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).

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!

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.)