Project 365: Week 4

January 28: Big Sister telling Baby Sister scary stories about wolves. Hmm...





January 27: How Evelyn feels about having her hair done. Oh, and look, I'm actually part of the family, too!





January 26: Evelyn insisted on helping Daddy with his sliver. And then she attacked the poor finger with determination with her little tweezers! Daddy sat very still and was incredibly patient with her! 

January 25: Experimenting with using my 50mm as a macro: Emmy's eye.






January 24 (again): Looking for good light for a photography assignment: Emmy and her (Pippi Longstocking) braids.






January 24: 5:48 am: Woke up to the sound of a little voice in the living room, came out to find this: Evie Claire had turned on the lights and was jumping back and forth across the couch with enough energy to power the local grid...oh if only we could harness it!






January 23: Joshua's daily chore is bringing in all of the wood we need to heat our old, drafty farmhouse exclusively with wood heat. He does this every day without complaint, even when it's 5 degrees outside. I am so proud of him!





January 22: The Girls:

Elayna doing her schoolwork.

Emmy during indoor recess (it was COLD outside with windchill around -15)

And Little Miss Evelyn giving me this look and pretending clothing is optional while she watches Curious George on my phone:

Project 365: Week 3

January 21 - Evelyn reading to her baby doll.



January 20 - Shopping with 4 kids.





January 19 - Emmy picking up her dissected pieces of lego men/things to feed to her dinosaur.




January 18 - A trip to the warehouse district, downtown Traverse City. This is the back side of the old Candle Factory




January 17 - Little Miss Evelyn *almost* seeming repentant for her three potty accidents and the resulting pile of laundry.

January 16 - The old barn in a light dusting of snow. With the Christmas wreath still decorating the north side.

January 15 -  Twert thinks he owns whatever touches the floor! Nerd Bird!

Project 365: Week 2

January 14 - Evelyn out in the snow in her (very) furry snowsuit.





January 13 - Emmy trying to look cute and get away with not cleaning her room. It almost worked. ;)




January 12 - Colby reading to me on Sabbath afternoon when I had a headache.





January 11 - Evelyn trying to sneak a lollipop from the cupboard.





January 10 - Evelyn: "Oh no! Raisin fingers and raisin toes!"

January 9 - Oddball the black panther looks away in disdain.

January 8 - Elayna looking a little mischievous!

Project 365: Week 1

This year I'm going to attempt to complete a Project 365 - which is just a fancy way of saying that I'm going to document our life by taking one picture a day. So far, in week one, I've taken at least a hundred pictures and managed to whittle it down to my "one" a day with much difficulty. And that's after deciding to start this project on the THIRD of January. Or was it the fourth? Yes, it must have been the fourth. Anyway, without further ado, here is week one of my "Project 365: Our Life: A Study in Black and White". Perhaps I should come up with a somewhat less pretentious title for this before we all get sick of it.

In reverse order so it makes more sense to me when I scroll down through several posts.

January 7: Praying over his Cheerios.

January 6: An afternoon of sledding behind the barn before Winter Break finally ends.

January 5, Someone was caught snitching a piece of carrot cake!

January 2: Saying Goodbye to Grandma and Grandpa Allen.

Little Hearts and Little Hopes

Last week we headed down to Grand Rapids to see Joshua's cardiologist. We go every two years now for check-ups, and this was just routine.






EKG looked good. All four BPs were normal and equal. But since we've been noticing that Joshua gets out of breath quickly, and since he does still have a "nonspecific systolic murmur", his doctor decided to go ahead and do the full work-up with an echocardiogram just to get a good idea of exactly what was going on with his heart.



The process of getting an echo has come a long way since Joshua's first! He was in a comfy bed, with lots of pillows to prop him and a bed that moved up and down according to the needs of the tech. At his fingertips was a remote for the TV on the wall, with an enormous list of movies to choose from to watch during the procedure!



Afterwards we waited for the doctor back in the exam room. After almost half an hour he came in, saying "Sometimes God works in mysterious ways!", and proceeded to tell us that he had just been speaking with a young man (19 years old) who had also lost his voice the same way Joshua had, but that he'd recently had a procedure done in Chicago that had restored his voice completely! Dr. Lacina was excited about the possibilities for Joshua!

We discussed how Joshua's results of the echo looked good. His murmur is not causing any problems or indicating a need for further treatment at this time. We'll keep watching it, but other than the murmur his heart looks healthy and his aortic repair site remains clear and unobstructed by scar tissue.

That's AWESOME news!!! But that also means that the breathlessness when he's active is caused not by his heart - but by his airway being obstructed by the sagging, atrophied muscle of the paralyzed vocal fold. We knew there was a possibility of obstruction eventually, but since he has not indicated any trouble with swallowing or drinking fluids, it hadn't crossed my mind that it was obstructing his breathing while active.

Up until this point the only procedure I'd heard of was one that pulled up the vocal fold and sort of pinned it back, out of the way, which resolves the obstruction, but does nothing to help the voice regain strength since sound is caused by the two halves of the fold coming tightly together and vibrating against one another, not by being apart. This was the first time we discussed anything that would restore his voice, and it was exciting!

From what little we know at this point, the vocal fold would receive a transplanted nerve, restoring tone and firmness so that the other half of the vocal fold can connect with it, however, actual muscle control would not be restored. As far as we know, there is no procedure that does restore muscle control. Dr. Lacina is speaking with colleagues and doing more research for us and I will speak to him again in two weeks to gather more information and hopefully get a referral to an ENT doctor or laryngeal specialist who will consult with us.

So what that means on a practical level is that Joshua seems to have a good chance of recovering his voice in the not so distant future, however it's not clear yet whether that will resolve his airway obstruction issue since the muscle will likely still be unable to retract. So that's the news right now!



I'm excited and I'm nervous!!! I can't wait to see what this year brings and wonder what it would like to be able to hear Joshua speak from the backseat of the car, or yell from across the yard, or not worry when he's outside that he'll be hurt and unable to call effectively for help. When he was younger he used to carry a whistle so he could use it if necessary. I wonder what it would be like to have him be at least as loud as his sisters.

But on the other hand, the surgery to complete the laryngeal reinnervation of his vocal fold is not simple. It's kind of scary, like all surgeries requiring your child be put under general anesthesia. Or where incisions are made in the neck. Or when they're going to dissect a nerve.

So, there is a lot to think about and pray about and a little bit of hope sitting there waiting like a gift under the Christmas tree!

Halfway

So this is what half way looks like.

Halfway to a drive to the post office, a card that says "I'm 18." A possibility that will make my heart ache with fear and pride.

I remember the day we met. You had been mine for nine months already, making me sick, making me miserable, making me sleepless with worry and anticipation and leg cramps.

You gave me stretch marks, even though you weren't that big and I didn't gain that much.

You put me through pain through two miserable nights of sleepless agony. Back labor. Homebirth. No relief from the pain except during those moments in the hot water when I would pass out from the exhaustion with my head hanging over the side of the birthing tub. Aunt Raini held my shoulders up because my strength was gone.

Into the water you were born, and in that moment I not only met you - I met myself.  Hello, Little Mother, you are stronger than you thought you were!, my heart said at the same moment I saw you.  Aloud, to the rest of the world, I said, "Joshua. His name is Joshua.", for it was my pleasure and privilege to introduce you to everyone else. You belonged to just me no longer. It was the beginning of this journey of yours from helpless babe in my arms to independent man, standing alone in this world before God and everyone else.

But never believe you are alone. We may be halfway through this part of our journey together, but I'll always be with you. You can't get away from me. I'll be the little voice in your ear that says, "Put the toilet seat down, son!", even in the middle of the night when you're in a college dorm room with only guys. Of course, you'll ignore that voice and leave the seat up forming a bad habit that will cause your wife to fall in the toilet someday when she's big and pregnant. But that will be for you guys to work out.

Yes, someday you'll be hers. She will be the light that draws you forward, the comfort that brings you home. And though that day is still far off, I can't help but think about it. You see, the first half of this journey from baby to man has gone so fast, I think one day I'm going to wake up to find my life has been on fast forward and just look around to see a man in a tux and a girl in white and I won't even know what happened.

Remember the snuggles for me. Remember the stories read and the songs sang. Remember the prayers repeated with childish words.

I don't know what the second half of this journey looks like. But I know you'll be the first to complete it, and that it will be gone faster than I wish for. I know the memories we will make won't look at all like the memories we made in the first nine years, but I know they will be as deep, as lasting, as bonding to our hearts in different ways.

 In nine years, maybe your plans will keep you close to this home of ours, close to my hearth, close to your home-cooked favorite things. And maybe the plans you've heard God calling you to will take you far away from my arms. I know this, though: I won't be ready. But you will be. You will be. And like the amazing, God-ordained process by which you came to be in my arms that November day 9 years ago, I will have as much control over it in 2021 as I did in 2003.

It will be okay. I'll be held up by the many arms of mothers who've walked the path before me, by your father, by Auntie Raini. Hopefully, at the end of that day, I'll hear my heart whisper those words once again, "You are stronger than you thought you were."

Because, like you always, always have, you've given my life more purpose, my heart hope, my soul joy. You've reminded me daily of why God values me:

A Parent's Love.

And that never changes.

I love you, Joshua.