Spark

It takes a village. I am not used to the village.


I was raised to be self-sufficient. My father grew up in the Great Depression in Detroit and my mother grew up in post-World War II Germany. They are bootstraps kind of people. And I am anything but.

About 5 years ago, I met a group of women online, all of whom had a child born in September 2006. Luckily, Brody arrived 7 weeks early, and I wound up in this group on IVillage.

After about 2 years, we moved away from IVillage, and friended each other on Facebook. By sheer accident, a few months ago, a group of the 66 of us was formed on Facebook of just the SF (stands for Sunflower, which is what we call our September 2006 babies) moms go. It’s secret, and no one sees our posts but us. (We’ve googled to make sure). It’s …. It’s like a permanent happy hour. We confide our secrets, share our joys, vent our frustrations, celebrate our victories, discuss sex, illnesses, in-laws, mahjong, knitting and money, and even, on occasion, share parenting tips and advice. We are from the US and Canada, and we are composed of all incomes, ages, marital statuses, sexual orientations, educational backgrounds, religions, and political parties.

And although several of them have met in real life, I’ve never met any of these women in person.

Naturally, I posted to the group the bad news about Liam’s growing clot.

And then someone suggested opening an Etsy store, selling homemade, handmade items, and giving Liam the proceeds. And then a sub-secret Facebook group was formed, called Little Liam Loves, just like the name of the Etsy store. That was two weeks ago.For two weeks, they have made and donated their works of art, emailed pics to a centralized email, then the 3 designee administrators of the shop then post the items, and keep track of sales in the spreadsheet open to everyone in LLL. The Grand Opening was yesterday, and there are 78 items for sale. As a result of their promotions, already 21 sales have been made, including random donations to a paypal account these women set up. They even created a thank you card jpeg at the end of this post to be printed out and mailed along with the items purchased.

I love these friends of mine. I am blessed for reasons I do not understand. For goodness sakes, I stumbled upon this group of women purely by the randomness of our children’s birth month, which, by the way, Brody was not even scheduled to be born in. And yet, there they are, behind us, holding us up, devoting their time, energy and resources, not to mention money. The posts in the LLL group average 5 an hour. Ideas for new products, new promotions, compliments on the items for sale.

But here’s the thing.

I’m not the only one of the group struggling right now. In our group are women going through divorces, illnesses, financial calamity, new babies. Hell, Dante’s mom is part of this group. She’s 39 weeks pregnant and sewed this amazingness in like a day.

The hell? Why me? Why would these women do this for us?

I just feel unworthy. It boils down to that. It’s uncomfortable to me to be the recipient of this much…..muchness. I can’t reconcile how I feel.

I’m so completely indebted to and humbled by these women that it’s almost spiritual.

My son

Brody bested a bully today. Well, ok it's another little 4 year old in his class. So this kid, Skyler, is a bit of a little shit. He calls Brody "baby" all the time and I don't think he plays nicely with Brody, ignores Brody and takes his toys, etc. Brody told me about him and we have been working on what to say. I told him that whatever Skyler says, just say "Takes one to know one."

So Brody just told me today that Skyler called him a girl "Brody's a girl, Brody's a girl" in that taunting voice. So Brody said, "takes one to know one," and Brody said Skyler got mad and said he was gonna tell the teacher on Brody, but Brody said he (Brody) became Bolt (from the movie) and stood in Skyler's way and blocked him from telling the teacher. I always ask Brody what his favorite part of the day was and he says, invariably, going outside. Today? He said standing in Skyler's way so he couldn't tell the teacher was his favorite part of the day. He had the most amazing and proud look on his face. I love that kid.



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Searching for grace

I am grateful. For:


Medicine that can help to dissolve blood clots.

Insurance that covers some cost of the medicine.

My mom and stepdad who are helping a great deal with the cost of the medicine.

Miguel, at Walgreen’s Home Infusion, who was kind, calm and thoughtful to a frantic mother when I had almost lost hope of finding a pharmacy that could compound Liam's medicine AND for anticipating our need for a payment plan and approving us without asking.

Erin, the social worker who is applying for grants for us.

My friend Linda who wrote to me, “Liam trusts you...You have to remember that. He loves you no matter what. So if it ends up being you still giving the shots, you can rest assured that he still loves you and trusts you and will always be happy that you comfort him, even if it is you that causes the discomfort in the first place.”

Friends of mine, a large gathering of “online friends” I only know because we happen to have children born in September 2006, generous, supportive, intelligent women I have never met in person, who have created this shop, and are donating all of their creations to sell, and giving us the proceeds to pay for the medicine.
Liam, for his smiling eyes.

Brody, for his overflowing heart.

Jeremy, for insisting on group hugs.

Jo and Alisha for telling me about EMLA cream.

Alina for giving us her gift card to pay for it.

Cathy for showing me what real courage and unending grace look like.

If you told me in March 2010 that in a year, I would have another son, who is basically healthy, smiles all the time, and loves nothing more than being held my me, but that he would have a blood clot on his aorta, and that it would cost us $5,000 to treat, do you know what I would have done? (a) thought that you were insane because it was impossible; and (b) cried tears of joy and wonder at the miracle I was about to be given.

I keep returning to this:

When you walk to the edge of all the light you have

and take that first step into the darkness of the unknown,

you must believe that one of two things will happen:

There will be something solid for you to stand upon,

or, you will be taught how to fly.

~Patrick Overton



5 shots down, 175 to go

Jeremy has, thus far, wimped out on giving shots to Liam. I can't
blame him. It's brutal. He cries for a few minutes. Long minutes. Screams, really. And he's inconsolable. Nothing soothes him.

Tonight while I held him while he screamed, Brody climbed up behind me and almost knocked a frame into me and Liam, while Liam was still crying and screaming. I lost it and yelled at Brody, he ran off crying, Jeremy went after him to console him, Brody yelled at Jeremy, and I kept holding Liam. After a few minutes he finally took the pacifier, and calmed down. He was wrapped around my middle and I was just watching him, and he was watching me with his enormous navy eyes, sucking like mad on his pacifier, and then, he smiled at me. Like he was so happy to be held by the person who tortures him. I started crying, unable to fathom how to do that to him 175 more times, and of course at that moment Brody came back in the roomand asked why I was crying and I told him I was sad that I had to give Liam shots and Brody said he was sad too and Jeremy said he'd give the shots from now on and then the 4 of us hugged.

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Enough

I don't even know what to write.

Took Liam back to the hematologist. Brody, Liam and I were at the hospital from 8am - 330 pm. The clot in his aorta is growing. It started at 8.3mm, then went down to 4.3, now it's back up to 5.5mm.

We go back on Lovenox. Two daily injections into my baby's thighs. Him screaming and looking at me while tears stream out from his beautiful eyes.

Also, last time we checked it was $600 or so for a 3 week supply (that's WITH insurance_ and we need to be on it for at least 3 months.

Then we start another round of hospital clinic visits; Monday we go to check the levels of the meds in his blood then back in 2 weeks for an ultrasound to check on the size of the clot then again for levels and ultrasounds and levels.

The hematologist said he believes the clot was caused by the umbilical line. Which was caused by him heing in the NICU on the CPAP machine which was caused by him having fluid on his lungs when he was born which was caused by me having him by c-section which was caused by me.

So.

I didn't cry in the doctor's office when he told me. I waited til we were walking to the car, the 3 of us, in the middle of this gorgeous sunny day. It's always worse to cry on a sunny day.

He doesn't have cancer, right? Plus, it's treatable. If we don't treat it it can become clogged in an artery and then a limb goes cold and Liam loses a leg.

But here's my question. When can I rest easy? Is that never?

And if couples fight about money and they fight under stress and the illness of a child is the most stress on a marriage.....seriously? When is it enough?

When is there peace? When will I stop feeling like I'm hitting my head against the wall? Why can't it be me and not my babies?

I hate feeling like a victim I hate this lack of control I hate this feeling of helplessness.

I hate the calamity and chaos of doctors and hospitals and waiting and wondering and wasn't 14 surgeries for one son enough? Isn't the guilt for that and the teasing he faces and the stares we get all the time and the worry over his long term prognosis and bills and pain and tears from all that is Vacterl Association - isn't that enough?

Why Liam too? Why this family again? Why more hospitals and tears and worry and risk and heartache. Even if it IS less, even if it isn't as serious, even if all of that.

Why?

This is what I come home to

Sometimes being a brother is even better than being a superhero. ~Marc Brown


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Location:Home

Restoring my chi

Nothing for weeks, then 2 posts in one day!

I'm ok. The kids are wonderful. Working full time is hard. Not just getting out of the house on time in the morning, not just being on top of our game at work if we've been up a few times overnight, not just remembering to put makeup on AND deodorant AND brush my teeth, not just paying atttention at work when I'd rather be with my boys, but the sheer energy it takes to be good at both things, employee and mother, not to mention wife, sister, friend. It's exhausting. I've forgotten to bring Valentines to school, write thank you notes, get the mail, pay the car payment, meetings....but right now the boys are fed, clean and clothed. So am I. Jeremy's on his own.

I did manage to go on a field trip with Brody's preschool class. I did manage to at least pick up the registration forms for kindergarten. I feel like I do laundry all the damn time, and yet none of us ever have clean clothes.

I went to brunch with my friends, five other women whom (who?) I really adore. Our girls' weekend that was to be in Steamboat Springs in August turned into, over unlimited prosecco at brunch, a girls' weekend in Vegas. So far, it seems cheaper.

I've pretty much lost touch with a friend I've known since kindergarten. I miss her, but just cannot seem to get the time to reconnect.

Another friend in town has breast cancer. She's 3 years older than me, with two little girls. Another friend is in the process of adding to her family. I try to be a decent friend, but I think really, one little Liam makes me unable to be there at times.

Liam. God he is cute. He smiles ALL.the.time. He laughs in his sleep. He slept 9pm -6am one night this week. He is fat in the best ways, with rolls in his thighs and a huge belly and cheeks that hang over his face. When I kiss his face, his whole face and body smiles, like it's the best thing that's ever happened to him. He has these amazing big eyes that seem like they are navy blue, with light blond eyelashes that are almost an inch long, and still no discernible eyebrows. He laughs at everything Brody does. At three months, he can wear size 6 mos clothes and the newborn sizes are inches too small. So different this time around.

Brody. Brody still so protective and so much wanting to include Liam in everything we do. He plays with Liam when Liam is fussy, and if we don't get to Liam fast enough when he cries, Brody scolds us, "Mommy! Daddy! Liam is CRYING!" He won't sleep over at my mother in law's house anymore because he doesn't want to leave us. He is very much ready for kindergarten, but I worry about teasing. Although he seems to have friends spontaneously at the playground, or the trampoline park. His vocabularly is ever expanding, and he cannot understand why the stepmother in Cinderella is evil, why anyone is ever mean, or why anyone ever steals. He asked me last week if we could change his real name to Bolt, the super dog, and randomly tells me I'm "pretty and beautiful." He also asked for another little brother. (No.)

Our house is bursting with toys and clothes and games and gear and just....crap. I want to get rid of it all but I'm so tired after we get home from work, make dinner, clean up dinner, put the boys to bed, that all I can do is fall into bed myself, perhaps stare blankly at the TV, then pass out. If you saw my car, you'd think I lived in it.

Since I went back to work, I've gotten two bad colds, followed by larnyngitis both times, and sprained my foot falling down the stairs holding Liam (he was unscathed). It's been 3 weeks for the foot, and NO I didn't go to the doctor for any of these things. My foot is still swollen, but it appears to be healing, just stupid slow. I didn't even have sick leave until March 1 since while on FMLA leave we don't accrue sick leave. I started getting ANOTHER sore throat Friday morning. I stopped at Whole Foods on the way home and got echinacea, probiotics and ColdSnap. The ColdSnap has restored my chi. That's what the box says it will do. I feel actually better than I have in weeks. I don't know what chi is but maybe it's like mojo.

Today I slept in from 6am to 830, then we went to the park, walked a MILE around the lake after playing, used a gift card to PF Changs, then J and B went to see Rango while Liam and I came home to nap (this was after much discussion by Brody about how we COULD take Liam to the movies if only we brought a bottle and a diaper).

One last thing: Brody and Liam's school - the one that is not charging us for Brody anymore - is holding a fundraiser. Lots of items under $10 and lots of flower bulbs, chocolate goodies, jewelry, kitchen gadgets. If you want. go to http://www.thefundfactory.com/ and click on "Order online" at the bottom of the page. Remember to give them the code number ACHI28 (allcaps).

May your chi be with you.

A thousand words

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