Thankful: 21, 22 and 23

21. This song and this kid.

22. This time together (my mom and Liam).

23. This email.

Here I come!!!!
Donna

Passenger(s)
DONNA xxxx xxxxxxxxxxx
DateFlightDeparture/Arrival
Sat Feb 181650Depart Detroit(DTW) at 06:55 AM
Arrive in Denver(DEN) at 08:25 AM

Wed Feb 22713Depart Denver(DEN) at 07:25 PM
Arrive in Detroit(DTW) at 12:05 AM

Thankful: 15, 16, 17, 18, 19, 20

15. Strange one: that Brody has renal issues. Why? Because without his renal issues, Liam would not have had a renal ultrasound before he was discharged from the hospital last December, and we would never have discovered (until it was too late?) that Liam had a blood clot on his aorta. Leading to...


16. Lovenox. Yes, I complain about the cost of Lovenox on here a lot. $1600 a month is a bit steep. But damn if it didn't let me have 2 successful pregnancies, and save my youngest son's life. Fact: Lovenox is made from intestinal mucosa of a pig. You can't take it if you are allergic to pork products. Thank you, pigs!

17. Barbara, my oldest sister. Whenever I think I'm being crazy, I think of Barbara, and how she doesn't care what anyone thinks of her, she is just her fabulous, delightfully talkative, laugh out loud self. She is the original cuckoo, and I mean that in the best way.

18. Eric, my brother. I think of him so often lately, since Liam reminds me of him. Liam eating dog food, like Eric did. Liam being musical, like Eric . Eric has had a troubled life at times, battles with alcoholism, but when he plays piano, it is magic. I could listen to him play all day. He has crazy talent.

19. Donna, my middle sister. She is sensitive, kind, nurturing, and a wonderful momma. She's the one who made me that ring a few posts back. She says she is coming to visit in February. I can hope! She is kinda nuts sometimes, but sweetly so.

20. Marilyn, my youngest sister. Brody said it best this weekend when he explained to me that he gets confused about whether Marilyn is my mommy or my sister. She is my caretaker. And she hated me when I was born. I think she still feels guilt for the abuse she heaped upon me. What she does, I usually follow: horse back riding, tennis, jewelry making, moving to Colorado, having 2 sons. Huh. She's a smidge neurotic. 

Thankful: 8, 9, 10, 11, 12, 13 and 14.

8. Brodyisms. He’s getting more advanced. This weekend’s may have been my favorite. His nana gave me a geode, the kind you break open with a hammer to reveal the crystals inside? While looking at the crystals, he asked, “You know what’s another name for crystals? Your soul.” And he said the last two words with much gravity and import, and completely serious. Where does he come up with things like this?




And then this morning, when walking into daycare I exclaimed, “Aw man! I forgot Liam’s diapers!” to which Brody replied, “You’re going down, mommy.”



9. The internet. It was google into which I typed “Miscarriage Support” in 2004 and found the Miscarriage Support message board on IVillage,com. Which led me to the Recurrent Miscarriage board. Which led me to Dr. Beer. Which led me to motherhood.



10. Brody’s doctors and surgeons. From Dr. Rothenberg, who did Brody’s first surgery when he was 48 hours old to link up the end of his esophagus to his stomach, and actually told Jeremy that he was excited to do this kind of surgery on Brody since had never done one that small before, to the surgeon, Dr. Doug Hutchinson, who gave Brody thumbs, to our pediatrician, Dr. Jay Markson, who provides laid back, nonplussed yet excellent advice, who has a way with Brody that makes Brody want to see him every time we come downtown.



11. Friends. I am blessed with friends. One or two I’ve known since we were 5 or 6 years old. A few I’ve never met face-to-face. Then some that I am lucky enough to get to see regularly. And most of them, regardless of when I see them, I can call anytime, day or night. They support me, make me laugh, and make me want to be a better version of myself.



12. Cameras. So I can look at pictures of my loved ones when I am at work, and give my hairstylist a picture of what I’d like my hair to look like.



13. My sense of humor. Laughing is the only ab workout I’m likely to do.



14. One piece outfits, including footie pajamas. Something about them is so charmingly delightful. I cannot get enough of Brody, and now Liam, in one piece outfits. If I had my way, Brody would still be in one-piece rompers. I settle for pajamas with feet.

Thankful: 4, 5, 6. And 7.

4. My sister Donna makes jewelry, not like I make jewelry but with sodering things and hot things that melt silver. She made me a ring last year – before Liam was born - with each boy’s birthstone in it. I love that ring. I wear it for good luck. I wear it on those big days for me, and I wear it when I need a pick-me-up. I love that she made me something so unique and thoughtful.

5. Over the weekend, I had dinner with my circle of friends, just the girls. We had dinner and we were talking – all of us mothers now – about what we obsess[ed] over with our children. Height, speech, etc. I sat there and thought, with Brody, what did I obsess over? That he would die, that he would never find love, or happiness, that he would need a kidney transplant, that he would not be in regular class, that he would never learn to write or use his thumb properly. I’m grateful that none of that came to pass. Even if they do come to pass, they haven’t yet.

6. Speaking of which…. Brody had 14 surgeries in 3 years. He didn’t have thumbs when he was born. His throat didn’t meet up with his stomach when he was born. He had 2 surgeries the first week of his life. He wore casts for half of his first three years. And this year, this year he started kindergarten the first year he was eligible, when he was 4 years old. And we had a parent teacher conference a few weeks back, which Brody attended, and he read us a book. It was called “I can do anything.” I grasped my husband’s hand, and I just barely kept from crying.

7. My mom is coming for Thanksgiving. We were going to drive down to see her in New Mexico, and it would be a long 10 hour drive, but it would be worth it to see her and my stepdad. But she said that the driving was too much and she just bought a ticket to see us. Even though her and Jacques will not be together for Thanksgiving. And she’s staying for a whole week. I'm grateful for that.

Thankful: 1, 2 and 3

I tend to complain a lot. I find that trait deeply annoying in people who have so much for which to be grateful.


So I know it is corny and cheesy, but I’m going to write down those things for which I am thankful. Because in the final analysis, I have a lot to write.

On November 3, 2011, I am grateful:

1. That my husband can fix anything that breaks in our house, including the furnace. He googled the furnace model number, what was wrong with it, and found a video on YouTube about how to fix it. And then he really did fix it, and we had heat again!

2.  For Excedrin. My goodness. Divine.

3.  That daycare told me we had to keep Liam home yesterday. He wasn’t sick, they just thought he had an ear infection because he pulled on his ears on Tuesday and wouldn’t drink a bottle. Since Liam was feeling rather fine with me, we had a lot of fun together, just us two. We danced on the bed to Prince (he loves Raspberry Beret) and we took a bubble bath, and two naps. And we cuddled a lot. It was lovely and quiet.

Things I've learned - in no particular order.

Everything is connected.

It all adds up.

Life goes on.

Everyone should be backlit.

Brodyism

Me: "Move over Brody"
B: "Ow mommy! You just bonked your elbow in my EYE!!"
Me: "I'm so sorry! Are you ok?"
B: "WHERE ARE MY CHEERIOS?!!"
Me: "Only nice boys who don't yell get cheerios."
B: "Well, only mommies who don't bonk their elbows in my eye get nice boys."



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Random photos

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More Brodyisms

When we tell him something, that he already knows, he will, in this completely teenager-esque, annoyed, and above-it-all voice, say, "I know that." Except he's only 5, so it comes out as "I know dat."

He makes Liam laugh just by saying, "Watcha laughin' at?"

When Brody was born, I started calling him bubba thanks to my friend Linda who got me calling all babies "bubba" because I think it's something Australians do. When Liam was born, I called Liam bubba in front of Brody. Brody then asked, in a slightly unsure, smaller voice than usual, "Am I still your bubba, mommy?"

He steadfastly maintains that he will NEVER get married, never leave our home. I tell him that's fine with me but when he's 18 he has to get a job and earn some money. When I ask him what he will do for a job, he says he is a fire dog.

For Halloween, Brody feels that he can assign me my costumes. I am, depending on the day, either a Princess, a SuperPrincess, or Thor Girl. I'm not sure which I prefer more.

Streaming & Brodyisms

I’ve wanted to blog so often of late – and I just haven’t. I have so many things I want to remember.

Brody. Brody has expressed more about his limb difference in the last month since starting kindergarten than he has in his whole life. He has expressed that it is unfair that his hands are different, that he is sad about it, not the actual limb difference, but that people ask him about it. Our approach has been to encourage questions from others, get it all out there, ask questions if they must. But he hates that. HATES.IT.

I’ve told him that we can make his arm straight if he wants – the one he always comments on – he says no, he doesn’t want to. I tell him we love him just the way he is. And we do. Personally, after initially thinking when he was born that we’d do the lengthening procedures, I’d prefer he never have another surgery. He notices the difference not just between himself and others, but between his two hands, how one is straight and the other is not. He describes it. I just agree with him. I told him recently how he had surgeries to get thumbs, because he was talking about his new hand. I explained what the surgeries were. He had no memory. He doesn’t even remember Shriners’ Hospital and Mike and Sully. Which is kind of awesome. He asked me today if the surgeries hurt.

He loves kindergarten but lately keeps getting in trouble. He has developed this independent streak, that prevents him from heeding instructions from parents or teachers, because in his mind, he knows better. He got in trouble one day because he kept drawing the picture and the teacher told him to sit on the carpet in circle time. “But mommy, I wasn’t done drawing.” “Yes you were. The teacher said so.”

Liam. Liam is teething and will not sleep through the night. Ever. He has probably slept through the night 5 times in his 9 months. He takes a bottle though, usually close to a whole one. I don’t know. After a year, we let Brody cry it out. First night – 40 mins. Second night- 15. Third – slept through the night. Then we had surgeries and his sleep got screwed up.

Liam is sweet and smiley. Very smiley. And giggly. And when I let him, he will kiss all over Brody with the drooly, open mouthed baby kisses. Brody screams and I say, “Let your brother kiss him!” and he does, laughing. It’s awesome. Liam is terrified of the vacuum, and the blender, and the hair dryer. And the statue of liberty at Red Robin. He cries more during those noises than with the shots. Remember those shots? I have forgotten a lot of that. It’s lovely. He is crawling and trying to walk and pulling himself up onto things, like stairs. We have 3 staircases in our house. Liam will shake his head, left ear to shoulder, then right ear to shoulder. If I do it back to him, he will do it back to me more and laugh. He reaches his hands up for me to pick him up. And he sucks on my chin – maybe it’s a kiss? He has two bottom teeth, and one more coming in on top. He giggles when he kisses my chin. He will also kiss a picture of himself. He will also hold a plastic sword in the air while smiling and let Brody have a sword fight with him.

I miss my family. I want to visit Michigan but I have no money and no vacation. I miss my mom. Her brother passed away, and I want to see her so badly. Again, money and time.

Brodyisms.

Me: Brody, talk quietly, I can hear you all the way upstairs.
Brody: Well, I can hear you all the way in my room when you snore.
~~~~~~~~~~~~~~~~~~
Brody asked me about “Indians” and so we talked about the Native Americans and the Europeans and how they pushed the Indians off their land. I was pretty impressed with him, until he said the Indians should have just used Thor’s hammer to fight the Europeans.
~~~~~~~~~~~~~~~~~~
Brody: Mommy, I miss you even when I’m WITH you.
~~~~~~~~~~~~~~~~~~
Brody: (upon seeing a picture of me in my wedding dress) Mommy, you’re beautiful
~~~~~~~~~~~~~~~~~~
He still says pesketti for spaghetti, and ly-bary for library.
~~~~~~~~~~~~~~~~~~
Brody: (when told he’d have to wait to go outside until I was done feeding Liam) YOU ARE BEING INCONSIDERATE! YOU ARE BEING SELFISH TO YOUR CHILD!
~~~~~~~~~~~~~~~~~~
Brody: (watching Liam laugh) Liam likes being a baby.

First day

I didn’t cry today. I teared up.

As we were standing outside waiting to go in (the kids go in themselves) I crouched down and told him how much we all loved him, and how proud we are of him, and how much fun he is going to have. He asked me if I was going to cry. No, I said. Then he pushed my sunglasses down my face to check. I held it together and he smiled.

This weekend we were driving somewhere on a boring errand, and he was so helpful and positive and sweet. I looked back at him in the car and this exchange followed.

Me: You really are a good boy, Brody.

Brody: Even though my hands are different?

Me: Especially. I love your hands. And you will realize when you’re older than being different is a good thing. You won’t want to be like everyone else.

Brody: Will my hand be straight when I’m older?

Me: Well, no. I mean, we could make it straight, but it won’t automatically be straight……Do you want to make it straight?

Brody: No. I like it dis way.

His new teacher wanted to know if he was comfortable talking about his hand to the class. He said he was. The idea is that the teacher raises it the first day, then it's not an issue later on.

The school called me around lunchtime saying that he had thrown up. Turns out, he had gotten hamburger stuck in his throat because of his narrow esophagus. I know this because he was hiccupping. Do all TEF kids hiccup when the food gets stuck? It happens periodically. I don’t know if we need another dilation surgery or not. It’s been a couple of years.

I cannot wait to see him tonight. I feel like it’s been a week since this morning.

Wisdom hurts

I just had a lovely weekend away, in Vegas, with 3 good friends. I missed the boys like crazy. I came home, no thanks to flight delays, and Brody said, as we were cuddling, that he wished we didn't ever have to go to school or to work ever again.

Then it hit me.

He starts kindergarten in one week.

And my baby is gone.

And a wave of regret and sorrow crashed over me like I haven't felt in a long time.

I should not have been at work these years of his life. I can't believe all the hours and days I've missed of his little life while I was at work. And he was growing up. And now in one week he starts elementary school and I'm never going to get that time back and I should have stayed home we should have figured out a way for me to be home with him all this time and I can't believe I missed everything I missed and I can't believe I didn't realize before now, before there's only week left. And where did the years go and why didn't I spend them with my son instead of at work and what will I do how will I make that up to him?

One week. Why did it take me so long to see?

It's that time of year again....the letter to parents

Brody starts kindergarten in 12 days.

I'm dusting off the annual "Letter to parents", as I have dubbed it on my computer, to print and leave with the parents of his fellow kindergartners. I did not send the letter to the soccer parents, or the swim parents, but I think kindergarten - with a new school - is fair game.

It's funny how the letter changes over the years. That could probably tell something of me more than him. We went to the summer picnic of the Colorado UnLimbited group this past weekend. I think it's a good age for him to go - he's noticing his differences, and talking about them. As in, walking up to people and saying, "Look at my arm! See how long it is?" or, at a carnival, telling the guy running a game he wanted to play, "My arm isn't that straight." These comments are not in response to anything said to him. Luckily, so far everyone I've watched him say it to has acted nonplussed, and uninterested OR has said words to the effect of, "Wow, that's cool you get to be so different." Clearly this world is not the 1970's that I grew up in.

We were at the grocery store a few weeks ago, and Brody was in rare, entertaining form. He was riding on the end of the cart, hanging on while I pushed. He was commenting on how much he loved all the fruits and vegetables "MOMMY!!! Look! MUSHROOMS!!", and being my helper, and he'd drop the food into the basket with great flair and showmanship. We had people laughing at his antics within 5 minutes of our foray into the fruit section. And I had no fewer than 3 men talk to him or me. "Are you helping your mom?" etc. One guy asked, "How old is he?" I answered, "Almost 5," and he said, and Brody heard, "He is hysterical," and chuckling, walked past us. I looked at Brody and said, "Well, that was nice of that man," and Brody responded, "Yeah, and he didn't even see my arm!" What does that mean?

I digress. Can a 5 year old gain perspective? I don't know. But I can, and seeing the other kids and adults live so well with their limb differences at the UnLimbited functions certainly provides me confidence and hope.

Anyway, here's the letter. It seems really long to me now. I wrote it when I only had one child. (Ha! Maybe that's it.) What parts can I cut out? Help!

We’re writing this letter because, in the past, some of Brody's classmates have asked him questions like “What’s wrong with your arms?” We want to help everyone be comfortable with his limb difference.

Brody was born with bilateral radial hypoplasia: specifically, he was born without the radius bones in both forearms and without thumbs. Brody has had several surgeries to try to help straighten his arms (which do not like to grow straight) and to move his index fingers into thumb position. We are proud to say that he now has three fingers and one thumb on each hand. In an effort to satisfy natural curiosity, I'd like to tell you a little bit about Brody.


This is the way Brody was born. The doctors do not know how or why, but the latest research shows that Brody’s arms were probably growing this way approximately 35 days into the pregnancy. We’ve had luck explaining this easily to kids as, "That's the way Brody was born. His arms grew that way when he was in his mommy's tummy." Some children hear the physical explanation and go about their business without second thoughts. Sometimes, though, kids might want more details.


We’ve learned that the easiest way to help a child understand something like this is to remind them how we are all different from each other. We have had success talking with kids by pointing out the obvious differences: hair, eyes, glasses, height, skin color, size of feet, etc. The list is endless. It's also a good idea to explain that Brody’s arms are not broken, painful, shameful, sad or frightening. They are simply different.


While Brody’s arms and hands are unique, Brody doesn't consider them “special” and we do not refer to them as such. Sometimes children will also be concerned about how Brody will do certain things with his unique hands. I usually remind them that he does all the same things they do, just in different ways. Brody has never had radius bones and 10 fingers, so he learns to do everything with what he has.


Brody adapts easily. He feeds himself, likes drawing and playing catch, loves playing tennis, lacrosse and basketball, and wants to have sword fights on a daily basis. There are tasks he gets frustrated with but most of the time he takes challenges in stride and manages creatively.


We just wanted to let you know that we welcome conversation about our son and we look forward to any questions you or your children may have.

Reducing exposure to sadness

Do you ever just not engage with a story or a person because, frankly, it's just too sad? I have a lot of connections to people with Vacterl children, and a lot of those people are connected to other people with sick children, and then my friends who know friends where the parents of young children are sick and.....I just can't anymore.

A little girl I followed, who had a form of Vacterl, died recently. I cried for hours over that little girl; she was within a month of Brody's age. It wrecked me, and I'm not even close with her family. I have to make a conscious decision to stop. I am subscribed to probably 10 caring bridge sites and 15 carepages. I'm friends on facebook with an inordinate amount of people who have serious illnesses in their lives. Except for, currently, one person, I just can't participate in supporting them. I unfriended a woman on Facebook because all she would post about was her dead child. I mean, I didn't know her except online, and through someone else, and she's a lovely person. But I couldn't take seeing her posts.  I'm going to hell.

And it's not just illness. Tragedy too. Like a friend who has a friend whose child got run over by an ATV, or another friend's cousin is terminal and has a young child.

These are my worst fears. And I cannot stand to know about them. It brings me down to a place I don't like, and I can't process it. I think in the age of internet, so much of the information that we can access is informative and it can be life-changing.  The support one can receive is awe-inspiring. But I have to protect my state of mind, right? I mean, I just cannot support and be involved with every sick person I know about. Right? Or am I bad person?

Even if it makes me a bad person, I am still limiting my exposure.

8 months ago today

December 2, 2010

Today:

(I know it's sideways. It's not working)

Questions again

From Brody:

Why do trees have leaves?

Why do birds eat worms?

Why do girls have long fingernails but no penises?


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The question I was waiting for

So tonight, during questions, the semi nightly ritual Brody and I do, he asked me why he only has 4 fingers, and why his thumb is on the wrong side (it's not). He said, "dat's not fair."

Over the following minutes, i stumbled through telling him everyone is different, that's how God made him, and that he can do everything everyone else can. I told him some people only have one arm or one leg. He asked me "how do day walk or hold stuff?" I told him, "they figure it out. Like you figured out how to draw and eat. They just do."

Then I kissed his hand and said "I love this hand," and I told him I love him if he has 4 fingers or 10 thumbs. He got really goofy, not his usual serious self like he normally is during questions.

Then he asked me why T. Rexes are so mean. And why the moon doesn't shine during the day.

It's amazing to me that I have completed 19 years of education, and I still had no good answers tonight.



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Sleep deprivation is a form of torture.

I don't sleep anymore because Liam is teething. He's 7 months old. It's still weird to me that I have two children, two boys. How did that happen? I mean, I know how it happened, but I am still coming to terms with the fact that it did happen. Huh.
J and B went to visit family in another state. When Liam and I picked them up from the airport, do you know what Liam did the whole 45 minute drive home? He stared at Brody in the other carseat, giggling and laughing, the kind of baby laugh where he inhales for part of it. I think Liam missed Brody and didn't know where he went to. He laughed the whole rest of the day.

He still doesn't sleep though.

Two things: I post Brodyisms here, and on facebook, quite a lot. People always say "you should write a book" - so here's the thing. How do you write a book about what your child says? That's actually entertaining and interesting to read, I mean.
Second thing, my dear friend who I have known since kindergarten, Megan Abbott, wrote another book. I think it might be a masterpiece. It's getting spectacular reviews. I really, truly recommend that you read it. It's called The End of Everything. You can read the first chapter of it here. It's that rare combination of sublime writing combined with a chilling, unable-to-stop-reading plot. I can even get your copy autographed by the author.

Hand crab

We've been hearing for two days about this "hand crab" that Brody made. He told us his hand crab looked different from everyone else's.

Finally we picked it up today. It's a painting with hand prints. Brody's looks way different. But he was saying over and over proudly that his was different from everyone else's. I, of course, told him that his was awesome and the best one. And it is.

I chatted with a couple teachers on the way out the door, letting them know we had located the infamous hand crab painting. One said to me quietly, "He was so sad at first that his hand crab looked different from the other kids but then we worked with him until he was so proud of himself."

It breaks my heart that he felt that way. And that he was sad and hurt. And it makes me so grateful for those teachers. But mostly it just makes me want to hug him for the next 14 years.







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For P

This is for P. She knows who she is.

I'm BUSY. Want to know why? Well, it's called soccer. And I am the idiot who agreed to be a volunteer coach for Brody's soccer team. One weeknight practice, and one weekend game, per week, since April, has seriously cut into my free time. This was probably a greater time commitment for me than other coaches because I know as much about soccer as Liam does. In fact, imagine a baby who can't sit up on his own trying to tell six 4 year olds what to do, and you pretty much have our practices. The only thing I'm really good at is using that whistle.

Between looking up drills online to keep the kids interested during practice, and the whole, you know, parenting of a new baby, while working outside the house full-time, I fall into bed at the end of the day too tired to think, let alone ruminate on life, let alone complain, on this blog.

On the agenda for the next week:
Liam is clot free. That's a big one. No shots for about 2 weeks now. All his bruises have healed.
Brody's talking about his arms.
Brody and Jeremy are going on a trip to Oregon, leaving me and Liam to the bachelor life for 5 days.
On how to handle a physical difference when meeting new people - wear clothes to make it less noticeable?
Secrets I've learned about coaching soccer while knowing absolutely nothing about soccer OR coaching

Questions

Most nights, while Brody is in his bed, he says, "Mommy, wanna do questions?" Then he asks me, or I ask him, random questions. So, tonight, he asked me the following:

Why do we put bad guys in jail? (and what if they get a key to get out?)

Why are bookshelves so tall and not 4 years old tall?

Why do Spider-Man and Venom need webs?

Also, Liam turned six months old today. Six months!! I can't believe he is so old, so young still, or that I lived a day of my life without him.


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Not all bad

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Where have I been?

Where have I been? Nowhere good. But I can't blog about it. You should see my journal though. Ha!

Next appointment for Liam is May12 to check his clot size.


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Ancestry

My sister Marilyn wrote this email to me:

Just read your blog... You are tough.  Maybe because you have to be, but that is the same as Mom and Dad.  Dad had to grow up in the [Great] Depression.  Mom had to hide under tables during world war II [while being bombed by the Allied forces].  You have to give your son shots.  And if tequilla helps numb things for a moment, then so be it.

She reminded me from whom I come.

I got this.

Sláinte

Tonight I couldn't do another shot. Not of liquor, but of Lovenox, to Liam.

I made the mistake of looking at him when he's screaming when I give him the shot. Usually I just watch his legs, and make sure the medicine is going in. Yesterday I looked at him.

He was looking right at me. Staring at me. Do babies have thoughts complex enough to register what he saw?

He recognizes the shot itself, the needle.  If he sees it, he gets agitated and scared and kicks his legs even harder and starts to cry. Now I prime the needle with my back to him. And tonight, after a rough shot this morning, I couldn't do another shot.

You know what's worse than giving your 4 month old a shot into his thigh? Hearing him scream from the other room while someone else does it. That sound is louder than if I was holding him. Why is that do you suppose?

So now I've decided I have to do it. I have to be the one to give him the shots, even if he stares at me and knows it's me.

I remind myself that there is a cure, there is a fix. I remind myself that it's not as bad as having cancer, which two people close to me - very close in relationship and within 3 years of my age - currently have. I remind myself that we have support and love and my SF girls and my friends who walked in instead of walking out and my sister Marilyn is trying to get us free medication through an organization. I remind myself that he's 4 months old and I don't remember when I was 4 months old or even 12 months old so he won't remember looking at me.

But I'll remember. I'll remember him looking at me and I'll remember him screaming and I'll remember the times I fucked the shot up and he kicked it out and I had to re-shoot him while he was screaming and kicking. And I'll remember how once, one time I did a 90 degree angle instead of 45 degrees and I put that bloody needle through his skin twice at the same time, like a sewing needle, and the medicine shot out onto my arm while he was screaming screaming screaming. I'll remember each and every sob and scream and how his tears taste and how when I hold him after the shot, he still shakes and cries as loud as he can because me holding him isn't enough to make the pain and anger go away even just a little bit.

And that is why I have instituted a new policy at Casa Liam. For every shot he gets, I get one too - except mine is tequila. It's not healthy, it's not a good coping mechanism, but it tastes good and numbs it for a second or two.

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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Melancholy

It's quiet. It's Friday at 1040pm and everyone is sleeping except for me.

J has the flu. Neither of the boys do. I have laryngitis still.

But it's quiet in my head too. Not peaceful, but quiet. Tired.

This was my first week back to work. Eight weeks old and Liam is at daycare all day. He doesn't seem to mind, he smiles all the time, but I mind.

I don't know if it's because I turned 40 in December, I just gave birth, it's winter, or something else, but...I'm down. What's that word? Anti climactic. Life is anticlimactic these days. I don't know why I'm surprised by this, because you can't really beat "free trip to France" and "miracle baby" in a calendar year. And I didn't expect to. But something is definitely not.... right with me.

It's like everything is exactly the same, but absolutely everything is different.

Work is a powder keg ready to explode. But I'll tell you what, I am blessed there too. With coworkers, if not bosses, who believe in me, stand by me, and pull me up when I'm down. That's one thing about trial lawyers, that us vs. them mentality can really circle around you and make you feel better.

But .... 20 years from now will I care that I went to work? Do I EVER look back on a case and think, yeah, that was worth my time. By the time I arrive on scene, my clients are already getting sued, and they are stressed out, angry, and worried. At the end of the case, even if everything goes well and in my clients' favor, they all think, and many say, "No offense, but I hope I never have to work with you again."

Where's the fun in that?

My mom says to remember that my job is not just to argue, but to fight for justice. Meh.

I am burned out. And I think I realized that just before maternity leave, and I really embraced it during leave. I got a taste of NOT working. I got a taste of being .... just me.

But then everyone hates working, right? No one really adores their job, right?

When I went back to work with Brody, it was almost a relief. I could talk to adults, and think just about myself for a few hours. With Liam... so much is different. With  Brody he was so small (3lbs) and so our focus was on growing him, making him bigger, as fast as we can. The smallness of him was not really a blessing. With Liam, the smallness of him is one of my favorite things about him. And I think he's huge, until you sit him next to the giant Addison, age 4 months, at daycare. But I want to soak his smallness into me a little while longer. I want to submerge myself in my boys and our home. I do not want to rush in the mornings, and rush at night, and wish I had more arms to carry the dirty clothes, car seat, blankies, and coats back and forth from home to daycare. I just don't. And I never felt that way until now.

It doesn't help of course that at my job, you are only as valuable as your last mistake, regardless of the hundreds of thousands - millions? - you have saved the clients. The universe could not underline the question better: I'm giving up this for that?

But of course, there are bills to pay. And I make a pretty good living. Not as much as a lawyer working in private practice, but then, I see my kids much more than lawyers in private practice.

The only way I've managed to survive this week is to think to myself, this is temporary. This job, this frantic pace, this failure to stop moving.

Liam smiles with his whole body, just like Brody. They smile at each other for no reason other than they are there, in the same space, usually both on my lap. Brody told me "Me and Liam are the best brothers ever." Liam sleeps a lot and eats even more. Usually, most nights, he gets up once at an obscene hour, then again after 530am. He's getting enormous rolls in his thighs, and a big belly, and cheeks that hang off his face. He smiles in his sleep all the time and when you give him a pacifier, his fists and arms and legs all jump, like they are trying to leap into the pacifier.  He nuzzles my neck with his face, and I think I will die of his cuteness when he roots for milk with his mouth.

And it seems kind of wrong that I give that up 10 hours a day to go earn... money. Is that the price I put on Liam and Brody? Is that what they are worth? Or my experience of them is worth?

It's quiet. It's Friday at 11:00pm and everyone is sleeping except for me.

Secret smile

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Location:On the treetop

Brightness

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Brodyism with best picture ever

Me: Brody, don't step on the dog.
B: I'm not, I'm just petting him wis my socks.




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One month

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