so you must know a lot about cerebral palsy, right?

Nope.

My MAEd is in special ed, but my concentrations were learning disabilities and autism. I taught special education for four-ish years, but the preschool I was at focused on kids with developmental delays and fetal alcohol syndrome and my middle and high school teaching experience was mostly to kids with learning disabilities, ADHD, behavioral/emotional disturbances, and mild intellectual disabilities.

I'm not incredibly familiar with brain injuries or abnormalities. Physical disabilities aren’t a world I know well, though I technically would be classified by some medical professionals as having a mild degree of physical disabilities in my hands due to damage for rheumatoid arthritis. And my experience with people with intellectual disabilities is limited.  (Learning moment for today: “intellectual disability” is the new term for what we used to call “mental retardation.”)

So what outcome are we looking at for Zoe Amanda? Some degree of physical impairment with a possible side of intellectual disability.

(Can you tell from my metaphor that I’m hungry? Planning for this baby has me wanting to stress eat without the justifiable excuse – It’s for the baby! – for it.)

(Though, considering that I gained more than I should have with my two pregnancies, perhaps that excuse wasn’t so justifiable then either.)

We’ll be setting up an appointment soon with one or more medical professionals to review Zoe Amanda’s MRIs, but the three top pediatric neurosurgeons who have already seen them (before we knew anything about her) have each confirmed that the range of possibility is wide for her. On one end of the spectrum, she could be in a wheelchair and have mild-moderate intellectual disabilities (as a point of comparison for you, most people with Down syndrome who have intellectual disabilities fall in the mild-moderate range). On the other end, she could have typical cognitive functioning and a limp.

Here’s a good link describing CP, and I think the liberal use of “sometimes,” “different,” and “may affect”/”may occur” show well how varied CP outcomes can be. The root of CP is always in the brain, caused by injury or abnormalities that occur in utero, during birth, or in the first two years of life. Zoe Amanda was born at 30 weeks gestation – that’s 10 weeks early – and while lots of babies with CP are preemies, recent research indicates that the brain issues could cause the prematurity or the prematurity could cause the brain damage. It’s one of those, “which came first, the chicken or the egg?" sort of things.

(And now I’m hungry for chickens or eggs.)

We know that Zoe Amanda’s CP is caused by several small areas of periventricular leukomalacia (PVL) that are spread out in her brain.

Peri-what? you say?

Here’s a link for you other research-loving nerds, but my best description is that she has small areas of dead or underdeveloped brain tissue. The fact that they’re small instead of big and spread out instead of all concentrated in one area could be a good thing. Or maybe not. Basically, brains are complex, and a small boo-boo in a crucial spot can affect someone just as much as a big boo-boo in a less vital area.

We’ll know more after reviewing her MRIs with people who know what they mean, but the best indicator of how she’ll develop is how she develops throughout her preschool years. Right now, she’s responding well to caregivers and, other than some muscular tightness in her upper thighs, seems to be developing typically so far; she’s only three-and-a-half months old, though, so only time will tell what the outcomes will be for her.

In other words, right now we have a diagnosis; we won’t have a prognosis until Zoe grows more and shows us what she can and can’t do.

For now, we’re trusting God with the unknown, and we’re thankful that He has called us to adopt so that “having a family” is one thing she can do. 

life worthy of love

Note: Today's post and - to a greater degree - tomorrow's will give some details about what Zoe Amanda's special needs are expected to be. While many of you have asked questions and I do want to answer them with transparency, I am taking a risk by posting about this so early in the adoption process. You see, cerebral palsy is something that Zoe Amanda has, not what she is. We want you to love and care for our baby girl as a person, not as a label. In most cases, you'd see pictures of a child and meet her before learning of a diagnosis, but we can't yet share pictures publicly and we haven't even met her. Information in the absence of a baby in our arms could have a dehumanizing effect, and we certainly don't want that.

Lee's approach to this? He just tells people we're adopting and doesn't mention special needs. His take is that everyone will figure it out eventually and he wants people to remember her name and not her disability. Me? Well, I'm sure it doesn't surprise you that I like to learn and offer as much information as possible. 

So read on, but as you learn about the special needs Zoe Amanda has been diagnosed with, please think of her as a kid first and foremost. If you think that might be a struggle for you, then just skip this post and tomorrow's and pick back up with us on Thursday or Friday. 

Thanks.

~+~

I’ve started a baby registry (one on Target, and another at my obsession Amazon), not so much for gifts but rather to help us keep track of what we do and don’t have for Zoe Amanda and what we need/want/desire. It’s helped in an unexpected way:

It has helped me wrap my mind around the realities of becoming a mom to a child with special needs.

I think we registered for a little kid potty for Jocelyn. When I saw those this time around, I realized that I don’t know if Zoe Amanda will ever be potty trained or not.

I considered strollers as something we’d use for a short period with our two oldest, and I considered pricey strollers with high weight limits to be an unnecessary and somewhat impractical luxury. Now I’m looking at brands I would have scoffed at before, considering what stroller might work well as Zoe Amanda grows. We don’t know for sure that she’ll need a wheelchair, but – considering that’s a good possibility – a stroller that can work well for a longer period as a pre-wheelchair option is a wise investment. (Side note: Anyone have a used fancy schmancy one – with life left in it, of course – in need of a new home? If so, we’d love our home to be its next stop!)

When Robbie and Jocelyn were babies, I tried to gauge what type of shoes to get them in each size, guessing when they would need “pre-walker,” “toddler,” and “walker” shoes. Zoe Amanda might never walk. Or she might use a walker. Or the braces she might need could work better with some shoes than others.

For everything we know, we realize how much we still don’t know.

I’m not anxious or sad or upset by any of this. Most parents of kids with special needs have to set aside their old dreams and dream new ones for their child. For us, we found out about Zoe Amanda and her cerebral palsy at the same time. It’s not what defines her, but to us it’s always been one characteristic that she happens to have.

People with CP have higher odds of other conditions – like epilepsy and autism – so we may experience unexpected diagnoses in the future… but we could experience that with Robbie or Jocelyn too. Regardless of labels and disability and all that, we will have a sweet reminder every time we say her name. 

Zoe Amanda

Zoe means “life,” and Amanda means “worthy of love.” Her name explains who she is, why we were called to adopt her, and what God has taught us in His word about disability and orphans. Hers is a life worthy of love. Christ declared that when He lived the sinless life we couldn't, died on the cross we deserved, and defeated death by his resurrection. For me. And you. And Lee and Robbie and Jocelyn. And Zoe Amanda.

In her name's meaning, we’re merely affirming what He already declared to be true.

Zoe Amanda, we have no idea what God has in store for you, but we look forward to finding out.

many thanks to Heather for taking this shot at church on Sunday

and to her husband and youngest daughter for goofing off behind her to elicit the smiles on the kids' faces

P.S. - If you'd like to know you can support us during this process, here are a couple posts about that: {part 1: financial support} and {part 2: PRAYER!}. 

Thanks, y'all.

how you can support our adoption {part 2: PRAYER!}

Wow! I'm not sure where to start with this one. There are so many requests we could share, so I know this list won't be exhaustive, but here are some things we're praying for...

For our family

• We know all of our lives are already changing and will change in a big and beautiful way this summer. As we prepared, we're praying
• that our marriage will be strengthened through this
• that our children will understand God's love in new ways
• that Jocelyn - who doesn't usually handle transitions well - will adapt to getting a baby sister, starting kindergarten, and going to summer day camp for the first time, all in one summer
• that Robbie - who is a momma's boy and fills the role of resident cuddler in our house - will adjust well to no longer being the baby of the family
• that Zoe Amanda will be loved and cared for well in Taiwan until we can bring her home and that her transition - as everything about her life will change when she comes home - goes as smoothly as possible
• that all of us - in our immediate and extended families - will be changed for the better in all this

For the logistics of the adoption

• I'll share more later this week about the steps along the way, but here are the some of the key ways we're praying:
• that God would allow our paperwork to be complete and acceptable the first time we submit it
• that the Chinese translations of our documents will be accurate
• that our schedule would fall on the shorter end of the spectrum so Zoe Amanda can join our family and receive needed therapies and treatments as soon as possible (as a note of explanation: lots of steps in the court process in Taiwan have estimates of "2-8 weeks," so we're praying that each of those steps be closer to two weeks instead of eight)
• that breakdowns in communication will be rare and quickly resolved
• that we will remain focused on Christ instead of the sea of paperwork around us
• We're praying that God will provide for the money needed to adopt Zoe Amanda, and we're praying for God's help in trusting Him in this area. (I'll admit I had a bit of a meltdown today about the moola. During lunch. In public. With my poor husband sitting across from me and fielding the "is your wife insane?" glances from the waiter.)

For health and energy

• A lot is happening very quickly, which means we have a constant to-do list... and one that will become more challenging if an illness hits any of the four of us. We're praying for protection from sickness for all of us. 
• Y'all know that the last five years have included the diagnosis of a couple of chronic health conditions for me. While those are under control and treatment right now, the only persistent area of anxiety for me in all this has been a fear that something new - like cancer - would be diagnosed that would make us ineligible to adopt Zoe Amanda. I'm not a big worrier, so I've been caught by surprise by this anxiety. I'm clinging to prayer and the truths of Philippians 4:6-8. 
• Our kids - who used to be great sleepers - haven't consistently slept well in the past six months. We're praying that they will rest well (which will also mean that we can rest well)!

For home plans

• We're still putting the house on the market in a couple weeks. We'd love it if our home would sell quickly and a new home that is perfect for our growing family would become available at the same time so that we can sell and buy and move before Zoe comes home. 
• We're praying for endurance through the home-selling process, whatever the length may be. We know it can be long or short; it can be 100 showings or just one; it can have ups and downs or proceed smoothly. While we're praying for the latter in each of those examples, we're also praying that God will sustain us through whatever timeline He has for this process.

For Access Ministry, the special needs ministry we coordinate at our church

• We are just as passionate - if not more - about this area of ministry and will continue in our present roles, but we know there will be a period of time of at least a month that we'll have to step back from that when we're traveling and first have Zoe Amanda home. We're praying for wisdom in handling the logistics to make sure we can serve our family well and others can serve our Access families well during the initial transition period.

If you'd join us in praying for just one of these requests, we'd appreciate it. And please join us in praising God for the journey He has set us on!


(If you'd like to see part one of this post, here you go: "how you can support our adoption {part 1: financial support}. Later this week, I'll post part three about practical support we would appreciate, but I have a couple other posts scheduled between now and then. 

And if you came across this post without reading other recent ones, you might want to start a few posts back, with our adoption announcement post and our thankful post.)

how you can support our adoption {part 1: financial support}

I wasn't going to devote a post of its own to donations, but many of you have asked, so here goes...

Here's the reality: bringing home Zoe Amanda will cost somewhere between $20,000 and $25,000, once you add together everything: court fees, travel costs, paperwork expenses, translations of documents, and so on. We had some money set aside and a savings plan in place for adoption, but we weren't planning to start the process until late fall 2012 and we were expecting a typical slow process rather than the fast-tracked (and exciting!) one set before us.

In other words, we don't have all the money we hoped to have saved and we don't have a long process in which to make up for that through a variety of innovative and carefully spread out fundraisers.

If you had asked us two weeks ago about our plans for adoption, our answer wouldn't have sounded anything like the exciting news we posted on Tuesday. Everything has developed so far in ways we never could have imagined and with speed we didn't know was possible in international adoption, and we are trusting that the finances will come together too. (God has already moved mountains to bind us to Zoe Amanda, so what's one more?)

Today and next week I'll be posting about prayer and practical support you can offer without a single penny. We've been asked enough times in the past couple of days about donations, though, that I figured it was time for a post to share how you can offer that kind of support if you are interested and able to do so:

Morning Light Home offers a way for those who wish to help with our adoption expenses to make a tax-deductible donation. A check can be written to "Central Missionary Clearinghouse" and mailed to the address below with an attached note that the funds be applied to "Deana and Luke Pan at Morning Light Home in Taiwan," and you will then receive a tax receipt for your donation. To make sure the donation is credited to our adoption, please send an email to Jeff Land at mlhadoption@gmail.com with our name (The Dingles) and the amount of the donation. Unless you indicate otherwise, Jeff will share your name with us so that we can thank you, but we will not know the amount given. The address for donations is:

Central Missionary Clearinghouse
P.O. Box 219228 
Houston, TX 77218-9228 

From my experiences with fundraising for the NC Children's Hospital and a couple other non-profits, I know small amounts can add up, so we'd appreciate any gift, no matter the size. Just make sure a separate note is included with the check so that the money is directed to Morning Light Home and an email is sent to the address above with our name and the amount so that our adoption is credited with the donation.

Also, we'll be having a silent auction in conjunction with the one fundraiser we have planned - our Chick-fil-a fundraising night (March 22 from 5-8pm at Chick-fil-a at Falls Village) - so if you know anyone who could donate something - like an item, gift card, service, or week at a beach or mountain home - please email me at shannon@dinglefest.com. 

The greatest gifts you can give us, though, are prayer and encouragement. Thank you for already providing that!

oh so very thankful

Today was an exhausting day, but the sweet encouragement I received from each of you carried me through. I have loved reading your texts, emails, and comments about our news. I am moved to tears right now even thinking about it. Y'all have reached through the computer and virtually hugged us, and we rejoice that our Zoe Amanda is being covered in prayer by you already.

Thankful.

Last night I had the opportunity to chat with one dear friend on the phone and two others over a latte at Jubala, allowing me to take a break from the paperwork and the cleaning.

Thankful.

After posting yesterday that we could use a crib, I had seven offers of cribs.

Thankful. 

A friend stopped me in the hall at Bible study yesterday to offer her daughter's baby girl clothes to Zoe Amanda. I'm not sure we'll need them, because Jocelyn had a plethora of baby clothes and we've saved them all, but it was still touching.

Thankful.

Lee's bosses gave him today off so we could spend all day on adoption paperwork and so that I could attend a meeting a church.

Thankful.

Precious friends of ours cared for Jocelyn and Robbie while our social worker came to evaluate our ability to parent the girl we already consider our own.

Thankful.

Our social worker scheduled us right away and will have the first draft of our completed home study ready on Monday for us to review to make sure everything is accurate and for our adoption coordinator to review to make sure it includes everything the Taiwanese courts will want to know.

Thankful.

The project leader for the Treasuring Christ curriculum included lunch in our team meeting today, which was the first food I had all day in the midst of all the busy-ness.

Thankful.

Our pediatrician and our family practice doctor each made sure we got the paperwork we needed right away to complete our home study.

Thankful.

GPS helped me get to the pediatrician's office after I discovered that it has moved. (Jenelle, when did that happen?)

Thankful.

The planning team for this weekend's special needs ministry respite event has stepped up in a major way, so that we can focus on bringing Zoe home instead of concerning ourselves with every detail for this weekend's event.

Thankful.

This gift arrived in the mail today. Taitung City on the southeast coast of the country - just labeled "Taitung" on the map below - is where Zoe Amanda lives now, and now I can wear it around my neck until I have her in my arms.

Thankful.

And now? I think a warm bath, a hot mug of coffee, and a good book are in order, followed closely by an early bedtime.

Thankful.

But before I go, know this: thankful doesn't cover it. You all are rallying around us while we fast-track everything to bring home Zoe Amanda, a baby girl we love now but we didn't know existed two weeks ago. While we are heeding God's call in these verses,

learn to do good; 

seek justice, correct oppression; 

bring justice to the fatherless, 

plead the widow's cause 

{Isaiah 1:17}

Religion that is pure and undefiled before God, the Father, is this: 

to visit orphans and widows in their affliction, 

and to keep oneself unstained from the world. 

{James 1:27}

you are doing so as well as you pour out encouragement on us. You are expressing your love for an orphan on the other side of the world. You are affirming with us the meaning of her name - "life worthy of love" - as you pray with us. When you gush with us over the chubby cheeks in the pictures we have of her and accept with us the unknown prognosis stemming from her diagnosis of cerebral palsy, you are agreeing with us that she is - in the words of Psalm 139:14 - fearfully and wonderfully made.

I said I'd be posting today about ways you can support us, but that will wait for another day. Because y'all have overwhelmed us with love and support already. 

Thank you. 
Thank you. 
Thank you.