So this is Christmas

Happy Christmas to all.

I am not finding the time to post here from Pennsylvania; I am finding my family far too interesting and entertaining to have much time for that....besides chasing Bubbles around my brother's 15 room house.

I will post pictures soon - I could do it right now, actually having the technology at my fingertips, but another round of presents and another glass of wine are calling, so I claim laziness.

But the merriest, happiest to all.
Really.

All I want for...Well, all I want.

More of this.

Still not telling.

Yes I did send cards this year.*

*So if you did not get one, then obviously I do not have your address. (ahem)

So, now that I have sent out most of my Christmukaholidaze cards (oh yes I did! first time since Elijah was alive - and it was that one of my babies on the beach in Kauai...sorry I digress)...I can share it with you!
'Mele Kalikimaka' is what we did not say on the card.
And I will not divulge the location; not under torture, not even under bribes of chocolate. But if you have some miles that you want to trade for information, let's talk.

What we did say:

Best Fishes

Really.

Thirteen months and twelve days

Today is the day.
The day that Bubbles is older than Elijah.
Ever.

I thought I would have a lot to say about this.
But I do not.

Dh and I discussed this tonight, leading to mildly shocking results.
In that he thinks the time is so different; the time with Elijah is so incomparably different to the time with Bubbles - and there I enthusiastically agreed. Until I realized that he thought it so on the opposite side of my own impressions....
In that I think time is so different; the time with Elijah is so incomparably different than the time here with Bubbles - because he (Bubbles) has developed so fast, achieved so many milestones, it (the time with Bubbles) seems so much longer to me!
I mentioned these details to dh and he was quick to agree...up until the point of it feeling longer.
Can you imagine my surprise when he said it seemed shorter?!
Even when I said the unthinkable (which I am allowed to say), "Even if Bubbles died tomorrow, and then two plus years later we talked about it, you would still think it felt shorter with Bubbles than Elijah?!"
And he said, "Yes, I think so."
Wow.
And for the same reasons. The same, exact reasons that I gave for it feeling longer.

Time is existence, and all existence is time.
What more can I say.

I will be here for you. I will be the one who is still angry.

A favorite mommy; a woman with whom I would hope to be friends if we lived closer, broke down last week after class, as she told me about her friend's recent loss. Perfect pregnancy, everything was fine. And then life ripped her off. Her baby died. I believe she gave birth to a son, and I think he had died right before birth - but I am not sure of the details.

But I know her baby died. That is the only important detail. And I can only imagine her pain. Really. This mama got nine months to bond with her baby. To track his development, imagine what he looked like, anticipate his arrival, his existence, to feel him move, to love him. And then she was robbed of that most beautiful moment.
The first moment.
And the rest of it, too.

And her friend, her friend is a beautiful person who asked me what, if anything, she could do. She couldn't even ask those words. I just assumed that was what she was asking when she told me what happened. And, guess what? I don't have the right answer. All I can say is what helped me, and hope that some of it at least, will help this mama too. I am not sure if this was her first child, but I think he was. And yet who considers her a mama besides herself? I hope at least a few other people in her life can give her that hard earned acknowledgment.

But what I told her friend - who is strong and brave enough to want to help - was that these situations are very alike, but very different. Even if the details were more alike, our grief would likely be different. That said, I am still very 'in touch' with my grief, and although I sometimes wonder if I am stuck in 'the anger phase', I was more than willing to share what helped me in those raw first few months. This is not the first time I have been asked this question, either. When people seek me out to ask me what they might be able to say or do that could possibly help, I know right away that these are the best friends. These friends could even possibly save their bereaved friend's life.

When I mentioned that my sister-in-laws cleaned out almost all of Elijah's things from the house and packed them away in the garage, one friend was shocked. She thought it was cruel. I guess it could seem that way to some, but for me I could not look at any of my son's things without being reminded how 'dead' he was. So suddenly. I knew that someday I would want to see his pictures and hold his toys and smell his clothes. But not for months. I asked them to put his things away. I remember coming home from the hospital that morning after Elijah died and calling my friend to come and help me take down his crib. She did. It was excruciating. Excruciating does not even come close. I have yet to find a word that does.
After that, I asked that his things be put away, and not by me. I appreciated this help. It paralyzed me to think that I might have to touch it all and put it away myself.
I hope that someone will offer to put his things away and keep them very safe for her - if this is what she wants.

I hope that this mama has a picture of her baby, and I hope that when she is ready to look at it, someone will ask her to share that picture. It is not morbid or grotesque; it is the only photographic remembrance she has and will ever have of her child.
I hope that this mama was able to hold her baby for a long time if she wanted to. I hope that she was able to bathe her baby, and touch his toes and kiss his tiny fingers. I hope that she was able to cry and sing to him until she was ready. (you never are. never. but still you let them go.)
I hope that her friends will ask her about her time with him. I hope that she will talk about it with them soon. I think it helps. Her friends wanted to love that baby too; they are ready to share her tears and her pain. And her anger. Make plenty of room for that.
I hope that someone will offer to make a quilt for this mama out of the clothes and blankies that were meant for this baby. Most mamas will not want to use these in the future. But some will; the clothes will always hold some special significance.

I hope that her friends will call her nearly every day, just to check in. Just to say, "Hi, I was thinking about you and how is your day going, and 'crappy' is a totally acceptable answer."
Just to leave another message and say that she doesn't have to call you back, but you're just checking in, and you will call again later. She doesn't have to pick up. That isn't the point. The point is that she has a lifeline. I am not exaggerating when I say that this 'tactic' saved my life at least once, very likely twice. I had about three friends who called me constantly. For months, maybe a year. And when it had gone on too long without a response, they would ask for one. Just a quick check. But usually I talked. And cried. And sometimes I talked about my baby. And my anger. And they listened to it all. Whether I was talking or not.

Most of all, I wish for her some way of meandering through the following months just seeking some sort of peace, and not seeking 'normal'. I wish that I could speed up time for her; this really is the only concept (time) to which I can attribute any positive measures of healing and coping.

Losing a child feels like the biggest rip-off of your life. It is.

I am truly sorry for your loss. I can not even begin to imagine your pain. I know you have so much love you wanted to share.
I will be here for you.

Dark Tales from the Ivory Tower, OR, How I got the world to love on my baby. (Love Thursday)

Three years and one month ago, I took my 8 month old son Elijah to see a neurologist at Stafnord. We had waited months for the appointment. The doctor was quite awful. Though I had been warned by our very sweet and experienced EI teacher that they were not known for their sensitivity on any level, he far exceeded my expectations. He first addressed our child as a mere specimen - you could tell this from the way he looked him over; being careful not to engage in any way - and announced his 'impression'. "Wow. He sure is small. I wonder what is wrong with him?"
(No! We hadn't noticed. Perhaps we should take him to a doctor!)
He then told us that he would like to have him tested for a variety of ailments; and he had a sneaking suspicion that our son perhaps had something called Menkes Syndrome. He followed this up with, (and I am NOT kidding), "Now don't go home and look that up!" (Oh what a silly concern! That parents would want to know something about a fatal illness that a neurologist 'suspects' their child may have!)
And then he ordered some blood tests, scheduled an MRI of Elijah's brain (no small appointment - another full day at the hospital, sedation, stress, then more waiting), and sent us on our way. Hopefully to go home and do what we usually did - not look things up.
A few days later, we went back for the MRI. It was everything we had expected. It was not the first. We were told that the neurologist and radiologist would go over the results and we would get a call within the week. Meanwhile, we went to see another doctor over in Genetics. We had also waited months for this appointment. On the day of that appointment, I remember that we were so stressed, we could barely answer the med student's questions about Elijah. I finally just explained to her that we were incredibly stressed after this week of testing and was there any way possible that she could maybe find out if our son had Menkes (since we had not yet received a return call from neurology about the initial bloodwork) so we would know if we should even bother answering her questions or not? She was uncharacteristically nice and immediately got up and went to go check on the computer, which was apparently accessible to any doctor within the hospital. She came back with good news: Elijah did not have Menkes Syndrome. And she was very sorry that nobody had called us with the results that had come in days ago.
After dh and I hugged each other and Elijah, we were able to continue with Genetics, though they had no answers for us or our mystery baby. They commented that he was 'quite small'.
After the MRI, we anxiously awaited that phone call with the results. We knew that we would have a follow-up appointment with the neurologist in January, but we were hoping for some sort of results after the MRI was read. We were also getting ready to take our family on a much needed vacation in Kauai, and were hoping to have some 'closure' on the stress (I don't know what we were thinking!) before we left. I had been particularly overwhelmed with the overscheduling of doctors appointments, which was turning out to be a lot of output for no information in return, and in our personal lives I was sick and tired of hearing peoples' shocked reactions when I answered the question of how old was my baby. Even the doctors seemed to be overwhelmingly insensitive when greeting our family - can you imagine what it does to a baby and his two year old sister to constantly hear, "WOW! He is so small! What's wrong with him?"

Finally, the call from the nurse in the pediatric neurology office came. I answered the phone as I was packing diapers and bathing suits. She said, "We have the results from the MRI of Elijah's brain. The results are abnormal, and the doctor will explain this to you when he sees you in January."
My brain did a quick review:
It was November.
My child's brain was abnormal.
How? I did not know.
But I would find out in January.

Then I responded.
"You just told me that my son's brain is abnormal, and that you can't tell me how or why until I come back in January?"
"Yes, the brain is abnormal (note: 'the' brain. not 'his' brain). But the results are inconclusive. There is no diagnosis. So the doctor will explain it all to you at your follow-up appointment."
In January.
"Yes, well you know, that just isn't going to work for me. You need to have Dr. Asshat call me today. You don't tell a mother something like that and then tell them to wait until their next appointment!"
"Look, this is pediatric neurology. Any diagnosis is bad. Your child does not have a diagnosis. He does not have a brain tumor. I will ask Dr. Asshat to call you, but you are going to have to wait until your next appointment."
"YOU look, lady. If YOU are the person who DOES call those parents of the kids that have brain tumors, then your office has bigger problems than making parents wait. And I AM A MOTHER. I love my son and I just put him through a LOT of tests, and I am NOT going to wait two months to hear the results. Do you have any idea how long two months is to an eight month old baby? I suggest you have Dr. Asshat call me today by 6pm, or I am going to call you every single day until he does."
Did I mention before that nurses don't really like me?
The doctor (note the use of the word 'the' doctor instead of 'Dr. Asshat'- the way I de-personalized him there!) did call me back by 6pm that day. The results were inconclusive. Yet another doctor without a clue what was going on with our baby. His brain was not developing normally. He was found to have a small corpus callossum. And microcephaly. (the microcephaly Dx was later overruled by another doctor who felt that, since his head and brain were proportionally correct for the rest of his size (not age), he could not have microcephaly.)
"What could this mean for him?" I asked.
"There is no way of knowing," was the answer.
"Did this mean that he could die young?"
"There is no way of knowing. But no reason to believe so." he quickly added.
Isn't there anything that he could tell us with this knowledge of his brain development?
The simple answer given to me that day was, "No."

Months later, through my own research, I discovered that nearly all children with growth disorders have a small or abnormal corpus callossum, as this is where the pituitary is located. It was this discovery that finally got us a referral to Endocrinology.

In January, we went to our follow-up appointment with Dr. Asshat. We waited in his narrow office for a long time. Finally, he appeared, with a harried looking intern scurrying behind him. He took one look at Elijah, exclaimed, "Wow! Ten months, really? He's so small! I wonder if we should do an MRI on him?"
I nearly choked.
Then I glared at him. I said, "That is why we are here. You already did. Over two months ago. We are here for the results. I am sure it mentions that in the chart you are holding."
He glared at his assistant.
He looked embarrassed, mumbled something at us, and pushed his assistant out the door in front of him as they hurriedly exited.
We stared at each other in disbelief as we waited again in the narrow office.
After a few minutes, the intern came in to show us the MRI results. She showed us a MRI of a normal brain and then showed us the MRI of our son's brain, implying that, once we saw the difference, it would all be crystal clear to us. She pointed out the differences. She said that there was no diagnosis they could make from this MRI, other than the likely label of MR, as a result of the 'microcephaly'. What is MR? If you are a parent and you have never heard this, then aren't you lucky? It stands for mental retardation.
After she was done 'explaining' the MRI, The Doctor came back in and asked if we had any questions. I asked him all the same questions I had asked him on the phone two months before. His responses were the same. I asked him if we should come back again in a few months.
His hand was already on the doorknob when he turned around to face us, gave a royal wave with his hand, and replied with mock flourish, "My work here is done!"
That was fine with me, as I wanted to return there almost as much as I wanted to pluck my fingernails out. Also, we had already decided to stop allowing the doctors and people surrounding us to only focus on what Elijah could not do. We were well aware of what he could not do. But how about one goddamned person in his life focusing on what he could do? Well, we took on that role.
After the terrible phone call, before we took our beautiful children to Kauai, we decided that we had had enough. We were going to enjoy every aspect of our children, every special thing that made each of them different. And no more listening to doctors who had nothing to say.
The night before we got on the plane, I said to dh, "We are going on vacation. It's his vacation too, and I think we all need a break from hearing 'Ohmygod he's so SMALL!'. He is the size of a three month old, so we will lie. We tell people that he is three months old."
It was agreed.
When we boarded the plane, the flight attendant took one look at the blue-eyed cherub in my arms, and proffered the typical greeting, "Oh...how old is he?"
"Three months!" I answered quickly.
"Ooooohhhhhhh....he is adorable! What a precious baby! Look at those cheeks! Oh Lynn- come and look at this baby!"

That was the first time in his eight months of life that a stranger had greeted him that way. My eyes met with dh's, and we both got a bit watery.
What had we done? We had already allowed the world to shit on him because we weren't jaded enough to be dishonest.
We never were honest about his age again. And for the rest of his life, in those situations, he got what he had missed for the first eight months of his life: all that extra lovin.

added note: It should be mentioned that I sent a scathing letter about this doctor which may or may not have intiated the survey that was then conducted among his patients. He is no longer working there.

Grudge Tuesday: Day 76 The End

Okay.
Well, I guess we're done with that one.


So. I am the owner of a new XPS notebook. AHEM. I have no idea what all that means, but I do know that it is more excitement than I require, and will probably buy months of renewable awe from a person like me. Me, the 'owner'.
Wow.