10
Nov

No crying he makes

We’ve seen some fun and interesting places as of late, food tours (like Herr’s Potato Chips, Sturgis Pretzels and Wilbur’s Chocolates), theme tours (like the hershey World of Chocolate – twice!) and educational places (like DC and Gettysburg).  We’ve celebrated birthdays and had a visit from one set of grandparents.  We’ve schooled (the middle four) and tested (James).  Work has happened and advocacy.  We’ve even made it to the many appointments we have each week.  Today tops everything we’ve had happen so far.

Isaiah managed to complete a full 9 hour day at the hospital with only one bout of tears.

Sound harsh?  Actually it’s really exciting!

He made it through his OT appointment where his arm splints were refitted.  It’s really warm on his skin as the OT presses the hot plastic against his little arms in order to hold it.  It also stretches his arms into new and aggressive stretches that cause him some discomfort.  No crying today though!

He made it through his upper extremities team visit.  His arms were pried on and his parents kept the team talking for far.too.long.  No crying today though!

We waited for many, many hours in a very crowded waiting room with a bajillion other families in order to see his lower extremities doctor.  No food or drink allowed there and we made him eat super quickly in the cafeteria before dashing back to wait some more.  No crying today though!

His name was called when we were the third last in line in order to have his leg casts removed.  He usually bursts into tears at the mention of his name.  No crying today though!

His Physician Assistant spoke gently to him and removed his casts.  Isaiah called out over the saw noise, “Good job, Mr. B____!”  Wow!  He even sat up to watch it happen and smiled at me at one point.  Let’s just say that the grownups in the room were stunned.  No crying today though!

He greeted his care coordinator by name and smiled for her.  Everyone was enfolded in warm grins and happy moments of glee.  No crying today though!

Finally, finally, he dozed off on my shoulder. They ushered us into the cast room.  And he woke up.  No crying yet.

UNTIL…..

The lower extremities doctor walks in ahhhhhhnd….

There were sounds of wailing and gnashing of teeth (like, literally, gnashing).

Ah well.  It was about time.  ;)

 

19
Oct

A New Week

D&D.  Stephen & James broke out a new campaign tonight and had Faith join them.  Something about needing more characters to fight monsters alongside them or something.  It was so nice tonight to feel like we could blog and play.  Yay for sleeping toddlers!

D&D. Stephen & James broke out a new campaign tonight and had Faith join them. Something about needing more characters to fight monsters alongside them or something. It was so nice tonight to feel like we could blog and play. Yay for sleeping toddlers!

I bought some new entertainment this week.  Grace, Garnet and Samuel spent quite a bit of time playing together.  The time away is (as always!) bonding them closer.

I bought some new entertainment this week. Grace, Garnet and Samuel spent quite a bit of time playing together. The time away is (as always!) bonding them closer.

Oh Chick-Fil-A - I so do love your yummy grilled wraps and BBQ sauce.

Oh Chick-Fil-A – I so do love your yummy grilled wraps and BBQ sauce.

Shoo Fly Pie.  Samuel and Isaiah spent one evening practicing saying that.  :)  Yummy, but super densely sweet!

Shoo Fly Pie. Samuel and Isaiah spent one evening practicing saying that. :) Yummy, but super densely sweet!

I spent many hours holding Isaiah upright to keep him comfortable.  He was so swollen form the waist down after his surgery.  Can you see how his feet are totally opposite to how they were when we left home a month ago?  Amazing!  Plus, who doesn't love the striped casts?

I spent many hours holding Isaiah upright to keep him comfortable. He was so swollen form the waist down after his surgery. Can you see how his feet are totally opposite to how they were when we left home a month ago? Amazing! Plus, who doesn’t love the striped casts?

It rained so hard that the roof in our century plus house leaked - fortunately, only into the master shower.

It rained so hard that the roof in our century plus house leaked – fortunately, only into the master shower.

Last week.  Oh, last week.

We all just felt like we were barely holding on.  But we made it.  We made it.

Isaiah did his semi-retreat tonight as we readied him for bed and prepared for tomorrow at the hospital.  But he had just had a really, really normal sort of day, and it wasn’t more than a minute or so and he settled in for sleep  This weekend just got better and better.  We slept, ate, played, caught up on some schoolwork.  Stephen’s back is even unknotting little by little.

So thankful to head into this week feeling like we have a bit of margin.  Hoping that when he realizes that he won’t be having surgery, just cast changes and brace fittings, he’ll settle in to his routine there.  His routine involves a lot of unhappiness, but it is familiar by now and hopefully he’ll be able to process that.

The other kids are really doing so much better.  Colds have passed. Play has resumed and they are talking about things they want to do. All good things.

Surgery weeks are always tough but this one seemed to pile it on, but we weren’t alone.  I have been so thankful for friends and family who came alongside us these past days.  You all mean so much to us.  When we felt at our most exhausted and stretched, you kept us focused on the fact that we weren’t walking through this alone.

Please keep on praying for Isaiah’s heart.  While his body seems like the most vulnerable part of him, his sensitive spirit is struggling to hold on.

My prayer this week has been thankfulness for God’s care for my little boy.  Just like Mephibosheth, God hasn’t forgotten my Isaiah. Not for one day of his life. He took a little boy from a rural area in China and brought him through a series of seemingly random events to a family in Canada, and is being treated by two of the foremost teams of specialists for his arthrogryposis in the whole world.  How can I doubt His care for me too?  His goodness in our exhaustion? His tenderness in my need to control?  And for those scholars out there that would like to point out the fact that this passage illustrates a common middle eastern tradition of restitution, that is true. But to me, he was a man whom everyone had forgotten.  Maybe even, Mephibosheth, thought he was forgotten.  But he didn’t escape God’s notice.  Nope. he was brought to the forefront of the king’s household and cared for with honour for the rest of his life.  I take so much joy in these words.  God knows our needs.  We aren’t journeying alone through life.  As long as we draw breath, His eye is on us and our story is not over.  Good stuff to contemplate, yes?

2 Samuel (2 Samuel 9:1-13):

9 David asked, “Is there anyone still left of the house of Saul to whom I can show kindness for Jonathan’s sake?”

2 Now there was a servant of Saul’s household named Ziba. They summoned him to appear before David, and the king said to him, “Are you Ziba?”

“At your service,” he replied.

3 The king asked, “Is there no one still alive from the house of Saul to whom I can show God’s kindness?”

Ziba answered the king, “There is still a son of Jonathan; he is lame in both feet.”

4 “Where is he?” the king asked.

Ziba answered, “He is at the house of Makir son of Ammiel in Lo Debar.”

5 So King David had him brought from Lo Debar, from the house of Makir son of Ammiel.

6 When Mephibosheth son of Jonathan, the son of Saul, came to David, he bowed down to pay him honor.

David said, “Mephibosheth!”

“At your service,” he replied.

7 “Don’t be afraid,” David said to him, “for I will surely show you kindness for the sake of your father Jonathan. I will restore to you all the land that belonged to your grandfather Saul, and you will always eat at my table.”

8 Mephibosheth bowed down and said, “What is your servant, that you should notice a dead dog like me?”

9 Then the king summoned Ziba, Saul’s steward, and said to him, “I have given your master’s grandson everything that belonged to Saul and his family. 10 You and your sons and your servants are to farm the land for him and bring in the crops, so that your master’s grandson may be provided for. And Mephibosheth, grandson of your master, will always eat at my table.” (Now Ziba had fifteen sons and twenty servants.)

11 Then Ziba said to the king, “Your servant will do whatever my lord the king commands his servant to do.” So Mephibosheth ate at David’s[a] table like one of the king’s sons.

12 Mephibosheth had a young son named Mika, and all the members of Ziba’s household were servants of Mephibosheth. 13 And Mephibosheth lived in Jerusalem, because he always ate at the king’s table; he was lame in both feet.

14
Oct

Surgery tomorrow and a reality check

We head out around 4:30 tomorrow morning for Isaiah’s tenotomies (achilles heel releases and possibly hip tendon releases – to be decided in the OR). We are blessed that our doctor decided to do it at 7:30pm last night and has him booked in first thing Wednesday morning.This is what we came for, so onward we go.

Things to pray for?

Peace. That we would receive the peace that God has waiting for us. We are not doing so great at receiving. It’s a moment by moment act of the will, and well, that doesn’t sound too peaceful does it?

Isaiah. He has a lot of bruising on his feet. The casting is getting tougher and tougher.  He is fighting even me now. I’m his soft spot and he’s stopped receiving comfort on my terms.  I have to hold the line with him while pouring on the compassion.  (No one slept ALL night last night.)  His heel bones have always been really, really high, making his heel pads super soft and spongy.  This will allow his heel bone to drop and gain flexion on his foot pad.  His tenotomies were not successful in China and we knew we had to go with this type of procedure versus the one offered to us in Portland in order to try to prevent irreparable damage, but it is still risky because of the prior failures.  We are believing God’s care over Isaiah.  He is so precious to Him and we are doing the best we can as parents to choose wisely, but at the end of it all, it is up to God as to His plan for Isaiah’s walking.  Of course we ask and believe that he may walk here on earth, but if not in the now it does not lessen his importance to God.  We can’t explain all of this to him and it is tough to see him feeling betrayed when he begs me to make it stop.  I choose to accept God’s care for him in this.  It’s too big for me to try and process on my own.

Stephen.  He has back trouble from a multitude of things in his teens, but the stress and long hours driving has blown it to pieces.  He spent last night on the floor.  He’s just spent the past couple hours at urgent care and now he’ll be on meds so strong that he can not drive for the next week.  He’s frustrated, in agony and tired and there have been headaches at work.  On the plus side, I found us a network chiropractor nearby.  We’ll give that a try tomorrow.

The kids as a herd.  They are managing to zone out on copious amounts of screen time.  We catch schoolwork as we can and try to offer options for something other than a screen.  Reality is though, they are tired of it all but the least affected because, hey!, what’s not to like about screens? For now.  Perhaps I need prayer that this enjoyment will last until we get a breather.  This is only a season has become my chant.

James.  Trying to cover for us as we run hither and yon.  Also trying to keep up with his college courses.  It’s a lot.  He’s tired.

Faith.  She tends towards internalizing her stress at the best of times.  She has had a bump in her back reappear.  It is the same bump that she had as an infant and the one my brother-in-law (a network chiropractor) fixed when she was tiny.  She’s hurting.  hopeful that the chiropractor can offer some help tomorrow.

Grace, Garnet and Samuel.  They are doing really well.  Okay, they are exhausted from not sleeping last night and they are getting over their colds, but they are doing well at their schoolwork and enjoying the downtime.  We have to keep drawing them out when we get home, but overall they have done alright considering the upheaval.

Colds.  Each of us has had one form or the other.  I’ve been chugging greens and Achillea, but the rest of the family turns their nose up at them.  I was smugly healthy, but started the ay with quite a scratchy throat.  So far so good.  I’ll keep on with the Achillea.

And me.  I’m nervous about driving into the city for the surgery tomorrow.  I have a feeling the ride home will be tough.  I will probably ask James to come with and try to help Isaiah on the way back to the house.  They will do his casting post surgery while he is under, but that doesn’t mean he’ll be happy on his way home.  The traffic is so much more aggressive here.  I am thankful we drive a tank, but the speeds are always higher than posted (120-140 miles per hour).  And people don’t often signal.  And they tailgate.  A lot.  Saying this stuff, giving it over to God to deal with and choosing to accept His peace instead of the anxiety.

Just keeping it very, very real.

 

9
Oct

Catching up

Or maybe it should be, “Catching my Breath”.

Three cast changes so far.  Yellow and Green.  Yellow and Orange.  Pink and Red. Isaiah has been very specific.  He’s extremely terrified of the saw and he not only screams in terror but shakes and trembles the entire time they are removing his three casts.  He continues to tremble for many minutes afterwards.  During the actual casting process he cries and begs me to stop them.  He uses a very clear and direct voice to tell me.  Not hysterical, just direct.  Steve hold his trunk down and I hold his limb.  There is the doctor casting and assuring the correct angles are achieved, while the physician’s assistant or sometime several prep and cast, as well.  Usually the care coordinator is there to oversee the whole thing and keep us talking, trying to distract Isaiah, with minimal success.  It’s essentially one big, exhausting gong show.

Why do we do it?  Results.  So much progress has been made in the past 3 changes.  The doctors are encouraging and keep us focused.  We are being affirmed to continue massaging him and stretching his limbs out as much as we can in both the passive and active stretches. And to top it all off both doctors have been unwavering in their hope for him.  His upper extremities doctor just exclaims over the ability he has to activate and trigger is left forearm muscles (this is really, really big!).  His lower extremities doctor talks like he fully hopes for Isaiah to stand and walk.  We try and temper the comments in our heads with (yeah, with a walker. or right, but that’s only one set of muscles.), but the hope is contagious, especially in the face of such experience and surety.  We are totally in this for results.  And we can measure them with our eyes already.

We also began sessions with the attachment therapist. Without betraying confidences, I can describe it in two words: focused and exhausting.  (Catch that word again? Exhausting?  Yeah.  We are so tired.)

Stephen has been driving us 1.5-2, sometimes 3, hours each way for every single day we have had an appointment or time out.  With the outings we did last weekend it was 5 days last week and then the other two days involved groceries and errands.  His arms are sore.  I’m trying to fit in hours of homeschooling around the appointments and while I am totally thrilled with the progress the kids are making, it makes for little to no down time.  The days end involves putting the kids to bed while carving a bit of one on one time with each child.  Then comes homeschool prep and Stephen’s work hours.  We go to bed late and get up a few time in the night for Isaiah’s medication, before doing it all again the next morning.

Sound whiny? It’s not meant to be.  I just needed to write this all down so I can remember what it was like in this season.

Beauty around us? Endless pumpkin patches.  Yellow corn fields.  High stepping Amish horses passing our front door.  Chick-Fil-A (who knew they were right about it – so yummy!).  Scented candles.  Figuring out details of our time here (the best grocer, how to get a US mailbox).  And the kids at mealtime. They are so funny.  I keep taking mental pictures at that meal.  I don’t want to forget them at these ages.

So, if I’ve promised you something, dropped the ball and not responded in a timely fashion, out and out forgotten something, please offer me some grace.  I’m doing the best I can.  We are surviving and at times still thriving. We are in it to win it.  We just may need to catch a nap sometime soon.

From Paradise…

2
Oct

Happy 10th Birthday, Garnet!

We were so happy to celebrate Garnet’s 10th birthday with him today! (Truly we were, just follow along with me.)

We had cake (that Garnet made himself with Dad’s help – chocolate dipped cake balls), presents (that included an r/c helicopter that was promptly flown across the ravine containing the railroad and lost in the bush), and fun (a trip to the gaming store – that wasn’t as much fun as it could have been as the focus drifted to his brother’s taste in games, and a game of Farkle – that ran far too long with a grumpy toddler).

Sounds kind of negative, doesn’t it?

It would have been, but this was Garnet’s birthday. He’s a really roll with it kind of kid. It’s not that he doesn’t notice that stuff that makes the rest of us grumpy, it’s just that he generally chooses to be upbeat about it.

I really like that about him. I think it’s one of his greatest character traits.

 

30
Sep

1st Day of Homeschool 2014-2015

I was pretty pleased with how today went.  That’s not the case every year, but I have been becoming more and more convinced of what our kids need to know versus what I thought they should know.  This is so important when speaking of the education of asynchronous learners. Progressively it has been getting easier and easier each year to hold to our educational path and stress less over checklists and envy over others’ experiences.  I asked the kids at supper to rate how they felt today went and how they thought the year ahead would be.  It was overwhelmingly positive.  I think that speaks for itself.

On the other hand, I forgot to snap some first day photos.  Can’t win ‘em all.  There’ll be time for first week photos yet, I’m sure.  :)

29
Sep

Great news day

imageimageimage image imageFirst visit at hospital for Isaiah. Tremendously encouraging prognosis.  An obviously well verses team. Casting on his left arm and bothimage image imagelegs already today. Isaiah spoke directly to us and told us his troubles but no regression or aggression and no overt symptoms of trauma.  Hugely thankful as we were concerned specifically about that. He’s very uncomfortable tonight. On T3 and Advil but he is dozing now. It was tough on him but we have renewed hope. The overarching vision is for him to walk. His arms are being readied for greater use and self care. So different from what we were told from his first team. His body will determine how far he can go and no one will truly know that until they try. The plan involves a number of trips over the coming years and further casting and surgeries. We will be here for some time yet but it will be worth it to know he has a chance to improve his physical life.

The day began with an early sunrise drive and tomorrow is the first day of school for us (structured work), not to mention Isaiah has been waking every so often, so I need to sleep.

Such an encouraging, exhausting day! (By the way, Isaiah chose his own cast colours. They asked him which colours without showing options and these are the two he wanted. He knows his own mind.) (Oh, and the top photo is of Garnet on the porch practicing his TKD kicks while Dad holds the target.)

 

 

28
Sep

Testing… Testing…

Pardon the weird formatting. I will fix it once the computer is set up. )

We drove into Philly today on a test run. We hit heavy traffic and so we’ll have to make sure to allow extra time for commutes to appointments. We also picked up a bunchimage image imageof supplies for the next bit, bought a couple things for Garnet’s birthday (“Did you know my birthday is in THREE days, Mom?”) and finished up the paperwork for the appointments we have this week. We also had a few moments that varied from trying to squeeze our behemoth into a very low parking garage.  We juuuuuust fit. :)  It’s also been interesting snooping in stores. It takes us 3 times as long as usual to shop because the packaging is different and while everything is labelled in English, the selection is super abundant for some items and non-existent for others. And the highways?  They curl in and out of each other like a ball of string. We have our van gps map on, Stephen’s phone on Google maps, a thick map book and then use my phone to ask Siri for help on top of it all. A few moments of frustration and a few wry laughs and we get the job done!

 

28
Sep

Some days

Some days are so confusing. True?

We drove our final miles to the house we rented. We pulled up and saw a sweet 100 plus year old house.  The doors were unlocked and Steve and I walked around checking things out. So cute. So many original details. Yes a small truck route raced by out front but look at the yard. Oh wait… Look at the yard!  I had no idea there would be a railroad line directly out back. Oh and a well hole. And wait, Samuel is running as fast as he can from thing to thing. And then we get inside again and the kids go upstairs to the fire trap of an attic with debris everywhere and the smoke alarms pulled apart. And again, Sam raced past me to run outside. And I cried.

I went out to the van and cried. I told Steve that I’d obviously made a mistake and how were we going to keep Sam from hurting himself. And I was mad. At myself, to be honest. Little Miss Responsible hadn’t thought this thing through.

See, we came to PA for Isaiah’s surgeries but in the process of readying ourselves to come we felt up against a wall in our parenting where Sam has been concerned. So I dug around and an e-friend found us an attachment centre nearby for us to get coaching. And for Sam to continue his work towards healing. The problem is that I wasn’t thinking of what he would need when we’d get here.

8 beds?  Check.

Driving distance to hospital?  Check.

Safe environment for Sam?  Um no.

In the end, I’m standing in the driveway feeling sorry for myself and one of the homeowners drove up. I told her my concerns (I’d obviously been crying, poor woman) she rolled with it, assured us she’d work with us and within an hour her husband came and installed some locks and smoke detectors.

If that was the end of the story that would be no surprise to anyone close to me. I’m way too controlling and take way too much upon myself in regards to protecting our kids.  But God wasn’t finished with me yet. Gulp.

I started some laundry after we ate supper, while Stephen tucked in the two littlest boys into bed. He came downstairs and I ran upstairs to kiss them goodnight. And to God’s glory between reading the Mt. Rushmore board book to Isaiah and fielding requests for more water, a little conversation started up with Sam that made my world screech to a stop.

A few months back we celebrated that Sam had asked questions about sin and God and he’d asked us to talk to God with him about it all. It was a beginning.  A great first step in softening his heart towards God. Well last night Sam told me he had never really asked God to come close and he had some really good questions and comments about hearing God and knowing God had really taken his sins away. He was vulnerable with me. He really opened his heart to ask big questions and he wanted real answers. We ended our chat with prayer and hugs (I had called Stephen up at one point to join us.).  I saw him visibly relax.

And then I went downstairs and really thought about this confusing, mixed up day. My control issues. My fears. His care for my kids. For me.

I’ve been doing this Christ follower thing for a really long time. I think my first awareness of my need for Him was when I was younger than Samuel. He’s allowed me to see miracles. I can’t say that there have been times in my life where I have felt honestly alone. Lonely, angry, selfish, frustrated, heartbreak. But despair and separation from Him?  No. That really begs the question, is he leaving my kids alone?  Is there ever a time when He turns His face, His love, from them?

I think that there are so many people that I have revered as mentors in my life (real life and e-life) and somehow I find myself striving to be That Mom. The one who’s kids love her, respect her, seek her wisdom. And yesterday reminded me yet again that God in His wisdom grabbed hold of my heart at the age of five so that there would never ever be a time where I could in all truthfulness claim superiority of wisdom, knowledge and mercy. I am nothing without Him. He is the greater one in this relationship and that extends to my family.

I haven’t blogged about our life (although it’s on FB if you read there) these past few months, but in honour of keeping things real, life has been totally upside down.

Our business has been shaken up with new leadership and some changes with our clients. We made the decision to build a house and put ours on the market only to back out at the last minute. And God made it crystal clear to Stephen and I that we needed to put our focus on more intentional service. In the midst of preparing for this trip to PA God has been bringing us low so He can clean house in our hearts. I’d say yesterday was just another example of this and of His ultimate goodness. It seems a glaring issue will come up and He mercifully show us the answer in such a way that the fear, worry, anxiety is bookended with His love, strength and wisdom. Is it neat and tidy and roses and rainbows?  Not at all. But being able to see Him in it has made these regular spotlights on my weakness easier for me to let Him be God and to be more honest with Him.

Do I wish I could have a “do over”?  You bet. Do I need to get over it and get on with my day?  Yup. Is tomorrow going to have its own issues?  Uh huh.

Onward…

 

 

 

 

 

26
Sep

Coal Miner’s Daughter

image image image image

(Don’t mind the upside down photos, I’ll fix them later.)

Peoria, Illinois to Steubenville, Ohio

So technically we have been driving through a lot of urban sprawl but for some reason all day long I’ve had “Coal Miner’s Daughter” in my head. (Wasn’t Loretta Lynn from Kentucky??)  Anyway, in the irony that is my life, what did we pass on our way here tonight?  A HUGE coal refinery. It was awe inspiring to drive past it’s huge lights and towering smelter (?).  Actuallseasy a little frightening because on first appearance it seemed to appear out of no where.  Kind of freaky cool.

Lots of hours in the van again. We met some really interesting people at each of our pit stops. Real characters.

I like chatting with people in settings totally foreign to me (odd but true). This trip has proven that most people just want to share a bit about themselves and hear a bit in return.  We’re all pretty curious and when you get right down to it most people are more than willing to share a smile or share a moment. I think it’s one of my favourite things about travelling.  Now when I think of South Dakota or Illinois I have that cast of characters to hang memories on.

The kids played a number of rounds of Bingo. Faith avoids all games like the plague and Isaiah is content to hold a card. The other four duke it out pretty fiercely. So far the wins are:

James – 11

Garnet – 8

Grace – 5

Samuel – 3

Prizes are received at stops along the way. Mostly junk food which Faith does not generally care for and Isaiah begs for until some passing sibling shares a piece of their winnings. Truth. It passes the time nicely.

We are getting close to our temporary residence now. Stephen and I are becoming more snappish and feeling more ages and pains. The reality of the next week has hit. The treatment plan or the decision to not treat Isaiah will be worked out by Monday evening.

It’s always such a mixed bag when you are raising kids with complex physical, emotional or cognitive needs. First and foremost they are your child. You cheer them, correct them, lead them and basically do life in the same way as every other family you know. But, when you are faced with a new medical procedure, a new treatment or therapy, that’s when it hits you that something big is looming.  Be it for good or bad, it looms. And I takes it’s toll on each of us in the family herd.

No matter what the outcome of the hospital visit on Monday, we’ll all be okay. We’ve done hard before and each of us has found ways to not only survive but thrive.  I guess at the bottom of it all we just wish in these moments that it wasn’t our kid facing it too. But I’d say that probably that makes us fairly normal. Average even.

So, onward we go!

As an aside, we are staying at a hotel within the grounds of a Franciscan University. It is really quite nice but between the style of the hotel and the goosebumps the coal plant gave me, I couldn’t help but think of a character out of the classic Scooby Doo characters when we met one of the staff here down the long subterranean hallway. Okay, maybe not entirely subterranean, but definitely out of the way. Stephen just shakes his head at me. Remember what I said about a cast of characters though?  It looks like I have a new one for Ohio!  ;)