Monday, January 25, 2016

I’ll Admit It…

I’m going to write my thoughts here so they don’t get misplaced as a random paper on a stack in the corner or used for a papier mache art project. You don’t need to read it if you’d rather not. I’m trying to come to terms with what our life has become and what is ahead.

It’s time that I say it out loud. My son is sick. He has a lifelong disease that has no cure. I am the mother of a child with Crohn’s Disease. He was diagnosed at age eight after a summer of intense pain, scary symptoms, unhealthy weight loss and doctor appointments that led to horrible tests. They say the earlier a person gets Crohn’s, the worse his disease will be. For the rest of his life. Every moment of his whole life.

I am fearful. I am worn down. I am heart broken. I am ashamed.

I am afraid of what is to come. Most Crohn’s patients have surgery, some multiple times in their lifetime. We could deal with tube feeding, ostomy bags, weekly shots that I myself would have to give my baby boy, expensive special diets, medications that we can’t pronounce. And this could all happen before he leaves home at age 18. I am fearful that he won’t be able to live on his own or that he will become a burden to others. I am afraid that he won’t be able to live the active life that he desires because his body is trying to kill him. I am afraid of the work that needs to be done to keep him as healthy as we can. I’m afraid that he will feel “different” and suffer because of that.  I am afraid of the cost financially to our family. How can we save for his college when the monthly costs of medications are sucking us dry? I am fearful. I am afraid.

I am worn down, worn out, and just plain tired. I am his primary caregiver and it’s a hard job. At times I feel like it’s too hard. My job is to make sure he takes his mountains of pills twice or three times a day and to eat…even when he doesn’t want to. I have changed our family’s entire way of eating and the way I prepared our foods. Easy, ready to go food is a thing of the past. I cook from scratch after I scour the internet and cook books for recipes that will work for his special diet needs. The list of foods he can’t eat is starting to become longer than the list of what he can. I am now on a first name basis with our pharmacist as I have spent much time there trying to figure out the insurance obstacle course. I am tired of searching for natural alternates to replace or assist the man made poisons that we are flooding his body with in our attempt to help him. I am tired of people trying to help by recommending “the perfect diet that has changed their life.” I am tired of my son’s emotional fragility. It seems as if every day I spend more and more time holding him, working on relaxation techniques, and having my heart broken as he sobs against me. I know that it’s mostly the medication and his uncertainty in what is to come. It still exhausts me knowing that each morning I get up, each day will be the same battle, the same fight to get our schooling done with as few tantrums as possible, the same goal of educating both of my children and help mold them into amazing humans. I am tired.

I am heartbroken. With the birth of a child, we as a society have this ideal dream of how our child will be and what he will become. My dream has been battered, flattened and remade. I see how his life could be with this awful disease encroaching in all aspects. It can/will affect all his relationships, his ability to support his family, even the opportunity to have a family. It will affect his finances, his educational choices, his favorite activities and even his vacation destinations. It can affect his eye sight, his nervous system and his skin. It breaks me. I cry tears of heart break knowing that he will have to fight for what others will just “have.” My baby boy weeps. He weeps because of his pain, he weeps because his emotions are out of control because of his meds, and he weeps because his is “different.”  I wish it was me. I wish that I could trade places and give him the chance to just be. I’ll switch places. I’ll battle for him. I already do, every day. I am heartbroken,

I am ashamed. There are other families out there with much more difficult and hopeless battles. Gavin’s disease will not kill him, side effects or complications may, but his life is not at a huge risk. He is able to live a seemingly normal life, at least to those on the outside. He gets to live here at home with us and is able to participate in most of the activities that he enjoys. From the outside, he looks fine. I am ashamed that I am so affected by his diagnoses, so stunned and frozen. I am ashamed at my inability to help him. I read all that I can, keep in close contact with his doctors, and push to get answers. But I can’t fix it. I am ashamed that I can't see all the good that we have been blessed with. We have our farm in a beautiful setting and have the life that we dreamed of. I am ashamed to complain about the money that we spend on his health. We have the money (mostly) and insurance, but how I wish it could be spent on updates for our house, a family vacation or a nicer car that is reliable. As I think of that, waves of guilt drown me, crash over me. He is my priority. I should be happy that he has the life that he does have. Happy that we haven’t lost him. Happy that he gets to live. I am ashamed.

I am hopeful. I am a fighter. We will not give up without a fight, a down and dirty, biting and kicking fight. Crohn’s Disease…You don’t get my son. You don’t get our family. I believe that God the Father has His mighty hands of protection and healing on my children. I believe that he will heal my son, either by his miracle or by the miracle of science. I have hope that in his lifetime, a cure for this disease will be found and made available for all who suffer. I am thankful for my husband and my family as we come together to surround Gavin with support and love.  I have hope for our family and for my son.


My son is sick. I am the mother of a child with Crohn’s Disease.

Tuesday, April 9, 2013

If we can't buy a new house...we'll just add on to ours:)

For the last three years, we have looked and prayed and looked some more for the perfect house with a bit of acreage in the perfect setting, in the right area for our family. No luck. We've put offers on 4 different houses. Each offer ended at different stages in the home purchasing process, but they all have ended with us not owning a new home. The last couple of months, it has become glaringly clear that the kids needed their own rooms. Our lovely 130 year old home has only two bedrooms upstairs. Which was fine for the first 10 years that we have lived here. So, if we can't move, we'll make the house work for us until that perfect house is found.

We have our Gathering room available to us, it's a large open area at the top of the stairs that I rehabbed several years ago (You can see it Here). We have been using using it as a glorified hallway for the most part. Oh, and also it's that place where things go. For things that don't really fit anywhere else but you can't get rid of yet:) It has purpose now! It is now Gavin's room/nook and our "Library Hall."

Here is where we started...


After a lot of this...


and this...





and this...





We have Gavin's room!




And the "Library Hall" as Gavin calls it. I also have a huge linen closet now. Oh how I love storage:)




I still have some decorating, sorting and touch up to do, but it looks fabulous and it makes our house work for us. It's a bit strange to open my bedroom door and see this instead of a largely empty room. It's lovely and it functions well. We are good to go:)

The Mystery of the Lost Tooth

Actually, there is no mystery:) Gavin lost his first tooth last evening while supposedly waiting for sleep to claim him. He tromped down the stairs about an hour after his bedtime proudly holding his new treasure in his hand, a small and bloody tooth. 



We grabbed Kyla from her warm bed and made the necessary hoopla including skyping grandparents and sending picture texts. (Times have changed a bit from when Kyla lost her first tooth, we just called using cell phones) 


Please notice the adult tooth lurking in the background. That sucker has been there for about a month, just getting bigger and bigger. Making me worry more and more:) I see another trip to the orthodontist looming in our future.


Now the toothfairy has never come to our house for a couple of reasons. Chad doesn't believe in telling the kids an untruth. The second factor, and maybe the most important, is that Kyla will NOT let me have her teeth:) That girl is a hoarder in the making. She has all of her teeth safely tucked away in a little tooth bag that Grandma Lynne made her once we noticed her tooth hoarding tendency. All that to say, Gav was excited to find a special treat under his pillow this morning...from a toothfairy that doesn't exist. He's okay with playing pretend as long as there is a reward:) You would think that I would have something prepared to slip under his pillow once he succumbed to dreamland, but alas, I did not. With Kyla's reluctance to give up her teeth and our son's very rational and down to earth thought process, this toothfairy was not prepared to come out of the dusty bin of make believe. We were saved by Chad's own hoarding tendency, a golden dollar coin  to slip under Gavin's pillow. 


His smile this morning as he unearthed his golden treasure was totally worth the couple of minutes of frantic thinking and digging. He told me on the way to the bus that even though he knows that the toothfairy isn't real, he just can't figure out how we put that coin under his pillow without him knowing. It must be magic:) 


Wednesday, January 9, 2013

So the year of 21012 has flown by and we have started out 2013 strong. 

Here is a brief overview of last year (you may recognize it as our Christmas letter:) )

We started this year with Kyla’s robotics team participating in the state competition. No trophies came home with us, but fun was had by all. Chad started a yearlong contract with Bonneville Power Administration in Vancouver. In February, Kyla started horseback riding lessons (a lifelong dream of hers) and Gavin started a round of swim lessons with Grandpa Gary. Gavin celebrated his 5th birthday with a family party with lots of food and even more family. March brought rain and six baby chicks to our house. The chicks are grown now and earning their keepJ We took a short family trip to Great Wolf Lodge and indoor water park in April. Please note the “indoor”-this is Oregon. May was a month for planting the garden, Gavin graduating from preschool, and Kyla having her first experience with our local ER and sutures…that darn swing set. June brought a little sunshine, the end of 3rd grade for Kyla, the beginning of summer break and VBS for both kiddos. And then there was July. We filled it with sunshine, a visit from my Aunt, camping at Silver Creek State Park, swim lessons, bus rides, a robotics competition at the county fair, play dates and friends. By August, we were ready for a little quiet…so we only did more swim lessons, a Lego Camp for Gavin, I volunteered for the school and we crewed for a hot air balloon (Gav enjoyed his first flight one foggy, Saturday morning). Kyla turned 9 and celebrated with her friends with bowling and a sleep over. Just when we thought our life was busy, September came. Gavin started Kindergarten at Wascher Elementary, Kyla started an online public school here at home with me as her teacher (EEEK), Chad took on the position of PTA president at Wascher, and Lego Club started (Double EEK). Oh yeah, add in Awana, piano lessons, Evergreen Science Days, and the continuation of riding lessons. October was the month of travel. Chad went to Ohio to visit his extended family and I flew to Indiana to help celebrate my grandfather’s 80th birthday. Lego robotics club continued as did homeschooling and Kindergarten, lessons and life. The month of November was full of Lego robotics and our normal routine. We celebrated Thanksgiving with our families and then prepared for the robotics competition. Chad’s contract with BPA ended early and he was able to work from home for a bit as he waited for his next assignment…a computer game rehab. December started with a flourish with the Lego robotics competition where two out of our three teams received a trophy. Kyla’s team was awarded the opportunity to go to the state competition again this year in January.  We’ve had time with family and friends, enjoyed Christmas concerts, dreamed about our future, and did eventually find time and energy to decorate our Christmas treeJ
In the midst of all that, we found time to volunteer at our church and at the local elementary school. I preserved a big chunk of our garden and Chad canned meat for the first time. When Chad wasn’t busy with Lego club, he was working on PTA stuff, when he wasn’t working on that…we were sleepingJ Our life has been entertaining, crazy busy, overwhelming, and so very blessed.
We pray that this letter finds you relaxed and thankful, healthy and happy. You are in our thoughts and prayers. We wish you a happy and blessed 2013.

We had a wonderful Robotics competition in December. We are so proud of the kids!



We enjoyed spending lots of time with Chad's family over the holidays:) 


 We had a blessed Christmas filled with Christ, family, friends and comfy pajamas.


We are continuing to be busy with Lego Club (State competition is on the 19th of January), homeschooling, school, and life. We have made a major diet change for Gavin just recently in efforts to improve his skin and his tummy. He is a gluten free kid now and we've noticed great improvements on all fronts.


We made an offer on a house in the country that we've been watching and dreaming about for the last 6 months. It appears like it won't be the one for our family. We are the back up offer at this time and we get to wait and see if the current sale falls through.Not a great situation, but certainly doable:)

Life is certainly clipping right along. Prayers for our family would be greatly appreciated as the normal stresses of life (and not so normal) try to wedge themselves in:)

Thursday, November 8, 2012

We are here! We are here!

I feel like I'm the major of WhoVille and I'm needing to let people know that we are indeed still here:)

Last June, we made some major decisions regarding our children's educations that has caused an avalanche of change here in the Riddle household. Let me give you an overview of life here now.

Kyla is being schooled at home for fourth grade. We are using Connections Academy, an online public school in Oregon. I am her learning coach, teacher, planner, poker, lunch maker, chauffeur, the list goes on and on. The first month was so rough, that I was ready to give up and send her back to our local public school. The second month, wasn't as bad as we figured out a schedule that worked for us and adjusted our expectations of our educational experience. We are in our third month and I can truthfully say that this avenue of education seems to be working for us...with Kyla...for now:) I have never doubted myself as much as a parent, as a teacher, and as an educated woman as I have done these past three months. Kyla is carrying an A as her average grade and has settled into this new adventure. She does miss her old school, but enjoys all the extras we get to do like piano lessons, science experiments, art projects, and Science Days at Evergreen Aviation Museum.


Gavin is in the morning kindergarten at Wascher Elementary in our little town. He is enjoying the bus riding, the outside playing and the learning. He is officially a reader and is loving to do math and interact with his friends at school. This year he really enjoys Awana and looks forward to it each week, wanting to prove his memory verses and play the group games. He is our wonderful helper for Lego Club and continues to wow our fourth graders with his building and his thinking. 



Chad and I are coaching two Lego Robotics teams for Wascher and overseeing a third this year. Kyla is an active part in her team and truly seems to have a talent for critical thinking, building, and planning. Our 14 kids are wowing us with their determination, team work and growth. Meetings started in September and we will continue until our competition in early December.


We are still plugged in at Wascher. Unfortunately, I haven't been able to volunteer in Gav's class yet, but the plan is to do so while Kyla volunteers in the library with her favorite librarian. Chad is this year's PTA President with all the glory and work that entails:) He often falls into the PTA trance as he plows through emails and planning and meetings, all in effort to make the school a better place for the kids in our community. The principal actually introduced me once as the wife of the PTA President...pretty fancy:)

Oh, and he still works full time:) Life just isn't life if you're not super busy, right?:) Thankfully, he's working from home about half of the week right now until his next assignment. Then we will see...

That is where we are and where we've been. We are here, We are here!

Monday, June 18, 2012

Father's Day

In celebration of Father's Day, the kids and I took Chad ice skating at our local rink (by local I mean we have to drive 30 minutes to get there and it's the only one that I can think of within an hours drive). We bundled up in our jackets and gloves, socks and pants and then got into our hot car that had been sitting in the 80 degree sun.




video
video


It was Gavin's first time on the ice and a refresher course for Kyla. We played in the brisk 50 degree air and skated around in circles at a snails pace. Laughs were had as well as sore bums made:)



What a fun way to celebrate such a wonderful Dad. He is such a blessing in my life and the kid's lives. I couldn't image raising these two amazing children with out him.

Sunday, June 10, 2012

Gymnastics

For the month of June, Gavin is our resident gymnastics Olympian. We signed him up for lessons once a week at our local community center. Our goal was to give him something special and fun to do while Big Sister finished up her end of the year. 





I think next time we will even comb his hair before we go. You know, just in case it needs to be done:)