MY LITTLE KANGAROO-CUB

Everybody around us has been wonderfully supportive through the beginning of this ordeal and, I'm thankful to be surrounded by such caring and loving friends and family.

Little Peeper's God-parents got us a Babybjorn Comfort Carrier right before we went to the children's hospital in Stockholm, so that we wouldn't have to bring the stroller on the train. There's really no good place to put a stroller on there, at least not if one is a bit skeptic to believing in other people's honesty, something that I'll admit I gave up on years ago.

I prefer to be able to keep my belongings close by at all times when I travel, especially after the time when an old lady almost got away with stealing my suitcase, containing pretty much everything I owned at the time, or at least all that I could carry, including 2 weeks worth of clothes and, my beloved laptop.

I had been abroad participating in a tournament and, after that I had visited with friends, so I had been away from home for a while.

Alex had been staying with my mom and, the train I was on to get home was gonna make a stop at a station near by where my mom lives, so she was gonna put him on the train so that we could go on home together.

It was only luck and, my observant 10-year-old which allowed my mom to catch the thief. Had she attempted to steal it at any other station along the way, Alex would never have seen her and commented on that the lady had mom's suitcase...

My mom of course just thought she had one that looked like mine, but when Alex joined me, we went to get the laptop out and, discovered that my luggage was gone. I called my mom and, she just yelled that she saw the witch who took it and, then she ran...

The witch in question appeared to have been collecting stuff both here and there, cause she had a million different suitcases, backpacks and bags to drag around, which was good for us, cause she hadn't gotten very far.

At first she tried to hold on to the suitcase and say that it was hers and, when my mom said that it belonged to her daughter and, pointed to the name tags which were left on there from the plane ride, she tried to say that I had asked her to get it off the train for me and, then I had disappeared. Still she would not let the suitcase go, but she got scared when my mom mentioned the police.

We should have reported her anyway of course, but my mom's main concern was to get the suitcase back to me before the train left and, by some kind of providence the departure had been delayed so she managed to hand it over right as we were getting ready to leave.
Meanwhile the lady had of course disappeared, so there was no point in calling the police; after all I had gotten it back, so they wouldn't waste their resources on trying to find the thief. Anyway, this is why I don't want to bring anything that can't be stored above my seat on the train.

For that reason and, many more the Babybjorn works great for us, I totally love it! He doesn't feel heavy at all to carry around for hours and, he loves to be that close to me all the time. Except when it's windy or raining outside of course...

There's no easy way to protect him from the wind and the rain blowing in his face and, the first time it happened he got so scared he was shaking all over before I could turn him around so that he was facing me instead of facing forward. But with the way the wind is here on the west coast, not even turning him around keeps him completely sheltered from the weather.

There's a cover one can by extra that'll keep the baby warm and, protect against wind and rain, but to be honest we can't afford it right now. We weren't rich before this ordeal started, but the traveling back and forth to the children's hospital in Stockholm and, the living expenses up there is not gonna help matters one bit. The medecins aren't cheap either even though I know that we can thank the stars above that we're living in Sweden where health care is a lot more affordable than in many other countries...

Sorry, I'm complaining a lot, but the reason I have a blog is after all that writing allows me to vent as much as I want to so, I'll just go on complaining a bit more thank you...

Our little Kangaroo-cub turned 8 months this past Wednesday.

I read other rainbow baby blogs and, there are of course some rainbow babies who are the same age as our little one, who I up until now have loved to read about. But right now I'm at a point where I wanna comment on all of the posts I read, telling all these mothers, who have already suffered the loss of a child, to enjoy life while they can, cause tomorrow their precious little one may be diagnosed with Cancer.

I wanna tell them to hug their children while they can. Enjoy that they're developping normally, in their own way, while they can. Be grateful that they fussed all night because of colich and not side effects from chemo...

I feel a little bit like I did after I lost little Andreas. I envy all mothers that they can right down their babies new abilities while I'm forced to watch my baby being less and less interested in anything but being carried around in my arms and, at the same time I feel like a horrible person, cause these mothers don't need reminders of how fragile their happiness is...

I keep telling myself that I'm still lucky in a way; I have my little rainbow here still. My arms are not empty this time. Life just diddn't turn out the way I wanted it to... But I feel robbed just the same.

And always... Always... There is the fear of losing him... Of being left with arms aching to hold, a longing to care for, and a heart overflowing with love, but with no one to give that love to...

We thought we would get released from the hospital as an 8-month birthday present, but Unfortunately the delivery to the pharmacy had gotten delayed and, we still could not get his anti-nausea medication.

We got to go home over night though and after spending 8 days in the hospital in Stockholm and, then only getting out of that one to end up in another hospital for 5 more days 20 hours later, I kind of felt like I was being released from prison.

Our little kangaroo-cub was happy to get out of there as well, It was easy to see by the way he was smiling at everybody when we were leaving. I carried him out of here, but he was quite happy to be in the stroller as well once we got outside. We walked home of course, we can't take the bus now unless it's absolutely necessary, not with a baby with a week immune system. If one wants to catch a virus of some sort, that is probably one of the best places to hang out.

Little kangaroo-cub is by the way his new nickname in addition to: "little Peeper," and, "little Squeeker." Little Peeper is being used a lot more again, cause he has started to make little peeping sounds again, just like after he was born. Kangaroo-cub came about cause now that we got the Baby carrier, that's where he wants to be, all the time. Though I guess it doesn't matter to him whether he's in my arms or in the carrier as long as he can b close to me and, that's a kangaroo-cub for ya.

It's really sad, cause he was getting rather independent there right before we started the chemo, but with him not feeling good all the time, he has not really tried to crawl during the last week or so and, he almost loses his balance when I try to let him walk now. Just holding on to my hands like before is not enough, I have to hold him up under his armpits.

He has always loved jumping up and down, even when they gave him the chemo, it was hard to get him to stay still and, to keep those little curious fingers away from needles and lines. But perhaps that was just a trick of the blood transfusion... I don't know...

All I know is that I want my old little bundle of energy back.

He is better now and, that is something to be grateful for. But he is not back to normal and, I wonder when he will be and, how much this will set him back. In just 10 days it's time for another round of chemo and, I just wanna cry...

He is enjoying toys again especially the keyboard they have in the hospital, but he plays too quietly now. How I wish my arms were tired from helping him jump up and down again...

He's in pain a lot of the time and, he ate almost nothing for several days, he's got some catching up to do, so of course that takes it's toll on him. It's not that I don't understand that... I just wish things were different...

Memento mori

I was talking to a friend who I hadn't talked to in a long time this morning and, as usual at such occasions she had to update me on all the latest gossip about old friends and acquaintances.

"And what about Sari? Has she had her baby yet?"

Such a "normal," "ordinary" question...

a question that I use to ask while preparing to close my ears for the next 20 minutes as soon as I had gotten a "yes" or "no" answer.

A "no" always meant a detailed description of how the mother to be was going crazy cause the baby should have been here days ago and, how many stretch marks she was gonna have because of this, how swollen her ankles and wrists were and, how often she had to run to the bathroom to avoid having an accident, etc, etc. Never for one minute pausing to take in how lucky she was to carry a healthy, live baby inside of her.

A "yes" on the other hand, meant a detailed account of all the different stages of labor and, quite frankly, I was never very interested in that sort of thing, not even after having Alex and, after losing Andreas I just didn't want to even think about labor again.

Don't get me wrong. I understand wanting to share the experience as a whole, the worry because the baby was in distress and his or her heartbeat was irregular, the anxiety cause the baby was posterior, the umbilical cord was around his or her neck, or just plane fear that something would go wrong, for no reason and, of course above all, the overwhelming joy of holding the little one for the first time - all those things that matters. I just never cared for the gory details.

I never felt the need to try to turn my own labor into the entertainment of the girls night out, for the same reason I didn't turn those hours of pain into a tea party with friends and family invited - it's not really that entertaining at all.

It's a perfectly normal state and, something that one has to go through with as much dignity as possible - no unnecessary screaming, no being mean to people just because one's in pain and, no other crazy drama either...

Nobody said it was going to be pleasant, but on the other side of it, if you're lucky, you're gonna have the most wonderful reward ever - a beautiful little bundle of joy, making you the happiest woman in the world.

That's the part I wanna hear about... A happy mother with a wonderful, healthy baby, not how many centimeters the mother tore while pushing out the baby's head...

I haven't changed much when it comes to that part of and, I realise that I seem to be alone when it comes to these views. It may be because I have issues; who knows? But when women tell me that they screamed there way through the whole thing or, that they told everybody around them to go to hell or things like that I'm just amazed and yes, a little disgusted; how could they humiliate themselves like that?

But, like I said... Probably my own issues...

Either way, I stopped taking a happy ending for granted years ago...

For a long time I was always expecting bad news when someone was pregnant. Not only did I myself lose my little Andreas in 2001, but my sisters best friend lost her daughter, little Mikeala, that same summer, just days before she should have been born. Shortly after that my boyfriend got a phone call from his ex in the middle of the night and, she had just lost her son, Matty, the same way.

But years have passed since then without anything going wrong to the people close to me, except for a few miscarriages in the first trimester.

I know that there are those of you who have tried for years and, who have to go through miscarriaged, after miscarriage, after miscarriage...

I don't mean to take away from your pain.

I'm not trying to say that early miscarriages don't count; they do and, I know that that experience will make you unhappy as well. I had one in 1999 and one in 2003, so I know that it is devastating.

But I will still tell you that they are easier to deal with both physically and mentally than a late one.

Just as I'm certain that a late miscarriage is easier to survive than losing a child that has been alive an breathing in your arms.

It is not in any way a comppetition and, there is little consolation in that "it could have been worse" when it happens to you.

It's still a loss. Still a broken dream. Still a little person you'll never get to know. A little baby you'll never get to hold. But it is, in most cases, easier to move on and, try again. Especially for the world around you.


Having my little rainbow baby has brought me so much happiness in spite of all the worrying about cancer and, it may be that which has somehow made me fly so high that I forgot for a moment how deep the abyss was and, how easily I could fall back down again. All happy people are selfish...

I suppose in a way it shows that time has done it's job and, healed the wounds at least on the surface.

Although I constantly read about so much loss and unhappiness, I also read a lot of things that gives me hope and, it seems I don't always automatically expect things to go wrong anymore.

But I should have known... Shouldn't have closed my mind to the whisper: "Memento mori..." "Memento mori..." "Remember your mortality..."

I just wish I didn't have to realise that, when the "normal", "ordinary" question suddenly is hanging there between us like a snake getting ready to sink it's poisonous fangs into my stupid expectations.

It is a poison I know well... A poison made of the darkest sorrow, of broken dreams and, the tears of broken hearted mothers. It takes on various names and shapes such as: Dread, Bitterness, Doubt and, Despair and it will once again spread that numbing pain throughout my body and, devour the courage I need to live. It'll once again make me afraid to love, for fear of losing the loved one...

Suddenly I want to hang up so that I don't have to hear it, so that I can keep denying it and, pretend that there's hope for a little bit longer. But of course I don't and, there it is...

"I thought I told you... she lost
her baby boy at 25 weeks jestation..."

Brave Little baby Alexander

It is with a heavy heart and, flowing tears that I write this post.
Sweet little baby Alexander, who has been a symbol of hope and strength every day of his short life, ever since he was born 6 months ago, left the struggles of this world on the 8th of November..

. He won countless battles against death there in the NICU and, I was so hoping that he would be able to beat the ods and, make it home to his parents loving arms. I have been thinking of him every day since I first came across his story.

Life is so unfair and, it should never have happened. No babies should be born into this world destined to struggle every second of their life, simpley for the right to live and breathe...

No mother's should have to watch their baby die, praying for a miracle, that never happens...

No mother should have to leave the hospital with empty arms, forever aching to give her baby all the love, protection and, safety that should be the birth right of all children...

It just shouldn't happen...But it does... And it breaks my heart every time...

I cry for babies i'll never have the privilige to meet and, for the aching emptyness that their mothers have to face.
It is a darkness I know well. For I have walked that road for over 11 years now.

I wish there was something I could say or do for little Alexander's poor mother and, for all the mothers out there who have and, will be forced to suffer through the loss of a baby, but there isn't... Except maybe that time helps. It doesn't heal...But it helps to eas the pain a little...

I'm so, so sorry little Alexander. Life should have had more to offer you, but your mom is right all the way.. You have touched many lives and, you will continue to do so, as people read your story and, learn what a brave little warrior you were.

Alexander Merlin: November 9, 2011: It is with great sorrow that I sit here and write this entry. Yesterday, Alexander began a new journey.  Last week, the doctors informed us ...

relentless fear

"Is this *'s mother?" Asks a slightly familiar voice on the other end of the line.

"this is her."I confirm.

"This is doctor *** who did the eye exam on your son a while back and, I have spoken to a specialist about his case."

- "A specialist? why, I thought they were sure there was nothing wrong with him." Why do we need a specialist all of a sudden? My thoughts are chasing each other like those dark dirty clouds which sometimes blows in from the sea to block out the sunlight with in seconds. Except this time they're just forming one vile word across the blue happy skys... cancer...

"The doctor recommended that we examine him again as soon as possible just to make sure that we didn't miss any signs of Retinoblastoma and, we'd like him to be sedated during the procedure." Her efficient professional voice continues, unaware of that every word is crushing into my world like a zunami and, that suddenly I'm drowning in memories of a little tiny body, straining with one febal attempt to live, before it relaxed and went to sleep forever.

- "He can't have the Retinoblastoma! You said there were no signs of tumors in his eyes! That there was no reason to worry... And sedated at 5 months?!" I want to scream at her.
"Babies die from such procedures. Doctors make mistakes... And babies die! He's too little, you can't do it yet... don't you understand that I can't live without him?!"

We're just now getting into a little bit safer teritory, so that I don't have to hold my panic at bay by making sure that he's breathing every other minute.

Most cases of sudden infant death syndrom happens when the baby is 3 to 4 months old. And he is finally almost 5... Almost...

'it doesn't matter that
i know that
i don't haveany more reason to worry about SIDS than any other parent of a premature baby.'i'll always worry now... Cause now i know that babies die.

We all know that of course. But it's because we saw it on tv, read it in a book, or because it happened to a friend of a friend. For the compassionate ones it's reason enough to shed a couple of tears and, offer their condoleances, the rest look the other way and say nothing at all...

For me, it also use to be reason enough to check on Alex quite often too make sure that he was breathing. But
i never really let it in. But perhaps that's just not possible until one has felt the body of one's child turn cold and, been forced to realise that no matter what one did, nothing could be done to keep him warm. No matter how I prayed for a miracle...

But of course I say nothing of this... I just ask her when we should schedule the procedure and, she tells me that a nurse will contact me to set it up with in a month.

We hang up and, I hold my sleeping little miracle closer. And I cry...

Tempting Provedence

Last time Michelle was here, she brought a lot of clothes which Elias had outgrown again and, all the ones she brought us the time before were too small for Peeper already, so the timing couldn't have been better.

It's really saving us a lot of money, so I'm very grateful that Peeps has a cousin who is just one month older and, of course that I have a generous sister, who wants to give away his old clothes.

She knows of course that it works both ways though, something that's easily proven by the fact that some of the stuff she gave us was Alex's once upon a time 14 years ago... Some of it can even be traced all the way back to my youngest brother, Benji, and my niece, Nathalie, which means that it's at least 20 years old and, it still looks nice. Now that's what I call quality.

Michelle says she's not going to have any more children, so she's giving all the baby clothes away now, but she makes sure to save all the things that may have been Alex's for me.

I really appreciate that. it's nice to be able to put some of those clothes on little Peeper. I gave everything to my older sister's baby 10 years ago, since little Andreas wasn't going to be able to wear any of it anyway. They would have been... Should have been... The same age. Should even have been born the same week...

Sometimes I feel Like history is repeating itself and, giving us a different outcome. Almost like it's trying to make up for the past.
10 years after those weeks of agony and, the ever present void that followed, when just one of the cousins was allowed to stay with us, two little cousins are both safely brought into this world. Two little boys the same age who can become perfect little hellions and drive their parents mad together... Or make us happy beyond words...Two live and healthy babies. Two, this time... Not just one... Noone left with empty arms and a broken heart... Two... Finally bringing some healing...

Though I can't help but feel that I'm tempting fate just writing that down. Yeh, even just thinking it...

A little guy in need

I recently found this blog about a little premature boy who's been fighting to come home to the safety of his mom's and dad's arms for 4 months now.

It has made me happy to read about his progress and I've been waiting for the post where I'd be able to read about his first days outside the hospital with the same anticipation as I once felt while waiting for the the twins to be born when I was expecting Joshua. It has given me hope in some inexplicable way.

But things are not going well now and they're not really sure why.

It breaks my heart and I cried when I read the last update about him:
Alexander Merlin: September 1, 2011: Things here are not going well. After the weekend, the CO2 in Alexander's blood went way up. The doctors were unable to get it back down on ...

In a different life, with a different outcome, it could have been either one of my children laying there, struggling for every breath...

Especially little Andreas, who never got the chance to try, because they told me his lungs would have failed anyway. I'll never know if I did the right thing by choosing not to let him suffer. Sometimes, the doctors are wrong you know....

Still, I have to try to hold on to the thought that it would have been so selfish of me to let him die a slow agonizing death just because I didn't want to accept that he didn't have a chance. The right thing to do was to let the doctors help him go as easy as possible. Or wasn't it. I'll never know...

My heart is breaking for this little guys mother. If there's any way I can send her and her beautiful baby boy strength through my thoughts, there's lots coming their way.