Believe it or not, but we were released from the hospital yesterday!
Peeper has been an outpatient since Thursday and, that's when we finally started to see some real change in his neutrophils. Friday when we came in to get his daily dosage of antibiotics, which had to be given intravenously, his neutrophils were at 0,2, which meant that they were up one unit from the day before. Still not good enough to start taking the antibiotics orally, the magic line is at 0,3, but still a heck of a lot better than before. Saturday however, they were up to 0,5 and, just like that, we were finally released.
it's easy to see that he's feeling better; he's playing again! And he's eating! Almost a whole carrot for lunch and, almost a whole dl of hot apple cereal before bedtime today and, he's even helping to put the spoon in his mouth. In our new normal I've had to constantly try to distract him to keep him from turning his head away, pushing the spoon out of my hand or, just plain refusing to open his mouth, so this is wonderful to see. on top of that he's of course nursing as usual and, I'm so thankful.
It's gotten me thinking of perspective again.
There's so much that we take for granted...
Even those of us who have experience loss...
We worry and agonize over potential harm to our little ones a lot more than others, but I can honestly say that nothing could prepare me for being forced to have to tube feed my 8-month-old, or to be grateful for every spoon full that he willingly puts in his mouth. It's nobodies fault... It's just the way life goes...
He's going back in tomorrow for some more blood work and, after that the final decision can be made on whether he will be capable to go to Stockholm for his second round of chemo or not.
It'd of course be best to get it done on time, so that the tumors are kept in check, but I doubt that they'll be able to go through with the EUA, cause he's still got a terrible cough and, I can feel the phlegm moving around in there if I put my hand on his back when he's breathing. It's still only in his upper Respiratory tracts and, the antibiotics he's taking now will cover a potential bacterial infection, which at this point with his immune system being so week could turn into pneumonia from one moment to the next, but where things stand right now they cannot give him any anesthetics...
Hopefully it doesn't take all day tomorrow. They screwed up the tests Saturday so we didn't get out of there until after 5 o'clock. .
The nurse from the day before put a little bit of Heparin too keep the blood from coagulating in the line. She said it's only necessary if one is going to wait for more that 24 hours before one uses the portacath again, but since he was going to have the antibiotics once a day, it was right on the edge and, if they got a little bit delayed it was better to have it in there than taking the chance of a blood clot.
This proved to be good thinking, since we cane in at 8:30 in the morning, but had to wait around until after 10 o'clock before they had time to hook him up to the IV.
With medication in the line, the nurse who takes the blood samples always gotta draw a bit out before the so to speak useful blood becomes available. I don't know if it was that the nurse from the day before didn't put in his file that she gave the Heparin, or if the nurse who took the samples hadn't read it properly, it wouldn't be the first time, but the blood that was sent to the Lab was too diluted to give accurate results. Something that became obvious when his red blood cell count came back at 48, a rather alarming number...
This was found out around 2 pm or so way after he's drip of antibiotics was done and, since they don't want to use the portacath unless it's absolutely necessary, especially not now that he's so hyper sensitive to infections, they had to prick his tow instead, which sort of counter fits the whole idea with the portacath... Part of the reason for him having it in there is to spare him all these constant pricking and poking with needles.
Believe it or not, but he didn't even say a peep. We had brought a new book for him with animals and with buttons which will produce the sound of the animal in the picture when pushed and, he was way to preoccupied with that to care what they did to him.
I'm glad it didn't seem to bother him, but at the same time it breaks my heart, cause it means that he is now so use to this that he has adjusted to it and, raised his tolerance level to a point where most adults I know would be complaining and,, noisily at that.
Anyway, after that it took another 3 hours before we finally were out of there. But we will at least have a couple of nights in our own bed, unless something unforeseen happens, before it's time to go back to the hospital again. A few days of respite before the nightmare can start over...
Showing posts with label Baby loss. Show all posts
Showing posts with label Baby loss. Show all posts
Sunday, February 5, 2012
Friday, January 27, 2012
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...
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...
Tuesday, January 3, 2012
Caught in a nightmare
What can I say...
Last night I was worried about nightmares... Today I'm living in one...
I did the research. I tried to be prepared for the worst, but somehow I must still have been stupid enough to think that life would finally cut me a break, but I see life gives breaks to no one.
Nothing in life can prepare you for the day that a doctor walks out of surgery to tell you your 7 month old baby is very likely to have malignant tumors in both eyes. That because of the necessary treatment of this disease, the life you dreamed of having with him is not the life that you will get to live...
He was such a little warrior today. We had to get up at 4 AM to be able to be in Ludn by 7:30, so that the eye drops which dilates his pupils would have time to take effect before the examination. He was also to get something to make him calm before he was given the anesthetics. I honestly thought it'd be a hard time getting over there, since he wasn't allowed to eat, but he was so super good the whole time during the trip over there and, during the 30 minutes we had to stand around and do nothing while waiting for the department for day surgery to open.
They let us in around 20 after 7, so I thought that we might even be starting early, but they didn't even do anything for the first 30 minutes, except give me some paperwork to fill out, which they by the way did not want to read to me, so Alex had to do that. The nurse didn't straight up refuse, but when I pointed out to her that I would need help to fill them out she quickly turned to Alex and, asked him why he couldn't do it. I again, pointed out that he's 14 years old and, that it's important that everything's done correctly, but she just shrugged it off and walked away.
I'm assuming that she didn't want to listen to little peeper screaming from such a close distance, but hey, I'd be screaming too if I was starving and nobody would give me something to eat.
You'd think that could motivate them to hurry things along a little bit, but instead they let him cry for 20 minutes before they finally gave us a room and, got him the medication that he needed. There were no other patients there, so lack of time was not the reason for this. Needless to say I was about to start screaming myself...
He got sleepy right away after he had gotten the medication however. He didn't fall asleep, but he was super calm. I was a little bit worried about that, cause that sort of medication had the opposite effect on me when I was little. If my mom is to be believed that is; it may just have been that I of course, like any child who has been forced to go through difficult treatment, had learned to fear the hospital.
I went with to the operating theater and, stayed with little Peeper until he was asleep. They couldn't find a vein at first, so it took a little while before they could start. I had put a anesthetic cream on his hands, but I was worried about that too. I'm allergic to that cream myself, so I wasn't sure if he would be too. That and it was very hard to get the band aids to stay on. They use the same ones for babies and adults and, it doesn't take much to figure out why that is a bad idea.
They were way too big, so he could easily get a hold of them and pull them off. That and, he kept trying to eat them, so I was afraid that the cream wouldn't have had any effect at all even if he didn't have a reaction to it. I'm really grateful that it worked, cause he didn't feel a thing even though they had to try over and over.
He just kept trying to eat on their hands and, he was talking away to all of them in his own adorable way. The people in there were great and, I was a lot calmer coming out of there than I had been walking in.
I wasn't allowed to stay during the procedure, but the whole thing took no more than 15 minutes and, I knew right away that something was wrong, cause the doctor asked for a private room where she could speak to us and, if he had been alright she could have just said so there and then, cause there were still no other patients around in the waiting room.
She suspects one tumor in the center of his right eye and one to the side of Macula in his left one. She's not allowed to say that it's Retinoblastoma, cause we have to go on to Stockholm for further testing, but that is still what we have to prepare ourselves for.
B wants to believe that there is still hope that it won't be the cancer, but I don't think so. It's better to be prepared and, try to take in that that is what it is. There's no reason to be an ostrich. It won't all go away no matter how deep we try to bury our heads in the sand...
After the meeting with the doctor we could go sit by Squeaker's bed and wait for him to wake up. I'm not sure how long it took, but maybe 30 minutes or so. He didn't even fuss or anything when he came too. He was content with that he was finally allowed to eat and, after that he just wanted me to hug him and, he kept wanting to give me kisses over and over.
I just wished that I could curl into a ball around him and, protect him against all evil. Or that I could take him back into my body so that he'd never have to know about vile things like Retinoblastoma.
As parents, our basic instinct is to strive to protect our children. We'll live for them. We'll fight for them. We'll die for them. If I could take the cancer for him I would. But there's nothing I can do... Nothing... Except watch him suffer and, try to motivate him to fight. Though I'm not sure how to do that, when all I want to do is cry...
All I can do is hold him when he cries and, try to comfort him and, lie that everything will be alright. It will not be alright!
He will have to deal with all sorts of terrible side effects from the Chemo. He will lose his wonderfully downy hair, He will be sick. He will be hurting. He may even lose hearing and, in the end he may lose his vision anyway. He will be in pain. He will be crying and, he won't understand what's going on. And there's nothing I can do... Nothing...
It’s like being struck by a bolt of lightning on a cloudless day. One day life seems so normal. The next, you are snatched out of that existence and thrown into a world where everything seems like a nightmare. No warning! No way to prepare or put things in order. The world as it has always been, has changed its course forever and, nothing will ever be the same.
I've learned the hard way that life, more often than not, refuses to deliver our hopes and dreams. Once upon a time I had a dream about a miraculous recovery for my little Andreas and, it was to no avail. It took time. But finally I dared to dream again; oh for a healthy, wonderfully soft and warm little baby to fill the void of my existence... And this time... It came true.
My little rainbow, the apple of my eye, my Joy, The reason I wake up happy these days even without the antidepressants. My every day motivator and, the reason I remember even in my darkest moments that there is always the sunrise to look forward to. The reason I tell people that even when there's nothing else, there is always hope. Along with his brother he is all those things and more, but he is now also one more thing... He is a cancer patient; and my world, my dream, my heart are all dying...
Last night I was worried about nightmares... Today I'm living in one...
I did the research. I tried to be prepared for the worst, but somehow I must still have been stupid enough to think that life would finally cut me a break, but I see life gives breaks to no one.
Nothing in life can prepare you for the day that a doctor walks out of surgery to tell you your 7 month old baby is very likely to have malignant tumors in both eyes. That because of the necessary treatment of this disease, the life you dreamed of having with him is not the life that you will get to live...
He was such a little warrior today. We had to get up at 4 AM to be able to be in Ludn by 7:30, so that the eye drops which dilates his pupils would have time to take effect before the examination. He was also to get something to make him calm before he was given the anesthetics. I honestly thought it'd be a hard time getting over there, since he wasn't allowed to eat, but he was so super good the whole time during the trip over there and, during the 30 minutes we had to stand around and do nothing while waiting for the department for day surgery to open.
They let us in around 20 after 7, so I thought that we might even be starting early, but they didn't even do anything for the first 30 minutes, except give me some paperwork to fill out, which they by the way did not want to read to me, so Alex had to do that. The nurse didn't straight up refuse, but when I pointed out to her that I would need help to fill them out she quickly turned to Alex and, asked him why he couldn't do it. I again, pointed out that he's 14 years old and, that it's important that everything's done correctly, but she just shrugged it off and walked away.
I'm assuming that she didn't want to listen to little peeper screaming from such a close distance, but hey, I'd be screaming too if I was starving and nobody would give me something to eat.
You'd think that could motivate them to hurry things along a little bit, but instead they let him cry for 20 minutes before they finally gave us a room and, got him the medication that he needed. There were no other patients there, so lack of time was not the reason for this. Needless to say I was about to start screaming myself...
He got sleepy right away after he had gotten the medication however. He didn't fall asleep, but he was super calm. I was a little bit worried about that, cause that sort of medication had the opposite effect on me when I was little. If my mom is to be believed that is; it may just have been that I of course, like any child who has been forced to go through difficult treatment, had learned to fear the hospital.
I went with to the operating theater and, stayed with little Peeper until he was asleep. They couldn't find a vein at first, so it took a little while before they could start. I had put a anesthetic cream on his hands, but I was worried about that too. I'm allergic to that cream myself, so I wasn't sure if he would be too. That and it was very hard to get the band aids to stay on. They use the same ones for babies and adults and, it doesn't take much to figure out why that is a bad idea.
They were way too big, so he could easily get a hold of them and pull them off. That and, he kept trying to eat them, so I was afraid that the cream wouldn't have had any effect at all even if he didn't have a reaction to it. I'm really grateful that it worked, cause he didn't feel a thing even though they had to try over and over.
He just kept trying to eat on their hands and, he was talking away to all of them in his own adorable way. The people in there were great and, I was a lot calmer coming out of there than I had been walking in.
I wasn't allowed to stay during the procedure, but the whole thing took no more than 15 minutes and, I knew right away that something was wrong, cause the doctor asked for a private room where she could speak to us and, if he had been alright she could have just said so there and then, cause there were still no other patients around in the waiting room.
She suspects one tumor in the center of his right eye and one to the side of Macula in his left one. She's not allowed to say that it's Retinoblastoma, cause we have to go on to Stockholm for further testing, but that is still what we have to prepare ourselves for.
B wants to believe that there is still hope that it won't be the cancer, but I don't think so. It's better to be prepared and, try to take in that that is what it is. There's no reason to be an ostrich. It won't all go away no matter how deep we try to bury our heads in the sand...
After the meeting with the doctor we could go sit by Squeaker's bed and wait for him to wake up. I'm not sure how long it took, but maybe 30 minutes or so. He didn't even fuss or anything when he came too. He was content with that he was finally allowed to eat and, after that he just wanted me to hug him and, he kept wanting to give me kisses over and over.
I just wished that I could curl into a ball around him and, protect him against all evil. Or that I could take him back into my body so that he'd never have to know about vile things like Retinoblastoma.
As parents, our basic instinct is to strive to protect our children. We'll live for them. We'll fight for them. We'll die for them. If I could take the cancer for him I would. But there's nothing I can do... Nothing... Except watch him suffer and, try to motivate him to fight. Though I'm not sure how to do that, when all I want to do is cry...
All I can do is hold him when he cries and, try to comfort him and, lie that everything will be alright. It will not be alright!
He will have to deal with all sorts of terrible side effects from the Chemo. He will lose his wonderfully downy hair, He will be sick. He will be hurting. He may even lose hearing and, in the end he may lose his vision anyway. He will be in pain. He will be crying and, he won't understand what's going on. And there's nothing I can do... Nothing...
It’s like being struck by a bolt of lightning on a cloudless day. One day life seems so normal. The next, you are snatched out of that existence and thrown into a world where everything seems like a nightmare. No warning! No way to prepare or put things in order. The world as it has always been, has changed its course forever and, nothing will ever be the same.
I've learned the hard way that life, more often than not, refuses to deliver our hopes and dreams. Once upon a time I had a dream about a miraculous recovery for my little Andreas and, it was to no avail. It took time. But finally I dared to dream again; oh for a healthy, wonderfully soft and warm little baby to fill the void of my existence... And this time... It came true.
My little rainbow, the apple of my eye, my Joy, The reason I wake up happy these days even without the antidepressants. My every day motivator and, the reason I remember even in my darkest moments that there is always the sunrise to look forward to. The reason I tell people that even when there's nothing else, there is always hope. Along with his brother he is all those things and more, but he is now also one more thing... He is a cancer patient; and my world, my dream, my heart are all dying...
Thursday, December 15, 2011
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..."
"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..."
Monday, December 12, 2011
Lucia; where art thou?
Little Squeaker's second tooth finally broke through today and, to make things even better, my mom somehow managed to get him to take a bottle of formula, so hopefully there's now a little more sleep coming our way.
. That was the highlights of the day and, it's been down hill from that point.
First off today I got a glimpse of what could have been and, a reminder of what I don't have...
Alex's cousin, Joel is here. He is 10 years old. He is also the baby that was born right around the time when my baby should have been born... The baby who lived in spite of pre-aclampsia and in spite of being born with the umbilical cord around his neck... The baby who made it against all odds... When little Andreas didn't..
This morning he spent an eternity standing by little squeaker's crib, trying to keep him calm. He was just talking away to him and, stroking his head. Squeaker was making little sounds as if he was answering and, In the end those 2 where going back and forth as if they were having a real conversation. After a while Joel came to me and told me that our little miracle is the cutest little baby ever...
The scene rung my heart. It would have been... Should have been... Just like that... Another little 10-year-old should be standing there, talking to his brother...
It's been a while since I felt like that, but sometimes I so long for what could have been.
Strangely enough, It didn't bother me when Joel was a baby. Perhaps because I was determined not to let it. My sister was so supportive of me during that time. When I was hoping against hope, she hoped with me and, when my little one didn't make it she cried as well...
I think it started that Christmas when me and T lost our second baby and, I decided that there would never be another one...
It was an early miscarriage that time, just 9 weeks along, so it was nothing like the first time and, yet in a way it was, cause there was still a heartbeat when I first started bleeding. The doctor gave us a bit of hope and sent me home to take it easy. She even scheduled an appointment for me on Christmas day to check again, but when we came in that morning that little life had given up on me as well... And so I gave up too... I was done.
3 months later I had moved back to the south, without T. I was done with relationships too and, it took me 5 years to change my mind; until B came back to Sweden for the second time in January 2009. It would take me 3 more years before I wanted to try to have another baby, even though that tumor they removed from my uterus in 2007 was the likely cause of my loss of Andreas, as well as my 2 miscarriages in the first trimester.
T Had changed over the 3 years since we lost our first and, he had longed for this baby too, but I just couldn't forgive him... I'm not sure I have till this day, we could never have made it as a couple, but we're the best of friends now, just like before we fell in love.
When I made the decision to quit trying for another baby, I was no longer on guard against a certain type of thoughts and, I often found myself sitting with my sister's son on my lap, wishing with all my might that he was mine.
I had Alex of course and, I know that I was lucky to have him. He gave me something to live for at my darkest hour. But I will always wonder what it would have been like to have his brother here with us; and what would he have been like? Who would he look like? What would his laughter sound like? How would his little hand feel like in mine? So many questions; and I'll never know the answer...
Today I finally asked my mom how she survived after losing my brother at birth. She had her mother she said. She was such a nice and caring person my grandmother and, I know that she too had lost a baby at 7 months gestation, so she would have known what my mom was going through.
That in it's turn makes me wonder who was there for her. Perhaps she lost other babies too... It is 10 years between my uncle and my mom you see and, that wasn't very common back then. I hope somebody was kind to her, cause I know that my grandfather probably wasn't and, nor was her mom...
My mind is taking me in so many different directions today, but I'll finally get to describing the rest of this terrible day...
As I have mentioned before, my son attends the music school here in the city and they're setting up a Lucia concert at the concert house to celebrate hope and light every year.
Chrissie and her fiance and sometimes my dad will always come with me to these events,but things were going to be a bit different this year...
My sister's fiance had to work this time, so she had to come on her own and, as for my dad, we're very glad that he made it to the baptism, cause he really needs to stay home and take it easy.
He recently had a slight heart attack... So slight in fact, that he didn't even experience any pain and, the doctor things that he probably had it in his sleep, since all he's noticed is that he's been extremely tired lately and, that he's been getting out of breath for no reason. He wasn't even going to go to the doctor at first...
Isn't that like a man...
He is scheduled for an ultra sound tomorrow, so we don't really know how much damaged the heart attack has done yet, but with the diet he keeps, literally no exercise and, all that smoking he is very lucky that he got off so easily and, the doctor told him so as well.
He really needs to start taking better care of himself. Me and my sisters have been trying to get him to improve his diet and levels of exercise for years. I can only hope that he takes this for what it is; a warning and, a motivator...
In stead my mom was going to come with us to the concert. It would be her first, as she's been too sick to go for quite some time now and, before that her work prevented her from going.
Little Squeaker has a cold and has been miserable all day and, to make things even better it was also poring down out there when it was time for us to go to the bus. We debated back and forth if one of us should stay home and who that one should be, but decided to give it a try and just leave early if it didn't work out.
We had just closed the door behind us when I realized that I hadn't printed out the tickets yet and, then all hell broke lose.
Alex and my brother had borrowed my laptop and forgotten to put the charger back and, of course I couldn't find it.
No panic at the disco however... I just forwarded the email to B and tried to get it to work from his computer instead. It shouldn't take more than a minute...
Except he's got Windows7 on there and, of course, I didn't even know where to find internet Explorer in that OS, so after looking around for a while I had Alex's cousin rung get B so that he could fix it... Still no panic; it'd only take a minute once he got back up here.
Or that's what I thought, cause it turned out he didn't have Acrobat Reader, so he couldn't print out the PDF-file from his computer.
Easy enough to just go download the program right? Wrong!
You see it automatically picks a language based on your location and, of course everything on the website was now in Swedish... Which meant that he had to give the machine back to me...
When we finally got the freaking tickets printed we had 25 minutes to go until the concert was suppose to start...
Then my sister decided that she wouldn't go, cause she just couldn't deal with the stress of walking in there late... This thyroid business has still got her tolerance for stress reduced to nothingness.
My mom decided that she wasn't up to it either, cause she wasn't feeling good...
Alex's cousin wanted to stay here and play video games and, B decided to stay here with Squeaker to keep him out of the rain.
So I went on my own...
I'm not gonna have Alex stand there looking around for us only to be left with the notion that nobody cared enough about him to come to listen and watch.
There's another crucial little detail as well and, that is that he was too sick to go, but he went anyway cause it would be his grandma's first concert. She even asked him to do it for her sake...
In the end it was good that she didn't come, cause there had been a mistake with our tickets, so I had to climb up several stairs to get to our seats and, she would never have been able to get up there, but it was a disappointment just the same and, it may be unfair, but It kind of felt like she stayed behind because she thought that my sister would stay over here and hang out, which she didn't, she just went home....
If truth be told I was so upset about how they all acted that I spent most of the concert choking back tears. I just thought it was so mean to Alex not to at least try. More over, they always start the concert late anyway and, I still had 15 minutes to go when I got there.
It's been a long time since I had trouble controlling my emotions in public. It's not my style. I want to go and hide somewhere and be left alone when I'm sad. But sometimes the tears just fall anyway, no matter how hard I try.
It didn't use to be that way, but now, songs and movies and all kinds of things can make me cry. Gone are the days when "Titanic" was the only movie that had ever stirred something so deep in me that it could draw tears.
I even broke down at a restaurant in Stockholm once during that terrible summer 2010, all because they played a particular song and, I thought it was over between me and B. I didn't sit there and boll obviously, but tears were falling... No one noticed however, that's one of the advantages of going out with blind friends..
As for today, I'm not sure how I made it through without crying. The first part of the concert is always the lucia songs and, it's so beautiful that it brings tears to my eyes even without the extra stress added to it.. Not to mention the months and months without sleep before and after the arrival of our little miracle.
On top of all that I am now also getting sick. I was so cold that I was shaking while watching the concert and, I still can't get warm. Just what I need now with all the preparations for Christmas coming up...
If Lucia is coming around with hope and light this year; she had better hurry up and come on over... If she gets here fast enough she may even get to join my pity party...
. That was the highlights of the day and, it's been down hill from that point.
First off today I got a glimpse of what could have been and, a reminder of what I don't have...
Alex's cousin, Joel is here. He is 10 years old. He is also the baby that was born right around the time when my baby should have been born... The baby who lived in spite of pre-aclampsia and in spite of being born with the umbilical cord around his neck... The baby who made it against all odds... When little Andreas didn't..
This morning he spent an eternity standing by little squeaker's crib, trying to keep him calm. He was just talking away to him and, stroking his head. Squeaker was making little sounds as if he was answering and, In the end those 2 where going back and forth as if they were having a real conversation. After a while Joel came to me and told me that our little miracle is the cutest little baby ever...
The scene rung my heart. It would have been... Should have been... Just like that... Another little 10-year-old should be standing there, talking to his brother...
It's been a while since I felt like that, but sometimes I so long for what could have been.
Strangely enough, It didn't bother me when Joel was a baby. Perhaps because I was determined not to let it. My sister was so supportive of me during that time. When I was hoping against hope, she hoped with me and, when my little one didn't make it she cried as well...
I think it started that Christmas when me and T lost our second baby and, I decided that there would never be another one...
It was an early miscarriage that time, just 9 weeks along, so it was nothing like the first time and, yet in a way it was, cause there was still a heartbeat when I first started bleeding. The doctor gave us a bit of hope and sent me home to take it easy. She even scheduled an appointment for me on Christmas day to check again, but when we came in that morning that little life had given up on me as well... And so I gave up too... I was done.
3 months later I had moved back to the south, without T. I was done with relationships too and, it took me 5 years to change my mind; until B came back to Sweden for the second time in January 2009. It would take me 3 more years before I wanted to try to have another baby, even though that tumor they removed from my uterus in 2007 was the likely cause of my loss of Andreas, as well as my 2 miscarriages in the first trimester.
T Had changed over the 3 years since we lost our first and, he had longed for this baby too, but I just couldn't forgive him... I'm not sure I have till this day, we could never have made it as a couple, but we're the best of friends now, just like before we fell in love.
When I made the decision to quit trying for another baby, I was no longer on guard against a certain type of thoughts and, I often found myself sitting with my sister's son on my lap, wishing with all my might that he was mine.
I had Alex of course and, I know that I was lucky to have him. He gave me something to live for at my darkest hour. But I will always wonder what it would have been like to have his brother here with us; and what would he have been like? Who would he look like? What would his laughter sound like? How would his little hand feel like in mine? So many questions; and I'll never know the answer...
Today I finally asked my mom how she survived after losing my brother at birth. She had her mother she said. She was such a nice and caring person my grandmother and, I know that she too had lost a baby at 7 months gestation, so she would have known what my mom was going through.
That in it's turn makes me wonder who was there for her. Perhaps she lost other babies too... It is 10 years between my uncle and my mom you see and, that wasn't very common back then. I hope somebody was kind to her, cause I know that my grandfather probably wasn't and, nor was her mom...
My mind is taking me in so many different directions today, but I'll finally get to describing the rest of this terrible day...
As I have mentioned before, my son attends the music school here in the city and they're setting up a Lucia concert at the concert house to celebrate hope and light every year.
Chrissie and her fiance and sometimes my dad will always come with me to these events,but things were going to be a bit different this year...
My sister's fiance had to work this time, so she had to come on her own and, as for my dad, we're very glad that he made it to the baptism, cause he really needs to stay home and take it easy.
He recently had a slight heart attack... So slight in fact, that he didn't even experience any pain and, the doctor things that he probably had it in his sleep, since all he's noticed is that he's been extremely tired lately and, that he's been getting out of breath for no reason. He wasn't even going to go to the doctor at first...
Isn't that like a man...
He is scheduled for an ultra sound tomorrow, so we don't really know how much damaged the heart attack has done yet, but with the diet he keeps, literally no exercise and, all that smoking he is very lucky that he got off so easily and, the doctor told him so as well.
He really needs to start taking better care of himself. Me and my sisters have been trying to get him to improve his diet and levels of exercise for years. I can only hope that he takes this for what it is; a warning and, a motivator...
In stead my mom was going to come with us to the concert. It would be her first, as she's been too sick to go for quite some time now and, before that her work prevented her from going.
Little Squeaker has a cold and has been miserable all day and, to make things even better it was also poring down out there when it was time for us to go to the bus. We debated back and forth if one of us should stay home and who that one should be, but decided to give it a try and just leave early if it didn't work out.
We had just closed the door behind us when I realized that I hadn't printed out the tickets yet and, then all hell broke lose.
Alex and my brother had borrowed my laptop and forgotten to put the charger back and, of course I couldn't find it.
No panic at the disco however... I just forwarded the email to B and tried to get it to work from his computer instead. It shouldn't take more than a minute...
Except he's got Windows7 on there and, of course, I didn't even know where to find internet Explorer in that OS, so after looking around for a while I had Alex's cousin rung get B so that he could fix it... Still no panic; it'd only take a minute once he got back up here.
Or that's what I thought, cause it turned out he didn't have Acrobat Reader, so he couldn't print out the PDF-file from his computer.
Easy enough to just go download the program right? Wrong!
You see it automatically picks a language based on your location and, of course everything on the website was now in Swedish... Which meant that he had to give the machine back to me...
When we finally got the freaking tickets printed we had 25 minutes to go until the concert was suppose to start...
Then my sister decided that she wouldn't go, cause she just couldn't deal with the stress of walking in there late... This thyroid business has still got her tolerance for stress reduced to nothingness.
My mom decided that she wasn't up to it either, cause she wasn't feeling good...
Alex's cousin wanted to stay here and play video games and, B decided to stay here with Squeaker to keep him out of the rain.
So I went on my own...
I'm not gonna have Alex stand there looking around for us only to be left with the notion that nobody cared enough about him to come to listen and watch.
There's another crucial little detail as well and, that is that he was too sick to go, but he went anyway cause it would be his grandma's first concert. She even asked him to do it for her sake...
In the end it was good that she didn't come, cause there had been a mistake with our tickets, so I had to climb up several stairs to get to our seats and, she would never have been able to get up there, but it was a disappointment just the same and, it may be unfair, but It kind of felt like she stayed behind because she thought that my sister would stay over here and hang out, which she didn't, she just went home....
If truth be told I was so upset about how they all acted that I spent most of the concert choking back tears. I just thought it was so mean to Alex not to at least try. More over, they always start the concert late anyway and, I still had 15 minutes to go when I got there.
It's been a long time since I had trouble controlling my emotions in public. It's not my style. I want to go and hide somewhere and be left alone when I'm sad. But sometimes the tears just fall anyway, no matter how hard I try.
It didn't use to be that way, but now, songs and movies and all kinds of things can make me cry. Gone are the days when "Titanic" was the only movie that had ever stirred something so deep in me that it could draw tears.
I even broke down at a restaurant in Stockholm once during that terrible summer 2010, all because they played a particular song and, I thought it was over between me and B. I didn't sit there and boll obviously, but tears were falling... No one noticed however, that's one of the advantages of going out with blind friends..
As for today, I'm not sure how I made it through without crying. The first part of the concert is always the lucia songs and, it's so beautiful that it brings tears to my eyes even without the extra stress added to it.. Not to mention the months and months without sleep before and after the arrival of our little miracle.
On top of all that I am now also getting sick. I was so cold that I was shaking while watching the concert and, I still can't get warm. Just what I need now with all the preparations for Christmas coming up...
If Lucia is coming around with hope and light this year; she had better hurry up and come on over... If she gets here fast enough she may even get to join my pity party...
Friday, November 11, 2011
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 ...
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 ...
Tuesday, November 8, 2011
elusive rainbow
This should have been the post where I proudly and happily got to announce that I'm gonna be an aunt...
But just like around this time a year ago, it's not going to happen...Life is so unfair.
Unwanted Babies are born every day...
Babies who are neglected...
Babies who are abused...
Babies who noone wants...Noone cares for... Noone ever loves...
And yet the ones who would welcome a baby with open arms are so often left with nothing but broken dreams and aching emptiness... Don't try to tell me that there's a God up there who wants these things to happen!
But just like around this time a year ago, it's not going to happen...Life is so unfair.
Unwanted Babies are born every day...
Babies who are neglected...
Babies who are abused...
Babies who noone wants...Noone cares for... Noone ever loves...
And yet the ones who would welcome a baby with open arms are so often left with nothing but broken dreams and aching emptiness... Don't try to tell me that there's a God up there who wants these things to happen!
Tuesday, October 18, 2011
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...
"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...
Saturday, September 24, 2011
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...
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...
Thursday, September 1, 2011
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.
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.
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