Retail therapy is a common theme in my life, even if it's just window shopping as the art of distraction. I love shopping! The hunt to find and gather all of the things you need and want, so satisfying. Lately I find myself feeling like I need to have things for Oliver or Andrew that I think they need, as if this will make everything better.... Oliver needs that toy, he wants it! I want Andrew to have new boots, a nice new shirt...I think he deserves to have whatever he may want. Feeds right into the season now too, buy, buy, buy. But somehow, all that I've gathered isn't enough, it isn't right....it isn't fixing anything.
I noticed us doing this over the summer as well, we justified buying a few new things and be damned the finances! An Ipad, a PS3 to play movies in...suddenly we NEEDED these things. But when I step back and recognize this behaviour I also recognize what we were trying to fix and what I've been doing all over again.
An Ipad is a great distraction, but it won't bring back my baby. A PS3 player makes it easier to play Oliver's movies, but it isn't like having a little brother to play with. Some new boots are useful for Andrew, but they don't take the pain of losing your son away. These are all just band aids that we are putting on a wound that is irreparable.
Even if I have everyTHING that I need or want for my family, if I buy, buy, buy everything....it still isn't enough to fill this gaping hole in my heart and it never will be.
Our family
Sunday, December 16, 2012
Sunday, December 9, 2012
Ugly shoes
Someone told me about this poem recently, is it weird to say I like it?
“A Pair of Shoes”
Author Unknown
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not
theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think
about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.
Friday, November 30, 2012
Tattoos
I had my memorial tattoo for Max done and I'm so happy with how it turned out!
At first I wasn't sure if I wanted to do anything more than just the butterfly, something little. I thought I didn't want something that said to everyone that I had 'lost a baby' (I hate that sentence, maybe more on that later). I was worried that it might become a conversation topic when I didn't want it to and that it might upset me. I finally realized that it upsets me, whether I have a tattoo or not and whether or not I see it all the time....it's always there.
I decided to have his footprint tattooed on my wrist, surrounded by stars and a butterfly to symbolize his spiritual transition. The butterfly is also designed to have the shape of an M in the wing.
I am so very glad that we took his footprints that day in the hospital. I thought they'd just be a keepsake in a book somewhere, I didn't have any idea at the time what they would mean to me.
I will always carry this mark on my heart, where a piece of it died with Max that day. Now I have his footprint seared on my wrist as indelibly as the print it left on my soul.
At first I wasn't sure if I wanted to do anything more than just the butterfly, something little. I thought I didn't want something that said to everyone that I had 'lost a baby' (I hate that sentence, maybe more on that later). I was worried that it might become a conversation topic when I didn't want it to and that it might upset me. I finally realized that it upsets me, whether I have a tattoo or not and whether or not I see it all the time....it's always there.
I decided to have his footprint tattooed on my wrist, surrounded by stars and a butterfly to symbolize his spiritual transition. The butterfly is also designed to have the shape of an M in the wing.
I am so very glad that we took his footprints that day in the hospital. I thought they'd just be a keepsake in a book somewhere, I didn't have any idea at the time what they would mean to me.
I will always carry this mark on my heart, where a piece of it died with Max that day. Now I have his footprint seared on my wrist as indelibly as the print it left on my soul.
Little Footprints
by Dorothy Ferguson
How
very softly you tiptoed into my world.
Almost silently, only a moment
you stayed.
But what an imprint your footsteps have left upon my heart
Spilled Milk
I'm finding myself short on patience lately, I don't want to always be so angry. I guess it's just the spilled milk issue...trust me, it's not worth crying over. Wipe it up and move on, don't waste your energy getting so upset over something so simple and please don't expect me to empathize.
I know that life is slowly settling back into a routine and life and death matters aren't so close to the forefront of my mind, but I'm reminded everyday that there are more important things than the bills being paid and whether or not I remember to call someone back. I don't mean to or want to compare things, but when someone complains to me about an issue...it's hard not to. I guess my perspective is very different than it used to be. I also feel very used up and empty, I don't have much sympathy to give right now. I don't really have anything to give right now.
Sometimes I feel really good for a few days, maybe even a week or so...but then I fall back for a few days. It seems to be settling into a pattern and I notice that if I'm feeling especially well for a while, I'm going to crash for a few days. It's like I find the joy in life again, but I'm not quite ready for it. The contrast in being able to find any joy is brought into such stark relief with the sadness and pain.
I do find that the grief still surprises me at the most unusual times. The places I've cried....not really anywhere you'd necessarily suspect to cry and sometimes the obvious places too. The shower, my bed, work, the cereal aisle at the grocery store, the gas station waiting to get my gas pumped and driving on the freeway. It's almost funny how normal it has become to cry, but certainly not over spilled milk.....
I know that life is slowly settling back into a routine and life and death matters aren't so close to the forefront of my mind, but I'm reminded everyday that there are more important things than the bills being paid and whether or not I remember to call someone back. I don't mean to or want to compare things, but when someone complains to me about an issue...it's hard not to. I guess my perspective is very different than it used to be. I also feel very used up and empty, I don't have much sympathy to give right now. I don't really have anything to give right now.
Sometimes I feel really good for a few days, maybe even a week or so...but then I fall back for a few days. It seems to be settling into a pattern and I notice that if I'm feeling especially well for a while, I'm going to crash for a few days. It's like I find the joy in life again, but I'm not quite ready for it. The contrast in being able to find any joy is brought into such stark relief with the sadness and pain.
I do find that the grief still surprises me at the most unusual times. The places I've cried....not really anywhere you'd necessarily suspect to cry and sometimes the obvious places too. The shower, my bed, work, the cereal aisle at the grocery store, the gas station waiting to get my gas pumped and driving on the freeway. It's almost funny how normal it has become to cry, but certainly not over spilled milk.....
Saturday, November 10, 2012
Anger and hate
Wow, have I ever been angry lately! Sometimes I've been so angry that I almost can't stand myself. I found my thoughts focusing on old hurts and people that aren't even in my life anymore, just ranting, angry thoughts. I feel so hateful! I hate the world somedays. I hate other drivers while I'm driving, I hate that woman who smiled at me - she looks too happy. I hate the red lights, I hate the snow, I hate, hate, hate! I finally realized the other day that this anger has nothing to do with any of these old issues or the world itself, it's part of the grief. I am angry that my child died. I hate that my baby died and never got a chance at life.
Of course I'm angry, I'm so mad at the world right now. I want to yell and scream and I want someone to hurt as bad as I do! I hate that some people are hurting as bad as I am. I know this isn't helping, lashing out will only make me feel worse in the long run. I'm not that kind of person, I can't stay this level of angry for very long. It hurts to feel so wound up, but that's how everything feels lately. It all just hurts.
Of course I'm angry, I'm so mad at the world right now. I want to yell and scream and I want someone to hurt as bad as I do! I hate that some people are hurting as bad as I am. I know this isn't helping, lashing out will only make me feel worse in the long run. I'm not that kind of person, I can't stay this level of angry for very long. It hurts to feel so wound up, but that's how everything feels lately. It all just hurts.
Wednesday, October 31, 2012
Tears on my pillow
The other day someone said, "One day this won't be the first thing you think of when you wake up in the morning and the last thing you think of before you go to sleep at night." and I realized I do that. Oh my gosh, I totally do that! Then I thought 'Really? Yeah, right!'
I pray/talk to Max every night before I fall asleep. I have a picture of him, a cross that was a gift after he passed and a prayer that I framed hanging on the wall beside my bed, some might call this a shrine... I don't care.
I lay there at night and I look at his beautiful little face, when it's too painful I shut the lights off and talk to him in the dark. I'm getting really good at this tears on my pillow thing, some nights Andrew doesn't even notice. I tell Max that one day we'll be together again and that I will spend the rest of my life waiting to see his beautiful little face again. I tell him how much I love him and miss him and would give anything to hold him again. I've even 'felt' him move, I've heard other mothers have had this same experience. I remember reading about it right after he passed and I thought it was phooey, but sometimes it's exactly that feeling of a baby moving...when you're about six months along, noticeable and definitely not gas. My hand goes straight to my tummy, I'm so eager to feel him again.....but then it's gone.... like a ghost. And my belly isn't six months pregnant..... it's empty and that's how I feel.
I also talk to God and ask him to keep my baby safe, I hope someone is snuggling him in their arms for me and loving him how I wanted to.
Some nights I have a hard time falling asleep and I have to force myself to think of anything else.
The mornings are usually easier, if I'm lucky I sleep until I hear Oliver awake and then he's the first thing on my mind. He's busy, I like busy...busy is good.
Most of the time I wake up before everyone and by then it's light out and I look at Max's picture again and I can't make myself close my eyes and I can't shut my brain off...... and there are tears on my pillow.
I pray/talk to Max every night before I fall asleep. I have a picture of him, a cross that was a gift after he passed and a prayer that I framed hanging on the wall beside my bed, some might call this a shrine... I don't care.
I lay there at night and I look at his beautiful little face, when it's too painful I shut the lights off and talk to him in the dark. I'm getting really good at this tears on my pillow thing, some nights Andrew doesn't even notice. I tell Max that one day we'll be together again and that I will spend the rest of my life waiting to see his beautiful little face again. I tell him how much I love him and miss him and would give anything to hold him again. I've even 'felt' him move, I've heard other mothers have had this same experience. I remember reading about it right after he passed and I thought it was phooey, but sometimes it's exactly that feeling of a baby moving...when you're about six months along, noticeable and definitely not gas. My hand goes straight to my tummy, I'm so eager to feel him again.....but then it's gone.... like a ghost. And my belly isn't six months pregnant..... it's empty and that's how I feel.
I also talk to God and ask him to keep my baby safe, I hope someone is snuggling him in their arms for me and loving him how I wanted to.
Some nights I have a hard time falling asleep and I have to force myself to think of anything else.
The mornings are usually easier, if I'm lucky I sleep until I hear Oliver awake and then he's the first thing on my mind. He's busy, I like busy...busy is good.
Most of the time I wake up before everyone and by then it's light out and I look at Max's picture again and I can't make myself close my eyes and I can't shut my brain off...... and there are tears on my pillow.
Monday, October 29, 2012
What to do?
I know that they say the worst time to make change is in the midst of a crisis, but there is also something about crisis that makes change necessary. For months before Max was born I didn't think I would go back to work, or at least not the same job. Now I am going back to the same job, but I'm also thinking about going back to school.
I guess part of me feels like I've had a reminder of how short life is and how we need to seize every moment and make them all worthwhile. I always felt like I couldn't do it all and I should have finished school when I was younger or wait until later... Why not do it all now? It might take longer if I can only take one or two classes at a time, but at least I'll be working towards it.
The other half of me is saying I'm crazy and that I'm not in any position to make decisions right now.
I did see a psychic with a friend just before Max was born and she told me that there would be big changes coming for me in the fall. At the time I was thinking about an entirely different career change. She also told me that my baby was very alive....he was then. I thought it was interesting that she would word it that way, I didn't tell her anything about him until she was done. She said that she could sense his spirit and that he had a very strong presence and that she thought he must be a very active baby. She was right. She told me that she saw heartache in our near future followed by big changes. She was also right when she said that he would come early and that he would set his own schedule.
I think I'll just keep taking things one day at a time, put one foot in front of the other and keep moving... see where it takes me.
I guess part of me feels like I've had a reminder of how short life is and how we need to seize every moment and make them all worthwhile. I always felt like I couldn't do it all and I should have finished school when I was younger or wait until later... Why not do it all now? It might take longer if I can only take one or two classes at a time, but at least I'll be working towards it.
The other half of me is saying I'm crazy and that I'm not in any position to make decisions right now.
I did see a psychic with a friend just before Max was born and she told me that there would be big changes coming for me in the fall. At the time I was thinking about an entirely different career change. She also told me that my baby was very alive....he was then. I thought it was interesting that she would word it that way, I didn't tell her anything about him until she was done. She said that she could sense his spirit and that he had a very strong presence and that she thought he must be a very active baby. She was right. She told me that she saw heartache in our near future followed by big changes. She was also right when she said that he would come early and that he would set his own schedule.
I think I'll just keep taking things one day at a time, put one foot in front of the other and keep moving... see where it takes me.
Monday, October 22, 2012
The other side
After Oliver was born I had a bad experience with postpartum hypertension, I was one of the lucky ones who was caught before I had a stroke or worse but still... it was traumatizing. I didn't really understand how serious it was, but I knew that I couldn't die - I had a new baby and he needed me. This is such a wrong experience to have a birth tied to a life threatening complication. I spent the next few months trying everything to get better, but I have never been able to stop taking the medication for hypertension. I became so focused and obsessed with this that I started having trouble sleeping, I was totally panicked about dying and leaving my baby. There were days on end that I didn't sleep for more than an hour or two. Finally the doctors put me on sleeping pills, which meant I had to quit breast feeding. This was devastating for me and Oliver, he refused the bottle (he was five and half months by then) and we had to rock him to sleep with a soother and sneak the bottle into his mouth once he was asleep. If he wasn't out all the way you had to start all over and if he fell too soundly asleep then he wouldn't drink at all. We both cried for two weeks while my milk dried up, this was our first Christmas.
It took about the same amount of time that it took for my milk to go, for the doctors to figure out that this wasn't just a lack of sleep, but a form of postpartum depression. I kept saying no, I love my baby - we're well bonded, it's not postpartum depression. Apparently not everyone experiences these things the same, mine was anxiety induced. Since then I've learned that a traumatic delivery is common with PD.
Anyways, I remember praying that the Lord not take me because my family really needed me. He couldn't be so cruel as to give me a child and not let me be his mother.
A few months later, things were much settled down and I was feeling great and in the process of weaning off of my medication for PD (suddenly I found myself a druggy, me who never took anything but vitamins, hater of drugs and proud of it). Then I fell off a ladder and shattered my knee, I had to have pins and a plate put in to put Humpty back together again. I wasn't too afraid of dying going into that surgery, I figured if I had made it through all of this - it's gonna take more than a broken leg to get me!
They told me it would take one to two years to fully recover. Six months later I found myself pregnant again and absolutely elated about it! "I'm strong, bring it on. I'll stay healthy and be careful about the weight gain for me knee, we'll get through this.", I thought. I have to say that I was concerned about going through the hypertension issues again and possibly experiencing PD again, but I knew I would do anything for another child.
My pregnancy with Max was uncomplicated, in terms of the hypertension. In fact by the time I was eight weeks pregnant my blood pressure was so low that I had to stop all meds and it stayed that way until after he was born. The day he was diagnosed, after our discussion with the doctor about what to do next, as we were getting ready to leave I said to her, "and I just wanted to get through this pregnancy without having a stroke!".
The day after Max's funeral (our fourth wedding anniversary) I woke up not feeling well, I had been monitoring my BP three times a day as ordered, so I checked it. It was slightly elevated, I knew it would be because I'd been having trouble sleeping and felt....like I had after Oliver. I know they say that you can't feel high blood pressure, but....it's hard to explain. I rested a bit and checked again and it was higher, so I went into the hospital. They were able to get control of it much more quickly than they had with Oliver, again I prayed for the Lord not to take me. I also prayed to my baby because I felt like he was calling me, I told him how sorry I was that I couldn't be with him. That my Oliver needed me more right now, but one day mommy would come to him. Sadly, I was not afraid of dying. I felt totally torn between my children. My mind knew that Oliver needed me more, but it was hard for my heart to understand.
We went home by noon and I went to sleep for a while, feeling terrible because the medication makes your blood pressure drop like a stone. When I woke up I had a fever, so we called the doctor and she sent us back to the hospital. I had a bladder or uterine infection, they never were sure but I spent another day in the hospital on IV antibiotics and I felt like Max was calling me even more. I left myself completely in the doctors hands, I wasn't worried at all. I had learned that we really have no control over life and death and if this is my time, it's my time. I would never want to leave my family here, but what do you do when you have someone you love just as much on the other side? I felt totally indifferent to death and way too young to feel that way.
I have to say that I don't feel so close to the other side anymore, if that makes sense, but I don't think I'll ever be afraid of dying like I used to be. This is not to say that I am suicidal in any way, but I know that other parents who've lost a child will understand.
This is one of those things that you can't just talk to anyone about because they might think you're crazy....
It took about the same amount of time that it took for my milk to go, for the doctors to figure out that this wasn't just a lack of sleep, but a form of postpartum depression. I kept saying no, I love my baby - we're well bonded, it's not postpartum depression. Apparently not everyone experiences these things the same, mine was anxiety induced. Since then I've learned that a traumatic delivery is common with PD.
Anyways, I remember praying that the Lord not take me because my family really needed me. He couldn't be so cruel as to give me a child and not let me be his mother.
A few months later, things were much settled down and I was feeling great and in the process of weaning off of my medication for PD (suddenly I found myself a druggy, me who never took anything but vitamins, hater of drugs and proud of it). Then I fell off a ladder and shattered my knee, I had to have pins and a plate put in to put Humpty back together again. I wasn't too afraid of dying going into that surgery, I figured if I had made it through all of this - it's gonna take more than a broken leg to get me!
They told me it would take one to two years to fully recover. Six months later I found myself pregnant again and absolutely elated about it! "I'm strong, bring it on. I'll stay healthy and be careful about the weight gain for me knee, we'll get through this.", I thought. I have to say that I was concerned about going through the hypertension issues again and possibly experiencing PD again, but I knew I would do anything for another child.
My pregnancy with Max was uncomplicated, in terms of the hypertension. In fact by the time I was eight weeks pregnant my blood pressure was so low that I had to stop all meds and it stayed that way until after he was born. The day he was diagnosed, after our discussion with the doctor about what to do next, as we were getting ready to leave I said to her, "and I just wanted to get through this pregnancy without having a stroke!".
The day after Max's funeral (our fourth wedding anniversary) I woke up not feeling well, I had been monitoring my BP three times a day as ordered, so I checked it. It was slightly elevated, I knew it would be because I'd been having trouble sleeping and felt....like I had after Oliver. I know they say that you can't feel high blood pressure, but....it's hard to explain. I rested a bit and checked again and it was higher, so I went into the hospital. They were able to get control of it much more quickly than they had with Oliver, again I prayed for the Lord not to take me. I also prayed to my baby because I felt like he was calling me, I told him how sorry I was that I couldn't be with him. That my Oliver needed me more right now, but one day mommy would come to him. Sadly, I was not afraid of dying. I felt totally torn between my children. My mind knew that Oliver needed me more, but it was hard for my heart to understand.
We went home by noon and I went to sleep for a while, feeling terrible because the medication makes your blood pressure drop like a stone. When I woke up I had a fever, so we called the doctor and she sent us back to the hospital. I had a bladder or uterine infection, they never were sure but I spent another day in the hospital on IV antibiotics and I felt like Max was calling me even more. I left myself completely in the doctors hands, I wasn't worried at all. I had learned that we really have no control over life and death and if this is my time, it's my time. I would never want to leave my family here, but what do you do when you have someone you love just as much on the other side? I felt totally indifferent to death and way too young to feel that way.
I have to say that I don't feel so close to the other side anymore, if that makes sense, but I don't think I'll ever be afraid of dying like I used to be. This is not to say that I am suicidal in any way, but I know that other parents who've lost a child will understand.
This is one of those things that you can't just talk to anyone about because they might think you're crazy....
Thursday, October 18, 2012
And life goes on...
I remember coming home from the appointment when Max was first diagnosed. I was in shock, now I recognize that. I felt frozen in place for days afterwards. Everyone around me went on about their business, I think we all felt this mad rush to prepare for what was to come - good or bad, we were going to need help. (Later I realized it was going to be bad or worse...which was which, who knows?)
In those first few frozen days I couldn't do what everyone else did, I couldn't get away from the reality of Max. He was always with me and very active. I remember saying that Oliver moved a lot, as if to remind me that he was there. Well Max didn't want me to forget for a second, as if I could!
This was the most intense grieving period for me, accepting that no matter what happened this child would not have the life I had envisioned for him. In the months that followed I didn't know how we would ever go on with life. The rest of the pregnancy was spent one day at a time and really that's how we got through the first few weeks after he was born too.
One day I realized I could take a deep breath and that I felt a sense of relief. This really bothered me and I spent quite a bit of time sorting it out. The waiting was over and we could go on with life, but I was also pissed off that we could... I didn't really want life to just go on so easily for us, I was also mad that my body had healed and my milk had gone so quickly. How dare my body have the ability to heal itself when it couldn't fix my baby? I felt like I wanted to dig my heals in and stay right where I was. It doesn't feel good to feel angry all the time though, and luckily I could only keep this up in short bursts.
I remember thinking I didn't know how I'd ever face the world and go back to work after all of this. Towards the end of the summer I honestly didn't think I ever would. Surprisingly, everyone who says you just won't know how you'll feel until you're there - they are right. I am ready to go back to work and join the real world again, I guess it's accepting what is....I am here, now. I could hide away for a while longer , but it won't change what happened and it won't be good for me.
What has eased things a little for me is letting myself feel what I do and accepting it. Sometimes it confuses me, but being open to the emotions and rolling with punches is easier than fighting against them.
In those first few frozen days I couldn't do what everyone else did, I couldn't get away from the reality of Max. He was always with me and very active. I remember saying that Oliver moved a lot, as if to remind me that he was there. Well Max didn't want me to forget for a second, as if I could!
This was the most intense grieving period for me, accepting that no matter what happened this child would not have the life I had envisioned for him. In the months that followed I didn't know how we would ever go on with life. The rest of the pregnancy was spent one day at a time and really that's how we got through the first few weeks after he was born too.
One day I realized I could take a deep breath and that I felt a sense of relief. This really bothered me and I spent quite a bit of time sorting it out. The waiting was over and we could go on with life, but I was also pissed off that we could... I didn't really want life to just go on so easily for us, I was also mad that my body had healed and my milk had gone so quickly. How dare my body have the ability to heal itself when it couldn't fix my baby? I felt like I wanted to dig my heals in and stay right where I was. It doesn't feel good to feel angry all the time though, and luckily I could only keep this up in short bursts.
I remember thinking I didn't know how I'd ever face the world and go back to work after all of this. Towards the end of the summer I honestly didn't think I ever would. Surprisingly, everyone who says you just won't know how you'll feel until you're there - they are right. I am ready to go back to work and join the real world again, I guess it's accepting what is....I am here, now. I could hide away for a while longer , but it won't change what happened and it won't be good for me.
What has eased things a little for me is letting myself feel what I do and accepting it. Sometimes it confuses me, but being open to the emotions and rolling with punches is easier than fighting against them.
Tuesday, October 16, 2012
Babies, babies and more babies....
Every time I turn around someone is having a baby, announcing a pregnancy or going on about babies or being pregnant! I am happy for everyone, but more importantly I immediately worry for them and pray for them. I guess this is because I can no longer look at life naively. I am all too aware of just how fragile it is and how easily things can go wrong. What a wonderful and magical time pregnancy is, but also terrifying for me and unfortunately probably for a lot of my friends now too.
It's sad because most people don't think they know anyone who has lost a baby or child. Stop and think, you probably know more people than you thought. Especially loss through miscarriage, people really don't feel comfortable talking about that.
Anyways, I haven't seen or held a new baby since Max and I don't think I'm ready to. I guess I do sometimes find myself jealous of them, I wonder why me and not them? Not that I would wish this on anyone, besides I believe Max came to this earth how he was meant to. I would love to have kept him forever if he could have been healthy and whole, but then he wouldn't have been Max.
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well" Psalm 139: 14
It's sad because most people don't think they know anyone who has lost a baby or child. Stop and think, you probably know more people than you thought. Especially loss through miscarriage, people really don't feel comfortable talking about that.
Anyways, I haven't seen or held a new baby since Max and I don't think I'm ready to. I guess I do sometimes find myself jealous of them, I wonder why me and not them? Not that I would wish this on anyone, besides I believe Max came to this earth how he was meant to. I would love to have kept him forever if he could have been healthy and whole, but then he wouldn't have been Max.
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well" Psalm 139: 14
Thanksgiving
Recently we celebrated Thanksgiving, I looked forward to getting together with family and seeing everyone. It was a very busy weekend, but nice.
I've been thinking about all that I'm thankful for. It seems odd to me that I'm even able to be thankful for anything right now. I always wondered how people could keep their faith or their sense of hope after going through a loss like this. I thought that if anything like this ever happened to me, I could see myself seriously questioning my own faith. In actuality it has strengthened my faith and completely changed how I see the world. I'm pretty surprised by this, I thought that I'd be more angry with God and life in general. It's all the more clear to me now that we don't have control over any aspect of our lives. Being angry about the things that we cannot change doesn't help. It is what it is and what we do have control over is how we deal with it. I have to have faith that this was meant to happen how it did, it doesn't mean that I understand it...and it doesn't mean that I have to like it.
I was always thankful for my family, but I am even more so now. This has made me appreciate the gift that every moment is.
I've been thinking about all that I'm thankful for. It seems odd to me that I'm even able to be thankful for anything right now. I always wondered how people could keep their faith or their sense of hope after going through a loss like this. I thought that if anything like this ever happened to me, I could see myself seriously questioning my own faith. In actuality it has strengthened my faith and completely changed how I see the world. I'm pretty surprised by this, I thought that I'd be more angry with God and life in general. It's all the more clear to me now that we don't have control over any aspect of our lives. Being angry about the things that we cannot change doesn't help. It is what it is and what we do have control over is how we deal with it. I have to have faith that this was meant to happen how it did, it doesn't mean that I understand it...and it doesn't mean that I have to like it.
I was always thankful for my family, but I am even more so now. This has made me appreciate the gift that every moment is.
Thursday, September 27, 2012
Good days and bad....
I definitely have good days and bad days. The feelings have been overwhelming at times, but then there are times that I'm able to totally put reality out of my mind and just live in the moment. Reality tends to come crashing back like a sledge hammer though. For example, happily painting my nails tonight and enjoying some adult time...it occurs to me that I shouldn't be doing any of this. I should be busy with my baby..... Sometimes it's like it hits me, that this really happened to US... The pain in that moment is so powerful that it takes my breath away and I have to think about anything else. It's like I can only deal with the grief in small increments or I would be totally overcome.
Sometimes I've even felt relieved that the waiting is over, the waiting and worrying and wondering how things would go for Max and if he would suffer very much. Then I feel guilty for being relieved. I know it is probably normal to feel this way considering our circumstances, but I would also give anything to still be pregnant. This was all over too soon for me, I wasn't ready to let go of him. I remember telling the doctors that if there was anything they could do to help him, I would stay pregnant for another year if that's what it took. I wish I could have. I would give anything to have him with me for just one more moment.
Sometimes I've even felt relieved that the waiting is over, the waiting and worrying and wondering how things would go for Max and if he would suffer very much. Then I feel guilty for being relieved. I know it is probably normal to feel this way considering our circumstances, but I would also give anything to still be pregnant. This was all over too soon for me, I wasn't ready to let go of him. I remember telling the doctors that if there was anything they could do to help him, I would stay pregnant for another year if that's what it took. I wish I could have. I would give anything to have him with me for just one more moment.
Tuesday, September 25, 2012
The beginning and the end
I'm a little new at this whole thing, but I feel a need to put this out there somewhere. I guess a diary just won't do at this point. This blog is about my story with my baby Max. I'll start by introducing myself, I'm 30 years old and married to my wonderful husband, Andrew for four years now. I had been working as a hairstylist until we had our first child, Oliver who is two now. Since he was born I've worked part time off and on. Around Christmas last year we decided to start trying again, thinking it would take some time as it had with our first. When we found out that we were expecting shortly after the New Year, we were a little shocked but happily so.
Things were going really well with the pregnancy and we were excited to find out the baby's sex at our 20 week ultrasound. I was scheduled for a special ultrasound to determine if we would have any complications with blood pressure, as I had in my first pregnancy. I'll never forget that morning, I think back about how naive I was then, what I wouldn't give to go back to those days when the world was rosy and nothing could go wrong. I felt like we were in the clear, passed those first tenuous weeks of pregnancy. What could possibly go wrong now? I was just so excited to see if we were having a girl or a boy.... I'm sure I had drunk three gallons of water and the technician got started and asked me to drink more. She was scanning and scanning and I couldn't see the screen. After about 45 minutes she left the room to find the doctor and said she'd let the resident show us our baby while we waited. I couldn't take it anymore and had to go to the bathroom. She said, "Don't let too much out". We waited a bit more until the doctor, resident and technician came back in. Everyone seemed somber, my husband told me later that he had seen the technician measuring and marking things on the screen with question marks....he said he was starting to worry at that point. The doctor decided she would have a look herself. We were both pretty sure something was really wrong by this point, but I knew the baby was still alive - I could feel him moving all the time, he really didn't like all this pressing on my belly. Finally the doctor told us, they suspected a congenital diaphragmatic hernia. We both just sat there, then she said they offered termination with this kind of diagnosis or palliative care.... I started crying, I didn't understand what the diagnosis was but if they offered termination it had to be really bad. This was part of the conversation that I revisited daily over the next few months, I kept hearing her say they offered termination..... Finally I asked what else we could do and she started talking about an experimental surgery offered in bigger centers. We clung to this little bit of hope for the next few weeks and tried to figure out how we were going to manage this trip and all of it's expenses.
In all of the confusion that morning I finally remembered to ask if they could determine the sex of the baby, but he wasn't cooperating. She reassured me that they would certainly find it out with the amnio, which we had to have done to be certain that there were no chromosomal anomalies so he would qualify for the surgery. Then she sterilized my belly and pulled out a huge needle, I don't even remember if it hurt....I'm sure I was in shock, people would ask me later if it hurt...Not as much as learning that your baby has a very small chance of survival.
I saw the doctor a week or so later and the preliminary results were back from the amnio, he was a boy and it seemed that other than this diaphragmatic hernia he was perfect. She decided to do another ultrasound just to see if anything had changed. (Luckily for us our OB was also specialized it fetal and maternal medicine, she was my gynecologist since before my first child and we are very glad we had her on this journey.) She confirmed the diagnosis, which was a right sided diaphragmatic hernia. So this meant that Max's diaphragm hadn't completely developed for some reason and had allowed his liver and part of his bowels to move up into the chest cavity, crowding his lungs ability to grow. The right sided are the worst because the liver is on that side and is so large, left sided hernias are much less severe. Max's lungs were very badly compromised. The surgery was in utero, the doctors would try to place a balloon in the baby's trachea to block the fluid that normally develops in the lungs from escaping and hopefully cause them to grow due to the pressure.
I researched this and found a wonderful local foundation that would fund our trip to Toronto to meet a doctor who could do this. From all of my research I learned that this was very risky and most likely would either prolong his suffering or cut his life short due to complications. Finally we had our appointments booked and our flights. My mom came with me and we spent a week meeting every doctor who would be involved in his treatment if we chose to go ahead with it. They also repeated all of the tests I had had done at home, an MRI, more ultrasounds and an ultrasound to perform a cardiac echo. We had also learned that we would have to relocate there for the duration of my pregnancy and his treatment afterwards. All of the doctors were fantastic, some were more frank with me than others. A few basically told me flat out to respect his life and just go home and allow him to go peacefully while others encouraged the surgery. I finally asked the one doctor why I should go ahead and let them do all of these things to my baby when every baby they had tried to help this year so far had died and none had had as severe a hernia as Max? His response was that we would be doing it for science, for medical advancement. That was my deciding factor, I wouldn't put our baby or our family through all of this just to most likely shorten his time with us and certainly make it more uncomfortable if not painful. This was mid June, so we came home and decided to make the best of the rest of our summer and cherish every minute we had with our precious baby knowing that his birth would mean his death.
How is this fair? Who has to go through things like this? I've learned that there are all too many of us. People would say to me, "I don't know how you do it? You're so strong to go through all of this." I always thought and sometimes told people, "I'm not the one who's going to die." It would make me so angry, the sympathy people would offer me, what about my baby and the fact that he didn't have a chance at life....?
I was so worried that he wouldn't suffer or struggle, that if nothing else I could offer him a peaceful end.
That became my new focus, trying to plan a quiet and peaceful birth with a palliative care plan for my baby. We met some more fantastic doctors here at home who helped us to arrange this.
As the summer went on I developed polyhydramnio, an excessive amount of amniotic fluid which is common with congenital birth defects. The hernia and relocation of internal organs were hindering Max's ability to swallow the fluid, so it would just continue to build up. The doctor had said that she would set induction for 38 weeks because of this, we all agreed that having a scheduled date would make it easier to have everyone that we wanted there. We had planned to have a NICU team to assess him at birth and confirm diagnosis and determine if there was anything they could do for him, as well as a back up palliative care plan. Our OB wanted to be there as well. I had very mixed feelings about the induction, I knew that his birth would mean his death and I really didn't want to be the one to decide when that should happen. I wanted to let him make his appearance in his own time.
I was set to be induced August 27th, but as it turned out my water broke the morning of August 22nd. There were no contractions though and I was only 1cm dilated, so the doctor decided we could go home for the day and see if labor would start on it's own. The next morning they started my induction, still nothing happened until late that night. By then I had started running a fever and they were worried that it was because I had been ruptured for almost two days. So as labor began I was started on antibiotics, but things were finally progressing. I felt a little better that we hadn't been induced just because the doctors decided to, but because we had to at that point. However at the same time, I felt cheated that I was only 37 weeks and 3 days. I could have been pregnant for weeks more, he could have had so much more time with us. I know logically that things happened because of the excess fluid, there just wasn't anymore room in there....but then I can blame myself for that too. I had often said that I would have stayed pregnant with him forever, until they could come up with something to save him....
Maxwell Stephan Nichols was born at 8:11 am August 24th, 2012. His heart rate at birth was only 60 bpm and he didn't cry at all. The doctors assessed him and tried to find an oxygen saturation reading, but couldn't get one at all. They decided to wrap him up and let us hold him. Andrew and I were very concerned that he be peaceful and that if he was suffering he not be passed from person to person. We had decided to be alone during this time, the only person we invited in was our priest who had been waiting in the hospital chapel and praying for us. He came in and baptized and confirmed Max and prayed with us for a bit. Then we took turns holding him and loving him until he went to be with God. He was so beautiful and perfect in every way. I knew our time with him would be short and I wanted to remember every second, but now I can hardly bear to think about it. We had been told that he likely wouldn't live more than ten minutes, but we were blessed to have him with us for almost an hour.
After the nurse came in and confirmed that his heart had stopped she helped to get a bath ready for him and we washed him and put his lotion on and dressed him in his special sleeper we had bought. Our friend had arrived to take some pictures and we are so glad we decided to do that, they are beautiful memories that we will always cherish. My parents arrived next with Oliver and we even managed to catch a few great pictures of him holding his brother. All of the aunties and uncles and cousins visited next. We were moved back to the antepartum ward, away from the crying babies, I guess. Andrew and I held Max and talked a bit more and then we decided to have a nap, the nurse had brought us a beautiful white bassinet and we set Max in there. We slept for a little while, but I woke up and wanted to hold him some more. When my girlfriends started to show up Andrew decided he would go home and give my parents a chance to come back. I think he also wanted to see Oliver and try to give him some sense of 'normal'. My girlfriends spent the afternoon and into the evening with me and then my parents came too. As it got later, I decided that I didn't want to keep him with me overnight. I knew that I wouldn't sleep with him there, I'd just want to hold him and look at him all night. Also, we had decided that we wanted to have a viewing and I wanted him to look as natural as possible for that. There was some family that had been out of town and hadn't made it up to the hospital to see him as well as both of our grandmas. Also, I was so glad that I'd have another chance to see him.
After my friends left, my parents stayed with me. Suddenly the realization that I was about to send my baby down to the morgue had hit me. This was probably the hardest thing I've ever done in my life. I unwrapped him and checked what?? I don't know. I wrapped him back up and snuggled him some more. My dad had said that he would carry him down, the nurse made us cover his head and led them out of the room. He was back really quickly and said that he only got to the elevator, she had to take him from there by herself and then he broke down and sobbed too.
My parents stayed with me until the nurse came in and gave me something to sleep. I was sure I wouldn't sleep at all, but I did for a few hours. I remember waking up and standing in front of the window wondering how the world could go on. Didn't they know that my baby was gone?
Things were going really well with the pregnancy and we were excited to find out the baby's sex at our 20 week ultrasound. I was scheduled for a special ultrasound to determine if we would have any complications with blood pressure, as I had in my first pregnancy. I'll never forget that morning, I think back about how naive I was then, what I wouldn't give to go back to those days when the world was rosy and nothing could go wrong. I felt like we were in the clear, passed those first tenuous weeks of pregnancy. What could possibly go wrong now? I was just so excited to see if we were having a girl or a boy.... I'm sure I had drunk three gallons of water and the technician got started and asked me to drink more. She was scanning and scanning and I couldn't see the screen. After about 45 minutes she left the room to find the doctor and said she'd let the resident show us our baby while we waited. I couldn't take it anymore and had to go to the bathroom. She said, "Don't let too much out". We waited a bit more until the doctor, resident and technician came back in. Everyone seemed somber, my husband told me later that he had seen the technician measuring and marking things on the screen with question marks....he said he was starting to worry at that point. The doctor decided she would have a look herself. We were both pretty sure something was really wrong by this point, but I knew the baby was still alive - I could feel him moving all the time, he really didn't like all this pressing on my belly. Finally the doctor told us, they suspected a congenital diaphragmatic hernia. We both just sat there, then she said they offered termination with this kind of diagnosis or palliative care.... I started crying, I didn't understand what the diagnosis was but if they offered termination it had to be really bad. This was part of the conversation that I revisited daily over the next few months, I kept hearing her say they offered termination..... Finally I asked what else we could do and she started talking about an experimental surgery offered in bigger centers. We clung to this little bit of hope for the next few weeks and tried to figure out how we were going to manage this trip and all of it's expenses.
In all of the confusion that morning I finally remembered to ask if they could determine the sex of the baby, but he wasn't cooperating. She reassured me that they would certainly find it out with the amnio, which we had to have done to be certain that there were no chromosomal anomalies so he would qualify for the surgery. Then she sterilized my belly and pulled out a huge needle, I don't even remember if it hurt....I'm sure I was in shock, people would ask me later if it hurt...Not as much as learning that your baby has a very small chance of survival.
I saw the doctor a week or so later and the preliminary results were back from the amnio, he was a boy and it seemed that other than this diaphragmatic hernia he was perfect. She decided to do another ultrasound just to see if anything had changed. (Luckily for us our OB was also specialized it fetal and maternal medicine, she was my gynecologist since before my first child and we are very glad we had her on this journey.) She confirmed the diagnosis, which was a right sided diaphragmatic hernia. So this meant that Max's diaphragm hadn't completely developed for some reason and had allowed his liver and part of his bowels to move up into the chest cavity, crowding his lungs ability to grow. The right sided are the worst because the liver is on that side and is so large, left sided hernias are much less severe. Max's lungs were very badly compromised. The surgery was in utero, the doctors would try to place a balloon in the baby's trachea to block the fluid that normally develops in the lungs from escaping and hopefully cause them to grow due to the pressure.
I researched this and found a wonderful local foundation that would fund our trip to Toronto to meet a doctor who could do this. From all of my research I learned that this was very risky and most likely would either prolong his suffering or cut his life short due to complications. Finally we had our appointments booked and our flights. My mom came with me and we spent a week meeting every doctor who would be involved in his treatment if we chose to go ahead with it. They also repeated all of the tests I had had done at home, an MRI, more ultrasounds and an ultrasound to perform a cardiac echo. We had also learned that we would have to relocate there for the duration of my pregnancy and his treatment afterwards. All of the doctors were fantastic, some were more frank with me than others. A few basically told me flat out to respect his life and just go home and allow him to go peacefully while others encouraged the surgery. I finally asked the one doctor why I should go ahead and let them do all of these things to my baby when every baby they had tried to help this year so far had died and none had had as severe a hernia as Max? His response was that we would be doing it for science, for medical advancement. That was my deciding factor, I wouldn't put our baby or our family through all of this just to most likely shorten his time with us and certainly make it more uncomfortable if not painful. This was mid June, so we came home and decided to make the best of the rest of our summer and cherish every minute we had with our precious baby knowing that his birth would mean his death.
How is this fair? Who has to go through things like this? I've learned that there are all too many of us. People would say to me, "I don't know how you do it? You're so strong to go through all of this." I always thought and sometimes told people, "I'm not the one who's going to die." It would make me so angry, the sympathy people would offer me, what about my baby and the fact that he didn't have a chance at life....?
I was so worried that he wouldn't suffer or struggle, that if nothing else I could offer him a peaceful end.
That became my new focus, trying to plan a quiet and peaceful birth with a palliative care plan for my baby. We met some more fantastic doctors here at home who helped us to arrange this.
As the summer went on I developed polyhydramnio, an excessive amount of amniotic fluid which is common with congenital birth defects. The hernia and relocation of internal organs were hindering Max's ability to swallow the fluid, so it would just continue to build up. The doctor had said that she would set induction for 38 weeks because of this, we all agreed that having a scheduled date would make it easier to have everyone that we wanted there. We had planned to have a NICU team to assess him at birth and confirm diagnosis and determine if there was anything they could do for him, as well as a back up palliative care plan. Our OB wanted to be there as well. I had very mixed feelings about the induction, I knew that his birth would mean his death and I really didn't want to be the one to decide when that should happen. I wanted to let him make his appearance in his own time.
I was set to be induced August 27th, but as it turned out my water broke the morning of August 22nd. There were no contractions though and I was only 1cm dilated, so the doctor decided we could go home for the day and see if labor would start on it's own. The next morning they started my induction, still nothing happened until late that night. By then I had started running a fever and they were worried that it was because I had been ruptured for almost two days. So as labor began I was started on antibiotics, but things were finally progressing. I felt a little better that we hadn't been induced just because the doctors decided to, but because we had to at that point. However at the same time, I felt cheated that I was only 37 weeks and 3 days. I could have been pregnant for weeks more, he could have had so much more time with us. I know logically that things happened because of the excess fluid, there just wasn't anymore room in there....but then I can blame myself for that too. I had often said that I would have stayed pregnant with him forever, until they could come up with something to save him....
Maxwell Stephan Nichols was born at 8:11 am August 24th, 2012. His heart rate at birth was only 60 bpm and he didn't cry at all. The doctors assessed him and tried to find an oxygen saturation reading, but couldn't get one at all. They decided to wrap him up and let us hold him. Andrew and I were very concerned that he be peaceful and that if he was suffering he not be passed from person to person. We had decided to be alone during this time, the only person we invited in was our priest who had been waiting in the hospital chapel and praying for us. He came in and baptized and confirmed Max and prayed with us for a bit. Then we took turns holding him and loving him until he went to be with God. He was so beautiful and perfect in every way. I knew our time with him would be short and I wanted to remember every second, but now I can hardly bear to think about it. We had been told that he likely wouldn't live more than ten minutes, but we were blessed to have him with us for almost an hour.
After the nurse came in and confirmed that his heart had stopped she helped to get a bath ready for him and we washed him and put his lotion on and dressed him in his special sleeper we had bought. Our friend had arrived to take some pictures and we are so glad we decided to do that, they are beautiful memories that we will always cherish. My parents arrived next with Oliver and we even managed to catch a few great pictures of him holding his brother. All of the aunties and uncles and cousins visited next. We were moved back to the antepartum ward, away from the crying babies, I guess. Andrew and I held Max and talked a bit more and then we decided to have a nap, the nurse had brought us a beautiful white bassinet and we set Max in there. We slept for a little while, but I woke up and wanted to hold him some more. When my girlfriends started to show up Andrew decided he would go home and give my parents a chance to come back. I think he also wanted to see Oliver and try to give him some sense of 'normal'. My girlfriends spent the afternoon and into the evening with me and then my parents came too. As it got later, I decided that I didn't want to keep him with me overnight. I knew that I wouldn't sleep with him there, I'd just want to hold him and look at him all night. Also, we had decided that we wanted to have a viewing and I wanted him to look as natural as possible for that. There was some family that had been out of town and hadn't made it up to the hospital to see him as well as both of our grandmas. Also, I was so glad that I'd have another chance to see him.
After my friends left, my parents stayed with me. Suddenly the realization that I was about to send my baby down to the morgue had hit me. This was probably the hardest thing I've ever done in my life. I unwrapped him and checked what?? I don't know. I wrapped him back up and snuggled him some more. My dad had said that he would carry him down, the nurse made us cover his head and led them out of the room. He was back really quickly and said that he only got to the elevator, she had to take him from there by herself and then he broke down and sobbed too.
My parents stayed with me until the nurse came in and gave me something to sleep. I was sure I wouldn't sleep at all, but I did for a few hours. I remember waking up and standing in front of the window wondering how the world could go on. Didn't they know that my baby was gone?
Subscribe to:
Posts (Atom)