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.

According to the latest Save the Children ‘Mother’s Index’, the US scored 28th as the ‘Best Place to be a Mother’.

Norway came in first. The US was beaten by Estonia, Latvia, Lithuania, Croatia and Slovenia.

Greece beat us by four places….coming in at 24.

I expect Norway, Sweden, Germany, Denmark to rank higher than America. When I lived in Germany, even the papas got a couple months paternity leave and every kiddo went to preschool.

In America only 61% of our children attend preschool.

Singapore beat us out too.

Other criteria was infant mortality rates, pregnancy-related trauma, maternity leave and even access to birth control.

I was saddened and a little surprised by this study. Especially because I really do feel Samantha gets exceptional care. Today I also visited my new little ‘niece‘ who is a 34-weeker receiving great care in a Boulder hospital.

How can we as a family be receiving such good care while ‘we’ as a nation, come in at 28th place?

What is my point? You may ask…four days before Mother’s Day? Someone commented on yahoo! that it was very poor form to headline this right before we celebrate our mamas.

But personally as a Mama, I want to know this. And as a Mama who talks to other Mamas….we all want nothing more than what is best for our babies.

28th place really isn’t best. While I don’t hear of anyone going to Latvia for labor and delivery, perhaps we should try and make a couple adjustments. I’m not asking for a first but maybe a 20th place?

There could be some room for improvement.

And on this Mother’s Day, kudos to all of you…the Mamas and those on Team Mama.

It take a village.

We are home!

We are home with a big whooping bag full of rescue seizure meds. We are home with another urinary tract infection and an elevated lipase number (1050….normal is 10 to 150).

Why are we home? You may ask, with this list of issues. We are home because we need to be home. And after a long talk with the doctors, Samantha seems to be doing well today. And really, the last place you want to be, when your daughter seems to be doing well, is in the hospital.

We really needed a break….. I took a shower for two minutes today before I realized I was still wearing my bra….TWO minutes before I thought, why do I feel so damp?

Samantha started to cry every time the nurse came in to take her blood pressure….

We have not been at home, as the three of us, for 3 1/2 weeks…..

We consumed four bags of Milano cookies and watched Up eight and half times. It was time to leave.

It’s good to be home, even with our list of outstanding issues. The more we know Samantha, the more I hope we know when we can and cannot handle things at home. And the more we know how to utilize the resources around us.

In fact, during our last trip I got a police escort.

Seriously, police escort….. here’s my shout out to the Aurora police. We were stuck in traffic on Friday…bad traffic caused by a slow moving train. Samantha had two seizures while waiting for Mr. Amtrak to pass.

I was about to have a panic attack, watching Samantha through the rear view mirror. While cursing the slow-moving train gods, I noticed a police car next to us….so I rolled down our window…

“Excuse me,” I said, “my daughter’s having seizures and I really need to get her to Children’s Hospital.”

“Oh No! Do you need me to call 911?” He asked

“No, I just need to get out of this traffic. Can you help me?” So he turned on his lights and sirens, parted the seas of Peoria St, and got us back onto I-70 and into the Children’s ER.

It takes a village, or in this case, the Aurora Police Department.

We know when to call in our peeps. Hopefully we won’t have to call on them in anytime soon.

knock, knock, knock on wood 🙂

How can you not love Churchill?

He also said, “never give in, never give in, never, never, never”

and my favorite…

“We are all worms. But I do believe I am a glowworm.”

Tonight my war is with seizures. After 24 hours, seizures every ten minutes, I.V. Keppra,5 doses of Ativan, one dose of Phenytoin and a threat to go down to the PICU if we did not ‘behave‘ I feel like tonight…..perhaps…we have won the battle.

Won the battle but I am not confident we have won the war.

Room 831 is command central where the seizure enemy is monitored, watched for aggressive behavior and we are in constant contact with our ‘troops’.

We have lost some soldiers, we no longer have our all important ketones.

I am realizing more and more that those ketones were some pretty heavy duty little seizure fighters. But that’s okay, we will assess our losses, move on and perhaps employ some new seizure meds to help Team Samantha.

Our goal? A seizure free night. Doesn’t sound like a lot but battles are played out one move at a time.

As Winston says…..“It is a mistake to look too far ahead. Only one link in the chain of destiny can be handled at a time.”

….To tonight.

Love,
The Glowworm

It’s that time again! The Children’s Hospital Ride usually fills up by the end of May. Come join us!

Ah, the day of the discharge…busy, hectic, chaotic….

We needed to go home with an I.V. pump, I.V fluids, a new formula bag (I forgot my spare) and new meds. I needed to be trained on said I.V. equipment AND we needed to be out by 2:00 in order to make our mitochondrial appointment. This appointment has been on the books for five months…..oh we’re making this appointment.

This is a lot to coordinate on a Monday morning.

1:00- Seizure sign, balloons, flowers, cookies, cards, clothes and tooth brush are packed in the Malibu.

1:30- Our I.V. pump arrives but the tubing was missing. You can’t run an I.V. without it so our in-home care rep left to retrieve our missing parts. We went to our mito appt….which lasted three hours. Our home care rep came into the meeting with the pump, tubing, a manual, the 24-hour number and a ‘good luck’.

Hmmmm….so much for a little training before leaving the hospital….

5:00- We’re back up in our room collecting the last of our things to go home. I switch all of Samantha’s feeding over to our home pump and turn it on. We are ready, we are finally, finally, outta here. I wheel Samantha out while waving goodbye to our wonderful 8th floor team.

5:10- I realize that I turned the pump on but I never reset the rate of the pump. The rate is much, much slower for her new ‘j’ tube (25 mls an hour vs 250 mls an hour) I have just dumped 50 mls. of liquid into Samantha’s small intestine.

5:11- I curse

5:12- Still cursing

While I am cursing, I do turn her pump off and decide to keep it off for the next couple of hours to give her small intestine a rest. Samantha, bless her little heart, seems no worse for the wear. She gives me a big grin.

I love this child.

5:13- Still cursing

5:13 and 30 seconds: cursing a little more

5:14- Rattled by my mistake and a bit run down from a three hour appointment, I decide I can’t drive home without a coffee. While standing in line for said coffee, the 12 year-old behind me gets in my face with his sock-puppet…..

“Sock puppet stare down!” He says to me while holding this dirty sock with button eyes inches from my face. He then decides to sock-puppet stare down Samantha.

Bear in mind, I am still reeling from my 50 ml dump into Samantha’s gut. I look at sock-puppet boy and try to steer Samantha’s stroller out of sock-puppet range.

5:15- I can’t decide who I would like to sock puppet smack down more…. our cute little 12 year old or his mother who is conveniently on the phone and ignoring the whole situation; the sock puppet attack on my newly discharged, somewhat bloated daughter.

This better be a really, really good latte’.

5:21- I decide perhaps I am a bit high strung and probably shouldn’t relate to the public for a day or two.

5:51- Rush hour traffic stress ain’t got nothin’ on hospital stress. I sit happily in the traffic queue and watch my daughter in the mirror. She likes riding next to her huge get-well balloons.

6:25- Home, home, home, thank the bad-mommy-mistake-sock-puppet gods….we are home.