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….

Donovan Letters.... #1

Dear Donovan,

I’m sitting in my hotel room in San Francisco thinking of you… like I have every minute of every waking moment since I last saw you in the rear view mirror.  You stood there with tears in your eyes, standing tall, and not wanting, but willing, to stay at camp.  The pride I felt in you at that moment has never been higher.  My confidence in you, when I saw those rainbows on the way home, never stronger.  God has blessed us with your strength, determination, charm and joy for life.

Yes you are determined, stubborn, relentless, strong, and challenging!  All qualities that will get you where you want to go and enrich the lives around you.  I’m proud of you as well as, Carl and Emma.  

Since you have departed (ok were abandoned) we’ve seen little steps and big steps from your best friends (who are your siblings) that are quite amazing and yet not.  They have taken strides of their own during this journey that reassures me you three will (along with your great group of cousins) continue our family’s great tradition of sticking together, supporting one another and always having a good time, no matter the road blocks that need to be overcome.

Sharing in both good and challenging times, always willing to come running at a drop of a hat when necessary for family or friend. 

Watching the three of you on the way to camp laugh, giggle and goof around is always a joy.  Seeing you fishing with the Johnson boys, and how Ricky, Emit and Elliot always take care of you, creating special events for you, and yet treat you like just another one of the gang is just simply incredible and yet not. 

It is just our family.  What it is supposed to be, what we are blessed with, what your grandmothers, grandfathers, great uncles and aunts gave us, your parents and aunts and uncles…. Strong families, traditions, strengths, and determination and skills to overcome our own weaknesses and mistakes.  Yeh, we’ve made a few, like you will someday.  But what your generation of our families, are learning now from your strength to overcome the fear of being away from camp, is the knowledge to address your fears and have the confidence to learn from it and thrive.

Can't stand and fish... Ricky gets him a chair... Donovan lands the biggest fish of the day!

  Or as your grandpa Don would say… “pull up your socks, wipe your nose, and keep going”  Not sure that is an exact quote, but you get the jest…. Just another mistake of your dad that your mom or one of your aunts or uncles will correct me on later…..

Of Angels and Rainbows.....

The beautiful grounds of Bay Cliff overlooking Lake Superior

For those that haven’t heard us explain, Bay Cliff Health Camp is an 80 year old camp in the Upper Peninsula.  Their premier program is Children’s Summer Therapy Camp; a seven week session where kids are immersed in therapy but in a camp setting with no limits on how it happens (i.e. no insurance guidelines to dictate what can be therapy).  I stumbled upon it over a year ago when I was looking for a camp for our entire family to attend to help us grow from the experience of living with CP.  At the time I was only interested in us coming as a family but as I talked with the therapy coordinator, Miss Christy, and heard things like, “we’ve had kids with that surgery and they’ve made great progress” I knew we should consider it for Donovan. 

It truly took me an entire year to think about sending Donovan away this far or for this amount of time without crying. We knew this was a wonderful resource but how could we let go of him for seven weeks!?  And, how could we consider this when he has been through so much already this year!?  How would he do away from us, not only Steve and I but his best friends and best advocates;  Emma and Carl? 

As we learned more about what the rehab from the surgery involved, it became easier to see this camp experience as a gift.  It has the potential to help him grow stronger faster and would be a lot more fun than the therapy models we use already; driving each day for a one hour session.  And, almost more than the rest, the idea that Donovan would be surrounded by kids with differences, who will understand his situation, not allow him to fall into the “I can’t because I have CP” thinking, and will be friends without differences defining who they are.

One of the main buildings.  Many beautiful buildings including the original farm house and barn from the 20s

So Steve and I agreed we needed to do this.  But, Donovan is not a “camp kid”.  He wants to be home, he wants to be with us and he is a very clear thinker and will commit 100% but it has to be his decision.  Our turning point was when a wonderful Miss Erin came to visit Donovan while he was in Mary Free Bed.  She is a Bay Cliff staffer working on finishing her Masters in Occupational Therapy and happened to be living in Grand Rapids for the year.  She brought her laptop full of Bay Cliff photos and sat with Donovan on his hospital bed to tell him about Bay Cliff.  Within minutes, he said “I want to go there” and we knew we could do this.  

The banner that greets you as you enter the therapy gym.  It says it all!

From Steve...

Of Angels and Rainbows…..

I hadn’t seen a rainbow in I don’t know how many years but it has been a while.  Could be I just wasn’t looking for one or it could be it just never struck me when there was one in front of me.  

Phase four of Donovan’s journey was the check in at Bay Cliff and leaving our nine year old in the capable handles of strangers.  Thank God Erin was there.  She was the wonderful OT who took time for us while at Mary Free Bed, and spent 3 hours filling Donovan’s heads with wondrous stories and pictures of camp.  She got him pumped to go…. Even after telling him later it was seven weeks…  

In the Therapy Gym with Erin

Erin is spending two weeks working at the camp in transition from moving from Grand Rapids to Royal Oak.  It’s a mystery to me (and yet not) how things work out to take care of D (and the rest of us).  It just so happens, Erin had a window of opportunity and Bay Cliff (BC) let her come to volunteer at the camp during her transition.  Seeing her friendly face as we walked in to check in and check it out, made all the difference in the world.  It settled our nerves and reassured Donovan, as much as possible, that he already had one friend at BC.  

As we took the tour and met all the staff (from therapists to ground keepers) it was apparent how kind, soft spoken and passionate everyone is, and they are all involved in taking the raw campers who enter in June, to work on maximizing their potential by August.  We met first time campers and experienced ones; first time counselors to the 20+ year Director.  There was a lot of enthusiasm, warm faces and encouraging words (for both campers and families leaving precious packages)…

BC originally was a Dairy Farm (ironic huh!) and held its first camp in the 20’s for kids with Polio.  It was one doctor and 6 kids.  You can still see the original farm house, barn and silo on a cliff overlooking Lake Superior.  Although many of the buildings are very old with “classic” looks, everything was immaculate, clean and well cared for.  Check in was orderly and took about 3 hours.  Each staff person listened intently, got to know D, answered all our questions and more, and left us encouraged and hopeful.

Miss Kim, D's Speech therapist who btw teaches at a bilingual school in Chicago!

Miss Christy (PT) in the Therapy Gym

Miss Carrie, D's OT

Donovan, in all this fuss of checking in, was having fun, getting impatient, being charming (working his magic on the staff) and showing off his camp as he discovered new things.  The campus is large and spread out but not daunting.   We moved from building to building and learned all we could.  As Bridget and the kids started this process I unloaded the truck with D’s stuff.  Bike, golf clubs, fishing pole (thank you Johnson clan for the new pole and gear!), two bags of stuff and a back pack.

The Bike Porch where Donovan's Terratrike is with many other adapted bikes!

Emma and Carl handled things fairly well.  They liked exploring the camp and buildings, Emma talked with staff and Carl ended up playing with a bunch of the kids as we unpacked Donovan in his cabin.  There is a total of 6 boys in his cabin, and he by far, he had more stuff than anyone (6 stuffed animals, books to read, pillow pet, etc. etc..)  Of course the day would not be complete if Emma and Carl didn’t complain about it being all about D, or about each other or being bored or etc… In other words, kids being kids.

If you hadn’t noticed, I’m stalling talking about the good bye.  It is easy to talk about the great views and people when it really only boils down to the last 5 minutes.  It all started when D realized it was close to us leaving.  Bridget and I were in his cabin talking with his Cabin Counselor and wrapping up things, Emma was conversing with a couple of boys in the room and Carl was outside playing some sort of ball game with a dozen or so camp kids, being the ring leader.  

The next thing I see is D bolting across the lawn from his cabin to the truck about 75 yards away.  Emma came up to me with a concerned look and said D is saying he wants to go home.

Bridget was finishing up with details with the counselor so I walked over to D who by this time was on the other side of the truck, about to open the door.  As I approached him I asked him how he was doing and told him how much fun he was going to have.  He said he wanted to go home in a low, somewhat wining voice.  I ignored the comment and said Mom wanted to get a picture of all of us, so if he would move, I’d get Buster out so he could be in the picture too.

The next 15 minutes or so are hard to describe.  Fear, hope, sadness, and pride.  As much as D pushed to go home, I could tell he’d get through it.  It wasn’t that determined “I’m going to throw a fit voice”, I heard in previous push backs.  It was I don’t want to do this but I know I should.  He wasn’t afraid as much as he just didn’t want to leave us.  

Earlier in the day as we were driving to the camp, he said to Bridget he didn’t want to go to camp, but he would if SHE wanted him too.  Bridget said she did, and all he said was.  “ok mom, I’ll do it for you”!

At one point, as we were now behind the truck, as we were moving to a tree where I thought we could get a picture, he got really frustrated and looked at me hard with tears in his eyes.  I bent down in front of him so my face was only inches from him, and said he forgot to shave my beard, and that we would do that when he came home. (he hates my beard as it tickles him when he hugs me.  For a while he wouldn’t give me a hug).

He laughed a little between tears (there were many in this sequence of events with him, but not loud crying) and said NO!  I told him I’d let him shave funny figures shapes if he would be strong and have a good camp.  He laughed at the idea of shaving an Angry Bird into my face and his eyes brightened slightly!  Then the tears started again (no... crying) and I looked at him close and said “if you don’t stop it you’re going to make your dad cry.  You want to make your dad cry, do you?”. He thought that was funny and laughed pretty good and the tears stopped for a moment.  I choked back my emotions and got him over to the tree on my lap and we got a few pictures.  Not without a few struggles with him refusing to pose and Buster being silly.

As this was all going on (before the pictures) Bridget went and thank God found Erin who helped take the pictures with D’s cabin counselor.  After we got the pictures done, Emma and Carl did a quick goodbye and jumped in the truck and loaded Buster.  Now it was imperative we move quickly and leave.  I sensed Bridget needed to get her emotions away from Donovan's sight.  She kissed him on the head without words because she was loosing it and got in the truck.  As Erin and his Cabin Counselor bracketed D to give him support and encouragement,  I gave him a quick kiss on the head and told D I loved him and was very proud of him and ran for the truck.  

I started the truck, turned around and waived to D.  He was visibly upset and crying as he watched us from the side of the driveway.   As we pulled away, Carl opened his window and said “Bye Donovan!  STAY STRONG!” and we pulled away to leave him the hands of very capable staff.  

It took everything I had to focus on keeping the truck going forward, telling myself we were doing the right thing, he would be ok, the strangers who now had our precious son, would take great care of him and someday, at his graduation, he would tell Bridget and I this was a turning point in his life to true independence and strength to achieve all I know he is capable of.

As we drove down the road, Carl and Emma talked about how cool the camp was and how well D would do there, giving us “parents”,  words of encouragement.  Carl asked his mom if she was ok and reassured her D would do great.  As I heard his words I took a brief look at B and could only remember the night we let Emma cry herself a sleep when she was 9 months in her crib.  Only this time, B didn’t have a bottle of wine and a FULL box of Kleenex.

As we drove down the road, it took all I could muster to keep the tears back as much as possible. Only a few small leaks escaped me.  I couldn’t remember a more emotionally wrenching time as I watched Carl and Emma launch onto their iPods.  They were dealing with this in their own ways.  About this time, Bridget ran out of Kleenex and used up all the fast food napkins in the truck, we saw a rainbow appear over Lake Superior!  It definitely made us feel better, and Bridget yelled to the kids to see it!  The mood was broken, a little….

Not easy to see but the rainbow is arching right over the road ahead

We stopped for dinner at a little restaurant in Munising after 30 minutes in the truck.  It provided a moment of respite from the emotions, as we focused on food and the US Open Golf tournament on the TV.  As we were leaving the restaurant, a squall came off the lake and a big down pour had infiltrated the open windows in our truck (we left them open for Buster).  After several minutes of scrambling in and out of the restaurant for paper towels to clean up and me trying to find my phone, (thinking I left it on the table, only to realize it was in my back pocket), we started the long journey home.

Can you see the double rainbow!

As we crested the valley Munising is in, there was another rainbow, then another one, then a double rainbow.  I can’t tell you how many we saw, but each one was bigger and brighter than the last.  Bridget tells the story about angels and rainbows.  As she recounted the story of Kevin, all I could think of was the special people in our lives who have passed and were the instigators of all those colors to reassure us.

Happy Father's Day, Daddy

Donovan would be alright.  We would be alright. All those angels were overlooking Bay Cliff watching and talking to him, giving him strength and determination, as we finished our drive home….

Epilouge.... from Bridget.....

The next day... I talked with Donovan's main cabin leader who said he had a rough 30 minutes but then took interest in the camp activities and had done great since then.  We asked about bedtime, thinking it would be hard again for him but heard that he did great and was even one of the strongest in his cabin. 

That's our Donovan!