Sunday, April 1, 2012


Shep devoured popsicles,pre-throwing up. You can see his sticks he collected. The bottom left picture is his trach site bandaged up, but without a trach. And, of course, his trains.

This has been a very special week for our family.
One I don't want to pass by easily.
We're terribly busy. Too busy.
And asking God for wisdom, for ways to not end up here so often.
But especially in the busyness, I feel the need to not let the experience move past me so quickly,
without leaving a "marker."
Something that flags this week, these moments as works of God's hands.
As grace poured out on a boy, and on a family.

First there was March 26th.

It came with self controlled expectation, refusing to put too much hope in what is unknown.
And it left us in a moment we had been eagerly awaiting for 3 years.
That's so long.
And so short.
All at once.
That night, after his decanulation, Shepherd got really sick.
We're guessing it was from one of the processes done during his bronchoscopy.
He started vomiting and developed a high fever and a rash from head to toe.
He just kept saying, "momma,momma,momma."
He was really almost delirious at that point.
In his endless rant of my name, even in that, things were new.
He's a little boy who's never fallen asleep to the sound of his own voice soothing himself, hoarse as it still may be.

His fever finally broke and he slept through the night at the hospital, snuggled between Noah and I on a pullout couch/bed.
This too, has always been impossible.
He's always had to sleep attached to a mist humidifying collar, and they never reach far.
This meant the parent doing the cuddling would be confined to the hospital bed with him, or at home, to his bed with him.
That night, even with an IV and a pulse ox, we stretched it far and long for the luxury of his warmth between us.
And the staff was kind enough to simply leave us alone for the night, which is soooo kind.
No vitals,meds,nothing.

He saturated fine through the night and remarkably just kept breathing on his own, without a trach.
It's all kind of mind boggling to me, to watch him breath in and out,steady and easy and comfortable, and on his own.
He hasn't done that in his entire life, save the 2 days before his heart surgery, day 1 and 2 of his life.
After that it was all struggle, until the trach at 2 weeks.
They felt good enough about things to discharge us by noon that day.
He still wasn't himself.
It's taken him awhile to perk back up after everything but I think he's finding his feet.
To be honest, I think he has a lot of physical healing to do.
But we also think that he has a lot going on emotionally that we don't fully grasp.
He's just not himself quite yet.
The best word I can seem to find for him right now is "insecure."
It's as if so much has changed and he's simply unsure, unsteady, unconfident about how he feels about it all.
He just needs time.
This is all part of God's shaping hand in his beautiful life.
Time in God's hands will do much for him.
I feel that this picture really captures how Shepherd is feeling in this transitional season.

Then there was March 28th.
It's his 3rd birthday.
He was due April 16th. I was going to have a Spring baby,
and get to take long,evening, family walks during those fussy newborn evenings.
But they realized at 37 weeks that this little guy needed to come into the world NOW, so they induced me.
And instead of Spring walks, we were swallowed up by the hospital for 2 months and spit back out in the blistering heat of June.
But I didn't care.
It could of been the cold of January.
He came home.

Shep was still pretty tired from his surgery but we felt the need to celebrate both his birthday and the new found freedom of travel without a bunch of equipment so we planned a day out for his birthday.

His dear sweet L and her husband got him this power wheel "Cars" 4 wheeler before we left for the day. Need I point out what a hit this bday gift was. So I asked him to smile for me...and I got the picture on the right. It's a deliberate rolling of the eyes. Who needs daughters when you have boys like this?

Then it was off to Kankis. This is Haddon's favorite place to eat and we owed him a bday meal here, so, feeling very celebratory anyhow,we headed in to see them blow up our food in front of our very eyes. 2 birthday meals with one visit. We are so efficient.

After lunch,we decided to head over to Pullen Park, which was recently renovated.
It rocked our world. I was VERY impressed.
Oh, and the kids liked it too.
We got to ride a Carousel.
Which was magical.
And the kids liked it too.

At Pullen Park, we rode the kiddie boats.
I was too big.
But the kids liked it.
Then the train.
The wind blowing through my hair on a perfect Spring afternoon.
The kids didn't mind it either.

And they even have a huge playground with child sized diggers.
Although Shep wasn't quite up to the task, super gramma stepped in an before we knew it there was no more sand in the entire playground.
After that, we took the older boys with Noah and I on a paddle boat.
And Haddon found an inch worm.
And later, we found frozen yogurt.
To finish the day off, I made Shepherd his favorite meal, THIS macaroni and cheese recipe.
Which is soooo not Paleo, btw. (and to fix a funny typo, apparently a few posts back, when referring to our dietary changes, I said we were doing no fat but meant to say "LOTS of fat"...kinda funny, I thought. Just in case you were confused)
It's no grains, but LOTS of protein and fat. SO mac'n'cheese isn't remotely involved.
But it's my baby's birthday so I made a sacrifice and downed an entire crockpot of it.
I'm such a good mother.

To finish off the week, we celebrated on April 1st.
It was on this day, when he was 4 days old, that I rubbed his tiny,fuzzy, strawberry blond head and prayed for him and said good bye and let them roll him away for heart surgery.
Our pastors, our friends, and our family huddled around us for those hours that we waited,
and we prayed.
I had to sit in silence and journal my prayers.
I even journaled their prayers.
It was my way of keeping my eyes on Jesus, instead of wondering what was happening in those monumental moments that the clock ticked away.
Then they came out to tell us that it had all gone great and we could breath a sigh of relief.
But it would be the first of many heavy sighs, few of which carried relief in the coming months, as his recovery went so terribly.
So many moments packed into those months and then the transition to a new way of life with nurses and trachs and equipment in our home, in our life, building memories.
And now we get ready to say good bye to this season and into the next.
And through it all, may we take no gift from God for granted, no matter if it looks like disappointment, or fulfilled expectations.
He is good.
He is faithful.
I can say, like the Israelites in those 40 years in the wilderness...
That God kept our "feet from swelling and our sandlas from wearing out."
May we never forget who keeps us through all seasons and all journeys...

Deuteronomy 8

“The whole commandment that I command you today (A)you shall be careful to do, that you may live and multiply, and go in and possess the land that the Lord swore to give to your fathers. 2 And you shall remember the whole way that the Lord your God has led you(B)these forty years in the wilderness, that he might humble you, (C)testing you (D)to know what was in your heart, (E)whether you would keep his commandments or not. 3 And he humbled you and (F)let you hunger and (G)fed you with manna, which you did not know, nor did your fathers know, that he might make you know that (H)man does not live by bread alone, but man lives by every word[a] that comes from the mouth of the Lord. 4 (I)Your clothing did not wear out on you and your foot did not swell these forty years. 5 Know then in your heart that, (J)as a man disciplines his son, the Lord your God disciplines you. 6 So you shall keep the commandments of the Lord your God by walking in his ways and by fearing him. 7 For the Lord your God is bringing you into a good land, (K)a land of brooks of water, of fountains and springs, flowing out in the valleys and hills, 8 a land of wheat and barley, (L)of vines and fig trees and pomegranates, a land of olive trees and honey, 9 a land in which you will eat bread without scarcity, in which you will lack nothing, a land whose stones are iron, and out of whose hills you can dig copper. 10 And you shall eat and be full, and you shall bless the Lord your God for the good land he has given you.

11 “Take care lest you forget the Lord your God by not keeping his commandments and his rules and his statutes, which I command you today, 12 (M)lest, when you have eaten and are full and have built good houses and live in them, 13 and when your herds and flocks multiply and your silver and gold is multiplied and all that you have is multiplied, 14 (N)then your heart be lifted up, and you (O)forget the Lord your God, who brought you out of the land of Egypt, out of the house of slavery, 15 who (P)led you through the great and terrifying wilderness, (Q)with its fiery serpents and scorpions (R)and thirsty ground where there was no water, (S)who brought you water out of the flinty rock, 16 who fed you in the wilderness with (T)manna that your fathers did not know, that he might humble you and test you, (U)to do you good in the end. 17 Beware (V)lest you say in your heart, ‘My power and the might of my hand have gotten me this wealth.’ 18 You shall remember the Lord your God, for (W)it is he who gives you power to get wealth, (X)that he may confirm his covenant that he swore to your fathers, as it is this day. 19 And if you forget the Lord your God and go after other gods and serve them and worship them, (Y)I solemnly warn you today that you shall surely perish. 20 Like the nations that the Lord makes to perish before you, (Z)so shall you perish, because you would not obey the voice of the Lord your God.

    1 comment:

    Ashley said...

    thank you for sharing His beautiful work in your family. whew.