I wanted to say I hate the PICU….

But I don’t really. I just hate the fact we’re here. The PICU stands for the Pediatric Intensive Care Unit…..reserved for really sick kids.

The doors are all sliding glass so the nurse can observe kids 24 hours a day. We are at one end of the PICU, the bathroom is at the other end….so, if you have to pee, you have to walk past 12 rooms of sick kids.

12 rooms….

I try to ‘hold it’ so I don’t even have to walk past 12 rooms. If I do, I try not to look in…..ugh…. kiddos hooked up to five different machines, parents with that ‘lost’ look in their eyes….

if you gotta be here, you gotta be here but yeah, the PICU sucks.

We are here tonight because Samantha crashed while being sedated for her MRI. When the anesthesiologist started her ‘cocktail’ of meds, her heartbeat became irregular and her oxygen stats dropped to 60% .

The doctor immediately stopped the sedation process. Samantha woke up on the way back to the recovery room with a doozy of a seizure.

Big seizure + irregular heartbeat + dropped stats = PICU

She looks better tonight and is resting comfortably. We have no results from the MRI because it just didn’t happen.

Her belly remains a mystery.

I’m okay with that.

Hoping to be back on 8 tomorrow.

Send Samantha a cheer card here 🙂

Therefore I am heading off to my hospital cot.

Samantha is hanging in there. She is one tough little pickle. She has a lower respiratory infection which explains her low grade temps and possibly her seizures. The infection has also created excess fluid in her heart and lungs so we are also being followed by cardiology.

Abdominal MRI tomorrow to look for reasons for her pancreatitis.

She looked gray and sick today but pinked up this evening. She is currently sleeping….

Mama is hoping to be sleeping soon.

Thank you for all of your thoughts and prayers. If you would like send Samantha a cheer card, you can do it here.

xoxoxoxoxoxo…….zzzzzzzzzzzzz

“You have a block,” My acupuncturist said.

“Of course I do. Don’t touch it. That dam was made with blood, sweat and tears. Please don’t unblock me. God only knows what will happen if we unclog four years of emotional schmegma. I could be rendered useless for the next 100 years.”

Seriously, useless……100 years.

But sometimes my emotional dam breaks. It’s necessary but I have to tell you, it ain’t pretty. It usually involves a copious amount of carefully selected curse words; words reserved just for hubby, a venti coffee or large glass of wine (depending on the time of day, I do have my limits, sometimes) and a self-imposed time-out.

Time-outs at the hospital are hard, walls are thin. Nurses give you the sad, worried look. There is no place to go, scream, cry, sweat-it-out. I keep pushing for a workout room…..with sound proof walls and several very large punching bags.

Today, after seizures, a lipase number of 5,000 (meaning she’s back on I.V. fluids only) AND a low grade fever, I shuffled my emotionally unstable hiney out of the hospital and into Malibu, where I promptly lost it.

I listened to Pink, as loud as she could go, ordered the biggest Starbucks I could find and drove.

Did you ever see 101 Dalmations? Remember Cruella Deville? I think I looked a bit like her, hair askew, red eyes, knobby knees, just a tad crazy…..

I finally found myself on I-70, hanging at the Conoco in Dumont. You can get a decent coffee there for a nickel.

A nickel I tell you.

Perhaps it was the 40 ounces of coffee I drank, or just maybe, maybe because Lil Miss is having a tough month…….

But the dam broke. I unblocked…..spewed my emotional vomit right next to the big Sams Club Semi. Semi’s are a good place to loose it because the engines are really loud. No one can hear the expletives.

I now flow a little easier and feel much better….about 400 pounds lighter.

How do you loose it? Self-imposed time-out? Let me know, I need some hospital reading 🙂

I am not a fan of seizures.

And I have forgotten what it’s like to have a child with uncontrolled seizures because for 2 1/2 years we had good seizure control on the diet.

Bettter-than-I-thought seizure control…..

Now we don’t really have good control and I miss it.

Alas, time to tweak another med.

Samantha had a good two weeks. Her lipase has been out-of-control, through the roof high but she has been in good spirits. So, we have been in good spirits.

But today, in the midst of a crazy rainstorm and bumper to bumper traffic on I-25, she had a seizure, and another seizure, and another. I pulled off to give her rescue med but it was like throwing a glass of water at a burning house.

Poop.

When your rescue med doesn’t work, it’s time to call in the professionals. So I did. We were told to turn back around and head to Children’s

So we did, and proceeded to battle bumper-to-bumper traffic going South.

I swear, families who have seizures should have a little siren on top of their car to get them through crazy traffic.

I would only use my little siren during seizure times.

I promise.

Upon arriving at Children’s we found out Samantha had a temp. Possibly the reason for the seizures? Who knows.

We do know we’re camping out on floor #8 tonight. Hoping for a quick stay.

XO-
Us

I am very fortunate to be surrounded by smart, worldly people.

A couple years ago, my friend Deana realized her son Max LOVED the opera. Max’s diagnosis is different than Samantha’s but many issues are similar. As a smart mom of one of our kiddos, she knew she needed to foster Max’s love and excitement for this music. So she contacted Opera Colorado and arranged special live performances for Max and his buddies.

Yesterday they performed the Music Shop at Children’s Hospital. It was fabulous. It was Samantha’s first opera and she loved it.

Loved it. She was engaged, watched the characters and moved her hands around. When the soprano hit a high note, Samantha’s eyes would get wide, she would arch her back and sigh. I personally think she was happy that someone was singing to her….

Someone who knew all the words to the song and could carry a tune.

You all remember my sad version of Polly Wally Doodle (is that the name of the song?)

The cast members were wonderful and visited with us after the performance. Samantha kept a hold of the velvet gloves and thought mink coat was a very nice place to bury her little nose.

It is wonderful, thrilling, to find something that our kids enjoy and connect with. I am also thrilled to have a friend like Deana who listens to opera. I would have never known Samantha had such a strong connection to this type of music…..

Because sadly, I’m not a La Boheme type of girl.

BUT after this experience, I will put down the Lady Gaga and pick up The Marriage of Fiagro.

Thank you Deana, Max, Opera Colorado and Samantha for putting a little culture in this Mama’s life 🙂

Special thanks to Deana to taking these pics.

Samantha and the Music Shop Cast

Chatting with the stars. Deana and Max are to the right of us. Thanks for a lovely experience!

My friend Heidi lost her friend Cat today to breast cancer.

I never knew Cat.

But Heidi and I would talk about her and what she was going through. A couple weeks ago she sent me Cat’s Caringbridge site so I could follow her story. I was so touched by her story, her strength and her beauty.

Perhaps it was the stressful eight hours we spent at Children’s today….

Perhaps I had become a bit of a voyeur on their website……

When I found out this evening that Cat had lost her battle with cancer, I lost it.

I found myself leaving Heidi a message and not being able to complete a sentence….I was sobbing.

I never knew Cat.

But I knew she was a mom. I knew my friend loved her. I knew from her Caringbridge posts that her new husband loved her.

She was 36.

And it felt good to cry for her. I think sometimes we get caught up in seems appropriate. How we should mourn for what we don’t understand. How we should grieve for what doesn’t seem fair or what doesn’t seem right.

Shouldda, wouldda, for this one there is no rule book. Death just sucks.

This is a day late (and as always I’m a dollar short 🙂

We had a great Mother’s Day. We were at home. I went on two bike rides. I was showered with gifts and two types of pie. And we had a wonderful lunch on the patio with my mom, stepdad, brother and my ‘sister’ (my SIL but my sister).

Lovely. But like any holiday, it’s a little different with a kiddo like Samantha. I would like nothing more than for her to wake me up at 6:00 with a bowl full of soggy Cheerios announcing that I am getting breakfast in bed.

I am also recovering from my hospital funk. Hospital funk is the ‘down’ you feel after too many days of sleeping to little, too much stimulation and too much adrenaline. I always takes me a week or two to get my home routine going again.

So, where to go with my Mother’s Day post? Blah.

And then it hit me.

Mother’s Day is not about me. It’s about the people who mother me.

So here’s a word….to my Mother’s

Here’s to our Base Camp. You know who you are. Here’s to Mom, Dad, Cynde, Jim; the fabulous four who drop everything when we’re on the 8th floor to feed and clothe us; make sure we get out. They ask questions, provide another point of view, give support and love our family. If you’re climbing Everest, make sure you have this base camp. They will sustain your body and spirit as well as shower you with Spicy Pickle sandwiches and the best pot roast ever.

Is there anything better?

We have our ‘hospital mom’. Our Dr. E who looks after all of us as if we were her own. I have not seen it, but I have a suspicion that she will take on a team of doctors with Mama Bear fierceness when Samantha’s care is in question. I adore this woman.

Moms who I knew as moms growing up. They look after me as if I was their own child; sending meals, goodies, notes about my own welfare.

My friend moms, who are balancing their own busy life; have their own families. You who schedule time in to visit the hospital, bring sandwiches, meals, frog pins, People magazines, cards, bamboo plants for good luck, make signs, bring balloons, zen mix, cookies, fruit, call, email, drive 50 miles in a rain storm to meet me for dinner.

And to my women who say ‘Well it may be Mother’s Day but I’m not a mom.’ HA! You have protected and provided for us….mothered me with a shoulder to cry on, a glass of wine, the best brownies the world, quilts, cookie baskets, flowers from other countries……

You know who you all are. My band of mommies making sure I stay honest and somewhat sane.

You’re doing a great job….I can be a somewhat unruly child 🙂

Happy, happy, happy Mother’s Day….

Word to my peeps for QA’ing my posts. Laura, I need to hire you to manage….well….me 🙂

My Get Born link from yesterday doesn’t work! So here it is today: Get Born Blog

Check out Heather Janssen’s post tomorrow for words of wisdom and free swag.

🙂

Happy Mother’s Day dear readers! Ya’ll know how much I love Get Born Magazine. This week they are running five different posts on the topic; Becoming a Mother is Like from five different bloggers. I’m Friday! And here is my mother comparison:

Becoming a mother is like going on safari; becoming one with my inner animal.

I am the mama bear; growling, charging, rising up on my hairy haunches at those who come between me and my cub.

I am also the mama bear in that lack of shower time has given me hairy haunches.

I am the elephant; calling on the other ladies in my herd to look after my calf when I just need to go out and well….be an elephant.

I have been the kangaroo…..

And alas the proverbial cow.

I have been known to groom my entire family like a chimp.

And tended to my nest; sitting patiently on my egg.

I have grown claws. I have been known to howl, chirp, bark and snap. Fortunately, for all involved, I have yet to bite…..today.

I do try to be somewhat human; speak in complete sentences; plan ahead, schedule, find clean clothing that does not contain baby funk. In my balance between wild mama and socialized mama however, I have learned that no matter what is going on in our civilized, humane world, there is nothing more primal than a two year old having a tantrum. Diapers will still explode at inopportune times, children will still projectile vomit and nursing breasts do not care if you’re wearing cashmere.

Civilized? We’re a tribe of crazy monkeys.

On Mother’s Day, go to www.getbornmag.com/blog for a special message about becoming a mother from editor Heather Janssen AND be entered for free, fabulous schwag to splurge your fabulous self from participating get born advertisers. (Sneak peeks here, here and here.)

It is almost Mother’s Day.

And I have been reading great posts about wonderful mothers.

And I have been reading touching, strong posts about mothers of special needs children.

And I have appreciated and loved them all.

But I always squirm a little when I am sent emails about how special I am for raising a child with disabilities. Because I do not feel special.

I did not sign up for this. Before we had Samantha, if there were a line for ‘Raising the Special Needs Child’, I would have avoided it like the plague. I would have pushed other people ahead of me to be the very last in line. Okay, maybe even shoved people ahead of me.

Now that Samantha is in my life, I couldn’t imagine it any other way but that does not make me special. The things I do, I do because I love my daughter. Just like any other mom.

The other day I was out with some new friends. A couple of them did not know our situation so I was talking about Samantha and her condition.

“Well,” said one mom, “now I feel guilty for complaining about my kid’s kindergarten class!”

“No!” I said, “never feel guilty. Your story, my story it’s all parenting. Once I am singled out as ‘that mom of the special needs child’, the playing field becomes different. And tonight I don’t want to be different. I just want to be.

Just me, friends, and a glass of wine….no special….and somehow not being special made the night a little special.