His Creation

Even the darkness is not dark to you; 

the night is bright as the day,

for darkness is as light with you.

For you formed my inward parts;

you knitted me together in my mother's womb.

I praise you, for I am fearfully and wonderfully made.

Wonderful are your works, my soul knows it very well.

My frame was not hidden from you,

when I was being made in secret,

intricately woven in the depths of the earth.

Your eyes saw my unformed substance;

in your book were written, every one of them,

the days that were formed for me,

when as yet there was none of them.

I am fearfully and wonderfully made.

Loss

Calvin is still doing fantastic. Last night he slept from 11-8! I thought I woke on that solo vacation I've been dreaming about. But no, there he was snorting, smiling, and craning his head towards the light from the window. We haven't slept like that in almost two years.

I have no idea how long this good stretch will last. It's the longest it's ever been, perhaps due to the summer weather and lack or respiratory issues that always put him in such a downward spiral. I worry about this fall and winter but for now it's all enjoyment and relief in our home.

This peaceful stretch has made me realize some level of normalcy again in life and how stressful it is to be living in constant loss and suffering. I wrote a small little piece on loss. One of my weaknesses may be feeling things too much, but I that's all I know how to do. Feel it, think it, write it.

Loss comes in different ways. I've been thinking about my friend's mom with Parkinson's, a girl recently separated from her husband and struggling to care for her disabled daughter, a father fighting cancer, a family whose children have been unjustly taken away. I think all of those situations, especially those that surprise us, leave us with these sentiments.

The cool thing about having a blog is you can write what you like. So here it is folks, the editor's nightmare. And that's okay. I have no idea if it's poetry, an essay, or just freehand words. Whatever it is, it spilled out on paper and I wonder if you can relate to it too.

LOSS

Loss sweeps you off your feet.  

It comes, uninvited, with no apology

It lifts you up, tips you upside-down

and shakes you til you're empty

and it's hard to find any piece of you left.

It broadsides you. You may be 

looking up at the sun, reaching 

for the next mercy that's before you.

It hits you from behind and your feet,

they flail wildly unable to touch

the ground and find security, stability.

Survival makes them quiet. Makes

them set down beneath you and move

forward shakily on this new ground.

Your hearts stays behind but your feet

they move, driven by routine,

producing a stilted rhythm but

it's in moving that your heart keeps 

its beating and your life keeps on living.

They say time heals. Maybe it does.

But when I look back I still see

a deep, deep, hole. It has a sign

called LOSS at the edge. And a face

of a little boy there. 

What face do you see?

But these feet shuffling forward 

point my eyes to another spot. It is 

a sign with GAIN written all over.

It also has the picture of 

a little boy there. 

In the folds of His providence

there are mercy treasures and 

unexpected joys that my tired eyes 

and slow heart never thought to see.

It continues beyond even what my 

eyes can see.

                                                                    So all these holes and 
                                                             all these mercies exist, together.

The gains do not erase the loss.

And the loss opens our hearts to

gains we never imagined.

Where Have We Been?

Calvin here. Let me tell you, our week started off with a bang. Christina came all the way from Cambodia and stayed at our house for a whole week. We soaked her up. And she soaked me up. 

Don't get the wrong idea. It's not been all glory. I've been out to therapy and had to spin some new wheels around the block. Here I am, totally enthused. 

 '
There I am, in fine form, strapped down and feeling ready to take off in Apollo 13.

Then there's the foot braces. Mom, it's time to take them off.

I've got my mom pretty well trained. She gets it right most of the time.

Opa's birthday trip was great. We even made it on Canada day. Here we are all ready to go.

We said our good-byes to Christina.

 And I settled in to enjoy my custom-made car mobile.

Lately my dad's been fixing up the house. I hang out with him in the workshop in the new wheels.

I keep him company and giggle every time he lets me feel the drill moving.

 It's been a good week.

Back on Track?

An hour of bliss like this makes me forget the hard weeks gone by. Thanks to my dear family (mom and sisters!) for checking in several times a day and to our church family who brings streams of meals, love, support, and relief and understanding. You are a lifeline for us, thank you.

Sometimes we get a little peek at the soul of this boy who lives inside this dear little body. It is so delightful and takes our breath away. These pictures are a loud reminder to me that this is my son, he has a personality, he has a soul, he has a desire for life just like you and me.

Too easily I give him up. I live the day waiting for his death instead of looking for his life. But there is life in there. Trapped behind eyes that don't see and arms that can't move and legs that won't stand.  He is there. And I long to know him more. I want to jump over this abyss of brain damage that separates him from me. It comforts me to know that no abyss is too great for God.

Calvin is working on bearing weight in his new braces.

Decompress

We are ALL home safe and sound. For now. And it feels wonderful. Thankfully we have more time to make some decisions as Calvin is out of immediate danger.

On Friday we went for a sleep study. Not long into the study he had severe hypoxia (extremely low oxygen levels) and was cyanotic (blue skin, gray face). He was trembling violently and not far from death. He was coded and recovered.

This was nothing new for us to see. It's happened many times before but we had no idea what it was. The first time it happened I knew the death look and we raced in our van to the hospital. For whatever reason (the Lord's hand I'm sure) he revived before we reached ER. We have heard over and over from each specialist that it's amazing Calvin has survived thus far since his condition demands 24 hours vigilance. One ER doctor asked how in the world we've done this for a year and a half and not burned out. It's now even more clear that the Lord has been with us even though we have hit bottom many times. I think Darryl and I could both qualify as ICU nurses now :).

The reason he is prone to become severely hypoxic is because some part of his airway is collapsing. We have further tests this week to determine the details and pray about how to proceed.

Our two super dogs. Faster than the speed of bark.

Sometimes the Lord seems to take the burden of sadness off of us and instead fills us with wonder and joy at the blessing of our children. Normally we would be a disaster facing such impossible decisions but strangely we have had such a closeness from the Lord and peace in His providence. We look at Calvin and feel his pain and loss. But at the same time the blessing and joy of his life overwhelm us and we can "taste and see that the Lord is good." I don't think we've ever tasted such a peculiar joy in our lives before.

Two special little girls on Easter morning.

In His Hands

It's been a difficult weekend for us. I keep singing All Is Well With My Soul over and over, reminding myself that yes, God is in control. Our heartaches are no surprise to Him. He will equip us in decision making, He is with us in our need and sorrow.  


These things are always too heavy for me and the only way for me to function is to turn around and put it back in God's hands. Give us wisdom. Give us courage, Lord Jesus. I've been playing this in our hospital room today, singing nose to nose with Calvin. He opens his mouth and sings "aaaaaahhh" with a smile.  He looks at me so trustingly, so happy and seems to say, yes momma, all is well. Let's sing it again, little one. 


He lowers us to raise us
So we can sing His praises
Whatever is His way all is well
He makes us rich and poor
That we might trust Him more
Whatever is His way all is well

All my changes come from Him He who never changes
I'm held firm in the grasp of the Rock of all the ages

All is well with my soul
He is God in control
I know not all His plans
But I know I'm in His hands

He clothes us now then strips us
Yet with His Word equips us
Whatever is His way all is well
And though our seasons change
We still exalt His name
Whatever is His way all is well

Calvin Is Happy

Calvin is nearly 18 months! His life is full of ups and downs, sometimes he's feeling good and other times very fragile. He's on new meds for all sorts of seizure related things and it's cleared up some of his cognitive awareness. His lungs haven't been doing so well lately and we have upcoming tests to check his airway which may be obstructed due to poor muscle tone. His vision seems to be picking up (maybe?); I feel like he may see me approaching at times (or maybe it's just his super sonic hearing!). He regularly turns towards windows and bright lights.

Tonight his breathing was good and he was fully "with us". Delight!

P.S. Don't be alarmed with how rough it seems we are with him. He loves deep touch and having us skin to skin. I guess if you can't see then touch and hearing are everything.

Strong Spark

While Darryl was in Cambodia Calvin decided to pull out all the stops. He slept through the night; woke up most mornings without intense screaming sessions; made progress in therapy; smiled and giggled often; and learned to partially sit. The last one completely floored me. 

We discovered it by accident. I was doing some head control exercises in his bumbo while chatting to my sisters, Kristin and Amy. The kids were having a hay-day with the rice bin (evidence in the background).

He was holding his head up remarkably well.

After the bumbo I put him into a sitting position in front of me. Usually he's like a wet noodle that droops over to the ground with no muscle control whatsoever. This time he drooped but didn't tip over. Hmmm...good sign, right?

I put my hands on his hips to steady him

Then he put it into high gear and actually used his OWN muscles to pull himself up straight!

The result? One shocked elated momma. And the first few seconds of Calvin actually sort-of sitting. Way to go, Calvin!!!

It was a very exciting two weeks. Each night I'd give the reports to Darryl over skype. Sadly though, the day Darryl came back Calvin started to plummet again. We suspected he was having more seizures but quite honestly, it's often very hard to distinguish between his seizure activity or his normal behavior which can be very atypical. His therapy regressed and he began to have strange changes with breathing, sleeping, retching, etc. This morning our suspicions were confirmed when he began seizing strongly. We are working on med changes and hope the seizures will be more controlled. 

For the first time in those two weeks we had a glimpse of what Calvin can do when the seizures are not interfering with his brain activity. We were able to really see him alert and relational too. I want that little boy back.

Diagnosis

I wasn't dreaming things, we were on the right path. He has an incomplete form of lissencephaly called pachygyria.

This definition is taken from the government's rare disease website:

Pachygyria is a rare developmental disorder which results from abnormal migration of neurons in the developing brain and nervous system. In pachygyria, the gyri are relatively few and are unusually broad and flat. The condition does not affect the entire brain, and is also known as ‘incomplete lissencephaly'.Symptoms are variable, but may include seizures, developmental delay, growth failure, small head size, feeding issues and poor muscle control. Most cases are isolated, although autosomal dominant and recessive forms have been described. Treatment is symptomatic and supportive.

It's not a good diagnosis. With a feeding tube there is no threat to his life. His life expectancy is normal as long as seizures are managed. His muscle spasticity will increase and there is usually not much development. Our neurologist did say his function is better than one would expect from looking at the picture (MRI).

We are scheduled for a 24 hour EEG. One symptom of these disorders is infantile spasms which is severe seizures. She showed us a video of it and we were surprised, it was what we see Calvin do all the time. The EEG will give an answer to whether or not he really is having them.

In my research I had found that the world expert on lissencephaly and pachygyria is Dr. Dobyns who works at the University of Chicago. I asked Dr. Chadehumbe (our neurologist here in GR) if she'd heard of him. She knew him and agreed that it would be good to refer Calvin to see him. Since it's so rare, it's hard for someone to give us more information about where Calvin falls on the level of severity of the disorder. Dr. Dobyns sees only kids like Calvin so obviouisly he'd have a feel for where Calvin is at. We are hoping that he will accept the referral. 

The future is overwhelming. Please pray for us.

Calvin Update

I want to give a quick update on Calvin as I know so many of you are faithful prayer warriors.

Since the Nissen and g-tube surgery Calvin developed some complications. The surgery wrap loosened and he began to continuously gag and vomit. His hydration levels were becoming a big concern. He is now on the feeding tube only (no solids by mouth) on a slow drip and his vomiting has nearly ceased. This is due in large part to a new anti-convulsive medication he's on.

We are so thankful that he can now tolerate his feeds. Instead of him (and us) waking up at all hours of the night from his retching, he is now sleeping very well. When he cries we just reposition him (he can't turn or roll at all) and he settles back into sleep. The morning sure looks a lot brighter when you've had more than three hours of sleep!

Overall he seems to be doing well. He had a bout of pneumonia last week that we were able to catch in the beginning stages (thanks to the wonderful care of Brookville Pediatrics and Spectrum Health) and he is doing well with treatments for that. We can't put him down a lot but his comfort level does seem much better since the vomiting has nearly stopped. Thanks so much for praying for our little man.

In other (big) news, it seems we may actually have a diagnosis for Calvin, something more specific than cerebral palsy, brain damage, muscle disorder, etc. It is something called lissencephaly. I'm more sure of it that I'm sure my name is Kara. My dear sister had to listen to me go on and on this week as I discovered more kids like Calvin! (Thank you, Kristin!) It is a very rare brain disease but the profile fits Calvin to a tee. We have an appointment with neurology next week Tuesday and I hope that we can receive confirmation.

I have to share this sweet video of Calvin. This may be the happiest I have ever seen him. I sound absolutely ridiculous on the video, but hey, I'm a mom. I hope it makes you smile as much as it makes me smile. Like Sophie said, "Oooh, mom, I love him so much I can't even breathe." :)

On the Upswing

Calvin has improved remarkably and we are hoping we can bring him home tomorrow. He was doing wonderful today, what a day and night difference from two days ago.  We are so thankful!

I bet you just want to reach out and touch that hair ;) Every nurse on the floor has.

Open Hands

Tomorrow is Calvin's birthday. Actually, while we were in the ER tonight (I'm making friends with the nurses there) it was his real birthday (Thailand time). So much has transpired in a year's time. I've been reading over some blog posts written around the time of Calvin's birth and shortly after. I remember feeling like I had Calvin wrapped tightly in my hands and couldn't let him go. Grace and time changes many things.

This year has been a very painful process of God taking our hands and peeling back the fingers, one by one. No, you can't have a gaurantee on his life. No, you don't know what the future holds. No, you cannot stay in Cambodia. Yes, he will have to go through suffering. Trust me. Trust me.

There were times of complete surrender to the Lord and resting in His providence, and there have been many times I've been angry. Really angry.

I wanted to meet God in court. I wanted to shout, "I wouldn't do this to people if I were God." I wanted to scream in anger at the unjustness and unfairness of my son having to suffer. I felt I had the moral high ground and God needed to answer to me even though I knew it was wrong. "Why don't you intervene, show your power, your healing?" I'd argue, reason, stamp my feet in utter frustration. But there was no answer. At least to those questions.

But He did say over and over through His word, trust me.

But I did trust you, Lord, and look where we are! Where are your blessings? Where is your fatherly care? I am completely alone, You have forgotten me. Trust me.

Somewhere in the course of the year our weary souls began to forsake all of the anger at God. No longer was He the one holding the keys to what we desired, but He became our comforter.

He doesn't answer to us. He doesn't tell me why. But His sorrow over this broken world, His compassion for needy sinners, His love for His people is written all over the pages of His word.

He reassures us of His care for our sorrow. Trust in him at all times; ye people, pour out your heart before him: God is a refuge for us. Selah. Psalms 62:8.

He tells us that He cared enough for the sorrows of His people to be made like us. I cannot understand that love and condesension. Wherefore in all things it behoved him to be made like unto his brethren, that he might be a merciful and faithful high priest in things pertaining to God, to make reconciliation for the sins of the people. Hebrews 2:17

Sometimes I'm tempted to think He is far removed from our situation and just moves us as pawns on this board of life. Then I'm reminded of His sorrow over brokeness as He looked over Jerusalem. Jesus wept. That is not a God who is removed.

I cannot explain suffering. I cannot explain how a sovereign good God allows and directs horrible tragedies and suffering. Yet I also cannot explain how a perfect and righteous God sent His Son to this world of tragedy and sin in order to redeem sinners. People who did not even want Him. I can't explain that love.

It is this love, this persevering grace of God that keeps us. It tenderly pries our fingers off of Calvin, leaving him open in our palms, trusting him to our gracious and heavenly Father who does all things well.

Prayers

Some of you may have already heard that we are having a real struggle this past week. Calvin has gone downhill quite quickly and we are not certain if he is facing his last days or struggling with an illness that he may recover from.

God has given rich measures of grace and comfort to Darryl and myself during this time. We feel covered by the hands of the Lord and continue to look to Him for our son's needs. Would you please pray for our family?

Please pray for comfort for Calvin and for relief from the trembling episodes. Please pray for the comfort of the Lord to fill each family member's heart in this difficult time. Calvin has been very comfortable all day which is a huge blessing. Darryl gave him a bath this morning and he looks so precious and beautiful. Every once in a while a teensy bit of a smile will tug on his lips when Noah or Evie comes around. We love him so much.

a day in the life (1)

We sat in the doctor's office (Calvin and I) yawning together, trying to recover from a short night. I was glad to be meeting with Dr. D again and hoping to get some suggestions/solutions for some of Calvin's challenges.

The door cracked open and ushered in Dr. D. "Where do you want to start?", she questioned. I fired questions and she responded ably with her gray spiky hair nodding and her kind green-shadowed eyes offering concern.. The conversation was peppered with words like slowed growth, reflux, medication x, medication y, muscle disorder, upper g.i. test, sensory disorder, sleep aid, side effects. And after all was said and done, quality of life.

She peered over her square black glasses and settled her eyes on me, "I can't change his state. My goal is to make him comfortable, to give you and him some quality of life." The name tag wobbling on her white coat declared "Dr. D., Neuro Dvlpmnt Spclst", giving added confirmation to her words.

Make him comfortable. I remembered those words from my days as a CNA with the elderly. It was code for Not Much Time Left. Not that there is an immediate threat to Calvin, but it's the absence of talk like progress, recovery, or hoping for more that makes my heart sink. It's settling with What Is and dealing with it.

The security lady smiled at me compassionately on the way out. I wondered how many moms she sees in a day like me--walking out the glass doors with a little one pressed up against tear-filled cheeks.