pressing on, because it's worth it.

Sometimes people ask how we I do it all right now: getting a house on the market and under contract in March, selling one house and buying another and moving everything in May, finalizing the adoption of our youngest in July, and starting public school for our oldest in September.

In the past, I've turned to various vices to get through big transitions. Not this time. Through the help of precious friends willing to hold me accountable, I've mostly avoided those. (Mostly, not completely. Let's just say that the new jeans I bought for my speaking engagement last week were a size bigger than my usual ones. So, maybe I've been eating like I did when I played water polo in college... you know, minus the working out part.) 

(Can I still call it baby weight even if I wasn't in on the gestating?)

Anyway, the only answer I have is "give us this day our daily bread." Nowadays, to do lists are long enough to make me hyperventilate at the sight of them. I just count on God to guide me through figuring everything out one step at a time.

But, to be honest, I'm tired.

Actually, I'm not quite sure what the word is. Exhausted doesn't cut it. Neither does weary or beat or wiped out or any other word the thesaurus offers up.

When you ask how I do it, I fumble with my answer. I don't know. Most days, I don't think I'm doing it too well.

Here's what I do know:

Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus.

(Philippians 3:12-14)

I'll figure out how to get our oldest to and from school and still make sure our son gets play time while juggling three or four therapy appointments for Zoe each week, because it's worth it. (I said she would probably walk. I didn't say the process to get there would be easy.) I'll serve in Access Ministry, including kids with special needs in church, because it's worth it and because it's the outlet that keeps me sane in the midst of everything else. I'm not quite sure how to not lose all my friends in the process of everything else, but even if some friendships do fall apart for lack of attention, it's worth it.

In other words, I'm in a constant state of pressing on, because it's worth it.

But I'm still tired.

Kind of like this sweet girl. (Yes, she's sleeping in her exersaucer.)

holding a miracle (on Zoe's evaluations, possible outcomes, and role in connecting two other children to families)

Our girl is a miracle.

Really, she is.

You can read about what the neurologist had to say about her expected outcomes here. That link goes to my friend Georgeanna's blog. Their family is adopting a two-year-old girl with Down syndrome and some health needs from Taiwan, but they first considered adopting Zoe. After they realized it wasn't meant to be for them to be Zoe's family, they were the ones who contacted us about her.

They are knit into our lives in a way I never thought would happen back when G and I were in Miss Dixie's Bible study group a few years ago.

Here's an excerpt from Georgeanna's blog about what the neurologist had to say about Zoe, then called Jesse (but also, for brief periods, called Adelyn and then Hannah Brooke by families who briefly considered her to be theirs but then determined that God was not leading them to adopt her):

I don't remember exactly what he said, but I CLEARLY recall the words "devastating brain injury". He went on to explain (as gently as he possibly could) how things might be for us. We were looking at a child that would probably never walk, maybe never talk, probably struggle with sleep/wake patterns and incontinence. He expressed a concern for the possibility of behavioral issues and all of the care she might need -- things he felt I needed to seriously consider. He not once said anything unnecessary or hurtful, and he never came across as judgmental of our desire to adopt -- he was just stating the facts as he saw them. I could tell he was trying to be positive and careful not to crush my spirit, but I could see the concern in his eyes. At the end of the appointment he walked me out and hugged me, telling me how much he appreciated my heart for these special kids and he wished me all the best.

That neurologist who reviewed Zoe's records then is the neurologist we see now. The one who gave us this report. The one who later said he was surprised by her new MRIs and admitted that no medical reasoning could explain how well her brain is doing.

We still don't know 100% what her outcomes will be, and we won't for a while. Usually, age three is the point at which kids with her kind of brain damage are old enough to really guess at their long-term outcomes. I can tell you, though, these wonderful tidbits from her developmental evaluation:

• Typical nonverbal problem solving skills (no delays at this point)
• Typical receptive language skills (no delays at this point)
• Typical expressive language skills (no delays at this point)
• Typical cognitive development (no delays at this point)
• Typical adaptive/self-help skills (no delays at this point)
• Typical-to-advanced social-emotional development (no delays at this point)
• Significant delays in gross motor skills (rolling, sitting, walking, climbing, etc)
• Mild-moderate delays in fine motor skills (using fingers and hands)

We knew she would be most affected in the physical realm. By all medical reports, it would have been crazy for us to expect no delays in other areas. 

Those other delays might show up eventually. Or they might not. 

As for her physical impairment, the pediatrician conducting Zoe's developmental evaluation shared that "while the physical delays will mean that she'll reach milestones on her own timeline, I don't see any reason why she shouldn't be able to walk eventually." 

Y'all.

(For those of you who don't speak Southern, "y'all" can serve as a stand-alone phrase that roughly translates to: "seriously, you ought to think about what I just said or what I'm about to say.")

"I don't see any reason why she shouldn't be able to walk eventually."

The reports were pretty certain that handicapped accessibility would be an eventual need for our family if we adopted Zoe. One reason we chose this house was for accessibility for Zoe. We considered putting Zoe in what is now Robbie's room, but you have to navigate a few turns to enter the room, each tight enough to be difficult to maneuver in a wheelchair. 

Now? That's probably not an issue, though her physical abilities will probably never be a strength of hers. She won't be an Olympian, but for now it looks like walking will be something she does in time. We'll see.

God is in the miracle department, and so far, Zoe is living the miracle. We were prepared to love and parent her, regardless of her needs, but it is a joy to realize that her life will probably be more typical than not.

And about those families who considered adopting Zoe enough to name her before they determined that they weren't at peace in moving forward? Well, one adopted a daughter named Adelyn now, and here's Brooke's beautiful post about a conversation with their doctor about Adelyn's neuropathology. The other is that same friend Georgeanna, whose family is adopting their sweet two-year-old girl from Taiwan.

That's another reason that Zoe is a miracle. Who but God would take one orphan with special needs and use her story to bring her home to a family and to bring two other families to children in need in the process?

I love getting to hold our sweet miracle every day, thanking God for what He has done in all of our lives in 2012.

Sometimes, you have to pack up and go home. (On leaving #D62012 early)

I drafted this post while on a plane earlier today. I've gotten interrupted five times while trying to post it - once to find a small blankie that my five-year-old daughter always sleeps with, once to remind our three-year-old son that it's bedtime, and three times to calm our sweet Taiwanese-American girl when she cried out for "mama," checking to make sure I was still here. (Oh, adoption, I love you, but my heart hurts that our youngest hasn't always had a mama she can trust to be there.) 

Want to know something about those interruptions? I cherished every. single. one. Now, on to the post to explain why...

I hoped to connect with others passionate about family ministry this week while I spoke at the pre-conference and then hung out for the main conference of D6. I did the pre-conference part yesterday, and it was fantastic. 

Truly, D6 is an amazing conference in which people serving in all areas of the church – with children, youth, adults, people with disabilities, married folks, singles, two-parent households, single-parent households, married parents, unmarried parents, and the list goes on – join together in the conversation about what we can do to equip families to live out Deuteronomy 6, including these verse from that chapter:

“Hear, O Israel: The Lord our God, the Lord is one. 

You shall love the Lord your God with all your heart 

and with all your soul and with all your might.

 And these words that I command you today shall be on your heart. 

You shall teach them diligently to your children, 

and shall talk of them when you sit in your house, 

and when you walk by the way, 

and when you lie down,

 and when you rise. 

You shall bind them as a sign on your hand, 

and they shall be as frontlets between your eyes. 

You shall write them on the doorposts of your house and on your gates.

I hope to return to D6 again in the future. No other conference, in my opinion, is as rich and deep and biblically focused as it is.

But, as I write this, the main conference is going on, and I’m on a plane home.

Why?

Because my husband has a nasty cold. My oldest child had a fever yesterday. My youngest isn’t too keen on the mom she’s only known for two months going MIA. Thankfully, my son is doing well with it all, but he’s feeling the effects of everyone else and – quite frankly – I was homesick for all of them before I found out how life was going at home.

And while I can have that conversation about how to best equip families with special needs another time and while others can have that conversation without me, no one else can be wife to Lee and mom to Jocelyn, Robbie, and Zoe. My husband could have made it all work back home without me, and he didn't ask me to leave. I just knew I needed to when I considered that my choices were to stay and talk about how to best minister to families or to go home and minister to the family that is mine and that needs me.

While I wish I could finish the trip I had planned, I’m thankful that God has made it clear where I need to be and where the place of my first ministry is.

I don’t have to go home. I get to. 

~+~
I'd also like to add that I'm grateful for the D6 team who hospitably welcomed me and supported me through the sessions I led and who graciously helped me rearrange my plans to return home early. They don't just talk the talk; they walk the walk. 

#D62012 special needs ministry: "Ministering to Families Impacted By Disability - More Than Adding a Ramp to Your Church (Marie Kuck)

This is a continuation of posts today as I blog about the special needs track at the D6 conference. This post tells you all of the sessions on the track, and here's my blogging of Marie's first track. I'll be posting about my sessions later this week. (Sorry, can't speak and live blog at the same time!) This is my live blogging of Marie's second session.

We think of people with disabilities as the wheelchair and immediately jump to physical accessibility. This is important! But more important are the attitudinal barriers that people can't get past in their mind.

Some good nuggets from Marie's talk:

• "My little boy was no less a creation of God and a valuable soldier in the kingdom than anyone else. We need to move from being tolerant to being intentional, with arms wide open to receive you, even if I don't know what it will look like. Let's go on this journey together."
• "We aren'y doing this for 'those poor people who have special needs.' It's not a department in your church. They're part of the community. This is the body of Christ."

Often not until we acquire a disability or have a child with a disability that we realize what we've been ignorant about.

She shared "Welcome to Holland." (If you're not familiar with it, Google is your friend. You should be able to find it. It's an analogous story of what life is like for families who have a child with disabilities.) It can be hard for parents when their kids don't hit milestones at the same time as other kids. We need to celebrate the milestones that they do meet, whenever that happens!

GREAT TIP FOR CHURCHES (note from Shannon: that I've seen at other churches too and that we're looking into for ours when we redo our parking lot): In addition to handicapped parking, have designated spaces for families with disabilities who might not qualify for a handicapped placard. Have members of your church hospitality team ready to help when they see a family pull up, assisting them with getting kids out of the car and to their classes or to the worship center.

In this session, Marie shared a lot of details about their lives before Nathaniel's "change of address" to heaven. Here's the link to that story at Nathaniel's Hope. She shared another story of a mom who used to come to respite, drop the kids off, and go recline her driver's seat and sleep for three hours because she was a single mom and had no family support - this was the only break she got. (Note from Shannon: I also love a story from Key Ministry's Harmony Hensley's presentation about respite when she shared about a mom who, after respite, told them, "I went to Target. I've never been there before. I was just as beautiful as I had heard." She walked up and down the aisles, crying, so thankful to be out and shopping.)

At the end, a dad with a child with special needs shared how much it means to his family and his daughter when people come to things like her Special Olympics bowling times. He suggested, "Just be there and be incarnational in that way." He also suggested that a great question to find out how to minister to families affected by disability is simply, "Tell me about your family," instead of tell me about your child's disability.

I'll be blogging about my sessions later this week!

D6 Special Needs: Disability is Not My Thing... Help Me Find, Equip, and Sustain My Team! (Marie Kuck)

Marie leads Nathaniel's Hope, named for their son who had multiple disabilities and who, in Marie's words, "had a change of address" eleven years ago when he went to heaven. She began by sharing her story, in which her church loved their families but didn't know what to do with them (and in which she, for example, spent many Sunday mornings in the car with Nathaniel while the rest of the family worships because his feeding tube had leaked and made a mess on them.)

This is my favorite part so far: She just asked how many of us have kids with special needs. I was the only one who raised by hand. The rest of the room is folks who care about special needs ministry without being a special needs parent. (This is a BIG change from what I often see in sessions like this, where usually at least 10-20% - in not many more! - in the room has a child with special needs.)

The Fear Factor: Many of us are afraid to interact with those who are different from us. We need to start thinking by what people CAN do (their abilities) and not what they CAN'T do (their disabilities). It often fails to just put out a bulletin notice for volunteers because people are intimidated unless they clearly know the role they'll be filling.

IDEA: You can go serve at the Down syndrome or autism walk in your community or the Ronald McDonald House to help members of your church become more comfortable serving with people with disabilities.

Matthew 25:40 - "As you have done it until the least of these, you have done it unto me."

Volunteers DO NOT need a special needs background. They just need a willingness to learn and serve with compassion. Sometimes, volunteers can help you understand what they can do and want to do (for example, a senior citizen who is not able to chase after a child but would love to sit and read with one or make phone calls to check in with parents).

Our lives and churches are made richer places by people with special needs. "My son who never learned to walk or talk or eat by his mouth blessed my life in ways that our other children never could have."

It's okay to seek outside professionals (including college students who are professionals in training), but you want to be finding people within your church to serve as well.

Respite care is a GREAT way to train volunteers by giving them a chance to serve in a short-term, low-pressure, relaxed environment before they commit to regularly help on Sundays or mid-week ministries. You can use respite care as a way of recruiting longer term volunteers.

ALL teachers need to understand about special needs ministry, not just the volunteers who are serving directly with a child with special needs. Find people to help give respite to your volunteers at times to back them up or to come in and offer extra training, so that volunteers don't burn out and stay with your team for a long time. (Note from Shannon: If you invest in volunteers well, you won't have to recruit as much because you don't be losing volunteers who you need to replace as often.)

Intake forms help volunteers because the info on the forms can help them understand the needs of the child they're paired with. (Note from Shannon: I'll be posting our intake form here last this week if you need an example.)

Marie shared a lot of resources that can be found on their website here: Nathaniel's Hope's Resource Page

Questions people asked:
(I'll be posting about each of these with answers from me and Marie next week.)

• Our church had a special needs ministry but then we had some splits and now we're working from the ground up to reestablish something. What's the first step?
• Our church's biggest need is organizing respite care well. We have it quarterly with about 20-25 kids. How do we organize the team to go from that to stay on mission on Sunday morning?
• We just had fall kick-off, and now I have Sunday school teachers come to me and saying, "I think we have a special needs situation here." Now I feel like we have the cart before the horse. Is it okay for me to approach a parent to ask if there's some special need situation present so that we can serve the family and the child well?