Random Inklings

An urgent request for prayers.

2011-12-02T22:40:00.001-08:00

I don't want to be a downer, but it's time. For many of my blogging friends from MySpace, you are familiar with the cancer battle of my young niece Jordan Davis. She celebrated her 18th birthday in November and the local paper did a story that was published Nov 26 ( No holding back Monticello teens life includes cancer fight ) She is at the end of her battle. The cancer is winning. I ask that you pray for a gentle and pain free passing for her. And for grace and support for her mother and father, sister and brother, and all her friends and family. She has truly been a light of hope in this often dark world... and it's time to say goodbye.

Jordan age 13 - before diagnosis

Jordan age 14

Jordan age 15

First diagnosed with cancer

Starting treatments

Jordan's 16th birthday in hospital

Photo shoot in hospital

Photo Shoot Dec 2009

Prom 2010

Jordan Aug 2010

Rocking the mohawk

Homecoming 2011

Back into treatment

Jordan's Make-a-Wish trip to Greece

She loves horses.


Davis family Feb 2011

Queen for a Day at Ren Festival

Beautiful Queen Jordan

Homecoming 2011

Senior Portraits


Jordan's final photo shoot Oct 2011

Timeless Beauty

Unforgettable

Jordan's final shoot Oct 2011 - Timeless Beauty

Life with cancer being lived

I am going to cut and paste today's Caring Bridge blog entry of my dear sister Tara, Jordan's mother, which she has kept in this 2 year journey. I cannot find words that express things as well as she does today.

Tara's Caring Bridge post...

Another day passes, it has been a very busy week. Jordan did another Paracentsis on Tuesday. I'm fairly sure I updated on Monday. They removed another 5.6 liters of fluid, and replaced some with a protein fluid which made Tuesday night much easier on her. It has been taking forever simply because her blood pressure which has been low anyway was really low. We have started using home health care, not because she really needed it but to start the relationship again. Or that is how we felt about it on Wednesday. What a difference a couple days make. Jenny is a wonderful nurse and has loved Jordan since she started taking care of her back in 2009. Today she came again, Jordan's blood pressure has been in the 60's over 30's range, which is bad. Low even for Jordan. Jenny called Lexi.

I love Lexi, and I want you to know that she has never lied to Jordan or kept anything from her. That has been a choice that we have made as a family. I know that when Jordan got sick in 2009 there were some scary decisions that had to be made and I kept her in the loop and we discussed things and she was allowed even at 15 to make decisions on her care. Dr Neglia has always been honest with her and with us. We always had hope and we were sure we could beat this as a family as long as we had God with us. Paul has a faith regardless of how he shows it. He is scared as am I, but he is also the family "fixer" and on this one he can't do it. He can't "fix" Jordan.

Last week when I went over the scan with Lexi and Dr Neglia was talking to Jordan and I didn't feel really well.. I missed a lot of the scan conversation. So on Tuesday I asked Lexi to go over it again and she offered to show me the scan. I love looking at the scans even though Jordan hates it. I get right in there and can see what Lexi is talking about. she starts at the chest works her way down the body, stopping in the lungs to show me the multiple spots on her lungs "they are still kinda small" but the quanity of spots took my breath away. Honestly took my breath out of my lungs. We moved the scan into her belly space and the omentum. Which in the previous scan showed a "thickening" another discriptive word was speckled. When we passed over the omentum there was no thickening it was a "tumor". Think of the greater omentum like a blanket, folded over the whole belly space, and yes it is a blanket tumor covering her whole belly space. Which is causing the fluid buildup. Then we followed her body down toward her rectum/bladder space and another tumor is at/on/around/in her rectum and is effecting her bladder. When Lexi and I were finished with that I asked her where her T11 is so I could figure out her spine issues, and she said grab yourself around the waist and that is your L5 go up 4,3,2,1 and then starts T12. She then really casually said but the spots that we talked about before are just a few, the whole spine is speckled with spots. They are probably not going to impact her quality of life though. We talked about Jordan's vivid dreams and the fact that she will move around, have complete lucid conversations and then 2 hrs later not know what we talked about. Lexi worries that the cancer has possibly moved into her brain. This is it guys, the fact that this cancer is so agressive and ugly, and that she may die from this is looming closer and closer.

When Jenny called Lexi today we made the decision that Lexi would stop by for a visit. She felt she needed to talk to Jordan. A few weeks ago Jordan did an advance medical directive which in teen speak said.. Jordan if your heart stops do you want me to start it? if you stop breathing do you want a tube down your throat and we breath for you? Jordan's answer was yes as long as you can get me back to a state where I'm gonna recover and won't be on a machine. Another question was where do you want to die.. answer~at home. Today when Lexi came she also brought the tissue donation (tumor donation for study) and we had filled out the cadaver donation paperwork on Tuesday. The part about this whole process that is different from all the other parents that we know going thru this is that their kids were not 18 and could not make medical decisions for themselves, except for Sarah. I didn't understand til now how helpless it feels.

Jordan signed a DNR form today. some may not know what that is, Do Not Resuscitate. Her blood pressure is so low that her body is starting to shut down. Not in a scary way, not in a painful way. She is sleeping more, and moving less, she eats when she wants to, drinks when she can. We can't force her to do anything she doesn't want to do. Her friend, no her big sister Tirzah is here with her husband Adam. They came to see her, to spend time with her. They are in Jordan's bed (well I'm not sure where Adam is) doing her nails. Talking and watching TV/Movies. They will be staying over night with us. We have friends coming up tomorrow for breakfast, my sister Remington in NE is driving up for the weekend tomorrow, my inlaws who left yesterday will be driving up here by Sunday and my mom and sister Corrie will be flying in on Monday.

I asked Lexi, worst case~how long do we have. Her answer was worst case, could be tomorrow. Best case a couple weeks. Her body can't function with blood pressures of 60's over 30's. She is in moderate pain, her back is really stiff, but we got some oral liquid pain meds because Jordan doesn't want to be accessed at all. I'm going to say this in a hopefully kind way.

If you want to see Jordan you need to show up sooner rather than later. If your kids want to see Jordan make a point of showing up. If you need a ride, let me know I will do what ever I need to do to get you here to see Jordan. Time isn't stopping, but our baby is dying. This hurts so much. The sight of her father crying, her brother red faced and Jilly laughing because she doesn't understand anything yet is painful. I believe in miracles, I honestly do and if you pray please pray, if you have faith of anykind add us to your list of prayer/thoughts/feelings/beliefs. We will need the emotional support as we progress on this journey. Jordan is at peace with her decision and Lexi said that sometimes it only takes the family to be okay with her letting go. She is tired, so tired of the fight. She has done an amazing job and I'm so proud of her.

Nvr4gotten and Always Remembered. Love lasts through illness and loss. I will always keep her in my heart and mind she will NvrB4gotten. She is the light of our life, our angel, our baby, our Jordan.

I'm so sorry if I've hurt your feeling by not contacting you personally but we have been dealing with direct family and I'm exhausted. I will try to contact more people tomorrow as my phone recharges and we get settled into the day.

I can't think of a bible verse to quote, but I've never been any good at that. Know that God is here in this house. Filling me at least with comfort, if not taking away my fear completely. Pray for Paul, he will need it the most I think. Letting go of Jordan is going to be very difficult for all of us but mostly for Paul and Nick. I will update as needed. Tomorrow might bring a rebound and a healther Jordan.

Thanks for keeping up with her journey.

In hospital again.

On November 22, 2011, mother and daughter got eternally inked in matching tattoos. The number inside the halo is Jordan's medical ID. Nvr4gotten and Always Remembered. With love.

Jordan's tattoo

Tara's tattoo

Many tears will fall...

Jordan Nicole Davis passed away at half past midnight Minnesota time on December 4, 2011. Her pain and struggle is over. She was held by her mother Tara, and she peacefully slipped away.... As beautiful in passing as she was in life. Peaceful. Calm. Surrounded by love.... RIP, sweet angel, You have earned your wings...

Final hours of Jordan's journey, safely at home in her mother's arms.

Tara's post on Caring Bridge after Jordan's passing.

"This came so much faster than we expected. Jordan's halo now has wings. She earned them at 12:30am Sunday Dec 4, almost one month past her 18 birthday. She will NvrB4gotten and I will always remember her as will most of you who have been blessed with her light.
I think the hardest part is the cold, she looked so pale and she got so cold so fast. She passed in my arms with her Daddy and brother holding her hands. Tirzah and Adam, Linda and John, Gabbie and Jordan's Adam were with us too. We gave her permission to just let go. We love her beyond words, this is the hardest thing we have every had to process. Keep flying baby girl we love you." ~Tara Davis

Invisible Illness

2011-11-21T09:05:00.001-08:00

Do you remember when you were little, and you climbed up in Granny’s lap? "Be careful, darling," she’d say. "Gently, snookums," she’d whisper, as you’d hug her. She would often warn you to use care and be gentle, as her ’Rheumatism was acting up a bit’. We smiled and climbed up anyway. And Granny let us. Why? Because she wanted our love! We didn’t understand what it meant to have arthritis as kids. And we certainly never expected it to affect us, in our perfect little lives, not until we were old like Granny anyway. And Granny’s hands looked gnarly.

Bulging and deformed knuckles are a classic sign of arthritis.

But, not all of us grow up to have those perfect little lives that jive with our perfect little time lines. Often times, we hide our reality, lest our peers, our coworkers, even our family, judge us for ’breaking down’ earlier than they do. ’Invisible Illnesses’ that will rob years from our future, make every day more difficult, and cost untold dollars in treatments. We don’t want to appear weak, or unworthy of our social class places in our community. But the fact is, we are here with you. We are mixed in with you, the perfect. And we are your mothers, your sisters, your bosses, and your children. We are your neighbors, your friends, and your grocery clerks. You just don’t know it. We hide it well. And you fear us, because you could BE us, one day. We don’t want to be shunned, or worse, pitied. We want understanding. Acceptance. Appreciation for what we are capable of.

We live in a time when we are expected to excel. Do the right thing, work hard, and you will reap the rewards. That’s what we are taught from the day we start Kindergarten. We work, pay our taxes, raise our own kids, we love our animals and we hope we make a difference in the world. Our country brags about being at the top of everything (even when we know better) and that seems to be part of the fallacy that causes so much conflict. The reality is, we hide our weaknesses as a nation, hoping others won’t see them. We do it politically, militarily and most sadly, domestically. There is positive strategy in boosting our egos in politic and military realms, but the fact that we turn our backs on the truth of our frailty in our own backyard is shameful.

For the purpose of this blog, I want to focus on physical illnesses that most people can’t see by just looking at the patient. (No, I’m not shunning mental illness, but that’s a completely different blog topic.) Yes, there are the short-term injuries we all endure in life, but I’m talking more than just a self-inflicted ’bum knee’. I’m talking about systemic illness, the kind that affects your every breathing moment, your daily quality of life, and your ability to live pain free. Illnesses like Multiple Sclerosis, Fibromyalgia, Diabetes, Muscular Dystrophy, Crohn’s Disease, Immune System disorders, Heart disease, and other, life-altering diseases. Things we cannot cure, but fight every day to survive. Those illnesses you pray you don’t ever get. Yeah. Those ones.

There are many illnesses that are invisible. I personally can relate to Rheumatoid arthritis, as that is my diagnosis, and has been for over 20 years now. I also have Sjogrens Syndrome, which causes dryness of all mucus membranes (eyes, mouth, etc). I don’t look like it, but on the inside, my body is pretty darned sick. RA is an autoimmune disorder that affects my entire body.

It’s like my own body is attacking itself, a vast sea of mini-pacmen destroying my healthy joints. In order to control it, I have to try to kill my immune system with chemotherapy, which that has it’s own set of symptoms and difficulties.

It’s a constant balancing act, and if you were unaware of my struggles, you may not notice the thinning hair, the utter exhaustion or the lack of appetite. If it unbalances on the flip side of the arthritis, I am prone to cancers. It’s a treatment plan that often feels as though it’s as bad as the illness itself. You might see my swollen joints, but you’d have to look to notice. And I’d have to allow you to see them. I hide it well.

Fingers spread out as wide as possible. The thumb is severely restricted.

Making a fist. See how hard it is to use my hands?

Most of the people who have had contact with me in the last year cannot tell you what my symptoms are, as I have learned to work around them in order to function. I am expected to function, ya know? When people meet me, I avoid a handshake as it is painful. People can’t understand why I don’t have a totally full schedule. I look so damned healthy! There was a time in my life when I was the super woman – houseful of kids, 2-3 jobs at a time, and lots of activities. I’ve had to slow down a little, but I’m finding that isn’t a totally bad thing, per se. Well, I could have a full dance card, if I really wanted to - One day a week. But arthritis is a sneaky little bugger – you cannot predict it. One day, I may be able to hike a forest path for 5 miles, but I most certainly will pay a price for it the next day. Or week. I won’t know until I try. So I don’t make plans ahead. I can’t. But I do try.

I am often judged unfairly when I am in public. One of the most common biases raises it’s head when I drive to the grocery store. I have a little blue dangly for my car’s rear view mirror - a disabled parking pass - which I do not abuse on days when I feel fairly good and strong. I use it only when I really need to. Yes, I am the girl who parks in the slot with the little blue wheelchair signs. I get out, but I appear healthy as I climb from the car. I am the one you rant at. And I see your sneers. I hear your rude comments. I know what you are thinking - I remember the days when I was perfect too. But you have no idea how much of a difference my little blue placard changes my life. If you compare my gait as I return to the car, you will see a different girl. That little spiel around the store has made my foot arch dislocate with each step.

That bulge by my baby toe is my bones jutting outward.
Yes, it hurts with each step.

If it’s a big store, my feet can almost go numb from such intense pain. But because of saving a few steps, I will have enough energy to spend an evening with my son, watching a movie with my feet up. I can stand in the kitchen and cook a meal for us. By parking closer, and using a grocery cart as a walker, I have a better life with my son. (You think I really need the cart to just grab a loaf of bread and a gallon of milk? I bet you had no idea of that little trick either, right?) To be a better mom - THAT is what is important to me. That is why I tolerate your glares and remarks.

Next time you think about judging someone parking in a handicapped spot, think about the fact that they may have one of these invisible illnesses.

One common trait is severe fatigue.

Most of the illnesses that are invisible have one major symptom in common - fatigue. There is usually chronic pain involved and pain is extremely draining. I personally do not take any pain medications, however I am getting to the point where I need to consider it. I use humor as my drug of choice for the most part, as those of you who know me can guess. I live to laugh. When the laughter doesn’t seem to dampen it to at least a five on a 1 to 10 scale, it’s time to get help. When the laughter ends, I suspect I will too. Until then, keep those happy blogs coming!

Special thanks to Ang for requesting this blog.

God's Favorite Color

2011-11-10T13:08:00.001-08:00

It is Special Education week & Autism & ADHD Awareness month and I ran across this writing from nearly a decade ago. Theo is now 25 years old, living on his own in Boise, Idaho. After graduating from North Eugene High School with honors, he went on to be a lead singer at Boise Bible College, with a full ride scholarship for his voice (the kid can SING!). He works full time for Jackson's and continues to sing. Now if we can just talk him into moving closer to home!

God’s Favorite Color

Childrenfollow him with wide-eyed amusement. Adults scowl in first impression distrust.He is noticed in a crowd, standing out with his shockingly bold blue hair. Hisappearance is the first characteristic people notice about him, but it is hisheart that draws them close. He is a miracle child. A gift from God. From themoment of his conception, life has been his challenge: one that he has enduredand successfully faced with the love of God and strength of understandingbeyond his years.

Theo wasthe fourth child in a rocky, violent marriage. It was a difficult pregnancy,complicated by maternal high blood pressure. During delivery, his umbilicalcord wrapped tightly around his neck and strangled him. He was barely alivenearly five minutes after birth, when his father took a handful of cold waterfrom the hospital sink to baptize him, should he not survive. This small act ofblessing saved his life. The cold water shocked his tiny body into breathinghis first life-giving breath. Although it would be several days of intensivecare in the NICU, he survived.

Theo’s first year of life wasdifficult. He screamed every waking moment. He was allergic to milk of allkinds, including cow, goat, soy, and even breast milk. By age one, he was ableto tolerate milk that had the lactose removed. Slow to develop, he did notfollow the normal milestones of growth. He didn’t roll over until nearly 9months old, didn’t walk until nearly 2 ½ years old, and didn’t speak untilafter he was three years old. When he did begin to talk, he spoke in a languageonly his oldest sister could understand. The doctors explained that there hadprobably been a brain injury from the lack of oxygen at birth, and that thischild would need special care for the rest of his life. Devastated by the news,but with unyielding faith in God, the family encouraged his talents andadvocated for his success.

Small for his age, Theo lived in aworld that didn’t include others. He was an artist, evident before he couldspeak. He would sit for hours drawing, unaware of the chaos occurring aroundhim in our household. He shunned physical contact and rarely spoke, except todetail the story lines of the cartoons he was drawing. For many years, heattended speech therapy. The day he came home and could say the word ‘parallel’was a day for rejoicing. Theo had found communication, finally.

During his ninth year, he beganhaving grand mal seizures. Unable to control them medically, the seizuresimpacted his life, both physically and psychologically. Unpredictable, theyoccurred at school, or while climbing a tree – usually in very dangerousmoments. The bruising that occurred from his falls was minimal in comparison tothe shame he felt. Other children were merciless in their teasing of him. Hewas shunned, an outcast by his peers, at a time when self-esteem was justbeginning. For several years, he dealt with seizures as an every day part oflife, until he finally outgrew the grand mals as he reached puberty. The seizuredisorder also interrupted his educational success. Having to endure absentseizures, or staring seizures, he would miss parts of each lesson in the publicschool classrooms. Instead of banishing him to special education classes, theschool allowed him to attend a school geared for medical problems, CreativeMinds. The ratio of teacher to student was one-to-four, and Theo thrived withthe undivided attention. Still socially inept, he was able to focus onlearning. Like a computer memory system, Theo has incredible skill atremembering information. Part of his disability has been in organizing all hesees, hears and learns. And he is oversensitive to outside distractions. Henotices the classroom bustle, the trains passing a mile away, the ticking ofthe clock, the fantasy thoughts of adolescence. But he cannot find a filesystem in his brain to prioritize the information. At times, his frustrationreleases in violent outbursts. At other times, he simply shuts down into hisworld of being alone. Amazingly, God has given him yet another gift: the giftto understand it all.

He knows he is challenged by life,yet he faces it head on. Unable to read other people’s emotions, he has learnedthe social skills we take for granted; knowing how close to stand to another, howlong to look into their face, and the proper intonation of his words. Sometimeshe forgets, but his natural ability to endear people usually overcomes anyadversity that may surface. He is a creative individual. His style is all hisown. The day he dyed his hair blue, I realized that he actually relished inbeing different. Most people would consider him a nerd, or a dork. Yet hisuniqueness is what draws people to him. He can infiltrate any group andseemingly fit in. The fact that he has learned this skill is remarkable,knowing where he started in life.

An awkward, clumsy child, he wasnever able to interact with his peers physically. Having always had sportsavailable to him, it was his choice to attempt to play soccer and tee-ball, buthe never really felt comfortable. Then he found the skateboard. His grace andbalance is incredible. Known as a freestylist, he has become almost legendaryon the local skateboarders park circuit. He will often lose track of time,spending hours perfecting a special move on his board, or teaching a peer tosucceed in a board trick. He teaches through positive reinforcement, havinglearned it in his own struggles. When I overhear the other kids talking aboutthe awesome tricks he accomplishes, and his willingness to teach others, I seethat God has always had a special plan for Theo. He has a knack for reachingpeople, for teaching people, for touching people’s lives. He has the patienceof Job, the diligence of Moses and the intelligence of all the disciples rolledinto one. This quirky little Einstein, the boy whose eccentricities at timesput him into harms way, has the brain of a genius. Yet his goals are simple inlife. He wants to be a youth minister, a mentor in life, a teacher of truths.And I know he will succeed, that God’s plan has shown itself to the world. Theblue haired boy will make a difference. He already has.

Watching Theo interact with othersgives me great satisfaction. It’s as though I awoke one day and saw a totallydifferent child than the one they handed me in the delivery room. This is notthe handicapped child I was promised. He may not be following the societalrules as we know them, but he has obtained the purest form of understandingthat many of us only dream of. He has always understood the teachings ofChrist, an unwavering belief that is exhibited in his every day living. The boywho couldn’t communicate has also found his voice. Whether unleashed in choir,or belting out hymns in the shower, Theo has the voice of an angel. Clear andresonate, the lyrics that escape his heart have the knowledge of truth. Sharinghis vocal gift is a talent that gives him joy. Honest and refreshing gullible,his sense of humor belies his intelligence and compassion.

Theo is fascinated with the youngchildren who follow him, asking him if he knows he has blue hair. He is alwaysquick to smile, and kneel to their level to talk. The children want to touchthis young man who shunned physical contact. Recently, Theo was walking in themall. A shy, red haired boy of about 6 stared at him with the familiar smile.Before the boy could utter the often-heard questions about his blue hair, Theospoke to him. “You have red hair!” exclaimed Theo. The boy smiled broadly. Theogave him the ‘thumbs-up’ sign, “Cool!” Yes, the blue haired boy has a gift.Sometimes God’s gifts just happen to come wrapped in the shockingly bold colorof blue.

"He shall not be grounded to this world"

2011-07-18T22:29:00.000-07:00

Some may know the story of Dexter's life. Heaven knows I tell parts of it often! Most people do not know just how special he is. Yes, I am biased, as his mother. But if you ever meet him, you will understand why. This blog is just a small sampling of why he makes my life better, and in turn, touches others too. This boy of mine, who was not expected to walk, much less run, has found a calling by playing the rough and tumble sport of American Football. But lets start way back, early in his life... at the beginning.

Inside the family cybercafe, 1997.

While I carried this last male child of mine into the final days of my pregnancy (he is the 5th child in the family), a mystical traveler came through our family cafe. He was a dreadlock-haired black man, musty smelling, dressed in layers of batik cloth and carrying a long, crooked walking stick embedded with stones and woven with leather strips. He was hungry and asked if he could paint my cafe windows for a meal, and I agreed to the barter - a very fair trade, as his work was quite charming - children frolicking on a grassy hillside, and you could almost hear their laughter as he brushed the strokes of paint on the glass. He then came up close to me, apologizing for intruding into my private space, asking if he could 'step inside my aura', that it was a magnificent power drawing him near, and he would tell me the wonders he could see about my unborn child. I was baffled at first, entirely skeptical, leery of the next scam coming my way. My mind works with facts and I want to analyze the world. But he was adamant, so I agreed as a way to humor him.

He started by telling me of the many bright colors this child held around me (guardian angels, I would later be told), and I wish now that I'd had a tape player to record this man's words. He knew this child would be 'special' and that his time here would touch lives. He told me he was of the old world and that he had lessons for many, and his presence would change people's lives. He explained to me to never fear asking for help in raising this child, that he was a child of many who would understand him. He never asked for anything in return, and said a silent blessing as he held his hands upon my full, round belly as the child inside me kicked against his hands. The words that he spoke as he stepped away was that this child I carried was "not grounded to this world", that his feet would not touch the earth as others do, and that he had chosen me to be his mother.

What this mystic could not have known is that this baby kicking my belly from the inside, would be born crippled by severe bilateral clubbed feet.

Dex's feet looked like this when he was born.

I pooh-poohed the notions this man had shared, forgot 90% of his words even. After all, this stranger didn't know anything about me, or my child. I forgot about his words... For a while. Then things started happening that I cannot explain. Life was hard for our family, but Dexter was the one light that held it all together. He came to us, undoubtedly, at a time when we needed him most.

Dexter, always making life joyful.

Dexter started casting at age 5 days.

When Dexter was born, his struggles were many. Initially while in utero, they believed his right and left brain lobes were not connected (the ultra-sound had shown a missing corpus collosum). This anomaly would be devastating for a child. His MRI after birth showed that his brain lobes were indeed connected, but that his brain was abnormally large - 1/3 larger than normal. But they had no explanation. We joked that the kid just had extra RAM. The doctors focused more on his malformed feet. His legs were put into the tiniest of plaster casts when he was 5 days old. Each week, he was recasted as he grew. Many hours weekly spent massaging and stretching tendons, manipulating those feet into the position so that he may one day walk.... and he did! When those feet touched the ground, that lil guy with the oversized head was running! And he has never stopped!

Dexter's first snow experience.

As time passed, Dexter was leery about getting involved in team sports, mostly since his feet would ache so terribly after any activity. He became involved in more educational type endeavors like Chess Club and striving to be the 'top' student in his class - which was a goal easily reached. He was every mother's dream, never a problem in discipline, obedient and loving. (Maybe this is when I should knock on wood?) When he was 8 years old, Dexter would be hit with yet another medical crisis. He was diagnosed with Type 1 Diabetes after hospitalization for Ketoacidosis. Insulin dependent diabetes is about the cruelest disease a young child can be handed, but this boy saw it differently. He chose to see it as a special gift (I know, what 8 year old does that??? This one!) He one time asked "Why me?" and then answered his own question. "Because I am special and can handle it better than any of my friends could," he said. His view of the world has always fascinated me. He has never felt he was a burden. He has never let anyone tell him he couldn't do something. But he seemed to have a mountain of his own to climb when it came to sports.

But then he found football.

Casey Matthews

Dexter never saw a football game, except on tv, before he played in his first one, suited up in pads and cleats, wearing his Jr High uniform and his XL helmet. He has still never seen a 'real game'. But he is a coaches dream - fast learner, strong, dependable, and like a clean slate, ready for the right training. He plays both offensive running back and defensive linebacker. He plays linebacker a lot like Casey Matthews, of recent Ducks fame (and just drafted to the Eagles). It's purely coincidence that he looks a lot like him too. Someday, he hopes to meet him. He lit the fire in Dexter's belly for football.

Jordan Kent with Alex and Dexter

On July 4th, 2011, Dexter went to bed, but had trouble sleeping. It wasn't because it was the Independence Day holiday with firecrackers and bbq smoke still wafting in the night air. It's because on July 5th, he was going to be testing himself like never before. He was anxious. And excited. And his sleep was fitful. He knew that his body would be his biggest nemesis. Would it fail him when he needed it most? Diabetes is a challenge to control in the best of times, especially during puberty, putting him through this kind of challenge would be testing a journey yet taken. And his feet that don't fit into shoes comfortably... would they handle the stress? He had more on his mind than other High School athletes that night. I woke him from his 'nest' of bedding as the sun came over the horizon, and he was up and dressed faster than most days. This was the day he was attending the first day of skill training with Jordan Kent's Edge Combines.

Dexter attended the Eugene camp.

We didn't have any idea what a 'combine' was, really. But we knew it was going to be hard work, and that Dexter could glean some excellent training from a former Duck running back that went on to play for the Seahawks and Rams. Jordan Kent is more than just a coach. He is an amazing mentor. He not only teaches skills on the field, but his lessons go beyond the turf into the real lives of these young men. He builds the confidence of each participant, yet gives them the drive to succeed beyond their wildest dreams! Dex had a blast the first day, pushing his own limits, even tho it was beyond his own imagination. The running, ball handling and play training was intense. It was the hottest day of the year too, reaching into the high 80s. We managed his blood sugars and he had no problems with going low or missing any of the schedule. Dexter, in his hand-me-down cleats, fought hard to give it his all. (When I had told him he needed to give 100% in this, he said, "Mom, I always give 110%!" And indeed he does, of course.) The adrenalin was pumping and his excitement was high as we left the field the first day, and he looked forward to the next morning's training. As we climbed out of the car going into the house he was limping. As we removed his cleats, and his sweat laden socks, we discovered a three inch long open blister on the ball of his foot. We soaked it and bandaged it, he took a pain reliever, and then he quickly fell asleep from sheer exhaustion.

Jordan Kent teaching stretches at the Edge Combine

The next morning, Dexter was eager, but in pain. We wrapped his foot, and borrowed another pair of cleats from a teammate, a better fitting pair. He headed out onto the astroturf and had a hard workout. About half way into the day, he stumbled over to me, and sat down, near tears. He was ready to give up, the pain was just too intense. One of the cleat pegs was directly under the blister, which by now was oozing and the bandage was slipping. I let him sit for a while on the sidelines, and I jerry-rigged a bandage with a cutout area that would take all the pressure off of the wound and put it onto the surrounding areas. As we were dealing with that, his blood sugars dropped out. Stress will exasperate the natural drop from exercise, and Dex was clearly in added stress from the pain, heat and activity. After giving him all the sugars we had packed, and still not getting his numbers up, I ran to get more. After about half an hour of pumping him full of sugar, he was starting to feel better, albeit not much. The nausea is often harder to stomach than the other symptoms, especially in the heat on the field. Dex was about to throw the towel in, and had said, he'd rather just go on home... defeat was at his door, knocking... That's when Jordan Kent came by and simply said "Dexter, are you doing ok?" Genuinely concerned, he hit the right heartstring in Dexter's drive to be the first football player with both clubbed feet and diabetes. He stood up and said "Yeah, just went low for a bit, but I'm doing better". He laced up his borrowed cleats, wiped his sweaty brow and headed out onto the field. I don't think Jordan ever knew about the humongous blister that Dex was experiencing.

Dexter, day 2 of running back skill training.

He pushed thru his skill testing, even tho he was physically drained and in pain. And he did damned good! His scores were absolutely competitive in the best of circumstances! This kid, who I was told was not grounded in this world, may never walk or play sports, especially football, found the strength and perserverence to not only finish a pro-level football combine, but excel at it. And this is just his freshman year of high school!

40 yd dash - 5.45 sec

The boy can RUN!

And JUMP!

Dex's vertical jump is 27".

Pretty amazing for a 190 lb kid with clubbed feet and a blister!

Dex cannot wait for next year's Edge Combines! He is taking the skills he learns back to his team, and passing on the teaching and life skills he learned in two hot days of July, spent with a phenomenal man, Jordan Kent. I highly recommend this new kind of skill and esteem building camp to all football athletes. Edge Combines, High School level skill testing camps by Jordan Kent.

For now... this week. Dexter is being the little kid again. He is at Gales Creek Diabetes Camp. Feeling like a 'normal' fourteen year old. But somehow, I don't think Dexter will ever be considered 'Normal'. He is extraordinary. "He shall not be grounded to this world."

And to the angel who made it all possible for Dexter to attend,

you know who you are...

A very special and heartfelt

Thank you.

Angelwings - 10 years later

2011-05-18T12:37:00.000-07:00

It's hard to believe that it's been a decade since 'that day'. In one devastating moment, our lives changed. Ten Years ago, a beautiful little girl, named Kennedy Lyons, reached out to her angels, and they swept her into the heavens. She was my son Dexter's best friend. Her passing affected our view of life, and we learned a true appreciation for the small things. My son, in his own struggles, taught me lessons about life and death, and acceptance that there are not always answers to the hard questions. Together, we've grown. And never forgotten Kennedy in our daily lives, nor the impact she's had on our every thought.

RIP, sweetness. You are missed.

In tribute, I rededicate this essay to her memory.

Warning: bring tissues.

Angelwings

“Oh, my God, NO!!!”

I stopped dead in my tracks, not wanting to venture any nearer, fearing what I would find. Initially, my mind would not, could not, comprehend the truth of what I was seeing. Then the wave of nausea hit me. I stood like the other neighbors, in horror, hands to my face as I repeated my words, “No, no, no!” My four-year-old son Dexter was at my side, a look of confusion on his face. I scooped him up and held him close, not knowing what to say or do. Only moments before, our lives had some sense of security, and now it was gone.

It was a beautiful, sunny May afternoon, in Eugene, Oregon. The neighborhood kids were riding scooters and bicycles up and down the sidewalks when a gentle knock on the door interrupted me from my chores. I opened the door to be greeted by smiling six-year-old Kennedy, balancing her pink and white bicycle with one hand, clutching a stuffed puppy, her constant companion, in the other. Her wispy blond hair stuck out from beneath her bike helmet, which sat cockeyed on her head.

“Can Dexter ride bikes?” she asked.

Dexter, being a rambunctious and adventurous child, would occasionally escape from my surveillance, and I feared for his safety. I didn’t feel like supervising today, there were too many chores to finish. “Not today,” I said.

“Ok,” she said with a smile. I watched her straddle her bike and precariously start pedaling down the sidewalk toward her house. I climbed back up the stairs to put the clean sheets on the beds.

As I straightened the quilt, I heard emergency sirens, which often interrupted our day. Such was the inconvenience of living near a fire station. There was an eerie shrillness this time that urged me to look out my upstairs bedroom window onto the narrow street below. Lights flashed near the end of the street. Probably just another domestic dispute, I thought. Living in crowded low-income housing tended to thrust that sort of violence into life. As I opened the window to get a better view, I heard a thunderous knock on my front door. It was insistent, even desperate.

I dashed down the stairs and opened the door. There on my porch stood a small girl of about six, her eyes large on the canvas of her ashen face. Tears streamed down her dirty cheeks, leaving white streaks as she sobbed, begging me to come quickly and help. I ran after her in my bare feet, my stomach churning. The normally bustling street seemed to be held hostage by eerie silence. A sense of shock was spreading across the neighborhood much like the dandelions had spread from yard to yard. I was aware of people standing in their driveways, horror painted on their faces. There in the middle of the street was a large, brown UPS truck. Under the front axle was the familiar shape of a pink and white bicycle.

Kennedy died instantly on a beautiful, sunny afternoon. Her funeral was filled with wide-eyed children trying to understand what had happened. How could we as parents explain this horrible event to our children when we did not comprehend how such things could happen ourselves? How do we reconcile the unbearable grief?

Several days after the funeral, I watched Dexter seemingly talking to himself. As I listened closer, I realized he was talking to Kennedy, and he was actually pausing, as if listening to a response. Daring not to intrude, I stood silently in awe, as he talked about the drawings he and Kennedy had made the day before she died and were later put inside her casket. He promised to find purple balloons for her, like the ones that had been at her funeral. He turned to where he could see me listening, and without flinching said, “Mom, Kennedy wants me to give her purple balloons, okay?”

“Sure,” I answered.

“Can we go buy them now?” he asked.

Again, I said, “Sure.”

We bought two large purple helium balloons. As we walked from the store to the car, Dexter stopped and asked me, “Can I give them to Kennedy now?” I handed him the balloons and he looked up into the sunny blue sky, releasing the strings from his chubby fist. We stood there in the store parking lot watching them float upward toward the heavens until they disappeared. I looked with weepy eyes down into my young sons face as it beamed with the biggest smile I’d ever seen. Noticing my tears, he grasped my hand and pulled me down to his level, embracing me in a hug.

He whispered into my ear, “It’s okay, Mom. She caught them in her wings.”

In honor of Kennedy,

tell someone special

"I love you"

today.

My friend Joe

2010-12-29T15:20:00.000-08:00

Waking to the sound of the insistent alarm clock buzzer, the aroma of freshly brewing coffee arouses my senses. Morning has arrived. I slowly reach over and turn the alarm to snooze, but the smell permeating the house keeps me from falling back to sleep. I drowsily swing my legs from beneath the warm covers and feel the crisp morning air on my bare skin. The sun has begun to break the horizon, and the whispers of daylight glow from the window. I reach over to turn the alarm clock off and wander downstairs to meet my faithful friend, Joe.

Coffee. Java. A cup of Joe. The aroma is distinct and familiar. As long as I can remember, my daily ritual has begun with hot, steaming Joe. As a young child, my mother would add hot coffee to my milk bottles to warm them. Later, I would learn to carefully pour the hot liquid into my own cup, measuring sugar from a teaspoon and splashing milk into the cup until it reached the perfect shade of creamy golden brown. With filled cup in hand, newspaper spread across my lap, I greet the morning from the porch as the sun rises. My dependable friend, a bottomless cup of intoxicating Joe, is nearby for the remainder of the day.

As technology has advanced, my enjoyment of coffee-making has grown. A burly percolator was the appliance of convenience when I began my friendship with muddy Joe. Now gracing my kitchen counter is a sleek Mr. Coffee automatic drip machine, with an auto-start feature that brews before I wake. On occasion, I pull out a brawny espresso machine and make a concentrated version of my robust friend, using exotic coffee beans I have freshly ground in an electric grinder. An electric can opener, making the opening of a can of commercial coffee a true act of pleasure, has replaced my macho hand-crank opener. I listen for the familiar pop as the blade cuts into the steel rim of the can, releasing the hiss of the pressure seal. My nostrils flare with the anticipation of the aroma of Joe. As the scent engulfs me, I feel euphoric and I am reassured by the knowledge that my friend is in the house. Life with Joe has become more comfortable and carefree, as the years have passed.

As the sun sets in the west each day, my desire for Joe wanes. Our relationship is a daytime affair that rarely breaks into the dusky light. I prepare for the next day by carefully decanting water into the sultry coffee maker, placing a fresh paper filter into the drip basket. I enjoy one last moment with my friend as I carefully scoop the dark brown flecks from the can into the filter. One last embrace by the strong scent of finely ground coffee accompanies me to bed as I drift off to sleep, waiting for the moment when the aroma of freshly brewed Joe wakens me as I hit the snooze button on the insistent alarm clock. The cycle begins again and I realize that Joe is more than just my friend. Joe is my first love.

Hatching the next generation of blog

2010-11-21T11:08:00.000-08:00

So it's been 9 months since I stuck this blog up to 'hold mark'. I had good intentions back then, to actually get into the habit of tapping out a few notes. Major fail. But then, like everything good in life, it usually takes about 9 months, right? At least, I think MY favorite packages took that long!

For all my 'old friends' from MySpace blogging, "Hey! Good to see you again!" It's been a long time, but friendships cross timelines and we can pick up right where we left off.

And special greetings to those who I've yet to met. I'm a wee bit different than the average gal, and I admit it. I know I'm weird in a kewl way, so just embrace me (hey, watch where ya put that hand!)

I little bio for starters: I'm now 51 years old. (What the hell happened?! I'm thinking someone fast-forwarded the aging clock on me!) I've been a single mother to five offspring, only one left in the nest, but he keeps me busier than the other four did all together! I blog often about him, so you'll meet him. And yeah, I am biased, but once you get to know him, you will be too! I also have four grandchildren thanks to my oldest daughter (yes, she got the fertility genes too!) I have had a very interesting life, and many of my writings come from those experiences. I am slowing down a bit in life now, as my battle with Rheumatoid arthritis has taken it's toll on me, and forced me into early retirement and medical poverty. (Which isn't the end of the world, I'm learning. Sitting out on the lake in low income housing, watching the wildlife in beautiful Oregon isn't exactly Hell on earth!)

I haven't posted a blog over on MS for a long time. Hell, I haven't even logged in over there in so long, I may not even remember my password... I hear things have recently changed, so I probably will move the best of the blogs from there over here for safe-keeping. If you've read them before, I hope you don't mind. If you haven't, you'll get to see those random inklings of days gone by.

For now, I'm going to try to get at least one blog a week penned... catching up on the insanity I call life isn't always the easiest thing for me to put at the top of my list. Feel free to come poke me often to motivate me. I've gotten quite lazy in my old age ;o)

I may never figure out all the gizmos in formatting on this blog site or how to link to blogs, so if you have a blog up that you want me to add to my favorites, please, post a comment with a link! Reading blogs motivates me to write even more!

New things intimidate me.

2010-02-28T12:51:00.000-08:00

So here I am.

Finally.

I was blogging on MySpace as Sandi's Random Inklings. But they kept changing the format on me and I ended up losing interest. Not that I didn't have things to say, cuz I did. But I just wasn't having fun. There were a few folks that had infiltrated my profile, and I ended up having a couple blogs deleted (important ones too!) so I stopped blogging. I don't like being censored. But I also don't like the drama bloggers who would take my simple comments and twist them to drastically different meanings and then rant on their own blogs about something they THOUGHT I said... whatever. I'm done with Junior High drama (except when I blab on it, heh!)

I'll get back into this blogging again. Let me make it a habit and I'll be back full force again. For now, just this lil baby step of starting a blog is a big enough change. I'm not sure where I want this one to go, so for now, just suffice to know... I'll Be Back!

Now, to figure out how to use the editing bar....