Hubby was gone last week on a business trip. As any parent of young children, sometimes you gotta spice things up. I decided we needed a lovely dinner for two, little wine, little music, little candle light to celebrate his return.

That’s right my friends…spicy!

Friday afternoon- crab legs are on sale…mmmmmmm crab legs.. Chocolate eclairs are on sale! Wine…well there is always room for wine. Romantic dinner shopping is done.

4:00- Magazines, newspapers, Samantha’s toys, clothes and untidy medical equipment are put away. Candles, jazz and wine glasses are set out.

5:00- Flight from New York is delayed

5:30- Delayed even later….crab legs are put back in the frig…wine and eclairs remain on the counter.

6:00- Flight has finally left…two hours delayed

7:00- Leftover pizza…crab legs will wait until tomorrow.

8:00- Samantha in bed….I’m bored. TBS is showing Coyote Ugly

8:05- Coyote Ugly is an awful movie

8:30- Bart’s plane hasn’t landed…three eclairs have been consumed. I pour a glass of wine, take a bath and paint my toenails

9:00- Deciding that Bart will be home sometime tonight, I search my closet for some cute pre-wedding, little Victoria Secret outfit.

9:30- I’m cold….it’s 27 degrees outside. I accessorize my little outfit by donning a pair of thick fleece socks.

10:00- I cuddle up on the couch with the down comforter and the nightly news

10:02- I have a conclusion…..lacy outfits are not meant to be worn for long periods of time. Lace is scratchy, itchy and really not warm at all. The only comfortable part of my body is my feet…which are wearing fleece.

10:05- I change into my flannel pj’s…the ones with the penguins playing hockey. If I know one thing in this world, I know this……there is nothing sexier than pink, flannel penguins playing hockey. Unless you happen to have a full length flannel granny gown.

10:06- I make a note to add a full length flannel granny gown to my Christmas list

10:11- zzzzzzzzzzzzz……..

11:00- Braving icy roads, high winds and delayed planes….hubby has returned… returned to his drooling, penguin clad wife, snoring on the couch….

That’s right….I’m a delicate flower….

It’s something I deal with on a daily basis…being the mom of Lil’ Miss. It’s a feeling that has many facets. An emotion I bring out every once in a while. An emotion so powerful it can literally consume you…an emotion that is divided into other emotions because it is so complex….

Grief……

……it seems to be in the water lately.

The on-line mitochondrial community has lost a couple kiddos in the last month. My local special needs community has lost two children. I attended a ladies’ night based on grief and today my blogging community is dealing with loss and sickness.

In the words of Charlie Brown….good grief….

There seems to be a lot of questioning the universe. Why us? Why not us? Why her? Why him?

Our lives are based on what is reasonable and common sense;
Truth is apt to be neither.
Christmas Humphreys

You can’t handle the truth! Jack Nicholson

We can’t handle the truth, can we? Because if we dealt with the nastiness in life every minute of every day we would wear our grief like a shroud. I have encountered these shrouded grievers and it’s not a fun way to live. Grief in copious amounts tends to ooze; like a nasty septic wound..…draining life from us.

We still have to laugh, we still have to play, we still have to live….life carries on…

….and on

….and on….

Books on grief crack me up. It’s such a personal, intimate experience…grieving. We all have our own timeline based on our own relationships and our own personality. There is no guideline, there is no standard.

My personal Grief is a little Imp that shows up from time to time. I’ll be in my car, driving along listening to music and I’ll catch Grief in the corner of my eye.

“Hey Heather.”

“Aww crap, what are you doing here?”

“It’s been a while. I thought I would stop in for a visit.”

“Well, make sure you fasten your seatbelt and be quiet. Samantha’s sleeping and I don’t want you to wake her up.”

“Can I change the station?”

“No.”

“Can I play with the window?”

“No, you can just come along for the ride.”

Sometimes Grief shows up at a party…..drinks my wine, eats my last bite of fudgy dessert. It’s an annoyance really but since Grief is not a constant life guest, I have learned to tolerate the time we spend together. Sometimes we even enjoy an introspective moment of two.

After Grief has left, I always seem to enjoy the flowers a little more, the sunset and of course the time I spend with Samantha.

Grief will visit, it’s part of raising Samantha, it’s part of losing Jack. It’s part of vision I had for my life that will not come to fruition. But Grief knows he is not allowed to stay.

We can’t have a permanent impy, uninvited, grieveous house guest…we don’t have the room…not in our lives, not in my heart…life is too short and dispite the bad things that can happen….life is too sweet.

Every evening…..

After Samantha has been cath’d, changed into her pj’s, the oxygen turned on, the meds delivered, her tube site cleaned, formula prepared and the feeding pump primed and ready for the night….

…..her Daddy leans down, kisses her head and says “Good night Samantha, keep fighting the good fight.”

This is part of our routine….just as important as oxygen, just as vital as seizure meds….keep fighting the good fight.

Sometimes (not often but sometimes!) he will forget and just kiss her head. “You have to tell her,” I’ll say. “She can’t go to bed until you tell her.” He will then give her double kiss and remind of her nightly task. Between you and me, I think he forgets on purpose just to kiss her cute little forehead again.

Yep….just as important as oxygen.

I’m not sure if it’s my aging mind, lack of sleep, PTSD or a combination of the three but sometimes the filter between my head and mouth does not work quite so well.

This can be problematic.

Since we spend SO much time at Children’s, I have been asked to sit on a couple boards; giving my opinion from a parents point of view. This is very helpful for all caregivers but I do have to remember to bite my tongue from time to time, scale down my anxiety, my angst, my frustration. I have to remember to use my filter.

I forgot my filter on Friday.

I was sitting at the table telling our latest story. The story of Samantha, the nurse and the 106 degree temperature. Out of my mouth popped “That nurse is just lucky to still be here.”

Oops.

That was kind of harsh to a TCH board. I was told later that I never sound upset or vindictive when I talk about our hospital stays……until Friday.

I tried to explain that I didn’t mean any harm in the statement. I was just upset and that sometimes when I get that upset I wish I could morph into a praying mantis and bite the heads off of those who seem problematic; those who are getting in the way of our care. (For those who are frightened and confused, please see Morph from July 09)

Well, wishing to bite someone’s head off didn’t sound very friendly either did it?

Where is my filter?????

Not sure if TCH will invite me back 🙂

This evening I was watching a Discovery episode on Grizzly Bears. The weather has turned fallish, I’ve stopped shaving my legs above the knees and am therefore feeling a bit bearish.

I listened with intent.

“Getting between a mother bear and her cubs is extremely dangerous and should be avoided at all costs.”

Now there, that’s my answer, why can’t I have a warning like that?

“Getting between a Heather Bear and her Samantha is extremely dangerous. The Heather Bear may morph at anytime and bite your head off.”

If I only had a caption, I wouldn’t have to worry if I forgot my filter…..

“what happened to your head?”

“I had a run-in with a Heather Bear.”

“Oh, ouch….well that’s a Heather Bear for you….they will bite your head right off….dangerous animals….adorable but dangerous (hahaha)

The Discovery program ended with the Mama Grizzly being shot with a rifle-looking tranquilizer gun and relocated with her cubs deeper in the woods. Apparently, she had become a bit too threatening.

Ouch.

I’m looking for a stronger filter.

So, Lil’ Miss in her true form made the hospital staff run around for a couple days, recovered and was released last Friday. We still don’t know what made her so sick. Virus? Perhaps.

Months ago we had booked a condo in Vail for the weekend so we packed up the oxygen, antibiotics, important phone numbers and spent a great weekend up in the mountains. It’s amazing what a little fresh air can do.

Ya gotta keep on living…..

Samantha is on Tamiflu until the H1N1 vaccine is available. She is so much better….still tired after her big nasty sickness but she DID go to school this week and attended her therapies. What a trooper.

I gotta say, I’m pretty happy about the Tamiflu…if she wasn’t on it, I think I would have her in a bubble, coated in Purel, wrapped in anti-septic wipes.

Stay Healthy 🙂

Poo is monitored very closely in our household….Samantha’s anyway. When Samantha’s poopin’, life is good.

It’s the simple things I hold onto.

So, Tuesday night when Samantha’s belly looked big and distended, I started to get worried. When she was up all night with tummy pains, I became a little more concerned and when ‘interventional measures’ failed to produce the desired result, I called the doctor.

After several hours and a 103 spiking temp, I threw in the towel and loaded the family into the station wagon, Children’s bound.

If you can avoid the emergency room at Children’s right now, do…at all costs. It’s a nasty, fluey crowded, angry place to be. I lathered Samantha with Purel, took a deep breath, hitched up my big girl pants and headed through the doors.

At triage, we discovered that Samantha’s temp had jumped from 103 to a big, whooping 106. Not 100.6 one-o-six.

High.

“I’ve never seen a temp that high.” The triage nurse said.

I was trying to keep from hyperventilating.

“Here’s some Motrin. You can wait outside and we’ll call her name.”

“You’re not taking her back now?????” I asked.

“We don’t have a room.”

“Will it just be a second?”

“Well, we’re pretty full.”

“But….you said you’ve never seen a temp that high. She has a mitochondrial disorder, she could crash at any time.” What the fickin’ hell???!!!

“I said that I’ve never seen a temp that high. I’m sure someone around here has.”

I left the room in disbelief. Seriously? No wonder people ape-shit in Emergency Rooms. I fact I could feel a little ape-shittiness coming on.

Fortunately, I had my conveted Bat Phone. You know, the Bat Signal…when Gotham City is in trouble? Instead of big Bat Wings, ours is in the shape of a big ‘E‘ for our fabulous pediatrician. I dialed her super, secret cell phone number.

“Dr. E? We’re here. Samantha has a temp of 106.”

“106? Oh shit.” (This is the first curse word I’ve ever heard Dr. E say in our 3 year relationship).

“They have us in the waiting room,” I felt my voice break.

“I’ll make a call.”

We were called into a room one minute later and Dr. E came down to consult with the ER Doc. Thank goodness for the ‘E-Phone’.

Samantha’s temp slowly came down and today she is resting fever-free. We are also managing the tummy issue with slow but consistent success. She has been tested for every virus and bacteria imaginable. We are hoping it is a bad case of the flu. What a hope, eh?

We have also decided that when Samantha gets sick, her tummy and its associated parts stop moving. We are now and forever more on high-risk poop patrol.

Samantha was admitted up to the 8th floor after her short stay in the ER. On my way up to the room, I ran into the triage nurse.

“Hey Mom, we get that fever under control?”

“She’s at 104 right now.”

“Fevers can be scary but they really don’t do any harm,” He said.

I resisted the urge to morph into my praying mantis state and tell him what a complete moron he is.

Out in the waiting room, the crowd had grown; sick, tired kids, parents with strained faces and wide worried eyes. When I walked through the doors they looked up at me and then away with disgust. I wasn’t a nurse coming out to call their name. I wasn’t a doctor; just another parent…getting in the way of who they needed to see.

I looked down and realized that in the midst of trying to control Samantha’s fever and getting her tummy to start moving that I had landed a little poopy on my shoe. Kind like a little medal of honor….congrats, you survived the ER during flu season…have some poo

My husband convinced me I should probably clean it off.

Sunday afternoon….I have two hours. If I head west, I get into the foothills and a lot of climbing. If I go east, I can ride through the corn fields, small rolling hills and gain a little more speed. I head east.

I tend to stay on the ‘Road Less Traveled’ in order to avoid traffic; this has lead me into some beautiful, remote areas. Sunday afternoon I am marveling in the beauty of a long streching corn field and small quaint farm houses.

People drive fast in the country. The road is straight, no traffic. Really, what do you have to worry about? It’s the country….live free or die baby.

As a car passes me….the only car I have seen for miles, I see a small tabby cat leap out of the corn field…..

And straight into the car…..The car was going 60, it was no contest. And much to my dismay….the car kept going! They didn’t even slow down, no brake lights…just kept going! Boo! Hiss! Poor kitty.

Now, I am not an innocent driver. I have been the cause of many a roadkill (I think the most recent was a poor prarie dog) It was quite different however, watching the scene from a bike, watching it play out ten feet away from you, without the protection of steel, rubber, and 4,000 pounds. AND then to watch the culprit drive off, leaving you to deal with the poor kitty. Which, let’s be honest, there wasn’t anything really to deal with.

I was tramatized.

I was alone on the road….just me and poor (now dead) kitty.

I must do something to right this wrong; to set the world straight.

I look over and see a small farmhouse….the home of the kitty! I MUST tell them what happened. They can’t just come out and see their poor kitty in the middle of the road.

Feeling better, I hop off my bike and head up the gravel path to the house.

Almost to the door, I encounter two, very big, very angry, very territorial German Shepards.

Oh shit

I’m trying to remember what to do when you encounter an angry dog…. Play dead

No, idiot, that’s for bears.

Turn and run!

Um…yeah…not turning my back on Cujo and his buddy

Use your bike as a shield!

I remember someone saying to do this for mountain lions. Well, these dogs seemed as big and scary as mountain lions so I put my bike in front of me and started yelling my fool head off while backing down the path. This seemed to make them feel better and they started to back away. There was absolutely no doubt that if they wanted to….I could have been Heather Jerky.

I got back to the road and my kitty friend….Yeah…screw that, they can find their own damn cat.

I started to pedal my very frightened hiney home.

In life, I try to put a positive spin on negative experiences. As I rode home I thought what’s the postive I can take from this? My conclusion?

Um….nothing.

No postive lesson here…..sorry.

I did learn that perhaps when by myself, on an empty country road, on a bike, that perhaps I should think twice before heading up to the farmhouse…I’ll let the karma and the big hairy dogmas work it out for themselves.

Mommy has been a bad blogger! She got home from a summer in the hospital and forgot about the needs of my fans. So, I apologize. I took over the blog because this week because I have to tell you Mommy’s new expectations for me.

Really, it’s just unacceptable.

She said I had to go to school!!! School???? Gone are my days of sleeping in, staying up late. Now that I’m a big three year, she said it’s time… preschool…. two days a week. Jeez…the nerve.

I don’t want to go…maybe if I ignore her…….

Or pretend to be asleep…

I can pretend for a long, long time.

Fortunately, my Para (My very own helper) came to the rescue.

Maybe Miss Linda and I can be friends.

Mommy misses me after a long day at school and requires more cuddle time. Oh I guess.

As you can tell from the pictures….school wore me out! I get physical, occupational, vision and speech therapy at school so I am busy! Rumor has it that Mommy hangs out at Starbucks enjoying her quiet time. Eh, she still misses me 🙂

Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration.
Charles Dickens

Our first weekend at home since Father’s Day.

Father’s Day was June 14th.

It’s now August 9th.

That’s a lot of weekends.

We miss life’s everyday simple gifts when in the hospital. My basic senses are deprived in such a sterile, complex environment.

I don’t smell our neighbor’s lilac bush carried on an evening summer breeze.

I don’t collect dirt underneath my fingertips when weeding my tomato bed.

I don’t taste a sweet strawberry plucked fresh from our garden…still warm from the sun.

I don’t become completely absorbed in Samantha’s face as she lays in the grass and wiggles her feet.

So this weekend I did all of these things. I also pee’d with the door open because I didn’t have to worry about a doctor, a nurse, housekeeping, or the volunteer from the library walking in. Home is a good place.

And it is even BETTER with the healing of Samantha! For the first time in months…really since April, we have a smiley, cuddly, interactive little girl. She looks so good. She feels good. She wiggles around. I can’t get enough of it. I feel drunk on her good health.

So send your prayers, your good thoughts, your juju, your divine connection with the universe, and your lucky rabbits foot that we have turned a corner and smiley Samantha is back and out of the hospital. ‘Cause really? There is nothing better.

I wake up and look at the clock….8:00 Friday morning; t-minus 24 until I have to be at the start in Leadville.

Not a problem….I’ve trained. I can pack in a day, get the family ready. Food and cold beer have already been purchased. We are good to go.

Oh wait, one small detail….we still happen to be on the 8th floor at Children’s Hospital.

I start to formulate back-up plans. Can I ride in morning and drive down to Children’s in the afternoon? How many days can my husband stay in the hospital without going batty?

I was smokin’ crack, thinking that I could pull this off, thinking that I could make this ride happen.

Crap.

Our fabulous pediatrician, Dr. E. comes into the room.

“What are your plans?” She asks

“I don’t know….what are our plans?”

“Will she be on oxygen the whole time?”

“We will never take her off of it.”

“You have all of her meds?” She asks

“Of course.”

“Here is my cell phone number. Call me if you have any problems. Otherwise, I think we can get you out of here today and you can go up.”

My eyes fill with tears. “Thank you.” I say

She hugs me “Go, ride, be careful, take good care of her and for God’s sake, don’t get hurt.”

It’s 5:30 in the evening. Samantha and I are packed up, out the door of Children’s and hopelessly stuck in rush hour traffic. We decide to leave tomorrow morning….but we are still leaving….pending Samantha’s night.

5:30 am, Saturday morning, we are on the road. Samantha is snoozing in the back. I am wondering how much coffee it will take to get me over Vail Pass. Six weeks in the hospital, God I’m tired.

We have made it.

It’s 8:30 am, Samantha is crying in the back. My husband is putting my bike together and I am trying to organize the meds and formula he will need for the day. I feel the adrenaline coursing through my veins, anxiety from the last month of hospitalizations and realize that perhaps the only thing that will calm me down is a 157 mile bike ride.

Good thing were here.

I see my team. I love my team. I kiss them all and feel a lump rising in the back of my throat. My step-dad pins a sign stating “My ride is dedicated to Samantha”, on my back. We are off.

I ride. I ride up Tennessee Pass, to Camp Hale, breathe in the pine and fresh air. I laugh, eat oranges and hold my team mates hand. As we enter the magnificent Pando valley, I am reminded of how very small I am and that maybe that’s okay. I get tired of trying to be so big. Through the valley I see members of Team Courage, riding tandem or solo. I cheer them on….so very grateful that they give me hope…hope that maybe someday Samantha can see Pando Valley from the back of a bicycle.

We stop for lunch. My team mate looks for her husband so she can breast-feed her baby. Have I mentioned how much I love my team?

And those are our three days…..we ride, curse Vail Pass, eat, sleep, wake up and ride again. Samantha is a trooper; no fevers, no pain and she sleeps off the last five weeks in the hospital. My husband and my mom watch over her like hawks, fielding calls from doctors and making sure she’s okay. This has become quite a production.

Monday is our last day. As we pack up, another team-mate pumps my tires and lubes my chain. I have become so dependent on other people this weekend. People to watch my daughter, fix my bike, look over us….have I mentioned how much I love my team?

This is the day when it all settles in for me. As I ride up Freemont Pass, I pass another member of Team Courage in a hand cycle; using her arm strength to carry her 45 miles and 2,000 feet of vertical. I look at my beefy, tired thighs. I couldn’t imagine my arms doing the climb I expect from my legs.

“Whoo Hoo! Go Team Courage!” I say.

“Thank you.” The girl replies in a breathy voice.

I get big tears in my eyes and my nose starts to run. Heather! Pull yourself together! You have to climb up Freemont Pass! There is no crying in biking! I wipe my snotty nose on the back of my glove and try to catch my breath. This is tough….because we are at 11,000 feet.
I pull myself together and manage to remain so around Turquoise Lake. As we turn onto 3rd Street, I realize that I did it….that we all did it….my team…because they love my daughter and they love me.

I try to hold back the tears as I turn into the Lake County High School. I hear the cow bells and a distant cheer of ‘Go Heather’! I see my husband taking pictures.

I ride up the hill sobbing…..one of those ugly cries…you know where you no longer have control of your facial expressions? Full body crying….pretty…..I can’t even thank the lovely girl in the wheel chair handing me my medal….no…..sorry little girl…I’m so overwhelmed, you’re so inspiring, and part of the reason why I’m crying.

I see some unknown person take a picture of me….yeah, that’s right, take a photo of the lady doing the ugly cry….nice

My team surrounds me in big, comforting bear hugs. We did it. Six weeks in the hospital, three courses of I.V. antibiotics, sleepless nights, a sick little girl, and 157 miles around the mountains. I am eternally grateful; to my husband, my parents, my friends, our doctors and our nurses….maybe it does take a metropolis…and maybe that’s okay.