each U-NEEK's Bible verse, which makes for 6 newly memorized verses for the girls - a huge win in hiding God's word in their hearts, don't you think?

  

 

 

I didn't let them bring their U-NEEKs in, but last week's trip to the aquarium and the beach included comfy, cozy companionship in each child's car seat, showing our kids' unique love for each of their fluffy friends.


As for my take on them, the only downside is that the girls' notebooks show that we're missing two of the U-NEEK collection, so I hear, "When are we going to get Wally and Trysta May?" every so often.

Hmm, maybe I have some chore completion incentives here... 

Sure, these are simple stuffed animals, but my precious ones love them and - at only about $9 a toy - they're a cheap investment to turn little hearts toward God's word and the truth that each child is uniquely, fearfully, and wonderfully made.

From now until July 14, U-NEEKs are available at Wal-Mart and Hobby Lobby, so you don't have to take my word for it - go check them out in person yourself. And maybe I'm the only crazy one who is already thinking of Christmas, but I'm picturing U-NEEK creatures as perfect stocking stuffers.

This post was sponsored by Dayspring with $50 of U-NEEK merchandise provided to us, but my opinions as well as the pure child-like joy from our six are all our own.