Tag Archives: family

Quilts and their stories

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At any given moment my bed will be covered by a number of different blankets. Each one tells a story.

  • The ratty blue quilt that’s barely holding together, the one we take on picnics and to the beach was made for my by my wife. It’s the only full sized quilt she’s ever made and she made it for me. This quilt has been to two foreign countries (Texas and Portugal) and its been a mainstay since she gave it to me after I graduated from high school and before I left her for two long years. I love this blanket ’cause it reminds me of her.
  • The tan quilt was made by my family and was a gift to my wife and I for our wedding (ok, the ‘gift’ was about a year or two late). It’s got stitches from my nieces, my cousins, my sisters, my mom, and maybe even a few others. I love it ’cause it represents my family and my marriage to my wife.
  • We also have a giant quilt covered in awkward photos, funny quotes, and meaningful words. It was given to us by the Renovatus Church community when we waved goodbye to our six year long love affair with them in January. Each square was designed and made by a different person from that community. I love this quilt because it represents such an important part of my life that includes some of my most favorite people.
  • My mom made me a small blanket that is so worn it’s barely used. It’s covered in pictures of my family and its squares are made from fabric of my childhood. I love this quilt because it reminds me of my family and my childhood.
  • I have been given two quilts during my time fighting against cancer. One was made by my aunts and my grandma. It has the scent of frankincense (a scent important in the Christian story and also an important herb in fighting cancer). My sister and her whole church also made me a quilt. It was stitched on by strangers and loved ones alike and has ribbons stitched on that are associated with central nervous system cancer awareness. I love these blankets because they’re reminders that people are praying for me and my family.
I love the story that my bed tells (ok, that could be take the wrong way now couldn’t it?!) While these blankets don’t capture everything that matters to me, they catch much of it. So please know that if you love me you’ll make me a quilt…or else.

Impulse Control…

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My son and I are amidst the same struggle. We both have legitimate excuses: he’s five and I’ve on ‘roids. Neither of us want to let those excuses excuse us from responsibility for being a jerk. Again, he’s five and I’m twenty-eight.

Jones was listening to his favorite book on tape A Wrinkle In Time and was therefore in his fog that comes with his complete absorption into the story.  It was during this time that exuberant young full of life three year old India came and tried to look (or take) what Jones was holding (in this case maybe a blanket? It honestly doesn’t matter). Without hesitation or little provocation Jones began to pummel his sister repeatedly and without abandon. She responded as a little three year old girl does and should: life as she knew it was over. My response was to immediately put Jones in time out on the stairs…kind of. Right now I’m really having a hard time regulating my emotions–they swing more than they ever have and its been challenging for me to say the least to learn to regulate these new found extreme emotions. I’ve always been a steady, even, and controlled person so I even scared myself when I forcefully ripped Jones’ headphones off his head and ripped a pacifier out of his mouth (another story for another place). Even further when Jones started screaming and then shrieking (I cannot explain how loud this “shriek” part was) I yelled loud at him (STOP!) grabbed his shoulders and told him to go upstairs. I know I grabbed his shoulders too hard because it was clear but also because as he’s crying and going upstairs he’s saying “you don’t have to be so rough with me…” It was not good parenting…and Jess took over…upstairs. I stayed downstairs, cooled off, and tried to reheat dinner. Thanks to grandma (who’s eyes were quite wide at this moment) dinner actually got made.

I say all that confessionally but also to get to the conversation that my son first had with Jess and then had with me. I’ll try to recount it as best I can (and I might kind of blend the two conversations a bit into one).

Jones: (tearfully) I don’t want to do things like hitting India. Its like my brain can’t stop it. I try and I try but I can’t seem to control myself. I don’t know what to do I just can’t stop!

Jess: It’s hard huh. That’s called impulse control. That must be really scary to feel out of control.

Jones: It is scary and I don’t know how to stop (crying increases). How can I control myself when I just do it and don’t know what I’m doing? I don’t want to be like this! And I don’t know why daddy is acting like this either. He never acts like this. Why is he so harsh? He just grabbed my shoulders hard and he doesn’t do that!

Jess: Daddy is having a hard time with impulse control too huh.

Jones: Yeah and I don’t like it!

(later, laying in bed with me and after rehashing the same content above)

Me: It sounds like we’re really experiencing the same things right now huh Jones?

Jones: Yeah, I don’t like it.

Me: Me neither. Did you know that daddy is on some drugs right now called steroids that make it hard for me to control my emotions?

Jones: Really? Why do they do that?

Me: Well the steroids are helping my body, but they come with things called side affects. One of those side affects is all this extra emotion that I’m having to learn how to deal with. We’ve got to work pretty hard to make good choices even when we’re feeling out of control huh?

Jones: Yeah. I can’t wait ’till you’re off steroids.

Me: Me too. But I don’t think its just the steroids I think daddy is also just learning how to cope with all the changes in his body. Do you think we can both work on trying to make good choices even when we’re feeling out of control?

Jones: Yeah I think so…Dad, is your tumor benign?

Me: What? (I was completely caught off guard here) Actually they thought it was but now they’re actually still studying it trying to figure out what it is.

Jones: What’s benign again?

Me: Benign means that the tumors not doin’ much, it’s just sitting there in my back chillin’. But guess what, they sent my tumor to a place called the Mayo Clinic and it’s one of the best hospitals in the entire world!

Jones: WHAT! (laughing) The best hospital in the entire world! Do they let little boys go there?

Me: I bet they do.

Jones: I want to go there. What are they doing with your tumor?

Me: They’re studying it and watching it. It’s acting weird and they’re trying to figure out what it’s doing.

Jones: Well I’m glad that its at such a good hospital. I hope I can go there. But it’s not cancer right?

Me: (I chickened out) I hope not, but we’re still waiting to find out. Hopefully we’ll find out soon.

Jones: Well I’m glad it’s at the Mayo Clinic.

Me: Me too.

*end scene*

 

Good News For My Son

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Did you know that a lifelong undiagnosed extreme fruit allergy will ruin and attack your immune system? It can cause chronic ear infections, wreak havoc on your digestive track (causing other sensitivities to food), and it causes neurological damage (not permanente) among other things. Essentially it messes with your body in intense ways…as if you’re eating poison…which you are.

After being off fruit for two weeks my sons body is healthier than its ever been. While it’s hard to articulate and it’s still up and down due to the nature of our life right now even his ability to regulate his extreme emotions and intense sensitivities has been transformed in this short period of time. Even further, and of the most importance right now, in these three days his swollen lymph nodes have begun to shrink to the point that yesterday our doctor exclaimed “There’s no possible way this boy has lymphoma!”. Turns out his lymph nodes were maxing out after years of storing up toxins due to this unknown extreme allergy! (my wife could write a three page article here detailing Jones’ medical history in order to show how many connections there are to symptoms of a bad fruit allergy and his health concerns since birth)

I cannot tell you how glorious yesterday was, how ecstatic all of us (including Jones) were to know that not only do we no longer have to fear Jones having cancer, having a biopsy, or having to have his lymph removed but we also get to see my son head down a path of health! He has been plagued his whole life with chronic ear infections, with food allergies and sensitivities, and with a brain that functioned so intensely that it often would get out of control. In the last two weeks he has shown a calmness and new level of emotional articulation that are new*, his body has looked healthier, and most importantly his lymphs have begun to shrink.

Anyway, the point to all this is that my son does not have frickin’ lymphoma! He’s not having a biopsy! He’s not having surgery in the next week or two! This is amazing, wonderful, glorious news and we have to thank all of you for your constant and vigilant prayers. I mean think about it, these prayers not only brought healing to his neck but are going to bring a holistic healing to his entire life. I wasn’t even asking for that…but now feel like I can and must exclaim in solidarity with one person from the Bible who said “Thank you God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ever ask or imagine!”

Maybe I just need a bigger imagination?

 

*Don’t get me wrong, all of us in our house are still struggling with very extremem emotions that swing at any given moment even on a wonderful day like yesterday…but that’s the blog I’ll be writing tomorrow!

Such a Trip…Seriously

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I can’t think of any other phrase except to say “what a trip”!

Even just a few weeks ago I had never pictured myself as a rehab patient (I probably should have…but I didn’t). I know my story is nothing at all like the movie Regarding Henry but it is exactly what I felt like yesterday as I spent my first day in the rehab unit here at the hospital. You know those two bars that rehab patients hold onto as they learn to walk for the first time again…that’s me! What the what? You know those teams of encouraging PT’s and OT’s who are saying nice things, giving them pointers, saying “come on Ryan, one more step…” that’s me! I’m Harrison Ford from the movie! (except that I wasn’t a jerk before hand…and I can talk and read…and…yeah…you get it). It’s just such a trip to realize that I am actually, genuinely, completely learning how to walk again.

I know this post has not been an epic one of powerful words, well written thoughts, or even a cohesive news update…but if you haven’t picked up on it yet, I’m just now coming to grips with the fact that my new (as of right now) reality in life is that I’m a baby learning to walk. Who’d a thought? A few weeks ago I was in pain…but I was walking down Main Street in Disneyland! Shoot, a few days ago I was anticipating surgery and in bad pain, but in 48 hours of time I managed to get down to the pub and even plant some spinach in my garden. Now? Now, I’m giddy to have a strap on pee bag so that I don’t get tangled when I try to use my walker. What. A. Trip.

And yet…my body is doing well. I’m moving more than I should. My pain is less than it should be. I’m full of confidence and energy. I’m in what appears to be an amazing facility. I’m still crying constantly about the support of my friends and family (…yep…just cried again while typing this…), and I can gladly call this home for at least the next 7-10 days.

Here we go!

 

(Just as an FYI that need some more of the details…we’re waiting for positive pathology reports to show up between June 7-10. Once we get those reports we’ll be able to have a more firm understanding of what to do concerning the left over tumor ‘fingers’ intertwined in my spinal cord. Right now the spinal damage being shown includes lack of bowl/bladder function and pretty strong paralysis down my right side from my belly button to my shin…more or less. There are other spots of numbness, tingling, etc. as well but these are the major concerns)

Final Thoughts?

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Some final thoughts prior to bedtime, night before the surgery…

  • There we were, the four of us sitting together on India’s bed this morning trying to discuss the reality of the day or two head of us. Daddy: “Today’s a big day kiddos! Today’s my last day with this tumor and then tomorrow the surgeon is going to take it out!” India: “Yay! Then we can eat it!” Jones: “India, it probably will feel like brain” Daddy: “I think it would taste and feel like a salty olive” Jones: “Dad, all olives are salty” Daddy: “right.”
  • A couple of minutes ago I was laying in bed with Jones trying to be a good dad and “encourage him” concerning tomorrows potential stress. Daddy: “Hey man, you got any questions about the big day tomorrow?” Jones: “Nope. What’s so special about tomorrow?” Daddy: “Well I’m going to get that tumor out of course!” Jones: “What’s so special about that? People have tumors all over the world right now.” Daddy: “That’s so true man. I guess it’s something new for our family, but its pretty normal across the whole world huh?” Jones: “Yeah, people are dying in some parts of the world right now with tumors” Daddy: “Dying? I think lots of people are having their tumors taken out and are being saved right now!” Jones: “What about people with tumors in Africa where there might not be good doctors or adequate medical facilities?” Daddy: “Wow, you’re right man. I guess we should feel really lucky to have such good doctors huh.” Jones: “yeah…” Daddy: “Umm…ok, well…I love you. Any other thoughts or questions?” Jones: “Nope. Can I have another pillow?”
  • I won’t take too much time to report on the overwhelming, amazing, beautiful night that was the prayer time hosted for our family at Compass church this evening. I cried too much. There were too many people. It was beautiful in its depth and simplicity. It felt right, it felt like community, it felt like God, it felt…uhh….I just don’t have words right now. Thank you all so so much. I can’t think of any better way  to enter into tomorrows surgery than with what happened tonight. Maybe I can write more cohesively about this another time. Thank you.
  • Finally…no better way to follow up a night of prayer and a fast starting at midnight with pizza and Cold Stone ice cream.
  • Surgery is scheduled for noon.
  • Oh, and last thing, I’ve been told to repost this one more time…If you’d like to help my fam while I’m locked up in the hospital, here’s what’s been setup:
    • If you would like to provide meals or gift cards please contact Erika Albright on Facebook, email (ealbright2k3@gmail.com), or phone 360-521-4143
    • If you would like to help with jobs that need to be done. From laundry to yard work. Please contact Patty Jacobs-Kunkle on Facebook, email pattykunkle@msn.com, or call her at 360-798-7139
    • If you would like to contribute money to Ryan’s medical bills you can do that at any Columbia Credit Union in Ryan Woods’s name. account # 444289 or through online giving here:http://ow.ly/3yjhL or by sending a check to PO Box 873575 Vancouver, WA 98687 written to “Renovatus” and marked for Ryan Woods

peace.