Three nurses barged into the room armed with needles, monitors and catheters. Bill moved out of the way as they gathered around Sarah looking for ‘good’ veins, hooking up electrodes.

“This looks like a good one.” One nurse said examining her arm.

“Be careful, they tend to roll on these little ones.”

They pulled out their needles and began poking. Sarah cried weakly in protest. Bill held her little body, leaning over her and shhing quietly.

I was going to be sick. “I’m going to call my parents and let them know what’s going on.” I left the room taking big gulps of air. Anywhere, I wanted to be anywhere but in that room.

The air outside was cold and crisp. Slowly my head cleared. I moved between the smokers outside for a break. I hadn’t smoked in years but yearned for a cigarette. I would have to settle for the second-hand smoke in the air.

I made two calls, my parents and work. I cleared my throat and smiled through the phone. “No, everything’s fine, just a precaution. I wanted to let you know. Right….. probably won’t be in tomorrow. Can you call the Office Mart account? We can probably close them by the end of the month. Great, thanks. Yep, I’ll keep you updated. Thanks.”

My dad and stepmom said they would be down later. They were having dinner with friends. Could they bring anything? “Starbucks” I said. “Make it a venti.”

I walked back into the waiting room. It was much busier than when we arrived. Kids who weren’t as critical chased each other between the chairs, others were cradled by concerned moms, covered in blankets. A little girl coughed loudly into the air. I felt a slight sense of relief at our timing. Bill couldn’t have handled coughing kiddos….antiseptic wipes would only do so much.

I opened the door to our room. The nurses couldn’t get a vein in her arms or legs so they went for her head.

Who puts an IV in a baby’s head? I thought. Sickos. Sarah donned a bright pink gauze hat which held the needle in place. Her tiny hands waved in the air. I felt so separate from her. I had carried her for eight months, felt her move and grow. We shared the same blood system, the oxygen I breathed had fed her little body. Now they put tubes in her head, they wanted to test her blood, not mine. I watched. I felt helpless in my daughter’s fight.

“They had to get her head,” my husband said. “They pricked her little arms and legs and finally went for her head. But she fought them. Didn’t you? Yes you did.” He looked down proudly at our daughter. “You gave those nurses the what for.”

Okay, first off, Team Sammer Hammer ROCKS! The scene was a little chaotic but a big group of us managed to meet up and have a lovely walk together. We lost Amanda, Ava, and Amanda’s Mom (so sorry!). We had a brief but desperate disappearance of BoBo Baby and finshed three miles in a record breaking hour and twenty minutes! I think a good time was had by all. We had a ‘personal’ photographer (thank you Bill!) so we will be posting pictures soon! Thank you, thank you, thank you….all of you. Ya’ll are good for my soul. Thank you also to everyone who couldn’t make it but wished us well….again, good for the soul.

I truly believe we are here to learn from each other. We might need to slow down and search for the lesson but we are here to teach in our own ways. I’ve been thinking about perspective; I sometimes lack it and it seems to bite me in the hiney when I least expect it. Perspective: a technique of depicting volumes and spatial relationships on a flat surface. Are we oringinally flat surfaces? Do we find volumes within our life through our relationships? Do we have volumes to learn?

We left the Epilepsy walk hot and tired. Samantha was pretty fussy and by the time we got home she was running a fever. I did a urine test which revealed her umpeeth urine infection. We got on the phone with Children’s hospital, arranged an appointment for Monday and devised a plan to get through the night. Monday morning, a long appointment at Children’s, another round of antibiotics and back home.

My good feelings from the walk were thwarted.

And then I read Niki’s blog post.

I met Niki at the walk. She and her boys were a member of Team Hammer. They joined as a sister of a dear friend of Heidi’s. I cannot urge you enough to check her blog out. Her voice as a parent containing two boys for three miles, watching families effected with epilepsy on the walk and taking the time to be thankful for her own life and her own blessings is priceless and provides us all..well me…perspective. Check it out at http://ordinaryfour.blogspot.com/

Because here’s the thing….I loose perspective. I forget how amazing it is that 1,400 people were all at the walk because they have been effected in some way by this crazy neurological disease. That these people can come out on a beautiful Sunday and enjoy the sun like everyone else. I forget what we have to be thankful for. I forget to loose myself in the preciousness of the moment. Thanks Niki, for reminding me to add a little cream to my coffee.

It’s sometimes hard to be Samantha’s mom, seizures, lack of smiles, hospitals, worry. But she has a gift to bring people together, provide a different view, by just being Samantha. And by giving people perspective, they give me perspective…we all learn from each other.

Again, thanks to you all. Here’s to finding spatial relations on a flat surface 🙂

XO-
Us

We filed into a small room with a nurse and a computer.

“So, what’s going on with Sarah?” she asked.

“We don’t know.” I answered. I felt flustered and defensive. Sarah didn’t have any identifiable symptoms. Buggy eyes…how do you explain buggy eyes? We had been worried about Sarah for a while. I felt so relieved to be here; like we were handing her over to people who could help her.

Was it just us? Was I a neurotic mother? When should a baby make eye contact? When should a baby smile? Sarah was a month early. Did that account for anything?

I had mentioned my concern to our pediatrician at her four month appointment.
“Let’s see if she will grow out of it.” He said.

She takes an hour to finish a bottle! She spits up! She doesn’t smile or make eye contact!

“I really think something is wrong,” I said. Our doctor recommended physical therapy. I felt like he was throwing a glass of water at burning house.

Sarah was now six months old. I looked down at my daughter. She was limp and lethargic. I felt like she was getting smaller and smaller; like she would just disappear from our lives.

“She doesn’t seem right” I told the nurse at the hospital. “We were up skiing and last night she was running a temperature. She keeps shrieking, like she’s in pain. We didn’t know what to do and we were passing through Denver. I thought we could just get her checked out.” My voice sounded so nonchalant; it wasn’t me. We’re sacred to death, fix her! I wanted to shriek. But I kept my control as Bill cradled our baby and the nurse took notes.

“Let’s get a weight and a blood pressure. Then the doctor will see you.” The nurse weighed her; 11 pounds. Six months old and she weighs 11 pounds. She had lost a hard earned 8 ounces in the last couple of days.

Another nurse had entered into the room. “Hi Peanut, aww, you don’t feel well do you?” The nurse stoked Sarah’s head. She looked up in a sickly daze.

“We need to get a blood and urine sample from her.” The nurse said. I nodded. Unaware of the needles, the poking and prodding Sarah was about to endure.

My husband stood over our daughter stroking her head and whispering to her. “Shh, it’s all going to be ok. I’m so sorry. It’s all going to be ok.” Watching him cradle her was too much. He doesn’t deserve this. We don’t deserve this. I fought the nausea creeping up my throat.

So, I’m having a day….I really am.

Samantha has been battling with a urinary tract infection and as a result I have to cath her a couple times a day to empty her bladder properly. The whole process- an infection that won’t go away, seizures, sticking a tube up my daughter’s ‘parts’ has hit me hard.

My bad days happen every once in a while…I have a pity party, take a hot bath and have a glass of wine, rally and then I’m back for more. So, I was having my pity party and then I got on the Epilepsy website and Samantha’s team page….and I started crying…and here’s why…..

Samantha has one of the biggest teams. People I have not even met are running/walking in her name. I feel so grateful that we have this support; that Samantha is surrounded by love and people who are cheering for her.

After I viewed our roster, I clicked on her team page and viewed the list of donations….The Bloom Family, Ms. Inda, Cindy from my writer’s group and Danette..who I am looking forward to meeting, have all made donations in Samantha’s name.

I guess what I am trying to say is that your concern, your support, helps us fight the good fight and keep my pity parties limited. Thank you, thank you, thank you.

So, this Josh Groban song has been in my mind. I thought I would share because it reminds me of you all…..

When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up: To more than I can be.

Thanks for pulling me out of my party 🙂 See you next Sunday.

XO-
Us

Hi Everyone! I am starting to post snippets from my book, The Detour. Pull out your red pen and let me know what you think.

I sat in the emergency room at Children’s Hospital assessing my neighbors. Young mothers with runny-nosed toddlers, large families who didn’t speak English arguing amongst themselves…a TV in the corner droned old 80’s sitcoms. I sat down on a threadbare sofa.

“Don’t touch anything” my husband said. “Who knows what this place is crawling with.”

I looked down at my daughter. Her complexion had taken on a grey color, her eyes were wide. I had never seen eyes so wide. I could see the whites around her iris and pupils. Her head was moving back and forth against the baby carrier. Mechanically I pulled out some antiseptic wipes and laid them on the seat beside me.

“Here” I said pointing to the wipes.

“Thanks” Bill proceeded to wipe everything down in his immediate vicinity; hands, face, car seat carrier, arm rest of the chair.

“It’s not going to help” I wanted to say. “This whole place is infested with something invisible, untouchable, uncontrollable, beyond us.” I didn’t say a word but let him try and destroy the onslaught of bacteria that seemed to be seeping into our lives.

I had never felt so dirty in my life. We left the ski resort in a hurry; anxious to get Sarah down the mountain, to try and figure out what’s wrong with her, to try and fix her. I had stuffed my hair into a ski hat and pulled on yesterday’s sweater. I had a musky, unshowered smell about me and was trying desperately to remember if I had brushed my teeth.

I had smeared on a little make-up in hopes of covering up my worry. I smiled to myself at the irony….cover-up to cover-up emotion, foundation to strengthen our foundation. My shield against whatever was going on…. as long as my lipstick is refreshed, everything will be ok.

Bill handed me a Power Bar….peanut butter. It was sweet, sticky glue in my mouth. I guess I needed to eat something. I really wanted a cup of strong, hot coffee; or maybe a shot of something, a little Jack trickling down my throat, tingling my toes….ahhh self medication.

But no coffee, no Jack; just the three of us waiting with the rest. Damn.

“Samson? Sarah Samson?” The nurse called.

“That was fast.” I said to my husband.

“The benefits of good insurance.” He answered.

Baby C is doing very well! In fact he was able to go home last week. The doctors even threw out the word ‘miraculous’! This is huge….docs keep the ‘M’ word very close. The M word is good. The M word should be coveted, an M from a doctor is well…..miraculous! Thank you to everyone who shared concerns and to sweet Miss. Heidi who immediately wanted to know where to send the lasagna 🙂

My house is full of laundry, excess easter basket grass and dust bunnies. I’m not a great housekeeper but I usually try to keep my dust bunnies in check. Why is my house in such disaray? Because last weekend we were up in Beaver Creek, Tuesday I skied with dear ol’ dad and Cami AND we spent a lovely night at the Magnolia the weekend before that!!!! WOW! I did a count of my ski days for the season and I made it to ten. Ten! The last time my ski days were in the double digits was the year Bart and I got married; 2004. My life has changed a bit since 2004 but I was still able to make it to ten which is well….miraculous!

These days would not have been possible without the help of the Grandmas. They pitched in, changed diapers and bounced the baby while I bounced down the mountain.

So I wrote a poem….

Grandma, Grandma goo,
Grandma, Grandma gee,
Without you
I could not ski

Thank you, thank you do
Thank you, thank you dot
What would I do without Grandmas?
This, I know not!

Happy Spring!

Us

So, I wanted to write this post about my FIRST night away with my husband since Samantha got sick and what a fun time we had BUT then I got diverted. I learned about the birth of Baby C and he and his parents have been on my mind all day. Without divulging too much, Baby C had a bit of a rough start but he has great, smart parents who are committed to his health and happiness. But it got me thinking about the weekend, a year ago, when I was confronted about Samantha and her future. My friend Christy gave me a poem ‘Welcome to Holland’ (it’s posted on the blog). I thought, well that’s a great poem but we’re not going to Holland, thank you very much.” A year later, I think we’re part of the Amsterdam tourist bureau. Is it ok? Yes. I like Rembrant and tulips but I’ll always yearn for a pizza or two.

What is in our Holland?

Have you ever been to Disney Land (World?) Did you ever ride the Small World ride? I think of our ‘Holland’ as the Small World Ride. Yeah, Space Mountain is much more exciting but there are a lot of little people in the Small World ride who are there to welcome you and remind you that you are all in this boat together.

I think I know of families who were sent to Holland as a layover and eventually got sent to Italy. These are the best tourists because they will never take the gelatto for granted, they know what a work of art the David is and that the Duomo is a miracle. Is it because they spent the last year in wooden shoes? Maybe. But for those, the sun is a little brighter, miracles mean more and happiness is cherished.

So, to Baby C and his parents, I know no one knows the future. If you land in Holland for a little while that’s ok. Smell the tulips, ride the boats, see a Rembrant and don’t forget there is a group there to welcome you. We are sitting in the tulips, clicking our shoes and offering advice.

It’s a world of laughter
A world of tears
It’s a world of hopes
And a world of fears
There’s so much that we share
That it’s time we’re aware
It’s a small world after all

Have a sweet night Baby C.

XO-
Us

So, as a friend of mine put it, “You told us you were going home and that was it.” Yes, she’s right….it’s been a while since we sent an update. I gotta tell you though, the hospital sucked the life out of me; suck, suck suck. I don’t know how we got through 45 days in six weeks at Children’s last year. For those of you who saw us last year and thought we were on the verge of a breakdown, I appreciate you not saying anything. Those of you who saw us and just handed us a glass of wine….well I appreciate you too 🙂

So, was it worth it? Well yes, but if you ask Samantha, she might have a different opinion. We came home with peace of mind. We have weaned Samantha off of so many siezure meds that anytime she made a jerky movement, stared off into space, I questioned if she was having a seizure or even worse, that her spasms were back. Well, our neuro said no, what is a seizure is a seizure and that’s it. AND our neuro said it with a smile. I love our neuro but business is business she’s not one to sugar my coffee, butter my toast or tell me that things look good when they don’t. You know what she told me? She told me things look good 🙂

We still struggle with seizure control. When Samantha has a good day, everyone has a good day and I think it will be that way for a while.

On a side note….thanks to everyone who have joined the SAMMER HAMMER!!! Again, mark your calendars for April 20th at Washington Park in Denver. The Hammer has $360.00 to her name. We are very touched you are spending your Sunday with us.

I’ll try not to wait two weeks again. Happy hump day everyone!

XO-
Us

Samantha has done a great job of showing the doctors what they needed to see. Such a good job in fact, that we are able to go home tomorrow (Wednesday) morning! Whoo Hoo!!!

So, what did we find out? Samantha’s seizures are primarily in the left frontal lobe. She does however have some other ‘discharges’ throughout the brain therefore Samantha is not a candidate for surgery right now. They will take a look as she gets older or if the seizure type changes.

Here’s the good news, her infantile spasms are still gone and her jerky movements are just ‘Samantha movements’. Our neurologist felt really positive about the EEG and said it has really improved from the last couple months. The diet has been a positive change and she wants us to remain on one seizure med. Whew! Not too bad for a days work!

We are signing off for the night. Thanks so much for all the positive thoughts!

XO-
Us

Samantha and I spent the night battling evil catheter nurses, seizures and begging for drugs like a junkie on Hollywood Blvd. Sound like fun? Well at least the coffee is free.

Kids who have muscle issues sometimes have a hard time emptying their bladder..you know the song…the hip bone’s connected to the leg bone? Well it is…it’s all connected. So we’re doing a pee-pee study while we’re in here. Enter the evil catheter nurses. After 3 nurses and FIVE tries, I kicked them all out and told them to get the Urologist. They really weren’t tyring to be evil but when it comes to five unsucessful caths anyone can look mean. I guess when the nurse looks up at you and asks if your daughter is ‘anatomically correct’, it’s a bad sign. How do you respond to that?

So, it was midnight and Samantha was awake and mad. At home when it’s midnight and Samanth is awake and mad we sedate her but since we’re looking for seizures….no sedation. Since Samantha hasn’t slept since 6:00 this morning, she started seizing. Well, I guess that’s what we’re here for, right?

Five seizures later, it’s 2:00 in the morning and I am begging for drugs. “Give my daughter the goods!!!”

The nurses called our doctors and ten minutes later Samantha is snoozing in her crib…there is a god. I hunker down in our nifty little hide-a-bed and try to get some sleep.

6:30 the people from the lab came in to collect blood and urine. I told them no one in their right mind should be drawing blood from anyone at 6:30 in the morning and asked them to come back later. They failed to see my reasoning but did leave.

Four hours of sleep is do-able. My dad came in at 7:30 with a big coffee….mmmm…coffee.