Less than a week to go!

All reports from the north land of Bay Cliff is that Donovan is doing very well.  We are making final preparations to get our boy home with all the pomp and circumstance as possible.  Bridget had a long talk with two of D's counselors, and we are very excited with the progress he is making and that he is having fun.

We received a postcard and a couple of letters from D telling us great news of adventures and fun.  Sleeping under the stars, frog hunts, fishing expeditions, jumping into the pool, by himself, for the first time! etc...

It will be a challenging week as I'm heading back to Wisconsin to help my parents on Tuesday and I will meet up with Bridget and Carl in Marquette on Friday or Saturday, as we collect Emma from a Youth Camp in Munising and Donovan from Bay Cliff. 

Another crazy week in a summer of them.  Only this one has a wonderful happy home coming! 

Can't wait to hear Donovan yell down the stairs,,,, MMMMOOOOOMMMMMMM........DDDDAAAAADDDDD!!

Donovan Letter #6 - "2"

The significance is mild.....  Two kids I'm trying to get up (Bridget is at the Farmers Market), 2 dogs running around my feet (we are taking care of Victor, our neighbors dog), Dos rounds of The Open are left to enjoy with my coffee this weekend (love getting up and having golf with my coffee), and

TWO WEEKS UNTIL WE PICK UP DONOVAN!!!

What do you suppose he is saying?

Oh and two weeks to figure out our schedule to get up there, get back and determine how we celebrate his home coming!  We still have the yellow smiley face balloons floating around our house from when he came home from MaryFreeBed (MFB), as is the big poster of him we used for a fund raiser for The Equest Center.  Can you believe he started riding horses at 18 months old and now he is 9 years old....

Lots to do.......... Emma is going to a camp in the UP for a week so the last week of July we will be down to Carl in the house, and he has football camp that week so he'll be gone half the days that week.  House to get in order, gardens going crazy, a another trip to the farm next week, start planning on stuff for the fall, soccer practices for Carl, Emma is joining her middle school "Crew" team (rowing)..... Getting Donovan ready to go back to school and catch up on reading, writing, math, etc....

We got a post card from Donovan last week telling us he is having fun and making progress.  His counselor wrote that they went fishing, frog hunting, and biking.... The picture above is from the Bay Cliff Facebook page.  When they raise their hands everyone is suppose to settle down.  Bridget figures D is scolding someone to be quiet... I concur based on his facial expression! 

Donovan is changing so much at this age.  I was showing my dad pictures of Donovan from when we visited them in December and when he came home from MFB.  The change is significant.  Most of it is due to his braces and the impact it had on his face, but he is also growing up, both physically and emotionally.  Guess you notice it more with your last born.

With Carl and Emma, you noticed but we also had Donovan to fall back on having a little guy, so the impact wasn't as great.  I'm curious, excited and a little nervous to see the 7 week change.  Not only the growing up part, but mainly the progress in his therapy.  This was a lot to put him and our family through (although you'd never know it by talking to Carl and Emma), and we have to manage our expectations......

D's doctor, Dr. Forness (wonderful doc and person), said it will take a full year to recover, so even though we say great progress, much improvement in his walk and gait before he left, we want to be sure we don't expect too much from camp.

That's the final "Too"......... Maybe more significant than I thought...

Donovan Letters #5....

Traveling. 

I haven't been home much since dropping you off and it just adds to the "weirdness" of this summer.  I've been away more than at home.  Mom received another card from you with a little more description of you activities for the week.  You talked of frog hunting (slimy frogs), swimming and going on the deep end, the 4th of July parade, playing with your friends, all under the context of having fun!

Can't wait to see you.  23 days, 5 hours, 51 minutes and 30 seconds, 29, 28, 27.....

This will always be known for me as the "Transition Summer".  Someday I'll tell you why it is that, but I have to process it all a little more before I can talk about it in a single blog post.  I'm just glad you are having fun, learning, working hard, and enjoying mom's care packages with your friends.

Nana and Papa ask how you are doing all the time.  I've been spending time with them this summer to help out with the farm and around the house.  This is the last summer Papa is going to make hay and grow oats.  Transitions....

Did I tell you I miss you.....

Dad.....

Donovan Letter #4....

It's Tuesday, July 2nd and I'm in my chair thinking of D as Carl and Emma play on the tramp, Buster is jumping around them barking and Bridget is walking around her gardens, seeing how they grow.  No cockle shells required...

We got another post card from Donovan with funny stuff, a phone call from Erin, a phone call from the Bay Cliff staff and several other interactions reassuring us D is doing well.  God continues to provide us with little signs of reassurance that He, and all our family who have joined him, are watching over Donovan with great care.

When I got off the ferry in Ludington last Friday night to start the last leg of my journey home, a rainbow formed over the highway as I entered the ramp to get on it.  Sunday, at church, Bridget was praying for Donovan after receiving communion, and a clown (dressed up in full rainbow color attire) walked down the aisle next to us to receive communion too! (The church was celebrating their summer festival)  Emma, Corinne and Aunt Julie Kaboolie saw lots of rainbows on the PALM ride during the week.

All the reassurance in the world doesn't change how odd I feel, or how much Bridget misses our D.  A friend of mine called today to ask we are doing.  I said we are fine, etc. etc. but it is the most unsettling summer I can recall.  I just feel weird.

A large part of it is Donovan being gone (almost three weeks now), my dad announcing this is the last year he will make hay and oats on the farm (we are leasing out the remainder next year), the maturing of Carl and Emma, as they have stepped it up since Donovan left, and the realization that none of our kids are little any more.

Of course it could be too that I watched two Adam Sandler movies with my kids and they are getting most of the humor now.  Happy Gilmor and Grownups.  Just doesn't seem right!

Oh well.....  Life transitions ....

Johnny's First Run .... On his own...

We have been friends with the Agar's since Bridget met Becki, Johnny's mom, as we learned about CP when Donovan was a baby.  Johnny is 19, has CP and his Dad started doing 5k, 10k, Marathons and finally triathalons, with Johnny by towing, pushing or pulling, depending on the event.

This last Friday, their church, St. Patrick's, had their summer festival which included a 5k race.  For the first time Johnny completed a race on his own by using his walker, for the last mile.

Here is a link to the story our local TV Station did.

Johnny's Incredible Run and Finish

Everyone should have Johnny's spirit and determination!

First Picture from BC!

Finally a picture of Donovan!  He looks happy and older, even though we are guessing this picture was taken the first or second day of camp!

Honor Cabin

Postcards from Donovan! #1

Well I arrived home from my travels to the farm, got the mail and low and behold a postcard from Donovan!  Made my night (Bridget's too as I took this photo and emailed it to her.  She spent the last night with Julie celebrating her birthday and the completion of PALM 2013.

We received a magazine from Bay Cliff telling the Story of the "Big House" and how the camp was formed and survived.  This is their 80th year in business.

The Big House is the original farm house that a farmer built on the cliffs overlooking Big Bay.  It was named as it was a big house and people referred to is that way and the nick name stuck.  The house has grown and been renovated several times but the original foundation, made from the sandstone from the cliffs nearby, survives as it reaches 100 years old.  The house is 18,000 square feet with big porches and the original field stone fire place!

Bay Cliff camp almost shut down in 1958 due to being $10,000 in debt.  Elba Morse (one of the founders) convinced the executive committee to stick it out one more year trusting "God would provide".  The next year the movie The Anatomy of a Murder, was filmed in Marquette and Big Bay.  A member of the executive committee, Willard Cohodas, arranged for the wold premier to be shown in Marquette and Ishpeming.  The were awarded a check for $10,000 and Bay Cliff was safe.  Today their annual budget is $1,080,000 which is still raised from individuals, foundations and businesses.  86% of the funds raised is used to serve the kids (i.e. 14% covers administration).

The 1934 budget was $4,781.17.  :)

Donovan Letters No 3………….. 6/20/2013….

I didn’t think of Donovan today, for a total of 6 times, over a course of 6 hours, for about 6 minutes intervals.  Otherwise he is always there….

It is Sunday night and I’m at Carl’s Godfather’s home in Green Bay, Wisconsin.  The frozen tundra was very hot today and we had a wonderful sail on the Bay.  John, (aka the godfather) is the man responsible for getting me into sailing and it was the perfect day for sailing his 16 foot catamaran.  He has two of them, so John and I were on one cat and his two sons (Paul and Thomas) where on the other with their friend. 

The sun was warm, the air was humid, the water warm, and the wind was perfect for flying a hull.  Luckily we didn’t hear the immortal words from John’s lips, that is an indicator we are about to capsize or pitch pole.  It was a day the doctor ordered and I needed. 

I thought of Emma on her first day of the PALM Ride and the fact they were going to bike 45 miles today in this heat.  Unlike Donovan, I could call her and text her and get instant knowledge and reassurance she is having fun and enjoying the ride.  The tone in her voice confirmed she is fine.  Hope her Aunt Julie is ok, as she had a rib pop out (from a previous injury) the day before a ride.  I’ve had a cracked rib.  Very painful…  Good luck Julie Kaboolie….!!

Here is the route they are taking for their ride!

PALM Lake Michigan to Lake Erie!

I thought of Bridget and how she was doing with just her, Carl and Buster hanging out at the house.  As I suspected, she spent the day working in her gardens as this was perfect weather (for B) to be sweating it out, getting the gardens in order after a spring of neglect.  Unfortunately for Carl, being the only other able body at home, he was recruited to help out. 

My mom and dad were on my mind a lot today as they both have medical procedures being performed the next couple of days.  Mom makes hers out to be nothing and Dad’s isn’t major either.  I’m heading there tomorrow to help out.  The reality of it is Mom’s is more than nothing but planned for and Dad’s, like others in recent history, as is the case with my dad, popped up at the last minute.  He doesn’t like going to the doctor.

It has been an interesting year in our family.  Many, many trips to doctors, hospitals, emergency rooms,,, etc.  Lot’s going on. My sister Julie finished her degree and got her license so she is now a practicing Nurse Practitioner.  Craig was fighting no power at his house as Minneapolis had some storms go through and a tree crashed on their baby sitters car as she was watching my nephew Sean.  Nieces getting married (Megan) and searching for colleges (Evy).

Three trips to Face Book today, ok more than six, to see if they have posted any pictures of our boy. NOPE!  Very Frustrating, disappointing and just plain sad…. 

Well, just have to take a trip there again in the morning…..

So Very Grateful!!

It's been over a week since we dropped Donovan off at Bay Cliff.  I cannot wait to see him, hear his stories, see his progress, hug him!

We've spoken with camp staff a few times and hear he is doing great, working hard and making friends.  We're anxiously awaiting photos to be posted on Bay Cliff on Facebook.  They are very careful about what is publicly shared since they are a health camp.

As we wait and keep faith that Donovan is having an amazing and positive experience, I want to take a minute to thank the organizations that have been a part of this journey.

Helen DeVos Childrens Hospital-  Wow, how to express it...Dr Forness and your team; we will be forever grateful for the incredible work you have done to give Donovan an amazing new gait!  We only expected enough changes to help him increase efficiency as he walks and avoid future hip issues.  What we quickly saw though as he began to walk again was a beautiful new gait!  He's got a long way to go towards full strength and changing those old habits but we are so excited for the potential!
 
Thank you to the whole team at the hospital, Donovan's nurses, the aides, administration for driving excellence in health care and comfort!  All of you played a role in making this most difficult part of the journey as comfortable as possible and free of post op complications.  Your care was compassionate, exceptional, gave us confidence in Donovan's recovery and prepared us for the next steps.

Mary Free Bed... What an amazing team you are!  Your expertise in therapy and rehabilitation gave Donovan the absolute best start at this next phase.  Through moments of discomfort, resistance and frustration, you pushed and supported Donovan to do the hard work, to keep him progressing and not allow plateaus in progress to win.  You taught us (again!) to trust that Donovan can do more, should do more, and can be as active and enjoy just about anything in life that he chooses to!  Dr. Rush, we so appreciate your tenacity to solve problems and your advocacy to keep the intensive therapies when our insurance company resisted.  Some of you were new to us, some of you got to work with Donovan during his last stay.  We are forever grateful for all of your care!


I also have to say a very heartfelt word of appreciation to all of you that shared a parallel journey at Mary Free Bed.  I can't express enough how humbled we were that you shared your personal stories, how blessed we felt for the moments of support and the moments when our support was needed.  The stories and strength within the many families can't be easily explained but please know you remain in our thoughts, our prayers, and we hope to stay in touch.



Family Hope Foundation... a fairly young but very effective foundation started to facilitate information sharing and support to families with special needs children.  The FHF has done an amazing job of being a conduit of what's happening, what resources are available, links to the many great providers throughout West Michigan, and providing scholarships to families for therapies not covered by insurance... 61 scholarships were distributed this round!.  We will forever be grateful for the scholarship we have received to help towards Donovan's stay at Bay Cliff.  The average cost for a camper at Bay Cliff's Summer Therapy Camp is $5,000.  The camp itself offsets some of this through it's own fundraising but it was still an expensive proposition for us, particularly in this year of many costs associated with the surgery, the hospital stays, the eating away from home and the traveling between home and the hospital.  This grant allows Donovan to take the next step in this long journey of intensive therapies.  It is helping him to re-energize in a new and exciting setting, where he is making new friends facing similar challenges and celebrations, and with a staff that brings expertise, enthusiasm and compassion.  This is giving him the best shot at stabilizing the gains the surgery brought, strengthening his spirit and independence, and giving him a peer group to grow with that face challenges just as his but won't be defined by them. be defined by them.

Emma and Carl... Wow, you have risen to the occasion!  I don't know how we have been so blessed but we have!  You both have done an amazing job of growing up fast, of working together and with Dad and me to be responsible, to support Donovan, and to take care of yourselves during this time.  We are so proud of you and grateful for you!

Donovan Letters #2

Dear Donovan,

Well I’m on my way back from San Francisco and enjoying a very quiet moment in the Minneapolis Airport at 5am.  I arrived on the Red Eye flight at 3am and of course, my arrival gate was at the complete opposite end of the airport.  Oh well, I had time to kill and the walk felt good after sitting for 4 hours on the flight home.  Coffee!! 

None to be found…. The only workers in the airports are cleaning and maintenance crews…. Well, will just have to wait until something opens.

Mom talked to Miss Emmy (I think that is her name) and she said you are doing well.  Enjoying the games at therapy, eating better (due to the medication that sometimes affects your appetite) and having lots of fun with your cabin mates!  All good news and reassuring that you are adjusting and making the most of it like you always do, when challenged!

Of course Mom would feel better if they would post some pictures on their Face Book page so you could see your face.  They can’t send us pictures directly for fear of breaking the HIPAA rules (funny, think anyone will know what that is when (if) you read this in 20 years)! 

I just checked out Bay Cliff’s face book page and no new photo’s.

………………………….. later that day………..Clark Kent is washing out his S suit……… :)

Well after a good nap and some good food and a good shower, I felt halfway human.  Mom is running around getting Emma ready for the PALM ride, getting Carl from Basketball Camp and I’m writing you and having a pop.  It’s a beautiful day here but too hot for me.    

Mom loves this weather.  The hotter the better for her.

Miss you….