Autism

Spunx has autism.

I give up

See above.

Movement

I'm over here now.

http://nicaintheafterlife.blogspot.com/

Mama died

The hospital called. Mama isn't expected to last the night.

Please pray

Waiting Room Etiquette

So today, I'm changing Spunketta in the hospital waiting room. (They call it the solarium. I don't know why.)

It's a little space with chairs and couches just off the elevators, and away from the patient rooms.

Anyway, I'm watching the TV (because there has to be a TV, right?) out of the corner of my eye as I am changing the squirming Spunketta, (and I am RIGHT in front of the TV, okay?).

And this fella walks out from the patient area, talking on his cell phone. And without hesitation, he steps in front of me and turns off the TV. Which I was watching. (An infomercial for a Dean Martin something).

And I'm thinking WHAT A JERK and I gear up to say something (don't piss off a gal with a dirty diaper) but then I think -- he might be in pain. Losing someone. Like I am.

SO I don't say anything.

But he's still a jerk

Man, I Hate This Day

September 11, 2001 - September 11, 2008

My First Family Photo: Mama and Spunketta

"It Happens All The Time"

"It happens all the time," says the medical malpractice lawyer. (At a time that isn't now, I will go into how we backed into a lawyer. it wasn't on purpose).

But apparently, this kind of negligence is "common." Even happened to the lawyer -- his doctor wasn't thorough, so the lawyer nearly died of a detectable, treatable cancer.

Any IFer knows to be aggressive with her doctor.

But now I realize that we all should be equally distrustful, aggressive with every doctor for every member of our families.

And i long for the days when i could trust the white coats.

Cancer, Cancer Everywhere

Okay, I'm pissed.

Here's the thing: for the past few years (YEARS) we have been taking Mama to the doctor every three or four months. EVERY. She has not gone more than six months without seeing a doctor.

So when the oncologist tells me that Mama has breast cancer that spread UNDETECTED for several YEARS I get pissed.

Mama is not in any condition to give herself self-exams. Any and all doctors that we have taken her to see in the past few years have known that. Would have to know that.

And how many doctors, you ask? Four that I can count. There may be more. See, we used to take her to a "doc in the box" that was associated with her daycare. Good in a pinch but not the best.

And not ONE of the four did a full examination.

Of course, then we took her to a very reputable doctor in Manhattan. Who also did not do a full exam.

My mother in law is going to die because none of these doctors did a full exam.

(Just in case you were thinking medical incompetence ended at IF treatment).

Cancer Scare Day 2

At first, it's easy to cope.

There's an edge of tears in my voice, but not too much. Just enough. I have Stuff To Do. I make phone calls. Assemble resources, marshal reserves. And the edge is there, just enough to make people listen a bit more intently, but not so much that they press for details. Something is up, they're sure of it. But what.

It's a few moments before we have to wake and clean and clothe Mama. I know her bed will be soiled with her own waste, I know that every move will be painful for her. And part of me wants to just let her be. (I won't and it's silly to think of it. But.)

What's the quote? About crisis and day-to-day living?

Coping. Harder today than yesterday, but coping.

Cancer

The vet says the cat has cancer.

The doctor says Mama has cancer.

I have to go back to work in 2 weeks.

I need a babysitter.

Mama is going into the hospital on Monday.

The cat is going to have to wait for treatment. We may have to put the cat down.

H held Spunketta and cried. I placed the baby in his arms before I told him.

I haven't cried yet.

I will. When everyone else is taken care of.

watch me cope.

WSJ Infertility Article

http://blogs.wsj.com/health/2008/08/13/fertility-treatments-gain-legal-protection/

Updates

Mama is worse. She no longer moves without screaming, although some of it is pure melodrama. I'm taking her in for a ct scan (spelling?) next week to see what there is to see. We can't have a MRI because Mama has a clip in her head from her brain surgery.

One of our cats (Schpoonky) has an odd growth on her chin. Truth be told, she's had it for some time, but this is the first time that we've had time to breathe and look at the needs of the non-humans in the family. The local vet is clueless, so I'm taking the cat to a specialist in Manhattan.

Spunketta is good. H is good. I am good.

I do NOT want to go to work next month.

How are you?

In No Particular Order

I'm tired. Which, frankly, has been my first thought sooo many times when I look at this blank blog form. But today I finally say it.

Mama is not doing well. She's having rolling pains in her back. By "rolling" i mean sometimes she has them, sometimes she doesn't, sometimes they're here, sometimes they're there. These pains started showing up as my belly got too large to be ignored; some have asked if there's a connection. (As in, she's got pain to get more of our attention).

And get more of our attention she has... she now cannot walk without assistance, has to be wheeled everywhere in her chair. Cannot (or will not) dress herself. Soils herself aggressively.

Spunketta is doing well. He needs to be fed every three hours no matter what. Which means I don't get to sleep more than three hours no matter what. I feed him for a half hour, he's good for about a half hour (or so) after that, and then he cries unceasingly until I feed him again.

H, my husband, does well on some days, not so well on others. He's smoking again, and drinking a bit more than I'm comfortable with. You can imagine, the pressure on him is incredible. He's the one (more often than not) wheeling Mama around and dealing with her soilage. I try not to ask him for anything with regard to the baby, but.

And that leaves me. And I'm tired. Happy, thankful, stressed. Tired.

What happens now

It's like this:

at one point in the hospital, one day that H actually made it to visit me (and Spunketta). H was playing and holding and cooing Spunketta (as you do). And at one point, H looks up at me, a look of vague panic dancing across his face, and H asks me

"Does this seem real to you?"

No, I answered.

H nodded in agreement. "Doesn't it seem as though any minute someone's going to come in and say, whoops! Sorry! Not you, not your baby. Give him back; you're IF."

It was my turn to nod in agreement.

Having a baby, giving birth, does not make me feel less IF. Hell; not being PREGNANT makes me anxious. I could explain, but it doesn't make a lot of sense.

BUT. As much as I feel a continued sisterhood with the IFers of the world, I realize that some IFers do not want to read the blog of someone with a child. *I* do not like to read blogs of folks with babies and kids. At least not those who blog about said child and kids. So if you're going to part ways with my blog... I get it, and God bless.

If you want to continue to read my blog... well, I don't really know where I'm going with it. I may become the kind of blog I don't read (about babies). I may look a gift horse in the mouth, and whine about the baby. I may just put up Mama stories.

I don't know.

So. Buckle up for the ride. And thanks for flying Sandwich Life...

Bear Update

No one knows nothing. Apparently the Bear (cleverly named "Teddy") evaporated. My husband assures me that the day charge nurse, the night charge nurse, all cleaning people and a few other folks have been asked. No one knows nothing.

I gave birth at New York Presbyterian, one of the "top ten hospitals." And I have no complaints. EXCEPT where's my stuff?

Humpf.

Birth and Bear

Spunketta was born June 5, 2008.

I had contractions from 3:30AM until 9:00PM, at which point I got an epidural and thanked God for drugs. (I was one of those who wanted natural childbirth. Out the window...)

About 11:00PM, they broke my water. Spunketta's heart rate went down seriously, due to the fact (we later found out) he had the umbilical cord wrapped twice (not just once) around his neck.

Enter the emergency c-section.

We're all well (although I have developed some complications -- more after tomorrow when i see my doctor for my follow up).

But! I had this teddy bear -- my father gave it to my mother when they found out they were pregnant with me. My mother used it to practice swaddling and diaper changing. I had had this Bear all my life, and he had accompanied me to many an IF appointments. I held him in my hand when they implanted what became my son.

But I left him in the labor room (when they wheeled me into surgery) and no one has seen him since.

So happiness, but sadness too. Everyone has said something to the effect of swapping a treasured artifact for a live child is an equitable trade. I just wonder why God always has to take something from me to give.

More later...

I'm coming back

gimme a moment...

May 29

Have you ever had a day that's more than a day? It's a milestone, a watermark, heck it's a movie (complete with A, B and C plotlines).

Welcome to May 29.

The C plotline was this: Mama needed her M-11-Q filled out. This is an annual form that her doctor fills out and authorizes Medicaid to give her Home Care Attendants. Without it, no help. Sooo... kind of an important form, eh?

Anyway, the form is usually filled out in April, but about the time we should have been following up on it I was in the hospital. So our caseworker called us up in a panic to tell us that we needed to get the form filled out and filed by guess what date. (Yup, May 29).

Only Mama's current doctor does not fill out M11Q's. (What the...?) So I had to get her a new doctor (lots and lots of phone calls) to find someone who would see her and fill out the form tout de suite.

Nice.

The B Plotline: You remember how where I work was going belly up? Yeah. Well, after many (MANY MANY) weeks of nothing but rumor, speculation and innuendo, we got a hard deadline: GUESS WHAT DATE! Yup May 29. Going to be our last day at work. Much emotion, good, bad and short, went around. And! And! *I* was chosen to be retained/transferred over to the other division. So the morning of May 29, I was the only one who had a job. Of ANYONE in my little division.

Nice.

The A Plotline: You remember how I had to still be pregnant by a certain date to qualify for paid maternity leave? Yeah. By now, you know the date. May 29.

Nice.

So. Who wants to hear what happened on May 29?

As has been his habit, H took me to work. He held my hand extra hard and extra long and I kept breathing hard in and out. It was so hard to believe that I was actually going to be able to make it. I was giddy when I punched in that morning, humming Queen songs to myself. I was the champion.

H went home to take Mama to her doctor's appointment, and I tempered my good mood. I was the only one in a good mood. One co-worker remembered that it was my anniversary and congratulated me, but most didn't care about me. Heck, more than a few were a bit hostile to me. "You know they only hired you because you're pregnant," one spat out at me.

Nice.

H does not usually take Mama to appointments that need forms: I do. Same for appointments in the city. I arranged for NYC transit's Access-A-Ride to pick H and Mama up. Except that H did not understand that you have to be there EARLY, and missed the shuttle bus. He called me in a panic: what do I do now? Mama cannot walk far, H had left his wallet at work (so, no ATM card or the like) and only had about $20 on him. Cost of car service to the appointment? $24. What to do! What to do!

I remembered that we had emergency cash stashed somewhere and off they went. H called every half hour or so with a new emergency. Where's the Medicare card (lost). The Medicaid card? (lost). Where's the M-11-Q form? Etc.

Periodically, at work, one of the fellas that we work for (our division provided support, let's say) would come in with a problem. I was the only one who cared to find resolutions. Everyone else... well, it was the last day. What did they care?

At the end, I was so drained. I asked my boss if I could go home early and was told NO. H agreed to come get me and I sat outside my building shell shocked.

I haven't told the story well. But. it was a heckuva day.