Monday, March 31, 2008
Because this? This is hard.
Friday, March 28, 2008
I can't stop thinking about it.
Was it a dream or was it one of those revelations that comes to find your brain right before it turns into sleep mode, because that is when your brain is most vulnerable to such ideas?
Just a dream.
Thursday, March 27, 2008
Five. On Monday.
"WOW! He would be in kindergarten. I could be his big buddy!"
I thought about this. The wheelchair that would have been, the special bus, the special school, the special class that there would have been. The children 'like' him; the ones who could perhaps speak volumes with their eyes but could not wrap their little arms around you to hug you. The ones who instilled fear into every typical parent by merely drooling.
But instead, I answered enthusiastically, "Yes! Yes, honey, you would be the best big buddy ever!"
And of course, thinking of her friends who are in the kindergarten room next door to her who may be only five but are quite reasonable, she said, "I wish Elijah was alive. I like Bubbles, but he pulls my hair and he stinks."
(for the record, I would like to point out that 'stinks' is a relative term in a six year old's vocabulary, and does not in any way, reflect the actual attention given to said brother's stinky rotten diapers)
The special feeding chair, the on-order foam floor-sitter, the more than likely lifetime of diapers, the OT, the PT, the ECI, the many many doctor appointments, the special attention that he required....
She remembers none of that.
Only the fact that he was her brother and she loved him.
We all miss him.
Tuesday, March 25, 2008
I'm a teensy bit spent.
So, for lack of words, profound or otherwise, I share with you this photo memory, which makes me giggle:
Monday, March 24, 2008
But if it was inappropriate, then my brain has revisited that question over and over.
I might never have thought about it. Then again, it had crossed my mind during those aftermath months of joining dead baby email lists. Most of these mothers had lost children at birth. I would stare at the pictures of other peoples dead babies. I could not look away. For many parents, this was the only photograph they would ever have of their child. For that reason, I fixed on the photo, trying to understand how it would feel to have my whole identity as a mother wrapped up in that one bluish photograph. Sometimes I can convince myself that I was lucky. I had so much more. I had thirteen months and eleven days.
I sat in the parked ambulance for a long time. I kept glancing back at my baby and the team working on him; hoping to see, afraid to see. The helicopter was already there, waiting.
Waiting for too long, I thought. I was strangely quiet. I had done all the screaming back at our house, just a mile away from the heli-pad.
HELP! Is he alive? Is he breathing? Please SAVE HIM!!
I could only clench my jaw and hold my breath and stare through the windshield of the ambulance, fixed on the blades of the helicopter that was going to
They had told me that I could go with him.
They changed their minds.
It was time to go.
They pulled him out of the back of the ambulance, I jumped out of the front.
He was so tiny on that fullsized gurney.
They told me to kiss him. That I would see him at the hospital.
I looked up; they were lying.
They told me to hurry.
I kissed him. I kissed him three times, I told him I loved him with all of my heart, I touched his face, I reached for his hand and then they told me I had done a good job.
Good job, Mom.
They raced him to the helicopter. I began to sob. I asked the ambulance driver to take me to the hospital but he told me that my husband was waiting for me at the end of the road.
What? My husband? Had already gotten back up the mountain after dropping our toddler off at a friend's house at 3 am, as instructed? And why was he here when I told him I was going in the helicopter?
I ran out to investigate. He was, indeed there. Someone had told him to follow the ambulance, and he had complied. Supergirl was there too. In her carseat and clutching her blankie and sucking dearly at her pacifier.
I started yelling again.
Why are you here? Why is she here? Take her to Cate's house! Meet me at the hospital! Leave now!
The sound of the helicopter was long gone.
I sprinted back down the gravel road to the ambulance, and then I saw something that I was truly not meant to see.
Five or six EMTs, paramedics, firefighters, all hugging each other.
It broke up quickly when I screamed that I needed a ride to the hospital, NOW.
When we arrived, I was guided to a small room off the hallway of the ER. I wasn't there more than sixty seconds when I couldn't stand it anymore, and stepped out into the hallway, only to see at that very moment, a group of six doctors and nurses walk out of an enclosed area; each of them was crying. One of the doctors started walking straight for me. I began to back up, back into the shrinking room, so he could get past me and deliver the sad sad news to the other family. But he kept coming for me, he kept walking toward me, he kept looking at me. When he reached me, I said it,
He's gone. He's gone, isn't he?
I have never before or since in my life wished so very hard to be wrong.
He nodded. There was someone else there. She must have known what was going to happen next, because she caught me before my buckled knees let me hit the ground. They shut the door; I think they expected me to scream.
I didn't scream.
Those moments are not clear to me. They are a blur of reliving time and willing time to reverse and pleading with the universe.
But I did not scream.
They asked me if I wanted to hold him.
I was brought to a room at the end of the hall. There was a chair; I sat in it and waited.
A nurse brought him to me. He was wrapped in at least three blankets, which made him seem very bulky. When she handed him to me, this baby we had spent thirteen months coaxing every single ounce upon him, he seemed very heavy.
When I drew him to me, and sniffed, his smell was still there. He smelled warm and sweet; not dead.
He had an endotracheal tube taped to his face, but other than that he just looked like he was asleep. He always was a deep sleeper. He was so warm. He was so heavy.
But when I nuzzled his neck, he was unmistakably dead. No matter how asleep he was, he would always nuzzle back.
I rocked him, I told him how sorry I was for letting him die. I knew I had ultimately failed him as a mother; I had failed to keep my child alive.
At some point my husband joined me. We took turns holding him, bowing our heads together and sobbing over this soft sweet warm dead boy.
We were told not to take the trach tube out; we complied. Dh carefully removed the tape from his cheeks; I remember thinking be gentle, don't hurt him.
We unwrapped his blankets to touch his soft belly one more time and then lovingly snapped his pajamas back up.
Hours went by, and still, he was warm. Not cold, not blue.
But still, he was still.
We passed him back and forth, our son, and the room was still and silent and waiting.
Finally, he said he was ready to go. He needed to leave this place, he said, and go now to our living child. Child, I thought. Not children.
I knew what he meant; I even agreed.
I looked at the door, and then back again at Elijah in my arms. Who I would never see again, once I walked through that door.
I was not ready.
But we had to go.
It took many false starts, many attempts at placing him in the kind nurse's waiting arms.
I have often thought about that little detail and been grateful - that I was not required to put him down on a gurney, but allowed to place him in another woman's arms.
But at some moment, I don't know how, I knew I had to go.
How could we walk away from him forever?
How could we leave him there?
There were no other options.
So we kissed him one last time, breathed him in one last time, and touched him one last time before we stepped back into the too bright, too loud, too functional world, to reclaim our lives as parents.
Sunday, March 23, 2008
It appears that some items have been left behind.
wooden animal mug
assorted bug wrapped truffles and filled eggs
more chocolate eggs
one spring apron
assorted jelly beans
toothbrush and toothpaste
wooden fishing game
the thomas dragon train engine
more chocolate eggs (I think, but there are so many bites taken out of this one already it's hard to tell)
toothbrush and toothpaste
Friday, March 21, 2008
BOS: Well, because we are Jewish...but you can still have candy! And, well, because that holiday is about a guy named Jesus who a bunch of other people got together and killed, and then he...umm...came back to life and now kids hunt for eggs filled with candy.
BOS's 5 yo: Mom?
BOS's 5 yo: That doesn't make any sense.
BOS: I know. Do you want just want me to get you some candy?
Thursday, March 20, 2008
Every year, I
A) we didn't have a two year old who has great potential for his fantastic capacity for flinging himself of mountains, and I would prefer not to test that skill, and
B) it is absolutely not what I want to be doing (think lots of dirt, pumping up campstoves, pooping in holes and NO ACCESS to water) that weekend.
Pardon me for needing one fucking shred of the pampering, as in running water and a mattress.
My life-saving girlfriends got together and arranged a weekend here. It is actually less than 40 minutes from home, so we will have one night with just The Wimmens. And another night in which we will allow our children (and perhaps husbands) to stay. Ms Boss of Seattle herself, Julia, is even flying down for the event.
I have never stayed there because it is so close, but the irony is that it is located at Elijah's Beach. In fact, they probably call it their own beach, but most of us know better.
I am not sure if this is good or bad. I will wake up on his birthday not at home, but at his beach. Sounds perfect, huh?
But oh-so-loaded, because I make it that way.
If I go to his beach, then I will have all sorts of emotions. Do I want those emotions?
If I go to his beach on his birthday, then I will feel compelled to do something with those ashes.
If I go to Elijah's beach, we need to scatter his ashes because that is where we finally agreed to scatter them. Oh so long ago and then never got around to following through.
(Because really? Thinking and Doing on that one? Whoa. Not even close to the same thing. Even for a virgo like me.)
Do I want to scatter his ashes? No. Do I want to have his ashes in a box at home? Not really. Do I wish I had just one more option? Yes.
(I checked - there are none.)
If the subject of Elijah's ashes comes up, then we will have an argument. About the ashes and what to do with them? No, we covered that series of arguments long ago.
We will have an argument about who should be there. I think Supergirl should be there because she remembers her brother Elijah. She knows he has 'turned to ashes', and well, truthfully, she is interested. I don't think she would be at all scarred by this experience; she already has such a pragmatic perspective on what happened and how she handles her loss.
But I am the only adult in this household who thinks that she should participate in this 'family event'. While I respect that we have different opinions about this, neither opinion has yet trumped the other.
So, on the shelf the box of baby still sits.
The weekend away? Doesn't suck.
The girlfriends? Don't suck.
Arguing is bad enough, but having to have drama over his ashes?
Wednesday, March 19, 2008
- If you are 35 minutes into your 45 minutes commute, your car will get a flat on a very narrow stretch of Highway 1; where you will have a lovely view of the pacific, which is precisely where your body will be flung should one of those eighty-mile-an-hour semi trucks swerve a bit off their mark.
- Your cell phone will inexplicably refuse to charge, turn on, or pretend that it knows you.
- Two police cars will pass you by without slowing, even though you are outside your vehicle holding your dead cell phone in your hand.
- You will remember that you DO know how to change a tire!
- You will look for your jack and not be able to find it. You will swear.
- But then you will remember that neighbor guy from 5 or more years ago who changed his tire wrong and now is a paraplegic. You will decide to stop swearing and to not change your tire.
- You realize that you will need AAA, but you can't call them, and you can't find your card anyway because it is, in fact, in your dh's wallet.
- You will make a sign with your magic markers, which were put into the car for the purpose of your classes, which you will now be missing and you have no way to inform your classes (see #3). The sign will say "PHONE? TIRE?"
- You will watch many many many BMWs, Range Rovers, and CalTrans vehicles all pass you. Nobody will stop to help, though some will gawk.
- As the third cop car speeds past, you will notice a car go past you and turn around up ahead, come back, and pull up behind you in the unsafe narrow stretch of road.
- This car will have just one person in it; a lone woman as yourself. A woman who noticed a woman on the side of the road, watched to see if the police car would stop, and then when it did not, decided to turn around.
- This woman will give you her cell phone, which works! (this is an area of Hwy 1 with very little cell coverage)
- You will call the person who can go tell your class that you are not dead, but will not be making it in time for the class.
- Then call AAA, who will ask if you have sent your membership dues. As you rack your brain for the truthful answer, you will hear the words 'grace period' and say that YES! you
will send that right awayhave sent that check!! You will explain to them that three cops have passed you and a very nice strange woman stopped to help and you are using her phone and may need to hug her. They will laugh and agree to send a truck!
- You will hand the phone back to this woman named Sarah, apologize for making her late for work, and you will indeed hug her before going back to wait in your own car for the AAA guy.
- Where, from your rearview mirror, you will notice that Sarah is on her phone and her car is not going anywhere. She will give you the 'arms up surrender pose'.
- You will get out of your car and into her car which suddenly, will not start.
- You will both peer under the hood for something wrong and then admit to each other that you have no idea what you are looking for.
- You will exclaim about how it really is strange that in ten minutes her car went dead, and agree with her when she turns over the starter and it just clicks, that something IS wrong.
- You will aplogize profusely for being responsible for making her late.
- You will realize you have just met a new friend as you discuss your mountain lives in common, Hawaii, Costa Rica, and recent books read. The SAME BOOKS!
- You will become deeply engrossed in conversation, when OOPS!!! You realize that you left your lights on in your own car and jump out of her car to turn them off, but
- OOPS! The battery is dead.
- You will laugh about how lame you are as your climb back into your new friend's broken down car.
- She will agree. Nicely.
- The AAA guy will show up and be Sarah's neighbor, driving back from dropping off Sarah's mom's car at the shop.
- Everyone will laugh.
- The AAA guy will be inordinately amused and confused by your situation and fix everything for everyone. Nicely.
- The AAA guy will comment on how lucky it was that your 'friend' noticed you stuck and stopped to help you.
- You and your new friend will laugh heartily and explain to incredulous AAA guy that you just met.
- Sarah will get to work, albeit a little late, but hey - it was her boss who sold her the car.
- You will end up hugging the AAA guy (because, he is, after all, Sarah's neighbor) in thanks.
- You will have already missed your classes that you were supposed to teach, so you will turn around and drive home, your only accomplishment of the day being: wasting 70 miles worth of gas and scratching your initials into the ozone layer.
- You will arrive home and put on your calendar to make some cupcakes to take to your new friend and hero, Sarah, and her boss at the bookstore, next Wednesday when you drive up there to do the make-up classes.
Tuesday, March 18, 2008
Still waiting to hear from my dear dear friends:
Denise (who thinks I smoke the crack pipe before I ask such things)
AND A BIG GIANT SPECIAL THANK YOU for Julia, The Boss of Seattle, for telling me that she 'had seen me look a lot worse!'. Please send me a picture of YOU so I can post it here, you cowardly blogless one.
Howabout You, Ms.Supafine? or YOU, Laura? Amy; We've seen your lovely ho-panties under yo pregnant belly (more belly!!), but we haven't seen your morning mug....
You know you want to do it, don't you?
Add your link in the comments.
LOOKY WHO is not afraid:
Denise (my other new very good best friend, who claims to have caved to the peer pressure but has better
DadaMama (who totally uses her baby in an advantage of cuteness. unfair? you decide!)
Sunday, March 16, 2008
Saturday, March 15, 2008
I brush my hair and my teeth, and my eyebrows are in serious need of waxing, but other than a teensy little bit of concealer, this is me first thing in the morning, this is me at lunch time, this is me when I go to meet the kid's teacher, this is me when I put on my happy face and teach happy music, and this is me after dinner when the kids have gone to bed (add glass of red wine to hand).
Friday, March 14, 2008
I never see babies who look just like Elijah. But this baby looked like a bigger, healthier Elijah.
He was five months old, and he looked like a very chubby five month old baby.
His eyes were shining blue, but deep set beneath his prominent brow. His cheeks were exceedingly large and...well...cute. His mouth was a tiny little rosebud. His hair was abundant and blond and curly. He was....lovely.
The family was right behind us. They kept smiling back at me but I think my stares may have become a bit too intense for them. It was hard to not stare at a baby like that.
But impossible to talk to them. Can you imagine? 'Oh, I am just staring at your gorgeous son because he looks just like my son. Which one? Well....he died. I must leave quickly now.'
I just told them that I thought he was incredibly beautiful.
Wednesday, March 12, 2008
They were playing some complicated 'tiny petshop plastic creatures meet organic waldorf wooden treehouse fairy family' game, when I heard Sunny say to Supergirl,
"Well, we can't both be the moms! Because then we'd be GAY!"
I managed to keep my mouth shut. It wasn't easy. I realized that we had never ever used that term with Supergirl.
We have never used the word 'gay' with her, because we have never had any need or desire to segregate the love, commitments, and unions between couples that she knows and loves, by attaching labels like hetero- or homo-sexual.
In my (this is where I am supposed to insert the word 'ancient') generation, beginning in the pre-junior high era, the term 'gay' was derogatory. It had nothing to do with sexual orientation, it was just a way to tell someone they were lame.
"Have you seen Herbie today? OMG his pants are so gay."
"Did you have to take Mr. Payne's health quiz today? How GAY was
"What the hell are they are serving in the cafeteria today?
Green jello on THURSDAY?"
You guessed it. That would be WAY gay.
This of course, may have less to do with generation slang-trends of the seventies and eighties, and more to do with the fact that I grew up in
With Supergirl and Sunny, I did keep my mouth shut.
I, once again, live in a little bubble.
A much different kind of bubble, but the kind in which most of the parents with whom I hang, erm....roll the same or very similar way. That way couldn't be more different from the way of the bubble in PA. There is no profound enough metaphor to offer to describe the difference.
I waited for the conversation between the girls to continue, hoping that it would not go sour, but being within earshot to interject if I felt it was needed.
Supergirl, as expected, asked Sunny,
"What is gay?"
Sunny thought not two seconds before she chirped back,
"Well, it's when two mommies decide they don't want to have husbands, so they just are together with each other instead!"
Close enough. For now.
Monday, March 10, 2008
We took a trip to 'wild horse ranch' today.
Sunday, March 09, 2008
G O O D. good. Sponge-y cake on top, lemony custard underneath. Yum. And trying to figure out how to make into a portable cupcake. It is that good.
There is so little flour in it, that it would be easily converted into a gluten-free recipe for those who swing that way. My love to you, Laura and Jen.
It looked so easy that I decided to make a double batch - one larger souffle type, and some of the little individual custards, as were recommended with the recipe. I like how it looks like it had little lemon puddin' babies.
This is how I made it:
Meyer Lemon Custard Cake
3 eggs, separated
1/2 cup sugar (I dipped into my vanilla sugar jar)
1/2 cup fresh meyer lemon juice (this was 3 lemons for me)
2 T flour
1 cup half & half (or whole milk or cream, depending on your desired
1 tsp vanilla
1-2 tsps lemon zest (optional, and if you want your kids to eat it, I would
suggest omitting it)
1/4 tsp salt
- Whisk egg yolks with sugar until light and creamy
- Add lemon juice, whisk well,
- Add flour, whisk well,
- Add half & half, and (optional) zest and vanilla,
- In a separate bowl, whip egg whites and salt until stiff peaks form, but not
- Pour lemony yolk mixture into whites, and mix - or coax - gently but firmly
together with a whisk,
- Pour into buttered glass or ceramic souffle dish or custard cups.
- Bake at 350 degrees F (325 if your oven runs 'hot') in a bain marie (line a roasting pan with kitchen towel, pour very hot or boiling water halfway up sides of baking dish): 25 minutes for individual custards, and approx 35 minutes for the souffle or cake size.
Thursday, March 06, 2008
Did he interact? Could he respond? Was he umm...'all there...' ? (retarded, is usually what they meant)
Yes, Yes, and ummm well, yes.....But Yes, he probably was also mentally retarded. Because we have this picture of his brain from the neurologist that says so.
Actually, when the neurologist-from-hell gave us the first report on his MRI, he said (I found in my journal, and I quote), "We have no way to know what this means for his future. He may have trouble with learning, uhhh, you know, his ABC's."
And then the next day in an email exchange when pressed, said more ominously, but taking a step out of storyland, "He may never walk or talk. There is no way to know."
Allrighty then! That was a little bit more to digest!
What most people think of when they hear 'retarded', is 'thank heavens that's not my kid!', as images of large drooling and lumbering adults come to their mind. While this is perfectly normal and even acceptable, it does make it very hard for the parents of a child who is 'differently abled' to try and convince someone else that they do NOT FEEL BURDENED. The drool and the shit and the extra work it takes? Fine. The way a mother feels about her typical child, the way she would do anything to protect him from danger, the way she is torn up inside when she fears he will be treated unfairly, the way she gazes at him while he sleeps with awe and love and gratitude that he has come into her life....all of these things and more, times one hundred, is how a mother feels about her child who was born less entitled than yours. Born into a life on this earth. Just a little less lucky.
I am still astonished at the number of people who have intimated that Elijah's death was somehow freeing for us. When, really? I had embraced this surprising avenue of motherhood with the fervor of discovering a purpose. So when he and all of his specialness was gone? What purpose did I have? I know my purpose, you don't have to point it out. I am only sharing this to try and get it through your fearful heads that parenting a child who needs extra care? Parenting a child who is retarded? Not worth your fear, and it's insulting to those who are living it. Worth the fear of losing a dream maybe, but not ever worth the fear of living it.
Wednesday, March 05, 2008
But I don't judge him or tell him that I think he is full of shit and grief. I just let him do it his way. Who am I to say what works? Dead babies don't get you some sort of special manual, you know.
So, with that in mind...this very recent conversation pissed me off:
me: Have you seen the medical reords?
him: The what?
me: Elijah's medical records. I had them out the other day. I want to scan this picture of his MRI and compare it to a 'normal brain' side by side.
him: Oh. I see.
me: What. where is it?
him: I don't know. but you are 'doing the work.'
him: It's the stage when you take grief and turn it...(wait for it)...into something else.
I had to go away and cry for a moment. At his daunting level of transcendence.
Tuesday, March 04, 2008
3/31/03 6:37 pm Baby Elijah is born!
After all this waiting, it all happened SO fast. And he was on my chest. He is
ABSOLUTELY beautiful. TONS of silvery thick blond hair - appears to have curls.
All cheeks, tiny rosebud mouth. 4lbs, 13oz. 15 3/4 inches -
9 pm, dh went to pick up Supergirl from C's and take her home, will bring
her to meet E tomorrow [I will never, ever, ever stop regretting 1.letting
him go, and 2. not allowing those blissfully ignorant hours to be shared with
our family - it's the constant deficit I have in my life of crystal ball.].
Elijah isn't very interested in nursing, and tires easily, which is
But overall he is doing VERY well....for a baby I thought I might never be
able to hold right away. [For weeks in pre-term labor, I was told I would
give birth to a preemie - AT ANY SECOND!]
He responds right away to my voice or Daddy's; loves touch and caress.
Everyone on the floor has come in to see his incredible hair. They say he looks
like an angel, but that makes me squirmy. He looks like a little
4/1/03 2 o'clock am and I am still so full of adrenaline I can't sleep.
What did they put in that pitocin? I am starving. Little E is asleep in my arms,
the night baby nurse checks him often - she also worked at my 'internment'
hospital...nice to see a familiar face.
I feel so much better than I did after giving birth the first time, even
though I was pissed about missing out on the spinal.
I cannot believe I made this boy. I did this. He is so incredibly
beautiful, tiny, perfect. I sniff him and I just about come undone with the
intoxication. I inhale him.
He is perfect.
[scrawled] 3 am Elijah admitted to the NICU down the hall -
pulse/ox dropping down to 85- looking blue around the lips, still not
Monday, March 03, 2008
When I posted about Elijah's quilt, I was pleasantly surprised to hear from the woman who so lovingly made it. We have managed to stay in touch over the years (I cared for her children years ago but they are growing up now...) but we have had an astonishingly difficult time arranging in-the-flesh visits, even though we live but three miles apart. So I was a-flutter to see Nancy's comment, and an extensive and heartfelt email exchange has been born and continues from that
I asked her today if I could use part of her email as a sort of 'guest poster', and she obliged, because she is a very nice person and believed me when I said I was still wrung out from last night's post. I speak the truth.
I asked Nancy (and another friend of hers also posed the question) if she would ever do it again. I was almost afraid of crediting her, in case someone else asked her to do the same thing. I can tell you, the volunteers are not lining up for this job.
My surprising answer to this one is that I would do it again. I know that
I told you at the time that I wouldn't, and I truly hope that I never get asked
again, because I wouldn't want anyone to need a quilt like that; but I
would be willing to do it again, because it sounds like it's been helpful for
you to have.
Okay, like I said before. Tender. Hearted. Friend.
And then I asked this:
"It really was hard to do, wasn't it? Was it harder to cut up the clothes or to put them together?"
Here is her answer:
As for making the quilt, yes it was difficult to do. I think that I
told you about the knit issue because I didn't want to face how emotionally hard
it was. It was getting started that was the hardest. I think I
actually put the quilt together in about a week once I started cutting. It
felt sacrilegious to cut into his clothes. I saved all the feet from the
footed outfits, really wanting to find a way to put them into the quilt.
For some reason those were the most poignant for me, those tiny feet.
I cried a lot when making his quilt. It was actually quite cathartic that week of
cutting and then sewing.
I can see now that the anger at trying to line up
the points was more anger about the whole situation, that Elijah had died and
that was what was prompting the quilt. It was so much easier to blame it
on the fabric issues that look at why I was truly angry. (I also felt
incredibly guilty that I had never made a quilt for him when he was alive.
I still don't know why I didn't. I have a story that it was because things
were so chaotic in my life that I just wasn't really in touch with you, but I
honestly don't know.) And then as it started to come together I felt such
peace and joy coming from the quilt. I could feel him watching me.
It didn't feel at all eerie, but I didn't know how you'd take it if I told you,
so I chose not to.
Nancy, thank you again. You really should start a blog to chronicle the beautiful (hundreds?) of quilts that you have made and the stories behind them. I know I told you that there is danger in sharing the gifts...the danger that someone would someday have to ask you to do it again.You are a brave and gifted and talented woman. Thank you for being my friend. I never wondered why I didn't get a quilt before. You are so generous, that you have guilt for not giving something that was never expected. That's wrong.
You can not know how crazily comforted I am to hear that you were angry at the situation. I was so sick of pats on the shoulder from everyone. We take this moment to bring you a Public Service Announcement:
Here's a little nugget of bereavement advice for everyone:
Allow room for the anger.
Thank you, that's the end of today's PSA on grief and other really bad stuff.
And one more thing. Nancy - thank you for saving the tiny little feet.
Sunday, March 02, 2008
"These people are absolutely right. You messed up. And
you need to give their baby back to them right now."
Obviously, this was not going to happen, ever. Any reptilian brain knows that.
I know you think I am all saintly and altruistic, but really? So not. (muffle your snickers) Actually have very active part of self which is desperate for retaliation.
My son's doctor was genuine and kind. She was also overworked. She missed a detail in a surgical report. Hell, she missed the whole surgical report! She made a mistake. One that ultimately contributed to my son's death.
I know she felt awful -she came to the ER that morning, after he had died and she held us and cried with us. She felt awful that he was gone. She still had no idea of what had been missed, and neither did we at that point.
But still, I occasionally had dark times when I was in so much pain that I wanted to will more pain upon her, or at least to know that she was in some.
Sue my ass?
Scared the crap out of me and pissed me off. Not the person, I actually liked her a lot. But her words absolutely inhibited my blog, since I had decided to publicly share those raw thoughts in my writing, and I absolutely did not want to censor myself.
...and a time-line chronicling every doctor's visit or medical notability in his life which I had compiled from all of the medical records after he died. Looking over it, I remember how busy we were. And this doesn't even include his many, many ECI and therapy (OT, PT) appointments...(this may be a good time to point out that he had no less than 33 doctor appointments in his 57 and 1/2 -not that anyone's counting- weeks of life.)
1-23-03 to 3-7-03 Mother hospitalized for 'pre-term' labor;
on record doses of magnesium sulfate for duration.
3-31-03 Elijah's birth; Watsonville Hospital/ birth weight 4lbs13oz
4-2-03 transported to Dominican NICU for testing and TPN(IV nutrition)/tests include high resolution chromosome testing (normal) MRI brain scan (normal)
4-21-03 discharged from Dominican Hosp. NICU by Dr.V.,4-01-04 - Began HGH daily injections
4-23-03 dr. visit w/regular doctor (at SCMF) w/Dr.V.
weight check (WC) 5lbs 6.5oz
4-29-03 SCMF/WC 5lbs 9.9 oz
5-6-03 SCMF/WC 5lbs 10oz
5-13-03 SCMF/WC 6lbs .5oz
5-20-03 SCMF/WC 6lbs 2.6oz
6-3-03 SCMF/WC 6lbs 10oz/ feeding concerns
6-17-03 SCMF/WC 7lbs
6-19-03 Swallow study w/ Radiology – Reflux not detected
6-27-03 SCMF/WC nurse visit/no data recorded
7-25-03 SCMF/WC /more feeding concerns
8-8-03 SCMF/WC 7lbs 15oz/ developmental
8-28-03 Barium Swallow Study Radiology-LPCH – Occupational Therapy consultation (referred by Dr V.)
9-12-03 SCMF/WC 9lbs 15oz
9-13-03 Infant Development Clinic Hi-risk follow-up w/Dr K (referred by Dr V)
10-10-03 SCMF/ WC 10lbs5.4oz
10-20-03 LPCH Neurology appt w/Dr W (referred by Dr V) /TESTS ORDERED: bloodwork, incl test for MENKES SYNDROME (normal) and MRI of brain (12-1-03)
10-21-03 Urology Exam w/Dr K (referred by Dr V) /Dx: Bilateral
Undescended Testes, Surgery planned for Spring 04
10-23-03 LPCH/ Genetics consultation w/Dr.M. (referred by Dr V.)
Chromosome tests ordered (normal results)/No Dx
10-28-03 SCMF/WC 10lbs 6.1oz
11-18-03 Dr V visit/weight check (notes illegible)
11-25-03 SCMF/WC 10lbs 11.4oz
12-1-03 LPCH MRI of brain ordered by Dr W, Neurology (referred by Dr V)/ results cc’d to Dr V
12-9-03 Dr V visit/weight check (notes illegible)
12-16-03 SCMF/WC 11lbs 2.6oz /MRI at LPCH discussed over phone.
1-12-04 Follow up appt w/Dr W, Neurology/ Abnormal MRI but no Dx
1-15-04 Infant Development Clinic Hi-risk follow-up w/Dr I (referred by Dr V)
2-18-04 pre-op appt w/Dr K for UDT surgery
2-23-04 Surgery for bilateral undescended testes at LPCH– discovery of TRACHEOMALACIA by anesthesiologist & Dr. K, Urologist (referred by Dr V) p.41 of medical records.
2-26-04 Endocrinology appt w/Dr F, LPCH (referred by Dr V)/ growth hormone testing and eventual prescription for HGH
4-25-04 SCMF/WC 12lbs 1oz Follow up on UDT surgery/endocrine evaluation/3-25-05 meeting between mother and Dr V, in which Dr V. revealed that she wasnot aware of Elijah’s condition of tracheomalacia, never getting surgical report (2-23-04) from LPCH.
discussion of surgery results (incl tracheomalacia)/ follow up on letter sent to
Dr.V re: needing more attentive care & faster response to our concerns re: hispoor reaction to growth hormone treatments
5-9-04 SCMF/ emergency visit – fever, Dx:
bronchitis, expressed concerns about tracheomalacia and bronchitis/ asked
about admitting him to hospital/ Dr not concerned, sent home
5-10-04 Called SCMF with info that Elijah was doing worse/ call returned by Dr V’s nurse; Albuterol prescribed and administered
5-11-04 approx 2am, Elijah stopped breathing while
mother was on phone w/attending pediatrician/ 911 called, CPR administered by mother and EMT for more than 60 minutes, med-evac'd to nearest hospital Dominican/ pronounced DOA
March can be cruel. In the name of vaguely protecting the doctor who blew it with a human error, I have fed my own anger which manifests each year as fears of this season. A whole goddamned season.
Saturday, March 01, 2008
She pulled each one out separately, and asked me when he had worn it. We decided which ones were special enough to make it into the quilt. Each little shirt had a story. The traveling elephants suit, which he wore whenever we flew for some reason.
The little jumpsuit he wore every day in Hawaii, because it weighed nothing, and reminded me of little man pajamas.
The little fleece outfit that I bought at Olde Navel for our trip back east at Christmas - I bought it in the girls department because the boys version was sports-related and inappropriate for my little softie.
The snowflake print union suit that reminded me of dishes from the sixties and was a hand-me-down from a friend who loved it just as much but still let me cut it up.
The blue and white star and puppy jammies which were a preemie size and the only thing that really fit him well for the first three months of his life.
The striped onesie which we put him in all the time because the colors matched his eyes perfectly.