Thankful

Thankful for Dr. Alan Beer, RIP, reproductive immunologist, without whom I would not have my beautiful, extraordinary son.

Thankful for Lovenox, a blood thinner, and steroids, and progesterone, and IVIG, all of which I am convinced helped Brody to grow better than he would have without them by stomping out my immune response to pregnancy and increasing blood flow to the placenta.

Thankful for every nurse and aide who was kind to us & cared for my boy throughout 14 surgeries in 3 years, and to every anesthesiologist who kept him breathing and asleep.

Thankful for Shriner's Hospitals, Salt Lake, who gave my son his thumbs, and helped his hands to function, especially Dr. Hutchinson, aka Hutch.

Thankful for my son's other Doctors, who have saved his life (& ours) a few times at Presbyterian St. Luke’s and Children’s Hospital Denver: Dr. Rothenberg, Dr. Kramer, Dr. Furness, Dr. Markson, Dr. Wilkinson, Dr. Ketch.

Thankful for antibiotics, especially Primsol, which for 2.5 years scared away any urinary tract infections that could have damaged my son's only kidney.

Thankful for my husband, who has cried with me when scared, made me laugh when sad, and loved me through it all. And who is cleaning our house right now.

Thankful for blogger, which allows me to write these posts.

Thankful for Homeaway, which has given my family the trip of our lifetime.

Thankful for my friends and family, who have waited with us, prayed with and for us, given us money, and made sure we know we are loved, all the while making me laugh.

Thankful for you, even if we haven't met (yet).

Update - Five Skies

Thank you to one and all who have participated. The response was amazing.

Including a co-worker I spoke to this morning about it, as we were discussing something else.

Thank you.

Care package en route. You can still donate. There are more families.

No tax deduction, but 100% of your money goes to support a family with a very sick child.

Inundated - let's help - Five Skies

I know a family who is going through a very very bad week with their son, who has a similar diagnosis to Brody, but who is sick, very sick, with many many more hospitalizations (think most of his life). His family is hanging on by a thread, to their sanity, and hope.

I just heard of another little boy, Dax, who is 2 and has only weeks to live, so his family and his neighborhood are decorating with Christmas lights early.

It's gotten to the point that I feel nauseous when I see these things. I think the nausea is telling me to get up and do something.

So, I'm doing this.

Five Skies is NOT in any way a 501(c)(3) foundation. It's not approved by the IRS. It's an idea.

But if I have to wait for the IRS to approve it, it'll be months, perhaps even a year.

If you have $5 or $6 or $2 to spare, please donate to help the families of these children.

There is nothing worse, nothing, than watching your child suffer.

I know money will not fix these children, but it might help ease the stress and terror of the family, maybe even just let them know that someone cares.

It won't count as a tax deduction, you are not giving to a nonprofit, but every dime you give will go to the family of a sick child.

I know no one has money to spare, so I understand. I just. . . I just cannot let this go anymore. It's not fair, it's not fair that these families are torn apart, that mothers cry for their sick child, that little brothers and little sisters grow up in hospitals. . . I'm so sick of it, and I'm getting angry, and I need to channel it to something positive.

To all who donate, you get a guaranteed accounting of where and to whom your money goes.

Special thanks to Sarah, who, days before she gave birth, provided the mock up graphic for Five Skies.

Weekend away & the first parent teacher conference

Vail.

If you take about three seconds to say that word, that would sum up our weekend in Vail.

Exhale.


Ski season starts on the 24th. This translates into hardly any people, and half off every restaurant in town.



I've said this to everyone else I've talked to about Vail, so I will record it here. The sidewalks are heated. As a result, even when snowing, the cobblestone streets are free of ice or snow. It is how I envision the North Pole.



Vail.



I got a massage, which was 30% off, and my neck and shoulders were in such a state that the woman climbed onto my back, put her knees in my bottom and worked out some knots. Of course, she only weighed 100 pounds or so, but um. . . let's just say I need to stretch more in future.



While in Vail, my friend told me of a tradition her mom did for her that I decided to do for Brody starting today. She bought each of her kids a Christmas ornament each year, and kept them with dated in boxes. When her child was grown, she gave them the ornaments for their tree. Heirlooms to start on your own tree. I thought that was lovely. I bought Brody an ornament: a star with a snowman wearing a cowboy hat. It's hanging off his rocking horse until we get the tree up.





When I arrived home, we built a snowman and sledded down our front lawn.

Please note that Brody is wearing his father's hat, and clutching his beloved snowball. He doesn't even get mad when you throw one back at him, unless it lands in his face.

*~*~*~*~*~*~*~*~*~*~*~*~*~

This morning we attended the first parent teacher conference ever for Brody Alexander.



In sum, he's doing wonderfully well. He is a sweetheart, they say, and tries really hard. No worries on the speech/language/reading front, and none really on the motor skills, except that he is delayed.



Improving, however, which is what I have trained myself to hope for and expect. Like when he didn't walk until almost 24 months, I just kept looking to see whether he was improving on mobility.



I learned, however, that most kids his age put on their coats by themselves. Huh. Not having other children, I don't realize things that "most" other kids his age are able to do. Like, going to the bathroom themselves. Because they can, apparently, take down their own pants. Huh.



They told us about his writing. Lines are good, circles are good, spirals not so good, but "even with his handicap," he is about where he should be for a 3 year old.



Yeah, she said handicap. I didn't say anything. The woman is sweet, I really like her, and I just have to get over my aversion to certain words. They don't treat him differently, it is just a word.



I tried to channel Sarah's mom. I actually thought, "What would Sarah's mom do?" The answer: let this one go for goodness sake.



We asked about socializing. They say he is shy in bigger groups, but with 8 or so, he is happy to participate.



We asked about friends. They say he gets along really well with everyone.



We asked about his difference and how the other kids view him. Bullying and teasing is our biggest fear in school. They say the other kids noticed his shorter arms at first, asked about them, and the teachers explained we are all different.



They say there is another kid who has a prosthetic leg. The leg was a topic that the kids initially discussed, the kids looked at the leg openly (the boy pulled his pant leg up so everyone could see), and that was the end of it.



Relief.



They explained that, really, everyone just accepts everyone else, and it's not a "thing." They said if anything, the other kids want to help Brody do the things that he has trouble with, to the point that the teachers have to tell one girl to back off a bit so Brody could learn to do a new skill or two.



I think, at some point, helping can be patronizing ("oh, look, you couldn't possibly do that, let me do that for you") but at this point, when a 4 year old girl wants to help a 3 year old boy work a pair of scissors, it's just sweet.



I asked them if they believed Brody knew he had different hands, because he insists to me that he has 10 fingers. I'm just fascinated by Brody and what he perceives and understands. It doesn't matter really, but I'm curious. The answer is, we do not know, but it appears not. At least, not that he can verbalize.



The teachers were sort of upset that they had not realized all of the times that they say things like "Ok, hold up your fingers, count to ten." For the record, Brody believed he had 10 fingers before he started there, but the preschool is now aware and will address if necessary. I told them we do not care if he thinks he has 8 or 10 or 20 fingers, really. Again, I'm curious.

Goals for the next few weeks: have him write and recognize the letter B, improve scissor usage, learn to put on coat by himself.

I missed him like crazy. His smile when he saw me reached all the way into his eyes and submerged his whole face. "I love you, mommy," and sounded almost shy while he squeezed me in a hug.

Exhale.

Brodyisms

Jeremy walked into the room, wearing a muscle shirt.

Brody: Daddy, you look like a girl.

Jeremy: I look like a girl?

Brody (giggling): Yeah, daddy, dats a girl shirt.

***********************************

Putting Brody into the car. He notices the gas tank cover.

Brody: Dats a square mommy.

Me: Yes, it is.

Brody: See dat mommy? Say "skw."

Me: Skw.

Brody: Now say "air."

Me: Air.

Brody: Now say "square."

Me: Square.

Brody: Good job, mommy. You say dat perfeckly.

Me: What shape is mommy?

Brody: A . . . rectangle!

Me: Hmm. . . a rectangle. That's good.

Brody: My head is a circle.

***********************************

We play hide and seek, and family wrestle, most nights in our bed or Brody's bed. Brody is the worst hider in all history. He giggles, he moves, he's loud, half of my body can be sticking out and he thinks we are hidden completely under the blanket, he falls for every trick (Where are you Brody? I have a toy for you? "I'm here!!!").

Last night, Brody and I were hiding under a blanket in his bed. Jeremy was supposed to "find" us. Instead, he came into the room, wearing a sheet and a gas mask (I have no idea). Brody became TERR.I.FIED.

Jeremy instantly stopped and said, over and over while hugging Brody, "It's just me, Brody, it's just daddy."

In the 10 or so hours since then, Brody has taken to wearing his knight helmet, "scaring" me or Jeremy, then removing his helmet, and saying, "It's just me, mommy, it's just me."

When he asks us if he scared us, if we say no, he says, "A little bit?" hopefully, until we answer yes.

***********************************

Since making jewelry yesterday, I had my supplies out.

Turns out, Brody loves making jewelry.

It's a little hard because the wire is thick as thread, but I found some plastic beads.

He loves the jewelry. He kicked me out of my chair at the jewelry desk.

Then he said, "I have to make joowee mommy, it's my work. Dis my job."

Is it really child labor if it is also occupational therapy for the child?

***********************************

The day of me was lovely. Didn't nap, didn't overeat. Watched Dial M for Murder, The Maltese Falcon, and made lots of jewelry, cleaned and made dinner. I could do that every day.

Social experiment update

She paid.

The Craigslist woman.

And she sent an email thanking me for the 3 baby frames I left (new, unopened, unused) on top of the changing table.

I actually had a friend email me about whether she paid or not. It seemed like a lot hinged on this stranger's conduct. I think we are all a lot more cynical than we realized.

Other news?

Yesterday I sent Brody's daycare teachers a bouquet of chocolate covered strawberries. When I picked him up last night, she said they cried when they got it. See? We are all apparently
surprised at kindnesses. What does that say?

Today they did the first transfer from preschool (who also loves that daycare now) to the daycare. They said Brody was not happy, because of course, Miss Melody did not pick him up. Miss Melody is Brody's teacher and, apparently in his mind, girlfriend. He loves her and has told me for three days that SHE was going to pick him up from the preschool.

I'm the recipient of a 2.5% paycut starting next year. But at least I have a job. I'll deal with that later. 2.5% is not that much. Hopefully we won't notice.

I'm trying to get my 3 sisters to start an Etsy shop with me. One makes beaded jewelry (like me), one makes silver and gem encrusted jewelry, and one paints and sketches. All beautiful.

I'm going to Vail for the weekend with a good friend. It's not open for skiing yet, so we got a ridiculous deal at a place that, a week later, I could not afford an hour in, let alone a night. No skiing. Just. . . being. And perhaps a cocktail or two. She's getting a massage. I'm reading and napping. What am I reading? This book. Megan is my best friend and a beautiful writer and author. Josh is her husband. His book is extraordinary.

Tomorrow is a day of me, at home, for Veteran's day. I'm making jewelry all day in an effort to prepare for a jewelry show on Friday. Here's hoping for productivity.

Looking up and up and up

Grocery shopping Saturday:

I walked into Brody's daycare Thursday night.

"You," she said. "You, I need to talk to you."

"Yes?"

"Kim texted me right after you talked to her. We decided that is just unacceptable. Brody will not be leaving us. We love him too much. He can't leave. We'll pick him up."

"What?"

"We'll do it. Just give us directions, and we'll give you the names of people who will do the picking up, and that's that."

I got teary eyed right then and there.

How much extra each week?

Nothing extra.

Starts tomorrow.

In other news, I'm doing a social experiment.

I'm selling our changing table and diaper champ on Craigslist.

A woman wanted to pick them up today, during the day. When we are not home.

I left them outside, along with some baby-themed picture frames we never opened. Asked her to put the money for the items in our mail slot.

This is completely contrary to my lawyerly nature, and general cynicism.

Even if she doesn't leave the money, I do not believe I will be upset. If she needs them that badly, it's not the end of the world.

But seriously, a few years ago, I never, ever, would have done this sort of thing. Honor system with a stranger?

I think I'm mellowing.

Finally, is it me?

Or are sunsets getting prettier?

Behind our house this weekend:

Things are looking up

It's been a difficult few weeks. I decided to give up fighting it all.

Today Brody again missed preschool. I told the preschool the truth: we are having transportation issues. We can't pick him up to take him to daycare so he doesn't go and that we are looking at other daycares.

The administrator was so nice. She said she knew of one, the one we had looked at. I said we had looked at that one, but it wasn't as good as our current daycare, but we were probably going to switch anyway. She said she goes to school with the director of the possible new daycare, and she knows, and she is making dramatic changes over there. That made me feel better.

Then I called our current daycare. I said we might have to give notice of leaving, and explained the reasons why. I told the director we were heartbroken at the idea of Brody leaving because we love them. She said she is heartbroken too. I asked if she knew of anyone who could do the transporting twice a week? She is checking it out.

That made me feel better, too.

Jeremy got his license in the mail. And then he got another license in the mail. Thanks DMV. Is that an admission that the cancellation was wrong?

Brody had his 3 year well-check visit at the pediatrician yesterday. I brought him to my office first, and he was in rare form. Dressed as Spiderman, shooting webs at my co-workers, hugging my co-workers, it was fun. Then at the pediatrician, we had a surprise waiting.

Apparently, our pediatrician had a stash of H1N1 and seasonal flu vaccines. They hold them for the high risk of the high risk population. Being 3 is one thing, being 3 with only one kidney is entirely another. So we got the vaccinations, and I cannot tell how you relieving it is. We have to get the booster in a month.

He also checked Brody's blood pressure. High blood pressure damages kidneys. Brody has never had it, but it needs to be monitored. Brody would not stay still enough. But we got a pretty good reading, and it was good.

But then the doc said that the "poor man's" measure of kidney function is really whether a child is growing.

And Brody is growing.

Three inches and six pounds in one year.

He is in the 40th% for weight (he has never been that high) and the 75th% for height. Estimating he will be 6ft, 1in when he is an adult!!!!!

It was a very good day.

I took a leap of faith and booked this apartment in Paris for our trip in May. The owner, Isabelle, was lovely at the start of our email correspondence, but then I told her about how we won the contest. She read the press release about Brody and our struggles thus far. She wrote back and revealed that her sister had kidney problems until she was 13, and got a new one. She said they spent the majority of those 13 years in hospitals, so she knows how difficult it is. I already liked her from our emails, but now I know this was THE apartment we are meant to rent. And her mom lives 50 yards from the apartment. I cannot wait to meet her as well.

That made me feel much better.

Then this morning, Brody climbed into our bed. It was 5:30am. I told him it was still the middle of the night and he had to sleep. Because it feels like the middle of the night at 5:30am.

He was quiet for about 2 seconds, then started giggling.

What are you doing, Brody?

(giggling) I'm tickling myself.

Tickling yourself?

(giggling still more) Yeah, in my armpit.

I looked and in the pre-dawn light, he had one arm raised over his head, and he was, in fact, tickling his own armpit.

That made me feel the best of all.

Guilty. Liable. Wrong. Felonious. Culpable.

These words are all synonyms.

And describe how I feel quite perfectly at the moment.

It's been two weeks since we did a Tuesday or Thursday transfer from preschool to daycare.

I did one today.

Brody was at first so happy to see me. Grins. Dimples dazzling. Running into my arms.

"Hi mommy!" squishing hugs.

"Mommy, I wanna go home."

I know, Brody. I wanna go home too. But you get to go to [name of daycare] today! And see all your friends!

Crumpled face. Tears. Sobbing.

"Mommy, I wanna go home!"

"I don't wanna go to school. Peez mommy, peez I want go home!"

My heart feels like his face.

Crumpled.

I tried bribery.

I'll bring you a treat, Brody.

"Mommy, I wanna go home. Peez I can go home? Peez?!?!"

I hugged him a lot between the preschool, the car, the daycare.

"Daddy misses me, mommy. Peez no school today?"

Daddy does miss you. I miss you too, baby, but we have to take you to school because mommy and daddy have to go to work. I'm sorry sweetie. I'm so sorry. All your friends miss you too, sweetie. Like Monty, Dylan, Zoe, Ryan, Noah. They all are waiting for you at [daycare].

Hugging me fiercely, muffled into my hair, I hear, "I wanna be wis you, mommy."

I can't do this anymore. He loves his daycare. He truly does, and the teachers adore him. We walked in and they got his naptime mat and blankie ready. He leaves my arms calmly and passes right out on his mat, with his blankie on him.

But I seriously can't do this.

He only has problems when I do the transfer from preschool to daycare. It is too much to ask of him to be okay with seeing me, in the middle of the day, and have me leave him twice.

We looked at the other possible daycare this morning, before this episode.

It's not as nice as the one we have. It's in a church, which is not our church, but they seemed nice. A few of the kids he has known from other daycares when he was little little. The kids were happy and orderly. Teachers normal. Outside play area was awesome. Licensed by the state; I've seen the inspection reports, it's all okay.

And they would pick him up from preschool and take him, with his classmates, to that daycare. For $120 less a month. And it's 10 minutes closer to our house.

But I can tell it's not as good a daycare as the one we have. The facility, for one, is just a big room that is "multi-use." No actual rooms divided by age. Smaller than the center we're at, seemingly less organized. Less professional.

And they said, "So you said he has some disabilities?" Um.... no. I said he has a limb difference. That made me not like them, but it IS a fairly innocent, and relevant, question. But it got my hackles up.

But I can't repeat today. I can't do that to him. It's demanding too much of my little boy. And I will just come to work one day and quit if we don't figure this out soon.

And if we do have a pay cut, I may reduce my hours even more anyway and go to some kind of part-time schedule. One of my co-workers does that; she works 4 days a week; a 20% pay cut.

But it would be so nice to have more time with him.

My poor baby. I'm a terrible mother.

It might just be genetic? Oma-ism. . .

I sent this email to my mom, Brody's Oma:

Last night we were getting B ready for bed in his room. He was putting his toys away, and suddenly found his toy phone. He said very seriously, "I gotta make a call. I gotta call Oma."
Then he "called" you, and told you he was going to be Spiderman for Halloween. :-)

Then my mom emailed me back:

How cute, I take this just like a real call. I told him that his costume is very cute (I saw the photo) and that Spiderman is one of my very favorite costumes because he is a very good Super Hero.
Love you,Mom