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.

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. 

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.)

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.

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'm Shannon, and this is my family

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).