Great Aunt Martha and April 21

We went to a funeral today.  It was a celebration of Carissa's Great Aunt Martha.  Honestly, I didn't know Martha very well at all.  I saw her maybe once every couple of years at a family gathering or family reunion ever since I started attending those things with Carissa back in the 90s.  I know I exchanged hugs and polite pleasantries with Martha on those occasions, but probably not much more than, "Hello, it's nice to see you.  It's so fun to have all the family together isn't it?"  I remember she had a very warm, gentle smile and just seemed like a really sweet lady.  The Lord gave her 90 years of life and by the accounts of her family today at the funeral, she lived them well, in faithful service to Him.

I think the last funeral I attended was our friend Elliott Orr's.  The Lord saw fit to give Elliott just 23 years of life.  He received 23, Martha received 90.  How does he do that?  Why does he do that?  I found out at the funeral today that Martha actually had 5 children, not just the 4 we know today.  She had a son born 2 months premature and he only lived a number of hours. And the Lord does that still -- gives some children only a few hours of breath and life.  It's hard to understand.

Funerals have an added dimension to them now.  I see Martha in that casket and I can't help but picture Louisa.  But it wouldn't be such a big casket in Louisa's case, they'd have a smaller one.  And it wouldn't be her son and grandsons eulogizing her, it would be her parents, probably a sibling if one of them was brave enough.  Actually, I'm pretty sure Carissa wouldn't be able to do it, so it would have to be her father.  It would be me.  But I can't imagine I could bear to do it.  What would I say about my little girl?  She hasn't accomplished any great humanitarian thing.  No athletic prowess to brag about.  She has no musical talent.  Sure I could talk about her goofy smile and carefree clumsiness.  I could talk about all the medical miracles. But, really, the most important thing I'd have to talk about would be the Lord.  I'd have to talk about the Lord and what he's done in her short life.  I don't know if I could get through a eulogy for my baby girl.  But, then again, I didn't think I could get through the first few months of her life.

Louisa now has surgery on the books in Ann Arbor.  She's scheduled for her completion Fontan operation on April 18, 2016.  Carissa called me a few weeks ago at work.  She was at Bible study when the surgeon's assistant who does the scheduling called.  Not a day goes by in my life at work that I don't say to one of my patients, "the folks at central scheduling will give you call to get this test scheduled as soon as we process all the paperwork and get approval from your insurance."  I say it every day.  It's no big deal to me.  But when you have a date on the calendar, it comes with a weight on your heart.  She was a bit panicked on the phone, hyperventilating a touch.  I tried to calm her down and wrote the date on a sticky note -- April 18.  I stuck it to my desk and looked at it for a while after convincing Carissa that she really could breathe and should go back to Bible study and enjoy some fellowship with the saints.  I just stared at that sticky note for a while.  April 18.  Hmm.  April 18...

On that day I'll drive my beautiful little girl back to Ann Arbor.  She'll be wondering why we forgot to give her any breakfast.  She'll wonder why mom is shaky and acting kind of crazy!  She might recognize the place when we pull up.  We'll check in and go to some kind of pre-op area.  All the medical people will be there just going about their day.  April 18 will be like any other day to them.  The surgeon will probably come by to do the obligatory pre-op greeting.  He's done thousands of these.  We'll probably be one of at least a couple cases for him that day.  Then probably the fellow will show up to do the dreaded informed consent where they tell you all the horrific things that might happen to our beautiful Louisa and are we sure we want to go through with it?  I'll sign it.  What will I be doing signing that thing?  Are we sure there isn't another way to do this that isn't this?  And then we'll give her our last desperate kisses, trying to be strong and hoping she doesn't sense our fear.  And we'll send her off.  Off for them to anesthetize and paralyze and incise and saw and cross-clamp and arrest and bypass and cool and cut.  And then what.  And then what will happen next on April 18?

I'll admit, I'm terrified of April 18.  But I think I'm a bit more fearful of April 19 and 20 and 21.  I have a pretty good idea of how April 18 will go.  Well, at least the first half.  So what about April 19?  And April 20?  Could it be a funeral on April 21?  Ahhhh, stop this nonsense!  Why am I allowing myself to even think about it!  This is nuts!  She's probably going to be fine.  We do NOT need to start planning funerals!  And then I remember where I am, I'm at Aunt Martha's funeral.  It's not Louisa's funeral.  It's not April 21, it's November 11, 2015.

It hit me hard today how simple our task is here.  Oh how I complicate it, but it really is simple -- just pass on the good deposit of faith that was given to you.  That's it.  We faithfully pass it along.  It's funny how there seems to be a tiny something in all of us that wants to be great, wants to be made much of, wants to be well known.  Aunt Martha may have had a bit of that too, but as far as I know she didn't leave a huge mark on science, culture, sports -- whatever.  But she faithfully passed on an inheritance of faith.  Her son Tim preached it today.  Her grandsons eloquently spoke of it too and I know they're faithfully teaching her great-grandchildren now. That is greatness.  She wanted a gospel-centered funeral.  She asked the pastor to preach the gospel and he did.  And she asked uncle Jim to lead an impromptu volunteer choir in singing the Hallelujah Chorus.  And they did it!  And it hit me again -- all of this is about Jesus.  Whether it's 90 years or 90 minutes, or 23 years or 2 years.   Martha got it, it's about Jesus.  It's about passing on the faith to the next generation.  It's so simple.  Just tell your kids about it.  Tell your grandkids.  Tell your friends.  Tell them over and over.  Make sure they know that Jesus is the most important thing in your life.  Sure the details of life and doctrine can get a bit messy, but don't make it more complicated that it has to be.

So, Aunt Martha's "April 21" has come and gone.  I filed out of the little church after saying good-bye to the family and Carissa and I took off to enjoy what was left of the afternoon.  We stopped for lunch at the Bavarian Inn in Frankenmuth so Carissa could get some buttered noodles that remind her of her childhood with those wonderful old German saints.  And we ran in to the Adidas outlet so I could get a new t-shirt.  And the Lord reigns over all that "normal" stuff too.  Funerals and Adidas t-shirts on the same day.  It's weird.  But it makes sense because King Jesus is Lord of ALL.  He reigns over Great Aunt Martha's 90 years and he reigns over Louisa's April 18 and 19 and 20 and 21.  I've had 37 April 21s in my life so far and I've lived through each one.  I'm praying Louisa has more than 2 April 21s in her lifetime.  But even if 2 is all that are ordained for her, I'll do my darndest to get up in front of that church and talk about the gospel -- the good news of Jesus Christ overcoming sin and death and securing eternal life for all who will come to him and exchange their burden for his easy yoke.

This little church outside of Flint has a tall steeple and a bell at the top.  There's a long wooden pole that extends down into the foyer at the back of the church.  After the service concluded, there was a man who just kept pulling on that pole and ringing the bell.  Over and over again.  He must have rung that bell for a solid 45 minutes while the family said goodbye and they closed the casket for the last time.  That bell kept ringing and ringing.  It was like the Hallelujah Chorus.  There aren't a whole lot of words in that song, and most of them are "Hallelujah" but they're pretty much the only words you'll ever need to know in this life:

Hallelujah Hallelujah Hallelujah Hallelujah Hallelujah
Hallelujah Hallelujah Hallelujah Hallelujah Hallelujah

For the Lord God omnipotent reigneth
Hallelujah Hallelujah Hallelujah Hallelujah
For the Lord God omnipotent reigneth
Hallelujah Hallelujah Hallelujah Hallelujah

King of kings and Lord of lords
King of kings and Lord of lords
And He shall reign forever and ever
Forever and ever

Hallelujah Hallelujah Hallelujah Hallelujah
Hallelujah

My silly Adidas t-shirt has a number "3" on it (you know, Adidas is "the brand with the 3 stripes").  I'm thinking I'll wear it on April 21, 2016. That'll be Louisa's 3rd April 21.  And maybe we'll dress her up in that sweet purple Adidas track jacket and purple leggings we got her today.  That is, if enough tubes and wires are out by then.

Carissa and Molly with their dear Grandma Ella at the funeral. Martha, Ella, Emma, and Adeline have been best friends since they were little girls and Martha and Ella married brothers. Martha was the first of the 4 friends to go at age 90. A wonderful heritage of faith and some tough ladies.

Back to the heartland

Lately we've been pretty consumed with adoption related issues, as we've had some hard stuff in that area. However, in one week from today we head down to U of M for a sedated echo to get a good look at the heart function of our sweet baby Lou. This appointment will kind of determine what the next 6 months will look like for Louisa and make sure it's ok to wait until Spring for the big bad Fontan. And just like that, the needle on the record player in my brain screeches and abruptly changes the subject of the noise from adoption stuff back to the heartland. I start reading blogs/facebook groups/googling more. I find myself fine tuning our "Baby Louisa" playlist to make sure there's enough good music on there in case we end up in the hospital sooner than later. I have to do more mental work to prevent seeing the various faces of our doctors and surgeons coming into the room with bad news over and over again in my head. I stare longer at that sweet girl bobbing around the room. I pray harder and I cry more easily.

We just started a series on Exodus a few weeks ago at church that has been off. the. hook. Really, ridiculously perfect for both of my big issues and once again I am thankful for the Lord's tender and specific care through his Word and the preaching of it. A few weeks ago it was good old Moses in the basket and Pastor talked about how Moses' mother was a woman of remarkable courage motivated not by fear of Pharaoh, but fear of the Lord and faith in his promises. How I long for that remarkable courage! "Sometimes the bravest thing a mom can do is to let go of the child that belongs to God even more than it ever belonged to her." AHHHH! That's right. We're gonna put our baby in the basket again, push her off, lay her down at the alter again, and trust our God, who cares for her more than we could ever imagine to.

And then 2 weeks ago was that wonderful passage where God heard, remembered, saw, and knew his people. A story of divine deliverance, even though it looked like slavery for 430 years. I am so glad we know that our trials won't last for 430 years! It was so good, it got written on the board as a reminder:

So anyway, prayers appreciated for a nice, boring clinic appointment on Monday. Our whole family could really use a few more months of down time before we head back to start the roller coaster ride of another open heart surgery.

And here is a quote that Nick just found for me, I think it's lovely and a good common grace reminder to never give up hope. It is essential on this journey.

"The physician should encourage parents to allow the cardiac child to lead as normal a life as possible. He should remind them not to spoil the child. Both physician and parent should maintain a cheerful outlook, this is certainly justifiable, as a malformation which cannot be helped at the present time may well become amenable to surgery in the near future."  -Helen Taussig, 1898-1986, pioneer in pediatric cardiology

can't. get. enough.

Still one of her dad's favorite activities to do with her

Doing some serious reading

She caught me taking a picture and flashed that famous cheeseball smile

First day reflections (Next year the bribe is limited to take-out)

I know people exist out there that contentedly sigh at the end of the first day of school because of how smoothly everything went, knowing that their children can't wait to get up in the morning and start living the dream all over again. I had appropriate expectations knowing that wouldn't quite be our story today, but I wasn't sure what the details would look like. Now that the day is over, it's really nice not to have the anxiety of anticipation anymore. There will never be another "first day of school 2015", and to be sure, I am giving a mother-load sized sigh of relief about that.

We started prepping everyone a while ago, like good parents of kids who struggle with adoption-related issues should do. Both boys started a new school this year, and one transitioned from special ed to gen ed, so we knew going into this year that we might have some bumps in the road. Something I read the other night was talking about the "trifecta of attachment-related drama" being attention, emotional control, and pity from strangers, and we have definitely been seeing some of that in various ways as the school year has approached. So we have been trying to talk about all of it in serious-sit-down-and-talk ways, nonchalant-in-passing ways, tell-me-about-your-feelings ways, fun ways, silly ways, anything we could think of ways. We have tried to spend extra special time together, filling up those tanks and reminding them of how secure they are in our love and our family. We bought cool new clothes and prepared outfits for the entire first week. We have done some bribing, the biggest of which was the promise of going out as a family for Chinese food (Donavon's favorite) if he could make it through the day! Little whispered chants could be heard throughout last week, "Chinese chicken, Chinese chicken, you can do this..." 

This is how we started the day today... Kelvin bounded into our room and shouted, "King Kelvin is here and I'm ready for school!" Yes!! I like the sound of that. And D got on the bus like a champ (with the help of our good friend who popped over during the getting ready process to encourage him to stay on top of the big emotions).

                                       

Things got a bit dicey when I got to Kelvin's class with him. It was pretty overwhelming with 25 kids, one or two parents per kid, no air conditioning, lots of noise, and minimal structure, the perfect storm for our dear boy. Here is a picture of the story time with all the nice boys and girls doing criss cross applesauce - you can guess who the boy is with his butt in the air facing the teacher...

notice the privacy editing skills

All of a sudden while I was trying to decide if I was supposed to intervene or not, the kindergarten poltergeist knocked out the large window screen behind me and it smashed onto my head out of nowhere. I proceeded to take out all my angst on the stupid screen, muttering about the Bumpuses under my breath, trying to slam it back into place. The nice mom next to me leaned over and whispered that maybe I should just prop it against the window and not worry about making it fit. Ok, yeah, good idea. Of course, 5 minutes later it lands on my head again. Seriously?? Crazy white lady with a screen on her head AGAIN.

So then all the parents were herded into the cafeteria to hear the very important kindergarten curriculum spiel, and 10 minutes into it, a lady starts slowly walking the aisles holding up the name tag of a kid... can't be mine, can't be mine, can't be mine. Yeeess, ok, it's mine, that's no problem, it's totally fine, I can handle it. What's that you say? He's rolling around on the floor, making weird sounds, chewing his shirt, only wants to talk about his new shoes and won't do the prescribed activity? Mm-hmm. Yep, I actually already knew that he does stuff like that when he's nervous. The special ed people said he was ready - maybe you should take it up with them.


Anyway, blah, blah, blah, I made it out of the building without crying, accompanied by my friend/fellow school mom who said on the way to the car, "can you imagine how the morning would've gone if we didn't have people praying for us??" Good point! I got home, grabbed the home schoolers/heart babies that were left at home and high tailed it our posh new local Dunkin' Donuts to medicate myself.

And this is what the fancy tag from school that had Kelvin's name, bus number, address, etc. attached with a zip tie looked like when he got home... that's right, empty. It lasted exactly one half of one bus ride and then the perpetrator removed it and left it on the seat.

The dinner hour arrived and we had to make good on our promise of a Chinese dinner "out" (going out to dinner generates similar excitement as going to an amusement park for a family of 9, and it might be almost as much work). Apparently the child and parents had different ideas of which restaurant we were going to (ours didn't involve a buffet) and that bought us a fantastic freak-out. We still made it out of the house by the skin of our teeth, but unfortunately we forgot that the public sector is Enemy #1 for families like ours (we always convince ourselves that this might be the time it will go well for us). We paid dearly for trying to take our little side show to the mall food court (which it turns out is not as popular as it once was back in the golden era of food courts, when it was located next to Service Merchandise and it included a Cinnabon). Here's a picture of the time Kelvin was throwing a full-blown tantrum and his mom just decided to snap a few pictures because she had done enough intense parenting for the day (it's too shameful to speak in the first person at this point):

That's when Nick says, "Next year, the bribe is limited to take-out. No more malls."

She's officially a walker!

One of my favorite things is to watch a brand new walker and the way they stumble around on shrimpy little legs looking like a drunk Frankenstein. There were multiple times last year we didn't think that would ever happen with our dear Louisa Joy. I'll never forget the weekend after her second open heart surgery when she screamed and arched her back in pain for 3 solid days, and we just had to watch helplessly. It felt like almost every specialist in that hospital saw her and didn't have an answer. That bought us a CT scan and an MRI where they found yet another hemorrhage in her brain as well as 3 different strokes. They told us we would just have to wait and see if and how much she would improve. She had been through so much already, once again I felt all my hopes and dreams for her slipping away. And now at 19 months old, that makes each milestone so much sweeter, so much more incredible and miraculous to witness. What a gift we have been given to so clearly see how each little stage of development is a particular grace. Sometimes I have to just sit and watch her putz around for a while, and every single time I watch her I think about the Lord's mercy to us. Who would've thought watching this for the 7th time could bring such crazy joy. But that's what this girl does. I don't know how many days the Lord will let Louisa take steps on this earth, but I wouldn't want her any other way. Today I can thank the Lord for Louisa's half heart and all we've been given through it.

       

I think the caramel macchiato definitely gave her that extra boost of energy.

Summer sweetness

One of Lou's favorite people in the world - Dada #2

Nettles turns 13!

Natalie Rose joins Noah in the teen years! All she wanted this year was a working typewriter, which was easier said than done... but Joyce King saved the day with a machine she didn't want anymore. We started with the traditional breakfast with Mom and Dad at Cracker Barrel, some pot pie for dinner and a game night with her friends to finish it all off. We love you Natti, your bright smile and silly antics are a joy!

her pretty machine

with her lovely gifts from the little girls

with her Kelvin

chocolate chip cookie cheescake bars for the teenager

Lovely lady rocking the gap from her expander!

Camping and Birthday Town for 3

This summer's week-long camping trip was very exciting because we didn't have to bring a feeding tube and pump like last year! We had beautiful weather, 3 family birthdays while we were there, and most of the kids had a great time, so overall it was a success. Kids with attachment issues definitely struggle when there is a lot less structure than normal!

Beach baby

Not much better than eating ice cream at a Lake Michigan sunset

Sleeping at the beach

Louisa's favorite spot to play under the camper 

Little Mermaid

Peek-a-boo

Lou's outdoor shower

so darn cute

Big kids hanging out

Birthday present time for the 3 birthday buddies

Maizy got her first waffle cone for her birthday treat AND a clapping monkey from the candy store... 7!

Kelvin climbed some trees for his birthday this year... 5!!!

And Donavon played basketball, because that's kind of all he wanted to do this week... 8!!!

Mackinac with the bigs

Noah, Natti and I tagged along with Nick to his medical conference at the Grand. Besides the one day that Noah was in bed puking and dying of a headache, it was a great trip for the four of us!

Skipping stones at the Mighty Mac

our favorite spot next to the fort

Noah's sick day

getting ready for dinner

incredible dining room

demitasse after dinner

croquet on the lawn

Louisa takes a stroll (once)

Keeping consistent with our theory that C.S. Mott Children's Hospital exists in an alternate universe, outside of the space-time continuum, where time stops and speeds up at the same time, and strange and bizarre things happen, sometimes good and sometimes bad...

We were in the waiting room at the Neurodevelopmental clinic last Monday, where the psychologist would tell us that we need to keep an eye on Louisa's gross motor skills and language (shocker). Louisa has stood up on her own a handful of times and has maybe taken a step or two in the accidental, falling into it kind of way. And then all of a sudden she did this...

She was so proud of herself and we were hooting and hollering in the waiting room, telling the receptionist all about it!! It was the cutest thing ever until she did a major face plant. And of course our dear little 17 month-old hasn't done it again since :). Weird. But so Louisa.

Even if she can't actually walk outside of the hospital, she's intensely cute in a bathing suit.