Traveling to the N.E. Coast

We are taking Jess on a road trip vacation to the east coast right now. We decided after 5 years it was time to have some fun and see some country. The easiest way for us to travel is in a motorhome and on the road. We have so much stuff to take care of Jess it helps to have a big place to put it all. We set out on our way to see new sites, fall colors and visit family. So much has happened since I last wrote that I just decided to pick up at the present and leave the rest to your imagination. It has and is always quite the journey we are on.



We stopped in St. Anthony, Idaho to visit Jess' grandma. It was so good to see her. She will be 90 next month. We spent the night, took her for a ride and then kissed her goodbye. We headed for Yellowstone Park but there was a bridge out in Mammoth so we took a detour around Earthquake Lake in Montana. It was beautiful. We knew John (Jess’ OT therapist and our dear friend) and his wife Wanda were traveling home from MN so we gave him a call and strangely enough he was very close to us. So, we made a plan and met him in a small town in Montana for a great cup of coffee. Of course, he had to give Jess a little range of motion for the road.


We headed to Minneapolis to visit Jess’ brother, Joey, his wife Angela and our grandson, little Breck. It was so good to see them all. The weather was questionable with a lot of rain but we did get Jess out for a nice long walk in his new all terrain trike/stroller. We stayed in MN for 4 days, got caught up on our laundry and enjoyed every minute of our visit with Joey.


Next we headed to Elkhart, IN to visit the manufacturer of the foreclosed motorhome we bought but they said we would have to wait until January for an appointment. Go figure that one!! We turned north to Battle Creek, MI where we picked up our accessible Honda Element.

We sold the big van and the toy hauler camper so we were able to get Jess a more economical car with easier access. The floor is lowered and has a ramp that folds down. He can ride next to the driver now and we can keep a better eye on him. So, we hooked it up behind the motorhome, slept in the Honda dealership parking lot and the next morning headed for Cleveland, OH.


Jess’ other grandma, Juliann, his two aunts, Jenn and Joy and numerous cousins live in Cleveland. We first stopped in Greenwich, OH to visit Jenn. She lives in a beautiful house that Chris actually built 20 years ago. Chris, Jess and I stayed out on her beautiful farm when Jess was only 2 for a summer while Chris built her a timber frame house. It was fun to see it all again. Jess loved swimming in the lake when he got older so we took him for a walk all around the lake.

We stayed for two days and then headed for Cleveland to Chris’ mom. Of course, we got a very warm welcome and a pot of her famous cabbage rolls. The Catholic church’s priest let us park in the church parking lot behind Grandma Juliann’s house. It was pretty cold so we didn’t get out much but we had lots of visitors. Chris got to see a couple of old friends, he helped his mom and sister with a few fix-it items. Chris' sister, Jenn, is joining us on our adventure to the east coast. It is always such a pleasure to have her company.





We went back on the road and headed to Niagra Falls. It is really something to see and amazinig how powerful the water is going over the falls. We were able to get Jess out and walk along the edge. The weather has been very cold and storms have been chasing us.





We are headed to the east coast and plan on stopping to see Daniel Hays, he was one of Jess' caregivers in our beginning days on this journey. And oh, it has been a journey! After 5 years we are trying to accept where we are and find some peace and enjoyment in life. We have two choices. Being sad and depressed is such a waste so we decided it was time to make the best of it and find a way to enjoy some of this life. We are giving it our best.



I will try to update you on our travels again soon. Happy Fall to all!



P.S. I want to ask everyone to please put Denise deLisser (our good friend and cranial sacral therapist for Jess) and her husband Greg in your prayers. Her husband was in a terrible motorcycle accident on July 31st and suffered a brain injury like Jess. He is fighting a courageous battle and needs us all to pray for his recovery.

Happy Birthday!

Happy 22nd Birthday, Jess!

We love you so much,

Mom & Dad

Five Years Ago Today

What do you do or say on the fifth anniversary of a tragedy? Five years has gone by so fast but then again it has been an unbearably long time. When I look back through the pages of where we have been and what we have been through, I really don't know how we have survived the last 1,825 days.

We have done so many things to help Jess recover from the horrible accident that almost took his life away. We have never given up hope that something would click and help his brain heal. We have been to the Primary Children's Hospital in Salt Lake City, The Centre for Neuro Skills in California, Atlanta, GA to see a world renowned healer (John of God), the Cleveland Clinic for a trial that never happened, to Minneapolis to learn how to do neurofeedback and to Boise numerous times for numerous reasons. We even enrolled Jess back in school for four years hoping it would stimulate his memory of friends and of places and things he loved to do.
We have heard of countless prayer groups who have prayed for him, countless people who have prayed for him (including the Dahli Lama), countless people who still pray for him and we know some who have lost their faith and given up praying. We have seen too many doctors, have had too many tests and have endured too many sleepless nights.


We have done every therapy you can imagine with every kind of therapist. We have cried and we have cried and we have cried. And, unfortunately Jess is not much further on his path of healing than he was 1,825 days ago.



Our son still cannot walk, or talk, or laugh, or cry, or stand or sit without support, or pick up a pen by himself or call our names in the night when he is afraid, or even ask why this has happened to him.



But, he can smile, he can blink three times to tell me he loves me. He blinks twice to say yes and get the horse to walk. He gives his dad the cutest grin when he tries to get away from a big bear hug. He moves his leg occasionally when in the walking sling and hits his switch to make games on a computer react. And he can look at you with the most precious blue eyes and have a presence that makes you want to just cuddle up next to him and hope that if you close your eyes and be really still he might take you with him in his many travels in his dreams.

We are survivors. How or why, I am not sure. I guess we don't know what else to do but to keep believing a miracle will happen and Jess will return to us whole and perfect again. If not, we will always love and care for him as we are doing for as long as it takes. We will accept him for whoever he is today and not wish away the day wanting him to be who he was five years ago. We have found out you cannot live each day in sorrow or it will destroy your soul.


It was just about this time right now that we got the knock on the door five years ago. I am looking out at a beautiful sky full of wonder with the sun saying good night behind the dark and eery clouds. It is just another day in our lives, another milestone. We made it to five years and we are still all together and we still love each other. We still can hold each other and find small things in our day to help us feel glad to be alive. Maybe June 17th, 2009 is a new beginning of better days to come. I hope so. Don't you? With love....

April Already

It has been a long winter. It seems I have been so busy I sometimes don't even know what day it is. Chris worked a lot at the Nordic Center this winter so Jess and I spent too much time inside. We both have cabin fever. It will be so nice to get back to walking on the bike path and sitting out on the deck again. I am sorry I haven't written for such a long time.

It has been an emotional week for our family. We lost one of my special uncles on my mom's side of the family. "Uncle George" will be greatly missed. He meant a great deal to all of us!

Where do I begin about our Jess? The month of February was a good month. We didn't have any seizures and I thought we were "out of the woods". We are still giving him Chinese Herbs and a low dose of Keppra (seizure med). But, March brought us a couple of seizures. We can recognize their onset and stop them pretty quickly now but I will never be comfortable with them. I have done over 80 sessions of neurofeedback with him since we returned from Minneapolis last fall. I do believe they have helped along with the herbs. We think they have something to do with swallowing or his stomach.

We had a nutri-evaluation done with a blood and urine test to make sure he is getting all of the essential nutrients and found he was not doing well with the one can of Jevity that we were giving him for lunch. We mix a special formula or protein powders, supplements, rice milk, organic fruit or vegies, Omega oils and whatever else I feel he needs in a blender for his breakfast and dinner. It has to be blended fine enough to go through his feeding tube. When we came home from the hospital almost 5 years ago he was on 8 cans of Jevity a day. It was not agreeing with him then and the one can still isn't. It is very complicated to make sure he gets everything he needs through his tube. So, we are now trying a new diet and hopefully it will be better. I just wish he could tell me how he feels.

The people in our life keep us sane. I don't know what I would do without John (OT therapist)and Tracy (speech therapist). They come to the house now 3-5 times a week and have not given up on Jess from day one. They keep us going and from falling victim to that constant lurking companion...depression. We also have our acupuncturist Joan visit him once a week and the cranial sacral girls Denise and Jolinda come once a week. They bring such a special love to that boy. And the wonderful volunteers and employees at the horse arena who also have never given up on him and still get him on Charlie Brown twice a week to ride around the arena for 30-40 minutes. We still have one caregiver, Jaime, who comes 6 hours a week. She has learned a lot about Jess and it is great to have her around. We are trying to find more help but the thought of training someone already tires me.

A good friend Judy and Jess' long time friend Mikey have been coming one day a week to work with Jess. They paint with him or read to him or act out fun plays or sing to him or reminisce the past with him. He is so reactive to their presence and smiles so big. What a blessing friends are! And then there is his Uncle Jim who comes over and plays his guitar or accordion for him or he just checks in to make sure we are okay. They are all so important!

I have 3 special friends who call to check in on us or bring me lunch sometimes on Friday and fill me in on what is happening in our community. It seems the most I get out to do is grocery shop, go to the post office or drive to Twin Falls once a month to stock up on stuff. It has been a long winter.

I walked down the driveway to our mailbox one day and discovered an envelope addressed to Jess. When I opened it I began to cry. It was his high school diploma. He only needed 5 credits to graduate so the school graciously honored the 3 plus years he went to classes after the accident and gave him his diploma. I told him he needed to get on his way to college now. He just looked at me with those big blue eyes and smiled.

How is Jess? Jess hasn't changed much in the last almost 5 years. He tries so hard but just can't seem to link his body with his brain. Some days we think he is totally in there and knows everything we are saying and some days we don't know where is off traveling. He does new things and then they go away. We are constantly trying to find the easiest way for him to communicate so he can make choices in his life. We are still waiting for that miracle.

We visited a new eye doctor in Idaho Falls last month. She ordered him some new prism glasses that seem to help him keep his head and eyes straighter. He has a tendacy to find comfort looking and turning his head constantly to the left.

This month we are going to try to get his teeth cleaned and exrayed and will probably have to have his feeding tube changed. We wonder if it is causing an ulcer. They warned us it might. We are also going to take him to Boise to visit the United Cerabral Palsy center to check on some different options for assistive technology. As always, I am endlessly searching for something we may be missing.

This journey... I would not recommend for the weak at heart. We never thought we would be at this point after so many years. We are exhausted, confused and don't really know where we are going next, most of the time. But I guess we really aren't alone with those feelings these days. We just all have to find a little sunshine somewhere every day. We still pray that someday we will understand. Happy Spring and Happy Easter!

January 26th, 2009

Jess has been pretty sick for the last 3 weeks with a bad cold. Unfortunately, having a cold, not being able to blow his nose and having difficulty swallowing all contribute to his seizures so it has been a vicious circle of worry and sleepless nights. I was able to catch him in time to talk him out of 3 seizures during the middle of the night but he did have one that lasted a little over 10 minutes and we stopped it with medication. They are less severe so far.

He is finally getting better and we have seen a few smiles again this week and he is sleeping better. He has shared most of the smiles with his brother Joey, his wife Angela and little Breck who have been visiting for the last week from Minneapolis. Jess really perks up when he sees his brother and sister or old friends. Dustin came to visit and I could tell he just had so much he wanted to tell him.

We are still working on all possibilities of helping his progress. What else can we do? Hope everyone is starting 2009 with positive thoughts to turn this dreary situation in our world around. Just like we can't give up...we all can't give up! Take care!