Samsmom: Life, Joy, Loss and Loving your Mitochondria

Life, Grief, Hope, Joy, Writing it Out and Loving your Mitochondria:

  • What a kick! I joined an hour ago and met up with six friends. If you haven’t done it, I highly recommend it….great way to dabble a little time. My friend Ginger sent me a slinky through Facebook…who knew. With the baby asleep in her room (cross your fingers) the hubbie asleep on the couch and a repeat of the debates, I had a little time.

    I LOST MY WALLET TODAY! Scary! The worst part is that I didn’t even know. I had it in the back pocket of our stroller and it must have fallen out. The mall security called me at home….”Hi, we have your wallet. Would you like to come get it?” I would like to thank the mystery person who picked it up…cash, checkbook and everything and turned it into the Gap. Thank you mystery person.

    Samantha is well and finally pushing about 10 teeth. We took her off her 2:00 of Topamax….wish us luck!

    Hey, find me on Facebook; along with Hilary and Obama. Maybe I’ll put you on my wall 🙂

    Happy Sunday.

    -Heather

  • Happy Holidays! Happy New Year!

    As I’m writing, I have one eye on the Iowa caucus; a year of much needed change. A friend of mine calls me the ‘the most liberal friend she knows’ so I’m sure you can all guess my views. I feel energized by the changes afoot and I’m trying to incorporate this into my life.

    My husband and I got a much needed reprieve during the holidays. We got to go skiing together! (thanks Grandma Judi and Aunt Jen!) It was a cold, blustery day but so great to be outside and up in the mountains. I had my ‘A’ game going until about 1:30 and then my legs gave up…game over. We started home around 3:00 only to be stuck on I-70 with about 1,000 of our soon-to-be closest friends. 2 1/2 hours later we had gone about 5 miles up to Eisenhower tunnel only to hear that the interstate was closed east and west due to high winds, snow and icy roads. We found ourselves wedged between two semi-trucks and a Volvo, all spinning their wheels trying to gain traction and sliding towards us. Bart found a hole between the trucks and maneuvered us through, being one of the last cars to get through for the next 24 hours. Whew!

    Maybe that’s what our 2008 is about; finding different ways through a tough situation, being somewhat tenacious and not being afraid of the big trucks.

    We spent New Year’s Eve with friends. At midnight they opened all the doors to let 2007 out and welcome 2008. When we got home, Bart open our doors and kept them open for about 20 minutes…..brrrrr. He wanted to make sure 2007 was gone for good. Adios. Hello 2008….now shut the door.

    New Year’s left me with a nasty cold and Samantha with cluster seizures. Bart decided he should have left the doors open a little longer. Nah, we’re just getting rid of residual 2007.

    Opening new doors and finding new paths. Welcome 2008.

  • So, I took the seizure counter down. Samantha had two today but that’s not really why I took it down….it’s kind of like counting the runny-nose-free days a kiddo has. Sooner or later that nose will run, so hey, why put that pressure on the sinuses? Samantha continues to do well, get stronger and we’re on our way to sitting up!

    The Today Show did a feature on epilepsy this morning and did a great job. The link is below…
    http://allday.msnbc.msn.com/archive/2007/12/13/513627.aspx. The video is really touching and speaks the truth. Epilepsy effects more people then Cystic Fibrosis, Multiple Sclerosis, Parkinson’s, and Muscular Dystrophy combined, three million people….yet so little is known about it. Twenty years ago the common control was crazy levels of phenobarbital. And we think Ritalin is bad! Anyway, they have come a long way and spots on the Today show can only help. Maybe Matt Lauer can help with a fund raiser…..mmmmm….Matt Lauer.

    So, I’m off my soap box to talk about another issue….

    It’s twelve days to Christmas and I have to laugh at my pre-season thinking. I thought…”I’m now a stay at home mom, I’ll have plenty of time to get everything together” HA!. T’was days before Christmas and not a present in sight….Mom’s hoping to go shopping before Christmas night! The stockings are up, but not with care. Right now I’m scanning the living room to see what I can re-gift. The Schichtel side has been passing around the same box of smoked salmon for about 4 seasons now….what’s the shelf life of a fruit cake?

  • I’m a sucker for a cause; always have been. In high school a group of us piled into my rusty station wagon with the Greenpeace bumper sticker. We headed down to the local Burger King to protest their use of Icelandic cod. Iceland commercially hunted Minke whales….we had our cause.

    “Hold the pickles! Hold the lettuce! Icelandic whaling really upsets us!”

    Now, I always thought the people down at Greenpeace could have come up with a better lyric but no matter. I felt empowered. I was saving the poor little whales from the big, hairy Icelandic fishermen.

    I read later that Iceland is a very environmentally conscious country and whaling was legal and monitored very closely. Hmmm…well then I felt a little silly. So I had a Whopper.

    This was my issue with protesting, there was always another side, I was easily swayed and my causes changed with the wind.

    Twenty years later, I have found my cause; Samantha. She’s as cute and cuddly as a baby seal and heck…if I can’t advocate for my family, who can I get out there for?

    Samantha qualifies for state aid which is a double-edge sword. We find ourselves saying “Great! We qualify!” followed by “Well crap, she’s sick enough that we qualify.”

    With state aid comes paperwork, battles and bureaucracy, more than I ever thought possible and we’re not even in the school system yet! With every election comes budget cuts and reductions in funding and social programs. All of this directly impacts our family and thousands out there. Bring on the signs and picket lines!

    Then there is the human aspect. I advocate to meet other people and hear their stories. Great stories….a man with cerebral palsy who struggles to get every word out proudly telling about his job at Target, a young lady who just got her own apartment and is living on her own, a teenager with Downs Syndrome who recently went to her 3rd prom with the ‘popular kids’ in a limo. Wow! If I ever feel down, sign me up for one of these meetings. I realize that Samantha is so much more than milestones and tests’; she is a person who will grow into her own self.

    The main reason why I advocate so strongly for my daughter is very self-serving. It’s empowering. It makes me feel that I have some sort of control. I cannot control the crazy, rare, genetic condition she has. I can only do so much to control her seizures and sometimes I watch helplessly as the milestones pass. I can however, try to change the type of world that receives Samantha. Whether it be attending a typical kindergarten class, finding gainful, competitive employment later in life, or getting apartment of her own. The things I do now, the ruckus I raise, will help her have a better life. Better cause? Nah, I really can’t think of any.

  • The Schichtel family spent the long weekend at home. Since it was Veteran’s Day, we were hunkered in our bunker! Sorry, still a little punchy and suffering from cabin fever. Samantha was running a low-grade fever, fussy and had nasty ‘goo’ oozing from her ear. All this and she was on antibiotics! Something wasn’t right

    Any condition outside of normal puts us on alert with regards to Samantha. A urinary tract infection put her in the hospital, fevers lead to seizures…we get concerned. After three days of staring at the baby, I made an appointment with Children’s Hospital.

    “I think she’s ok.” My husband said.

    “I need to know she’s ok.”

    I loaded up the car this morning and Samantha and I headed down to Denver (about an hour drive).

    “She looks good this morning.” Our doctor said.

    I listed my concerns and what she had been going through this weekend…sleeping a lot, fussy, high temp. “I just think something’s not right.” I said.

    Our doc ran numerous tests, we were sent down to the lab, even sent up to ear, nose and throat to check her gunky ear.

    Guess what? Nothing is wrong! She’s getting over an ear infection but it’s clearing up nicely. Blood work, urine, everything came back fine and no seizures since Saturday (keep your fingers crossed!)

    Mom radar is still on high alert but it was nice not to be right!

  • People move in and out of your life. You never know when someone will step up and fill a place you never knew was empty. Enter Pete, Kristy and Kayla. Kayla is a beautiful nine-year old with an inquisitive mind and a love for pizza and ice cream. Pete and Kristy are her devoted, committed, intelligent parents.

    Kayla has a crazy metabolic condition that only 300 other people in world have. She has spent so many days at Children’s that the CFO of the hospital sent Pete and Kristy a Christmas card. It was one of those odd moments….. “oh hey, we got a Christmas card from the CFO…crap…they know us so well…we’ve been there so often we’re getting Christmas cards.”

    When Samantha got sick, Pete and Christy embraced our family. What’s even more impressive is that Kayla embraced Samantha.

    “Hi Sam,” Kayla says every time she sees Samantha. “HI SAM!” when Samantha doesn’t respond. Kayla never asks what’s wrong, just accepts Samantha for what she can give.

    Kristy and Kayla came to visit Sam when she was in the hospital in August. Kayla had never visited another child in the hospital. She had been there many times as a sick kiddo but never as a visitor. Kayla wheeled her chair in, proudly donning a bright red balloon for Samantha. “HI SAM!” she said.

    Kristy and Kayla stayed for a while. Doctors did there rounds, nurses came in and checked on Samantha. It never seemed to bother our brave Kayla. Brave Kayla who came back into the place where she had been poked, prodded and very sick in order to see her friend Samantha.

    Christy and Kayla left after an hour or so. I found out later that Kayla started crying when the car left the hospital parking lot.

    “Hey Kayla, what’s wrong?” Christy asked, glancing in the rear view mirror.

    “I’m sad because I get to leave the hospital but Sam doesn’t.”

    Wow. I heard this and I thought about how lucky we are to get to know Kayla and get to know her in way that we never would have had Samantha not been sick.

    We have all left the parking lot feeling sad that we get to go home, out, enjoy the sunshine and Samantha doesn’t. Kayla just had the intelligence to express this….maybe because she’s been there so often, maybe because she just loves Samantha and wanted her to go home too. Regardless, Super Sam is very lucky to have Cool Kayla in her life…we all are.
  • The Blessing Bowl:

    July 14, 2007. Numerically it’s a very good day. 07-14-2007, fourteen is divisible by seven and two times seven equals fourteen. I figure this is a sign of good luck. I’ve been doing this lately; looking at long strings of numbers to see if they could divide into themselves. I’m not sure why. Maybe my brain is thinking of ways to keep itself entertained. Regardless, it’s a good date. I like the number seven. It’s a good prime.

    This day fell on a Saturday. The day that we were going to celebrate my daughter’s first birthday. She doesn’t turn one until the 18th but Saturday’s are easier to get the family together and I liked the numeric’s.

    Samantha’s birthday has been the cause of some anxiety for me. It’s a mixed bag of emotion. I am thrilled that we are celebrating a year of her life but saddened at how hard this year has been for all of us, especially Samantha. We have spent 61 days in the hospital, two flight for life helicopter rides, numerous 911 calls and late night trips in the ambulance. Well, Samantha rode in the helicopter. My husband Bart and I had to follow in our Malibu station wagon, dodging traffic and cursing at slow drivers as we rushed to keep up with the chopper. Helicopters go faster than cars, especially in rush hour traffic.

    How do you celebrate this year? I knew how I didn’t want to celebrate. I didn’t want kids her age running around as a reminder of where she should be in her development; playing with her toys as we watched and hoped Samantha didn’t have another seizure. This may sound bitter but I’m the mom and I knew what I was able to handle. No toddling toddlers.

    We did need to celebrate. But to have a party and pretend like nothing happened this year didn’t seem right either. Samantha had been through hell and back in her first year of life. We needed to commemorate that.

    We kept the party just to family which still turned out to be quite a gathering. I frosted 16 white cupcakes Saturday morning. Well, really 20, my husband ate 4. As I prepared chicken and brats for our barbeque, I felt a sense of peace overcome me. We made it. Our daughter was still here, kicking at her toys on the floor. Our marriage was still intact despite all of those times I was tempted to take off in the Malibu for Mexico. All of those things were worth a celebration.

    To honor Samatha’s first year, I had asked people to bring a trinket, a stone, a poem, something that brought them peace or felt good to them. Samantha didn’t need another toy. Samantha needed good juju. I went upstairs in search of a bowl for her well wishes and noticed my great-grandmother’s sewing box. It was made from pine and had a heavy wooden handle. I imagined my great-grandmother toting it from room to room as she quilted or mended socks, sitting peacefully in the corner. She was a lover of children and stray animals. I knew Grandma Burbank was out there, looking over Samantha. I opened the top and inhaled the musky scent of the past. Thread and yarn were wrapped around tiny sticks to keep them from knotting. There was an old rusty Sucrets box filled with buttons still waiting for a shirt. No, I thought. This is not the right container for Samantha’s trinkets. Too much history.

    I looked around the room and found another antique of Grandma Burbank’s. It was a simple bowl, the color of sand. Hearty, solid and held the test of time, just like my great-grandmother. Perfect. I carried the bowl downstairs and set it on the table.

    I ventured outside to my garden to find my contribution to the blessing bowl. I love my garden. I am continually impressed with the cycle of life perpetuated every spring. I plant tiny seeds in the dirt and they turn into beautiful zucchinis or luscious tomatoes. I found a rock that was smooth all over except for one small side which was jagged and coarse. Perfect, I thought. Samantha’s bumpy beginning…the rest of her life will be smooth. I held it in my hand. It was warm and felt right. I also snipped a bloom from the lily I planted the summer my husband and I were married. The bloom was a buttery yellow with brown spots on the petals. There were three petals, for the three of us in our family.

    I was on a roll. I bounded upstairs and found the small, pink, baby bootie charm I wore religiously when I was pregnant with Samantha. In the bowl. I also found one wooden angel wing. I’m not sure where the rest of the angel went but one wing seemed to do the trick. In the bowl. My final contribution was a wooden puzzle piece painted as a big, pink pig. Samantha is about to go on a high-fat, extremely restrictive diet which we hope will help with her seizures. Piggy belonged in the bowl too.

    I was done. I set the bowl back on the table and went about getting ready for our guests. I smiled to myself as a Natalie Merchant song came on:

    With love, with patience and with faith, she’ll make her way.
    She’ll make her way, hey, hey, hey

    “That’s you, my baby girl.” I said dancing for my daughter on the floor. She happily jabbered back.

    I put Samantha down for her nap promising a wonderful evening all about her if she would just sleep for a couple hours. Amazingly, she closed her eyes and drifted off.

    Flowers showed up from my brother and sister-in-law in St. Louis. I clipped off a sprig of daisies…in the bowl.

    Samantha woke up on her own at precisely 4:00, when the party was going to start. She’s on so many anti-seizure meds that fully waking her up can take about an hour. Yet today she was lucid and playing in her crib; ready for her party. I put her in a blue dress with yellow daisies. I’ve been saving that dress for a year and a half; waiting for her to be big enough, waiting for that first year. The blue brought out her red hair. I placed her tiny tortoise-shell glasses on her nose and laughed to myself. She was absolutely the most precious thing on earth.

    Grandparents, aunts, uncles, cousins, filed in and kissed Samantha. Wine bottles were uncorked, hummus and brie laid out on the table. The mood was festive as everyone toasted to Samantha’s health.

    As the evening progressed and the dinner plates were cleared away, it was time for our blessing bowl ceremony. Samantha was still awake, babbling to her Grandma and seizure free.

    I brought out my great-grandmother’s bowl and set it in front of our family and studied the faces in front of me. I thought of what a long haul it had been for everyone; the sleepless nights, the worried phone calls, the private tears cried away from the hospital, all for our daughter.

    Overwhelmed with gratitude, I cleared my throat and thanked my family for being there. I reached into the bowl and pulled out my blessings for Samantha, the lily from our wedding, the rock from the garden, the baby shoe, the angel wing and the piggy puzzle piece. I also pulled out the daisy from her aunt and uncle.

    The last trinket I presented was a jade necklace from Hong Kong. My sister-in-law Poling, is from China and went home for a visit in May. Her mother gave her the necklace to give to Samantha for good luck. Thirty four years ago Poling’s little brother wore the necklace for good luck, good health and safety during his babyhood. Now it was being passed down to Samantha. The span of people loving and praying for Samantha had traveled thousands of miles.

    I passed the bowl onto my grandmother, Samantha’s great-grandmother. She pulled out a silver bell. The handle was carved in the shape of an angel, “because Samantha is our angel.” When my talkative Grandma gets emotional, she is a lady of little words. She passed the bowl onto one of Samantha’s Grandmas, her Nonnie.

    Nonnie pulled out a perfect sand dollar she found on a California beach. “I chose a sand dollar because it comes from the ocean. The ocean is a beautiful, constant, volatile source of life. The surface can be calm or stormy but we never really see what is going on below. And there is a whole different world below. This reminds me of Samantha; we don’t really know what’s going on underneath the surface. But there is a beautiful world full of life.”

    My aunt Tracy pulled out a small silver heart. “I have carried this heart with me for twenty years. It has brought me good luck all of these years. Samantha, I now hand it onto you.” Tracy had become a great friend since Samantha had been sick; visiting in the hospital, sending cards and notes of encouragement. She is a little superstitious. Tracy’s silver heart was her beating heart . It went in the bowl.

    My sister-in-law Poling went next. She brought a prayer from a Buddhist temple in Hong Kong. It is a prayer for health and longevity. The Chinese characters were printed in red ink on beautiful brown parchment. Poling passed the bowl to her daughters who had made tiny paper balls while in Hong Kong. The balls also had Chinese characters printed in red ink. The girls had also knitted purple and pink bows for Samantha. I pictured them sitting at a table while on vacation in China, knitting bows and making tiny paper balls for their small cousin; presenting their craft to their mother for approval and thinking of how Samantha would like them.

    The bowl was passed to my mother, Grandma Judy who had also chosen shells. The first was a brown and white spiral I had found years ago during a family vacation to Florida. The second was from Tahiti, another beautiful, smooth shell, chosen a thousand miles away years before Samantha was born. My mom and stepdad love the ocean and are avid scuba divers. “The ocean” my mom said, “is a constant source of life. It is where life began. It harbors so many mysteries that we aren’t aware of.”

    My cousin and his wife presented three candles for peace, harmony and health. The bowl now smelled of sandalwood and lavender.

    My dad went last. He had a small stuffed dog dressed in a karate uniform. When you pressed the dog’s stomach it yelled out “HY YA!” and other ‘karate’ sounds. My dad has had this dog for years. It was his kick butt dog. It reminded him of how Samantha fought the doctors and nurses in the hospital and how she continues to fight. HY YA!

    The blessing bowl ceremony was over. The bowl felt alive in my hands; full of love, health and good thoughts.

    Cupcakes were served. As I lit her single candle, I felt giddy. One year of life.

    Samantha’s dad helped her blow out the candle. We fed her frosting and pieces of mushy cake which she smashed between her fingers and toes.

    More wine was poured. The men smoked cigars outside. The women (except for my grandmother who stayed outside with the boys) closed the windows and complained about the smell. Samantha rolled around on the floor, too wound up to sleep.

    The night came to an end and we said good bye to our families. I finally got my tired, over-stimulated daughter to sleep. My husband went to bed. I wandered through the house remembering the night. I took the lily and the daisy out of the bowl and placed them in our big family Bible to be pressed for safe keeping. The Bible was my Grandfather’s who passed away over a decade ago. Its black leather cover holds family trees, obituaries and birth announcements through generations. As I thumbed through the pages I found a red rose, perfectly pressed between the passages. I don’t know the origin but I felt compelled to put it in the bowl. It was my grandfather’s wish, his blessing for Samantha.

    I continued to roam through the sleepy house and then collapsed on the couch with a glass of wine. I sighed, happy to have a quiet moment to myself and reflect on the past year. We have asked so much from our families, friends and people we don’t know. They have spent countless hours in the hospital, brought meals, coffees, contacted other family members, held and loved Samantha, prayed, sent jade pendants from Hong Kong. How do you give that back?

    Gratitude, I thought. I am grateful that I could wander through the house looking for parts and pieces of our life to put in the bowl. Grateful for my daughter’s pink cheeks, for every breath she takes, for a seizure free birthday; that neither my husband nor I decided to take the Malibu to Mexico and leave this life behind. I am grateful for family and friends that could give their silver heart up for the blessing bowl.

    Someday I will repay the world for their acts of kindness to our family. I will make meals for someone else. I will send their family good wishes for good health; and visit the hospital with coffee and fresh brownies. Right now I can only reflect on the joy of the night and be grateful.

  • I’m now on Facebook!

  • What will be great about 2008?

  • Thursday Thoughts

  • 2, 4, 6, 8 Everybody Advocate!

  • Nothing’s Wrong?

  • Super Sam and Cool Kayla

  • The Blessing Bowl

  • I’m now on Facebook!

    What a kick! I joined an hour ago and met up with six friends. If you haven’t done it, I highly recommend it….great way to dabble a little time. My friend Ginger sent me a slinky through Facebook…who knew. With the baby asleep in her room (cross your fingers) the hubbie asleep on the couch…

  • What will be great about 2008?

    Happy Holidays! Happy New Year! As I’m writing, I have one eye on the Iowa caucus; a year of much needed change. A friend of mine calls me the ‘the most liberal friend she knows’ so I’m sure you can all guess my views. I feel energized by the changes afoot and I’m trying to…

  • Thursday Thoughts

    So, I took the seizure counter down. Samantha had two today but that’s not really why I took it down….it’s kind of like counting the runny-nose-free days a kiddo has. Sooner or later that nose will run, so hey, why put that pressure on the sinuses? Samantha continues to do well, get stronger and we’re…

  • 2, 4, 6, 8 Everybody Advocate!

    I’m a sucker for a cause; always have been. In high school a group of us piled into my rusty station wagon with the Greenpeace bumper sticker. We headed down to the local Burger King to protest their use of Icelandic cod. Iceland commercially hunted Minke whales….we had our cause. “Hold the pickles! Hold the…

  • Nothing’s Wrong?

    The Schichtel family spent the long weekend at home. Since it was Veteran’s Day, we were hunkered in our bunker! Sorry, still a little punchy and suffering from cabin fever. Samantha was running a low-grade fever, fussy and had nasty ‘goo’ oozing from her ear. All this and she was on antibiotics! Something wasn’t right…

  • Super Sam and Cool Kayla

    People move in and out of your life. You never know when someone will step up and fill a place you never knew was empty. Enter Pete, Kristy and Kayla. Kayla is a beautiful nine-year old with an inquisitive mind and a love for pizza and ice cream. Pete and Kristy are her devoted, committed,…

  • The Blessing Bowl

    The Blessing Bowl: July 14, 2007. Numerically it’s a very good day. 07-14-2007, fourteen is divisible by seven and two times seven equals fourteen. I figure this is a sign of good luck. I’ve been doing this lately; looking at long strings of numbers to see if they could divide into themselves. I’m not sure…

The Lights of Friday

I love this time of year. The days are cooler, the leaves are beginning to blush, and my calendar notes practices and games. The Phews are playing football. Who would have guessed I’d become so invested in football? Certainly not me. The crack of helmets, the gasps when the wind gets knocked out, the unstated…

My Battle Against Wild Intensity

On Friday, I plopped down on my therapist’s couch. It’s one of my most favorite places and after an eye-opening couple of weeks, I needed a place to process. My recent, abrupt dismissal from my side writing gig left me a bit sideways. While I was proud of how I held my ground, calling things…

Bouncer

I loved this t-shirt. It was circa 1985, Bruce Springsteen and the E Street Band. We had field seats, and the concert was amazing. I was 14 and wore this shirt proudly, along with my 14-year-old smirk and dark eyeliner. Bruce wasn’t my first concert. When I was in 7th grade, my mom got us…

Back to Write. Back to Reality

Yes, this title should be sung with Soul II Soul in mind, and the beat of Back to Life, Back to Reality……Yes, I know this is now firmly stuck in your head for the next 12 hours. You’re Welcome. Side note, did you know Caron Wheeler wrote that song after she had a near-death experience?…

I’m Swimming in the Rain

I have not posted since November 2024. My last post featured a rider on a horse being unceremoniously thrown off as I talked about my terrible day. Looking back at the months later, I would have thought the horse was thinking, ‘HA! Hold my beer.’ I didn’t write in this space for six months because…

The no good, terrible, awful day.

My latest new word is terrible. It rings well.  The ‘T’ is sharp. It is significant without being confrontational, The double r’s can be rolled if needed And the last ‘ble’ leaves room for a long-winded ‘buulllll.’ Say it long…….tttttteerrrrribulllllllllll Say it again: terrible, terrible, terrible. It’s nice, isn’t it? I posted on Tuesday that…