Nothing really surprises me anymore. So, when I just read an email from the author of a book I quoted and cited, asking me to remove the content from her book. I just went back and deleted it. It's funny because I actually remember thinking that the book would be tremendously helpful to folks facing not knowing what to say in tough situations and that hopefully, if enough people read my blog down the road, they would also buy her book. I have used this space from time to time to tell you my thoughts on what to say and not to say but the response hasn't always been good. (Actually, the response is always good from other bereaved parents - except once - and it is generally less good from everyone else: Bereaved parents knowing what would help them to hear and the rest of the world still so reluctant and uncomfortable to say those words that could be helpful). I have quoted many books and linked to many websites. Hopefully, this will be the one and only that I have to go back and delete content from.
In the meantime, here's to hoping Joe Biden doesn't come after me for posting the following clip, which was posted in the comments section of my blog (thank you John). It is Biden's address to a group of families of fallen soldiers, though in many ways, it felt like it could have been directed at any parent who had lost a child: Joe Biden's address to Goldstar Families (give it a few seconds to load...I promise it is a very short clip)
The Dark Side
Wednesday, May 30, 2012
Some days it hits me so hard, I don't think I will make it one more minute, let alone a lifetime. Yesterday was one of those days. My instinct was to get in my car and drive as far as my car would take me. To leave my life. To escape. But, there is nowhere to go. I am stuck. I am stuck in this body, with this life, that doesn't include my baby boy. In my agony, I found myself in hysterics on my bathroom floor, in a pile of my own drool, eight months pregnant, begging god to have mercy on me already. I want my baby back so badly. Some days, I completely unravel. It often takes weeks to put myself back together and then, I am only good for a few days really. I worry about being this honest with you. But, this is what it sometimes is. The dark side of losing a child is indeed dark.
On my self-imposed isolation
Tuesday, May 29, 2012
Saturday night we went out with friends. This is something we NEVER do anymore. Literally. Earlier in the day, I went with my friend Suzy to get massages (I found the best pregnancy massage ever in Burbank a few months ago!) Then, in the evening, Ted and I went out with Suzy and her boyfriend Spencer (both close friends of mine from high school). It almost felt like a normal night out with friends...something that hasn't sounded like a "fun" thing to do in months but actually ended up being fun. Ted wanted to try a new brewery in Burbank. They have indoor and outdoor seating and it is in a cool warehouse nearby. It seemed like a perfect activity...until we got there and found more babies than I have seen anywhere in ten months. No joke. I counted 10 babies between the deck and the inside space. Little graco carriers everywhere. More babies than I see at the yoga studio when I happen to be there when the mommy and me class is lining up. I was actually up for braving it but the others made a group decision to leave. It was probably the right decision. On our way out, we bumped into Paul - my brother!!! Kind of funny. He was there celebrating one of his best friends birthdays. We chatted with them for a few minutes and then continued on to a saloon in Burbank where Ted and I went a few times while I was pregnant with Max and where we have been a couple of times since losing him. It is a dive and definitely not a place that anyone would bring a kid. It is the kind of place Ted and I would have hung out before we were pregnant with Max. They have lots of beers on tap and really good burgers. We had a really nice time. Suzy really has been by our sides since the very beginning of this nightmare. She and Spencer are very "safe" people for us to spend time with.
Going out for burgers and beer probably doesn't seem like much of an accomplishment to any normal person out there but, for me, it was a big deal. A few months ago Ted and I went with my mom and her boyfriend, Ken, to a comedy show to support Shawn Pelofsky - the comic that organized the line up for Maxie's benefit. That was an equally large accomplishment for me. We went out to dinner, made small talk, watched a comedy show, and laughed about the acts that we saw. These normal social interactions come easier for Ted. I know that they come easier for some other bereaved parents. Some people need these types of interactions just to keep from going crazy. I have no way of understanding why they are more challenging for me...but they are. When I am able to let go and enjoy myself, it feels like one million pounds lifted off of my shoulders. These experiences are few and far between though. It's nobody's fault but my own. I generally don't feel up to it. In the early days, I tried a few times to go out with friends and I woke up the next day feeling hungover from the energy I had spent trying to act normal and make others comfortable. It was too soon.
When Max died, I was given a copy of "When Bad Things Happen To Good People" by Harold Kushner. I read the first chapter and wanted to throw it in the trash. I could tell that the book's premise was going to be that we should not blame god for the bad things that happen to us. That god's role was to be the figure that we embrace when those bad things happen. Oh no! I was too angry at god to read that bulls*@t. Frankly, I am still angry at god and I still don't accept that theory. Still, I decided to give the book a second try because enough people have suggested it to me and I am out of helpful reading material. There is a chapter about depression and isolation that really resonated with me. I will get to that in a minute.
During the days leading up to Max's funeral and during Max's shiva, it never occurred to me how people would treat us after they went back to their real lives. For the most part, everyone was so supportive during those first two weeks. They dropped everything to be by our sides, they cried with us, and helped keep our kitchen clean and put their arms around us and told us how sad they were for us. I wrongly assumed that people would still handle us delicately when the shiva ended, knowing we were still so hurt and devastated - that just because the official period of mourning was over didn't mean that our grief was suddenly gone. It was a traumatic experience and a real wake up call when that isn't what happened. I have said so many times - and I am sorry to be repetitive but what happened was that many people acted like nothing happened. In fact, it felt like they out of their way to act really really normal. They went back to trying to gossip with us about the nonsense we gossiped about before Max died. They stopped mentioning him and our tragedy. They stopped putting their arms around us. They wondered aloud when we would start to get over this. I showed up at work just two weeks after Maxie's funeral where everyone treated me as if I'd just been away on a cruise or something for a few weeks. Not one word about the devastation that just tore my world apart (except from one person - who did come into my office and put her arm on my shoulder and asked how I was holding up). People invited me to "come out and play" and see concerts and go out on the town (I guess they figured I wouldn't have to worry about babysitters anymore). They all meant well but -Holy Moses - it was way too soon and way too much. Many of them then acted offended when I said I wasn't ready. I just needed people who would come over and sit with me and talk with me and try to listen to me. It felt like I was living in an alternate universe. Was I really expected to be over the death of my son just a few weeks after his shocking death? As a result, I totally isolated myself. I was criticized for that too. I was told that I was "too hard to be around". Honestly, if you were told that you were "too hard to be around", why would you invite anyone to be around you? Was the idea that I should lighten up so that others wouldn't have to feel so bummed out to be around me? My son had just died.
I realized after a couple of weeks that there was no way for anyone to understand just how tragic and devastating losing Max was and rather than have to just fake "happy", I decided to sit home - alone...all of the time. It felt much safer than being with people. The strangeness of people feeling like they were doing me a solid by inviting me out but then totally ignoring the devastation I was living through was just overwhelming and nonsensical feeling. So, I have been sitting at home in the dark for the last ten months. I have tried to explain my feelings about losing Max and the kind of support I have needed on this blog. Some people have started to get it a little, most haven't. Some very unique individuals have understood right off the bat. I have had visitors - people that I feel safe with for the most part. People who have let me cry and talk about Max and been with me in my pain. They have put their own issues aside for the time they spent with me and just supported me. I am lucky. I am not sure everyone has people like this.
In his book, "When Bad Things Happen to Good People", Kushner says, "One of the worst things that happens to a person who has been hurt by life is that he tends to compound the damage by hurting himself a second time. Not only is he the victim of rejection, bereavement, injury, or bad luck; he often feels the need to see himself as a bad person who had this coming to him, and because of that drives away people who try to come close and help him". Part of the problem, Kushner explains is that the people who come "to comfort us" don't always bring comfort. He speaks of the biblical story of Job - who lost everything - his wife, his children, all of his possessions. He says that Job's friends did the right thing by coming to him but they tried to make light of his losses and they explained that there must be a reason for them. "He needed friends who would permit him to be angry, to cry and to scream, much more than he needed friends who would urge him to be an example of patience and piety to others. He needed people to say 'Yes, what happened to you is terrible and makes no sense," not people who would say, 'Cheer up, Job, its not all that bad.' And that was where his friends let him down. The phrase 'Job's comforters' has come into our language to describe people who mean to help, but who are more concerned with their own needs and feelings than they are with those of the other person, and so only end up making things worse." I am sure I have been one of "Job's comforters" in my past. I have had lots of "Job's comforters" try and cheer me up as well over the last ten months. Kushner goes on to say about our society that "We either stay away entirely, so that the suffering person experiences isolation and a sense of rejection on top of his tragedy, or we come and try to avoid the reason for our being there. Hospital visits and condolence calls become discussions of the weather, the stock market, or the pennant race, taking on an air of unreality as the most important subject on the mind of everyone present is left conspicuously unmentioned." It's this "air of unreality" that I have had to avoid. I am no dummy. I know that Max was "the most important subject on the mind of everyone" who came to visit us, but it was too hard for me to play the game that everyone else was playing. My soul was aching to leave this body and join Max in a place where I would't have to feel so unreal anymore. To save my own life. I had to isolate myself.
I have wondered to myself if this self-imposed isolation was good or bad for me and I have honestly had mixed feelings about it. On the one hand, I have been in the deepest pit of darkness for all of this time and I have been there all alone. The loneliness and isolation have darkened the pit. On the other hand, I have needed to be there and not with anyone who was going to belittle or ignore this very real grief. I have needed to sit and reflect on my life, to saturate my soul in my love for Max, to feel every terrible feeling I have felt. For me, this has been the only way to feel like I could release the pain, little by little, and begin healing. Having a bunch of people around me who wanted to make everything normal would have been (and was in those times that I couldn't avoid it) more painful for me than just feeling the pain has been. Everyone has their own path. This has been mine.
I am beginning to feel ready again to let in a little light. To open the door to some activity, to some dear friends, to life. I am taking baby steps. I can't handle much more. This is what feels right to me today. It may not be what feels right to me tomorrow. But, again, this is MY journey. You can't force me into rushing it. Getting out just a little, dipping my toes back into the world has been good for my soul as I have entered a new stage of grief. I have a long, long road ahead of me but I am feeling more up for the challenge than I have this whole time. Perhaps it is the promise of my Baby M - my second little love - coming in just a short eight weeks. Perhaps this is just how grief goes as you begin to get more used to the constant pain. I don't know. What I do know is that if you happen to catch me away from my house - you might find a smile on my face (though you might still be more likely to catch me crying). That is a small accomplishment for me in this great big tragedy.
Going out for burgers and beer probably doesn't seem like much of an accomplishment to any normal person out there but, for me, it was a big deal. A few months ago Ted and I went with my mom and her boyfriend, Ken, to a comedy show to support Shawn Pelofsky - the comic that organized the line up for Maxie's benefit. That was an equally large accomplishment for me. We went out to dinner, made small talk, watched a comedy show, and laughed about the acts that we saw. These normal social interactions come easier for Ted. I know that they come easier for some other bereaved parents. Some people need these types of interactions just to keep from going crazy. I have no way of understanding why they are more challenging for me...but they are. When I am able to let go and enjoy myself, it feels like one million pounds lifted off of my shoulders. These experiences are few and far between though. It's nobody's fault but my own. I generally don't feel up to it. In the early days, I tried a few times to go out with friends and I woke up the next day feeling hungover from the energy I had spent trying to act normal and make others comfortable. It was too soon.
When Max died, I was given a copy of "When Bad Things Happen To Good People" by Harold Kushner. I read the first chapter and wanted to throw it in the trash. I could tell that the book's premise was going to be that we should not blame god for the bad things that happen to us. That god's role was to be the figure that we embrace when those bad things happen. Oh no! I was too angry at god to read that bulls*@t. Frankly, I am still angry at god and I still don't accept that theory. Still, I decided to give the book a second try because enough people have suggested it to me and I am out of helpful reading material. There is a chapter about depression and isolation that really resonated with me. I will get to that in a minute.
I realized after a couple of weeks that there was no way for anyone to understand just how tragic and devastating losing Max was and rather than have to just fake "happy", I decided to sit home - alone...all of the time. It felt much safer than being with people. The strangeness of people feeling like they were doing me a solid by inviting me out but then totally ignoring the devastation I was living through was just overwhelming and nonsensical feeling. So, I have been sitting at home in the dark for the last ten months. I have tried to explain my feelings about losing Max and the kind of support I have needed on this blog. Some people have started to get it a little, most haven't. Some very unique individuals have understood right off the bat. I have had visitors - people that I feel safe with for the most part. People who have let me cry and talk about Max and been with me in my pain. They have put their own issues aside for the time they spent with me and just supported me. I am lucky. I am not sure everyone has people like this.
In his book, "When Bad Things Happen to Good People", Kushner says, "One of the worst things that happens to a person who has been hurt by life is that he tends to compound the damage by hurting himself a second time. Not only is he the victim of rejection, bereavement, injury, or bad luck; he often feels the need to see himself as a bad person who had this coming to him, and because of that drives away people who try to come close and help him". Part of the problem, Kushner explains is that the people who come "to comfort us" don't always bring comfort. He speaks of the biblical story of Job - who lost everything - his wife, his children, all of his possessions. He says that Job's friends did the right thing by coming to him but they tried to make light of his losses and they explained that there must be a reason for them. "He needed friends who would permit him to be angry, to cry and to scream, much more than he needed friends who would urge him to be an example of patience and piety to others. He needed people to say 'Yes, what happened to you is terrible and makes no sense," not people who would say, 'Cheer up, Job, its not all that bad.' And that was where his friends let him down. The phrase 'Job's comforters' has come into our language to describe people who mean to help, but who are more concerned with their own needs and feelings than they are with those of the other person, and so only end up making things worse." I am sure I have been one of "Job's comforters" in my past. I have had lots of "Job's comforters" try and cheer me up as well over the last ten months. Kushner goes on to say about our society that "We either stay away entirely, so that the suffering person experiences isolation and a sense of rejection on top of his tragedy, or we come and try to avoid the reason for our being there. Hospital visits and condolence calls become discussions of the weather, the stock market, or the pennant race, taking on an air of unreality as the most important subject on the mind of everyone present is left conspicuously unmentioned." It's this "air of unreality" that I have had to avoid. I am no dummy. I know that Max was "the most important subject on the mind of everyone" who came to visit us, but it was too hard for me to play the game that everyone else was playing. My soul was aching to leave this body and join Max in a place where I would't have to feel so unreal anymore. To save my own life. I had to isolate myself.
I have wondered to myself if this self-imposed isolation was good or bad for me and I have honestly had mixed feelings about it. On the one hand, I have been in the deepest pit of darkness for all of this time and I have been there all alone. The loneliness and isolation have darkened the pit. On the other hand, I have needed to be there and not with anyone who was going to belittle or ignore this very real grief. I have needed to sit and reflect on my life, to saturate my soul in my love for Max, to feel every terrible feeling I have felt. For me, this has been the only way to feel like I could release the pain, little by little, and begin healing. Having a bunch of people around me who wanted to make everything normal would have been (and was in those times that I couldn't avoid it) more painful for me than just feeling the pain has been. Everyone has their own path. This has been mine.
I am beginning to feel ready again to let in a little light. To open the door to some activity, to some dear friends, to life. I am taking baby steps. I can't handle much more. This is what feels right to me today. It may not be what feels right to me tomorrow. But, again, this is MY journey. You can't force me into rushing it. Getting out just a little, dipping my toes back into the world has been good for my soul as I have entered a new stage of grief. I have a long, long road ahead of me but I am feeling more up for the challenge than I have this whole time. Perhaps it is the promise of my Baby M - my second little love - coming in just a short eight weeks. Perhaps this is just how grief goes as you begin to get more used to the constant pain. I don't know. What I do know is that if you happen to catch me away from my house - you might find a smile on my face (though you might still be more likely to catch me crying). That is a small accomplishment for me in this great big tragedy.
Daily Thoughts
Sunday, May 27, 2012
The sadness never goes away.
The missing never ceases.
The longing for my baby.
The wish that I could be who I once was.
I will never be the same.
You will never understand me.
I may never "get better".
I am doing the best I can.
I want Max back.
I want to hold him and kiss him and smell his baby deliciousness.
I want to make him smile.
I want to watch him crawl and then walk and then run.
I want my life back.
So sad that it is gone forever.
I'm so very, very sad.
The missing never ceases.
The longing for my baby.
The wish that I could be who I once was.
I will never be the same.
You will never understand me.
I may never "get better".
I am doing the best I can.
I want Max back.
I want to hold him and kiss him and smell his baby deliciousness.
I want to make him smile.
I want to watch him crawl and then walk and then run.
I want my life back.
So sad that it is gone forever.
I'm so very, very sad.
His life
Saturday, May 26, 2012
He will never play on a playground...like I did.
He will never fall down and hurt himself...like I have.
He will never have a first day of school...like I did.
He will never look forward to summer camp....like I did.
He will never go to a school dance...like I did.
He will never have best friend....like I have.
He will never fall in love....like I have.
He will never graduate high school or college...like I did.
He will never get married...like I did.
He will never have a child...like I did.
He will never see his forest...like I will.
He will never feel soul crushing pain....like I do.
He will never fall down and hurt himself...like I have.
He will never have a first day of school...like I did.
He will never look forward to summer camp....like I did.
He will never go to a school dance...like I did.
He will never have best friend....like I have.
He will never fall in love....like I have.
He will never graduate high school or college...like I did.
He will never get married...like I did.
He will never have a child...like I did.
He will never see his forest...like I will.
He will never feel soul crushing pain....like I do.
How to say it
Friday, May 25, 2012
I was at my mom's yesterday and found a book that she is reading called, "=====================================". Since I have been criticized for being critical and it seems like nobody knows what to say and I am not supposed to tell you from my experience what to say and what not to say, I figured I pull a section from the book. You can blame it on the author. I still think this is important. My biggest trigger (which is listed below...as are many of the things that have hurt me as well as many of the things that have been a comfort) is when people act like everything is normal (at work, with family, with friends....especially in the weeks and months immediately following Max's passing. Like NOTHING happened at all). I can't even count how many times that alone has thrown me into darkness over the last ten months. Hopefully, this will be helpful to you if you know someone who has experienced the death of a child. (By the way, the book has right words for many, many situations. If you are having trouble knowing what to say to someone in a particular situation, you might check it out)
CONTENT WAS REMOVED FROM THIS POST AS REQUESTED BY BOOK'S AUTHOR
CONTENT WAS REMOVED FROM THIS POST AS REQUESTED BY BOOK'S AUTHOR
Breathing a little easier
Thursday, May 24, 2012
A few weeks ago, my friend Jessica wrote me the sweetest email. She told me that she had a doula at the birth of her son, Everett, and described how much it helped to calm her and her husband. She said she had just been thinking about us and what an emotional experience it will be to bring Baby M into this world, not to mention the fact that he is due just a few days after the one year anniversary of Maxie's passing. She said that if it were something we were interested in, she would give her doula to us as a gift. It was such a beautiful idea and offer. Jessica is a generous soul and a loyal friend. I love her and Steve (her husband) and their sweet family so much.
Though I am not taking her up on her offer, it did give me the idea of calling my high school friend Courtney, who is a doula. Courtney has taken such good care of Teddy and I over the last ten months. She brought us dinners on nights that the meal train had none scheduled and has continued to bring us delicious food even since the train ended. If you know Courtney, you know what a deeply feeling soul she is - her own empathy must keep her up at night. She is wonderful. Anyway, if you don't know (and I am still not sure that I do), a doula is kind of a labor coach...or a birth assistant. Basically, they can help fill any kind of a role that you would like - or, at least, Courtney does. Jessica brought up the idea of having someone there to advocate for us, which is what sounded most appealing to me. After my experiences with Maxie's jaundice, Maxie's time in the PICU, and Ted's time in the hospital after Maxie's funeral....the idea of someone helping to look out for us and advocate on our behalf sounds like a total luxury. I am always "the bad guy" - getting into it with doctors and nurses who aren't treating us like human beings. I probably get too emotional when it comes to the health and well-being of my family. Plus, I have had a ton of stress about having to explain our situation to nurses during shift changes or even just explaining why I might get more emotional or upset than other mothers (or at least, more upset than I did last time). I have worried about having a panic attack, like the one I had in NY in November (thankfully, I have not had one like that since). Courtney won't be able to stop my panic attack but she will be able to explain our situation to nurses and anesthesiologists who might think I am being overly dramatic.
Courtney came over and brought us dinner on Tuesday night - she makes insanely delicious turkey meatballs. The last time she brought them, Ted wanted to eat the leftovers the next night. Ted never wants leftovers (sorry for selling you out honey)! Anyway, we spent lots of time with her talking about our concerns and fears, asking about various possible scenarios, talking about birth in general (because, even though I've given birth AND taken the child birth classes, it turns out that I know very little). She understands the process so well and has assisted in enough births by now that the idea of having her with us just makes us both feel very comfortable. It isn't that I don't trust the nurses with delivering this baby...it's that I don't trust the nurses with my fragile emotional state. I do, however, trust Courtney.
The peace that has come from my appointment with Dr. D on Tuesday morning combined with our meeting with Courtney on Tuesday night has actually given me the confidence to allow myself to feel excited about Baby M's arrival. I haven't been allowing myself to be excited about him yet. The risk has felt too large. While I am emotionally invested in him, I haven't wanted to allow myself to get invested in our future. But, last night, after Ted went to sleep, I actually laid in bed with my iphone, looking up the best baby gadgets of 2012. I allowed myself to think of Baby M playing in Maxie's "office", and in his jumparoo, and I thought about purchasing the infant insert to go in the ergo carrier I bought that arrived the day after Maxie died. I don't want to get carried away. I don't want to jinx the situation. I am so scared of making a wrong move still. I felt like I should have been "knocking on wood" just for being presumptuous enough to visit the "Babies R Us" website. But, I also feel like I maybe deserve to be even just a little excited about the prospect of a new baby coming into our home. Maybe I have been forgiven, just a touch, for whatever great sin it is that I committed? Maybe? I am not going to get carried away. We still have nine weeks left, give or take. But, I am breathing just a little bit easier this week. Nothing significant - but, still worth mentioning. It feels like we just might actually be a family again one day.
Courtney came over and brought us dinner on Tuesday night - she makes insanely delicious turkey meatballs. The last time she brought them, Ted wanted to eat the leftovers the next night. Ted never wants leftovers (sorry for selling you out honey)! Anyway, we spent lots of time with her talking about our concerns and fears, asking about various possible scenarios, talking about birth in general (because, even though I've given birth AND taken the child birth classes, it turns out that I know very little). She understands the process so well and has assisted in enough births by now that the idea of having her with us just makes us both feel very comfortable. It isn't that I don't trust the nurses with delivering this baby...it's that I don't trust the nurses with my fragile emotional state. I do, however, trust Courtney.
The peace that has come from my appointment with Dr. D on Tuesday morning combined with our meeting with Courtney on Tuesday night has actually given me the confidence to allow myself to feel excited about Baby M's arrival. I haven't been allowing myself to be excited about him yet. The risk has felt too large. While I am emotionally invested in him, I haven't wanted to allow myself to get invested in our future. But, last night, after Ted went to sleep, I actually laid in bed with my iphone, looking up the best baby gadgets of 2012. I allowed myself to think of Baby M playing in Maxie's "office", and in his jumparoo, and I thought about purchasing the infant insert to go in the ergo carrier I bought that arrived the day after Maxie died. I don't want to get carried away. I don't want to jinx the situation. I am so scared of making a wrong move still. I felt like I should have been "knocking on wood" just for being presumptuous enough to visit the "Babies R Us" website. But, I also feel like I maybe deserve to be even just a little excited about the prospect of a new baby coming into our home. Maybe I have been forgiven, just a touch, for whatever great sin it is that I committed? Maybe? I am not going to get carried away. We still have nine weeks left, give or take. But, I am breathing just a little bit easier this week. Nothing significant - but, still worth mentioning. It feels like we just might actually be a family again one day.
Proactive
Wednesday, May 23, 2012
I went to see my OB yesterday. Baby M is doing well. His head is down and he is measuring a little ahead of his 31 weeks. He was doing major kickboxing moves inside me all day yesterday. My doctor was asking how I am doing and feeling with this pregnancy and I broke down. I am SCARED. That is the most distinct emotion I feel with regard to Baby M. FEAR. Not joy, not hope, not whatever else an expecting mommy should feel. I feel so much love but it is tempered by my fear. Dr. D assured me that he thinks he would be feeling the same thing if he were in our position. He asked me what the other doctors are suggesting that we do once Baby M gets here. I told him that mostly they tell me to "hope for the best" or "try not to worry". That blew him away....as it most often blows me away as well. He said that he thinks we need to be proactive and take Baby M to a hepatologist (liver specialist) within the first couple of weeks of his life. He said we have to take control and make sure that we are doing all that we can for Baby M, not just praying. He said to make sure that we get a referral from the pediatrician at the hospital where we are delivering for a hepatologist at Children's Hospital. It felt so good to finally have someone agree with us and suggest a proactive approach. I guess the others are afraid of scaring us (or of making a mistake in their diagnosis)...but we are already scared. Anyway, if you suspected that an adult had something wrong with their liver (or any other organ), wouldn't you get it checked out? I have not been able to wrap my brain around why everyone just keeps saying things like, "Well, we just have to hope that this baby will be ok". No. I am not going to sit around hoping. This is my baby! I will do everything in my power to ensure his safety, health and long life.
In the meantime, Ted emailed the geneticists yesterday to see if they'd started the testing (because they would never tell him unless he asked them). Apparently, they have finished the tests and now they are analyzing the findings. They should have answers (or no answers as the case may be) for us by the end of next week.
Last night we met with my friend Courtney, who is a doula (more on that in a later post), and Ted said to her that one of the things we have learned from Maxie's birth, life, and passing is that we need to be the advocates for ourselves and our family. There is nobody who is going to step up to the plate and make sure that you are getting the right care. Everyone is much more consumed with protecting with own asses (he didn't say that...that is my two cents). You have to carefully watch what is happening and give directives if you need to and not worry about whose egos you bruise or who you piss off. It's so true. This is true with regard to health concerns, the care of your children, the care of your pets, and everything else important. You are your strongest advocate.
I know that for so many other parents, faith has been the most important thing that has pulled them through and given them peace of mind. Sadly, I don't really have a faith (said by a strongly self-identified Jewish girl). I am proud to be a Jew and love our customs and celebrations but god didn't answer my most important prayers and I have never felt like I was given a clear understanding of what happens after we are gone. If this sounds like a good window to proselytize me, it's not. My brain just isn't wired to accept some other religion either. They all sound equally like good human guesses as to how the universe works. And, my Jewish upbringing is probably what keeps me questioning all of the time. Rabbis spend their entire lives questioning what they read in the Torah and Talmud...they read, they analyze, they argue, they form their own conclusions. Baby M and Maxie are the most important people in my life. When it comes to them, I need to be proactive. I need to know why and what and how. I guess that's what keeps me reading about the afterlife and trying to imagine where Maxie and I might meet again. And, more than that - it keeps me in pursuit of him...hoping that I will figure out a way to connect with him sooner, rather than later. I miss him so much. It is what also makes it IMPOSSIBLE for me to just pray and hope for the best with Baby M. I need to feel like we are doing everything we can for him. He is too valuable. Yes, the search makes me crazy and is sometimes overwhelming but the fear is worse. I still try to surrender whenever I can though because there is only so much I can do. Hopefully, prayer counts for something.
In the meantime, Ted emailed the geneticists yesterday to see if they'd started the testing (because they would never tell him unless he asked them). Apparently, they have finished the tests and now they are analyzing the findings. They should have answers (or no answers as the case may be) for us by the end of next week.
Last night we met with my friend Courtney, who is a doula (more on that in a later post), and Ted said to her that one of the things we have learned from Maxie's birth, life, and passing is that we need to be the advocates for ourselves and our family. There is nobody who is going to step up to the plate and make sure that you are getting the right care. Everyone is much more consumed with protecting with own asses (he didn't say that...that is my two cents). You have to carefully watch what is happening and give directives if you need to and not worry about whose egos you bruise or who you piss off. It's so true. This is true with regard to health concerns, the care of your children, the care of your pets, and everything else important. You are your strongest advocate.
I know that for so many other parents, faith has been the most important thing that has pulled them through and given them peace of mind. Sadly, I don't really have a faith (said by a strongly self-identified Jewish girl). I am proud to be a Jew and love our customs and celebrations but god didn't answer my most important prayers and I have never felt like I was given a clear understanding of what happens after we are gone. If this sounds like a good window to proselytize me, it's not. My brain just isn't wired to accept some other religion either. They all sound equally like good human guesses as to how the universe works. And, my Jewish upbringing is probably what keeps me questioning all of the time. Rabbis spend their entire lives questioning what they read in the Torah and Talmud...they read, they analyze, they argue, they form their own conclusions. Baby M and Maxie are the most important people in my life. When it comes to them, I need to be proactive. I need to know why and what and how. I guess that's what keeps me reading about the afterlife and trying to imagine where Maxie and I might meet again. And, more than that - it keeps me in pursuit of him...hoping that I will figure out a way to connect with him sooner, rather than later. I miss him so much. It is what also makes it IMPOSSIBLE for me to just pray and hope for the best with Baby M. I need to feel like we are doing everything we can for him. He is too valuable. Yes, the search makes me crazy and is sometimes overwhelming but the fear is worse. I still try to surrender whenever I can though because there is only so much I can do. Hopefully, prayer counts for something.
In Perspective
Tuesday, May 22, 2012
I wrote over the weekend about a reality television personality, Bethenny Frankel, being pregnant again. I am actually not sure about that now. I think I heard that actually she had a miscarriage. Perhaps she then got pregnant again? Like I said, I don't actually know what is happening with celebrities most of the time. But, I did see something about her speaking to Ellen about having a miscarriage at eight weeks and saying that she was devastated.
I too, had a miscarriage...at 7 weeks. I miscarried the week after what would have been Max's first birthday and it was sad and really disappointing and.....that's about it. It felt like god maybe wasn't sure that we knew his wrath was directed at us and just wanted to make us feel extra sure. Hopefully, he/she knows that we got the message. Still, I don't really picture who that child might have been. I don't feel a great sense of loss. It felt more like getting a rejection letter from a school I really wanted to get into. And, I KNOW that if we hadn't lost Max, it would have felt so much harder than it did. It could have felt devastating...and, somehow that breaks my heart a little.
When Ted and I went to the hospital last week to make sure everything with Baby M was ok, the nurse asked how many pregnancies I've had and Ted answered "2". Ted's not a woman, so he doesn't know that they are actually asking about all pregnancies - even the ones that didn't make it. I corrected him and told her that I had had three pregnancies. It just hardly registers for us. I wish it were my greatest trauma or that it even really registered on my trauma meter (not that I need something else to feel traumatized about). I know that sounds terrible....but I do. And, I am not trying to be controversial. I DO get it. I DO get that a miscarriage is terrible. Believe me. And, that the further along you are, the more traumatizing it would be. And, we were only 7 weeks along with the miscarriage we had. Still, we felt hope with that pregnancy and then it was gone and in the moment, it felt really sad but, like a week later, it just wasn't that sad anymore. The fact is I wonder if anything will ever really feel sad again in light of this loss.
When I wrote about that miscarriage, I got so many emails and phone calls from friends. It was nice to feel so much support. I even heard from people I hadn't heard from since Max had passed. Lots and lots of miscarriage stories (it actually became too much...I wasn't strong enough to handle that much pain at that time). Obviously, people could relate. It had probably been devastating for them. The truth is that for us, being that it was in the shadow of losing Max - a boy we knew and loved and kissed and hugged and played with and sang to - it just wasn't. So, just for us, it was more of a disappointment than a loss. Again, I know it would have been different under different circumstances but these were our circumstances and in our circumstances, it was just one more kick - but not a life altering blow. Our lives had already been devastated.
Now, this is the part that probably will make you crazy but, I am jealous that the women who have miscarriages get to breathe a deep sigh of relief when their babies are born. And, it seems like most people think that I will do the same when Baby M is born. But, see, I won't. I will be happy and thrilled to see he is here. It is hopeful for sure, but giving birth to Baby M doesn't tell me anything about whether or not he will make it to his first birthday or all of the birthdays he deserves after that. Having Baby M is something I am so looking forward to and it will give me a sense of wholeness again in some ways. I believe that he has saved my life thus far (well, him and Teddy and family and support from others). If I hadn't been trying to get pregnant with him, and then been pregnant with him all of this time, I just don't know if I would be here. I have had some very dark thoughts - still do. But, I love him already. I loved him when I saw the pregnancy stick that showed I was pregnant with him and I have allowed myself to fall a little more in love with him as each week has passed. But, a healthy pregnancy is something I have experienced before. The real challenge for me comes AFTER Baby M is born.
I have asked the doctors what we will do if the genetic testing doesn't give us any answers and they don't have a strategy, which worries me. I have asked if we can check Baby M's liver and the response I most often get is that if we find something wrong with his liver and we don't know what caused it, we won't be able to treat it. Then, they usually say something like, "It might be better not to check it because all that will do is worry you". Like there is any chance on earth that I won't be worried if they don't check it. Other doctors say that they don't think there could have been anything wrong with his liver because if there was, we would have seen evidence of that in other ways (his behavior, the color of his skin, his appetite). All we saw was a beautiful and happy baby. Next to the fact of Max not being here anymore, the second greatest injustice and trauma is that we have NO IDEA why he is not here. It makes me sick to my stomach and it feels so so so so so unfair.
This pregnancy with Baby M gives us tremendous hope for our future happiness. His arrival will bring even more hope. However, it is his survival that I am depending on. Anything less would leave me more broken than I could possibly handle...and the kicker is that there is no magic threshold that will give me peace. We will just have to do the very best we can with the very little information we have.... I hate this.
I too, had a miscarriage...at 7 weeks. I miscarried the week after what would have been Max's first birthday and it was sad and really disappointing and.....that's about it. It felt like god maybe wasn't sure that we knew his wrath was directed at us and just wanted to make us feel extra sure. Hopefully, he/she knows that we got the message. Still, I don't really picture who that child might have been. I don't feel a great sense of loss. It felt more like getting a rejection letter from a school I really wanted to get into. And, I KNOW that if we hadn't lost Max, it would have felt so much harder than it did. It could have felt devastating...and, somehow that breaks my heart a little.
When Ted and I went to the hospital last week to make sure everything with Baby M was ok, the nurse asked how many pregnancies I've had and Ted answered "2". Ted's not a woman, so he doesn't know that they are actually asking about all pregnancies - even the ones that didn't make it. I corrected him and told her that I had had three pregnancies. It just hardly registers for us. I wish it were my greatest trauma or that it even really registered on my trauma meter (not that I need something else to feel traumatized about). I know that sounds terrible....but I do. And, I am not trying to be controversial. I DO get it. I DO get that a miscarriage is terrible. Believe me. And, that the further along you are, the more traumatizing it would be. And, we were only 7 weeks along with the miscarriage we had. Still, we felt hope with that pregnancy and then it was gone and in the moment, it felt really sad but, like a week later, it just wasn't that sad anymore. The fact is I wonder if anything will ever really feel sad again in light of this loss.
When I wrote about that miscarriage, I got so many emails and phone calls from friends. It was nice to feel so much support. I even heard from people I hadn't heard from since Max had passed. Lots and lots of miscarriage stories (it actually became too much...I wasn't strong enough to handle that much pain at that time). Obviously, people could relate. It had probably been devastating for them. The truth is that for us, being that it was in the shadow of losing Max - a boy we knew and loved and kissed and hugged and played with and sang to - it just wasn't. So, just for us, it was more of a disappointment than a loss. Again, I know it would have been different under different circumstances but these were our circumstances and in our circumstances, it was just one more kick - but not a life altering blow. Our lives had already been devastated.
Now, this is the part that probably will make you crazy but, I am jealous that the women who have miscarriages get to breathe a deep sigh of relief when their babies are born. And, it seems like most people think that I will do the same when Baby M is born. But, see, I won't. I will be happy and thrilled to see he is here. It is hopeful for sure, but giving birth to Baby M doesn't tell me anything about whether or not he will make it to his first birthday or all of the birthdays he deserves after that. Having Baby M is something I am so looking forward to and it will give me a sense of wholeness again in some ways. I believe that he has saved my life thus far (well, him and Teddy and family and support from others). If I hadn't been trying to get pregnant with him, and then been pregnant with him all of this time, I just don't know if I would be here. I have had some very dark thoughts - still do. But, I love him already. I loved him when I saw the pregnancy stick that showed I was pregnant with him and I have allowed myself to fall a little more in love with him as each week has passed. But, a healthy pregnancy is something I have experienced before. The real challenge for me comes AFTER Baby M is born.
I have asked the doctors what we will do if the genetic testing doesn't give us any answers and they don't have a strategy, which worries me. I have asked if we can check Baby M's liver and the response I most often get is that if we find something wrong with his liver and we don't know what caused it, we won't be able to treat it. Then, they usually say something like, "It might be better not to check it because all that will do is worry you". Like there is any chance on earth that I won't be worried if they don't check it. Other doctors say that they don't think there could have been anything wrong with his liver because if there was, we would have seen evidence of that in other ways (his behavior, the color of his skin, his appetite). All we saw was a beautiful and happy baby. Next to the fact of Max not being here anymore, the second greatest injustice and trauma is that we have NO IDEA why he is not here. It makes me sick to my stomach and it feels so so so so so unfair.
This pregnancy with Baby M gives us tremendous hope for our future happiness. His arrival will bring even more hope. However, it is his survival that I am depending on. Anything less would leave me more broken than I could possibly handle...and the kicker is that there is no magic threshold that will give me peace. We will just have to do the very best we can with the very little information we have.... I hate this.
Octomom
Monday, May 21, 2012
On Saturday, we went to my dad's house to visit. We brought bathing suits, even though both of us knew we didn't really want to swim. The last times we were in his pool, Maxie was with us. The whole backyard has Maxie memories for me, starting with his bris. I hope that someday, that will be a really wonderful thing. Right now, all of our houses (ours, my dads and my moms) have so many memories, I can't help but look around and just long for Max. I guess everything in my world makes me long for my baby. I miss him so much.
Anyway, when we got there, my dad announced that we had entertainment for the afternoon: A momma duck and her eight ducklings (I nicknamed her - Octomom) had taken up residence in the pool. They were SO cute. The little ducklings reminded me of Max with their fuzzy little heads. I was actually feeling jealous of the momma duck! In fact, once she seemed to determine that we were harmless, she took off for like an hour. I felt sort of responsible, like we were babysitting. When she flew back, the pappa duck was with her...he kept flying past and she landed back in the pool. Presumably, it was "date night".
The ducks make me think of something that I haven't really shared with many - except for jokingly. That is my need for more children after Baby M. I am not talking about a need like "Oh, I think we will have this one and then wait a year or two before trying for another one". I am actually a little neurotic about it....I think. Two weeks before Max stopped breathing, I thought I might be pregnant again. My breasts were tender, I felt kind of crampy and a little sick. We hadn't planned on getting pregnant again so quick but the thought excited me anyway. Turns out that it was just the return of my period, which I hadn't had since before conceiving Max. It had come back, I am sure, because I had stopped breastfeeding and pumping and was just feeding Max frozen breastmilk and formula. After Max passed, I SO wished that I had actually been pregnant.
Looking to my future, I worry that breastfeeding exclusively (which I really plan to do) will inhibit my period again. I want to get pregnant again before .......this happens again. And, I know it's crazy because Baby M will live, right? I mean, that's what we think. That's what we hope. That's what everyone keeps telling us. It's just this horrible feeling like I need to have so many babies to ensure that one lives. But, of course, nobody in their right mind would keep having babies if they thought those babies wouldn't live. Plus, I am 38....so even though women continue to have children into their 40s in this day and age, there is still my age to contend with. I can't imagine it gets any easier physically. My body felt broken down after having Max. I was just starting to feel normal again when he stopped breathing.
So, I found myself jealous of this duck who got to have eight babies in one shot. And, that may just be this year. Who knows how many babies she has had or will have in her lifetime? I'll be happy with what I get. And, no, I don't really want 8...but 4 (including Max) might be a good number. And, maybe we'll adopt (though that sounds like a long and sometimes heartbreaking process as well). I would have been happy if Max had been our only to be honest. But, my future baby/babies MUST live. They just have to live. Still, I am not planning on getting back on that mini pill after Baby M is born. We're just rolling the dice from here on out (ok Ted? :))
Anyway, when we got there, my dad announced that we had entertainment for the afternoon: A momma duck and her eight ducklings (I nicknamed her - Octomom) had taken up residence in the pool. They were SO cute. The little ducklings reminded me of Max with their fuzzy little heads. I was actually feeling jealous of the momma duck! In fact, once she seemed to determine that we were harmless, she took off for like an hour. I felt sort of responsible, like we were babysitting. When she flew back, the pappa duck was with her...he kept flying past and she landed back in the pool. Presumably, it was "date night".
Looking to my future, I worry that breastfeeding exclusively (which I really plan to do) will inhibit my period again. I want to get pregnant again before .......this happens again. And, I know it's crazy because Baby M will live, right? I mean, that's what we think. That's what we hope. That's what everyone keeps telling us. It's just this horrible feeling like I need to have so many babies to ensure that one lives. But, of course, nobody in their right mind would keep having babies if they thought those babies wouldn't live. Plus, I am 38....so even though women continue to have children into their 40s in this day and age, there is still my age to contend with. I can't imagine it gets any easier physically. My body felt broken down after having Max. I was just starting to feel normal again when he stopped breathing.
So, I found myself jealous of this duck who got to have eight babies in one shot. And, that may just be this year. Who knows how many babies she has had or will have in her lifetime? I'll be happy with what I get. And, no, I don't really want 8...but 4 (including Max) might be a good number. And, maybe we'll adopt (though that sounds like a long and sometimes heartbreaking process as well). I would have been happy if Max had been our only to be honest. But, my future baby/babies MUST live. They just have to live. Still, I am not planning on getting back on that mini pill after Baby M is born. We're just rolling the dice from here on out (ok Ted? :))
Celebrity Sunday
Sunday, May 20, 2012
It's crazy to be kind of angry at celebrities, right? I know it is. But it almost feels easier than being angry at people in my real life. So, on that note, there are a few who celebrities who I can hardly look at anymore. My first mistake was to have ever been thinking of them as "role models" to begin with. Celebrities are just people. I know that. I am not even really that interested in them. I hardly pay attention to their gossip. I am not a big reader of People, or Star, or whatever other celebrity magazines there are out there. I can't watch more than a couple of minutes of Entertainment Tonight or Hollywood Access. I honestly don't care what they are doing...unless it happens to mirror my life somehow. (I am not sure how my lack of interest in celebrity gossip connects with all of my reality television watching but that is something for another day).
After Max was born, I loved watching any television show with babies. I became obsessed with babies (because I was OBSESSED with my own baby). There were very few shows with babies to watch - Teen Mom and Bethenny Frankel was about all I came up with. (Of course, the irony now is that every show we turn on has baby in it. Even Dexter has a baby in the season we got stuck on). So, Bethenny Frankel. Most people don't even know who she is. It doesn't really matter actually. She has a reality television show. She had a baby that was the same age as Max when the season aired. And, that baby was cute. She was an older mom (like me), in a new marriage (like me), and juggling her career with a new baby (like me). That is where the similarities ended. She was much busier and put way more on her plate for starters. I would watch her show and wonder how she was able to pull herself away from her baby to do social things. With that much work, I would be spending every free minute I had with my baby. But, ok, it's television....who knows how much time she was spending with that baby. All I know is she looked real thin pretty soon after having that kid, her kid always looked really happy, I don't think she was nursing exclusively and she managed to start an enormous business and go on and train for Skating with the Stars (which I didn't watch but which they talked about a lot on her show). I was overwhelmed all of the time by work, so much leftover baby weight, so much pumping, and not getting enough time with Max (I would sell my soul to have the "overwhelming" life back - it was wonderful. I am glad that I recognized that at the time too, not just in retrospect). There was no way I was going to be able to keep up with a celebrity...not that there was a competition, but I wanted to have a life in balance and I worked hard to try and achieve it. And, I am pissed that she keeps having success after success and I can barely get out of bed in the morning. She is expecting a second baby and my first baby died. The only reason I watched her show was because of that baby. I can't watch that kid get older while mine never will. I don't think that I particularly like her anyway so, I have no problem saying goodbye to her.
The next person on my list is Tina Fey. We read her book, Bossypants, for book club just a couple of months before Max stopped breathing. I am going to have to make my peace with Tina Fey eventually though. I love 30 Rock way too much. I loved the Tina Fey in her book. I loved when she talked about having to balance her demanding career with her job as a mother. I knew that she probably spent way less time with her children than I could ever bear, but she made it sound doable. She also spoke real candidly about the challenges of breastfeeding. She spoke about the breastfeeding mothers who would try to make her feel bad about not being able to do it with her children. I did not have an ideal breastfeeding situation. It wasn't just that I had to pump at work. That would have been manageable, but I spent most of my days driving around the city, meeting with people. So, I would have to either try to get to meetings early and find a quiet spot on a side street nearby to pump or do it while I was driving, which was totally crazy. There was one person in particular that kept trying to encourage me to keep breastfeeding and pumping and it was just wearing me so thin. Of course, I now wonder all of the time if Max died simply because I introduced formula in his eighth month. But, Tina Fey formula fed from the beginning (as do many, many mothers). It was after reading her book that I went ahead and introduced formula. I decided to give myself a break. I thought I deserved just this one small break. Max had a bottle of formula a day starting in his eighth month. Perhaps to an outsider this all sounds crazy, but I can assure you. I feel guilty about nearly every thing I did with Max. Formula? Daycare? Sleep training? Things so many other mothers do. Everyone always says that you have to give yourself a break as a mother. I feel like I was punished for being "selfish"...for giving myself those breaks (but, believe me, if I could have avoided daycare and been a stay at home mom, I would have been. That was not an option so I am not sure I should call it a break). I guess I don't deserve the same things other mothers do (like the joy that would have come from experiencing a full life with my baby). Coming to grips with the hand we've been dealt is not happening yet. I am still trying to figure out what exactly I am being punished for.
There are all of these men celebrities that have lost young children that seem to have been able to go on afterwards - Keith Richards, Eric Clapton, Lamar Odom. Safe to say that their lives are so much more stressful than mine. If they survived the deaths of their children - I can too. (Yes, I may be an idiot, but honestly, I am looking for examples of people who have survived this because most of the time I honestly don't feel like I will). But, what about their girlfriends (because I honestly don't think any of them were married to the women who mothered the children that died)? None of these men were even in the same cities as their children that died as far as I know. Maybe they did figure out ways to move forward...but, did the women? Can you just pour your heart out into a song like "Tears in Heaven" and then be all worked out emotionally? Because I pour my heart out every single day and I still want to die. I couldn't care less about the Kardashians but I am seriously fascinated with Lamar Odom just because his 6 month old died of SIDS. He is handsome, loving, attached, and feels deeply (as far as I can tell). In the episode I watched last week, he "electric slid" around his living room to the music on his ipad with a big goofy grin in one scene and in another scene, he admitted to being incredibly depressed about recent deaths that brought up so many feelings of grief around losing his son six years ago. Will I someday be able to have that duality? Will I ever dance again? Will I be able to genuinely smile and crack jokes and still know that this happened? That Max lost his life and left mine totally incomplete? I don't want to be set up for an impossibility.
Look, you compare your body to the bodies of popular actresses...I know you do. You want to get your haircut like some of them. You want to go on the diets they are on and do the workouts they do. You wonder where they shop. You wonder where they lunch. If you are a mom, you might wonder if they breastfeed, or what they feed their children. I am watching them too...but, I wonder how they grieve. Instead of watching Angelina Jolie and Jennifer Aniston - I am watching the Kennedys, Jennifer Hudson, Lamar Odom, Kelly Preston and John Travolta (and not because I care about what he does with various male massage therapists but because I wonder how he has integrated the loss of his son, Jett, into his current life...maybe the current drama in his life is an acting out of that despair? Who the hell knows?). When you look at Joe Biden and see a man who often puts his foot in his mouth, I see a man who lost his wife and baby daughter and still managed to become Vice President of the United States. And I resent the celebrities who had babies when I did and don't have to grieve (do my feelings HAVE to make sense? Because they don't). There are just very few unlucky people on this earth that are forced to grieve for the loss of their children. I am drawn to the ones who have to do this. It's the same reason I read blogs. I might find the blog of someone who seems to have found a way to have made a life without their child that is satisfying, and I read to assure myself that it can be done. I have found blogs of other parents who feel just like me - this has been important for me since there is nobody in my real life who really mirrors what I am feeling. Ted's grief isn't just like mine. It is different in so many ways. When I am angry or depressed or longing for my child, I take comfort in the knowledge that so many other parents feel angry, hurt, depressed, lost....these are normal reactions to extreme loss and complicated grief.
So, Tina Fey....I can't hate her forever for being a regular person who is getting away with having it all, right? As long as she keeps making me laugh, I guess I forgive her....just like I will have to forgive everyone I know who gets to "have it all" without even knowing that they do. I have to keep in mind that for nine and a half months, I had it all too.
After Max was born, I loved watching any television show with babies. I became obsessed with babies (because I was OBSESSED with my own baby). There were very few shows with babies to watch - Teen Mom and Bethenny Frankel was about all I came up with. (Of course, the irony now is that every show we turn on has baby in it. Even Dexter has a baby in the season we got stuck on). So, Bethenny Frankel. Most people don't even know who she is. It doesn't really matter actually. She has a reality television show. She had a baby that was the same age as Max when the season aired. And, that baby was cute. She was an older mom (like me), in a new marriage (like me), and juggling her career with a new baby (like me). That is where the similarities ended. She was much busier and put way more on her plate for starters. I would watch her show and wonder how she was able to pull herself away from her baby to do social things. With that much work, I would be spending every free minute I had with my baby. But, ok, it's television....who knows how much time she was spending with that baby. All I know is she looked real thin pretty soon after having that kid, her kid always looked really happy, I don't think she was nursing exclusively and she managed to start an enormous business and go on and train for Skating with the Stars (which I didn't watch but which they talked about a lot on her show). I was overwhelmed all of the time by work, so much leftover baby weight, so much pumping, and not getting enough time with Max (I would sell my soul to have the "overwhelming" life back - it was wonderful. I am glad that I recognized that at the time too, not just in retrospect). There was no way I was going to be able to keep up with a celebrity...not that there was a competition, but I wanted to have a life in balance and I worked hard to try and achieve it. And, I am pissed that she keeps having success after success and I can barely get out of bed in the morning. She is expecting a second baby and my first baby died. The only reason I watched her show was because of that baby. I can't watch that kid get older while mine never will. I don't think that I particularly like her anyway so, I have no problem saying goodbye to her.
The next person on my list is Tina Fey. We read her book, Bossypants, for book club just a couple of months before Max stopped breathing. I am going to have to make my peace with Tina Fey eventually though. I love 30 Rock way too much. I loved the Tina Fey in her book. I loved when she talked about having to balance her demanding career with her job as a mother. I knew that she probably spent way less time with her children than I could ever bear, but she made it sound doable. She also spoke real candidly about the challenges of breastfeeding. She spoke about the breastfeeding mothers who would try to make her feel bad about not being able to do it with her children. I did not have an ideal breastfeeding situation. It wasn't just that I had to pump at work. That would have been manageable, but I spent most of my days driving around the city, meeting with people. So, I would have to either try to get to meetings early and find a quiet spot on a side street nearby to pump or do it while I was driving, which was totally crazy. There was one person in particular that kept trying to encourage me to keep breastfeeding and pumping and it was just wearing me so thin. Of course, I now wonder all of the time if Max died simply because I introduced formula in his eighth month. But, Tina Fey formula fed from the beginning (as do many, many mothers). It was after reading her book that I went ahead and introduced formula. I decided to give myself a break. I thought I deserved just this one small break. Max had a bottle of formula a day starting in his eighth month. Perhaps to an outsider this all sounds crazy, but I can assure you. I feel guilty about nearly every thing I did with Max. Formula? Daycare? Sleep training? Things so many other mothers do. Everyone always says that you have to give yourself a break as a mother. I feel like I was punished for being "selfish"...for giving myself those breaks (but, believe me, if I could have avoided daycare and been a stay at home mom, I would have been. That was not an option so I am not sure I should call it a break). I guess I don't deserve the same things other mothers do (like the joy that would have come from experiencing a full life with my baby). Coming to grips with the hand we've been dealt is not happening yet. I am still trying to figure out what exactly I am being punished for.
There are all of these men celebrities that have lost young children that seem to have been able to go on afterwards - Keith Richards, Eric Clapton, Lamar Odom. Safe to say that their lives are so much more stressful than mine. If they survived the deaths of their children - I can too. (Yes, I may be an idiot, but honestly, I am looking for examples of people who have survived this because most of the time I honestly don't feel like I will). But, what about their girlfriends (because I honestly don't think any of them were married to the women who mothered the children that died)? None of these men were even in the same cities as their children that died as far as I know. Maybe they did figure out ways to move forward...but, did the women? Can you just pour your heart out into a song like "Tears in Heaven" and then be all worked out emotionally? Because I pour my heart out every single day and I still want to die. I couldn't care less about the Kardashians but I am seriously fascinated with Lamar Odom just because his 6 month old died of SIDS. He is handsome, loving, attached, and feels deeply (as far as I can tell). In the episode I watched last week, he "electric slid" around his living room to the music on his ipad with a big goofy grin in one scene and in another scene, he admitted to being incredibly depressed about recent deaths that brought up so many feelings of grief around losing his son six years ago. Will I someday be able to have that duality? Will I ever dance again? Will I be able to genuinely smile and crack jokes and still know that this happened? That Max lost his life and left mine totally incomplete? I don't want to be set up for an impossibility.
Look, you compare your body to the bodies of popular actresses...I know you do. You want to get your haircut like some of them. You want to go on the diets they are on and do the workouts they do. You wonder where they shop. You wonder where they lunch. If you are a mom, you might wonder if they breastfeed, or what they feed their children. I am watching them too...but, I wonder how they grieve. Instead of watching Angelina Jolie and Jennifer Aniston - I am watching the Kennedys, Jennifer Hudson, Lamar Odom, Kelly Preston and John Travolta (and not because I care about what he does with various male massage therapists but because I wonder how he has integrated the loss of his son, Jett, into his current life...maybe the current drama in his life is an acting out of that despair? Who the hell knows?). When you look at Joe Biden and see a man who often puts his foot in his mouth, I see a man who lost his wife and baby daughter and still managed to become Vice President of the United States. And I resent the celebrities who had babies when I did and don't have to grieve (do my feelings HAVE to make sense? Because they don't). There are just very few unlucky people on this earth that are forced to grieve for the loss of their children. I am drawn to the ones who have to do this. It's the same reason I read blogs. I might find the blog of someone who seems to have found a way to have made a life without their child that is satisfying, and I read to assure myself that it can be done. I have found blogs of other parents who feel just like me - this has been important for me since there is nobody in my real life who really mirrors what I am feeling. Ted's grief isn't just like mine. It is different in so many ways. When I am angry or depressed or longing for my child, I take comfort in the knowledge that so many other parents feel angry, hurt, depressed, lost....these are normal reactions to extreme loss and complicated grief.
So, Tina Fey....I can't hate her forever for being a regular person who is getting away with having it all, right? As long as she keeps making me laugh, I guess I forgive her....just like I will have to forgive everyone I know who gets to "have it all" without even knowing that they do. I have to keep in mind that for nine and a half months, I had it all too.
Dog Park
Saturday, May 19, 2012
Here are some recent photos of Ted and I at the dog park. Ted takes Jake and Layla to the dog park every weekend. Jake seems to have been hanging close on this day. Layla was probably off making friends.
Flashbacks
Friday, May 18, 2012
An audio-visual slideshow attacks me throughout the day, every day.
My phone lighting up in my purse
Hysterical noise: "Max stopped breathing"
It can't be
A tall chaplain with bad breath putting his arm around me in the ER
"Why won't they let me see my baby?!!!!!"
Praying
Sad looks from strangers
A paramedic flirting with a nurse, "This is the hardest call I've ever been on", with a coy smile
Crying, grateful, to the ER doctor who gets Max's heartbeat back - "Thank you for saving my baby!"
"Something is foreboding", says the ambulance driver.
Exchanged looks between Ted and I - in the ER, in the car, in the PICU - no need for words
Praying
"You may want to call your family so that they can say goodbye"
Buying a toothbrush and toothpaste at the supermarket
Ted playing music in bed with Max, begging him "Don't leave us Buddy"
Praying
A family meeting to discuss timing - of pulling life support, of autopsy, of funeral and shiva
How can this be?!!!
My father breaking down
My insides being ripped out
Waiting for rabbis
One rabbi says a prayer for our family
Another rabbi helps us say goodbye to our little boy
Holding him, hugging him, kissing him, telling him we love him
Saying goodbye to the most important, most beloved person in our lives
Driving home with an empty car seat
Drinking to excess
Awaking in the middle of the night and lying on his playmat
Begging for this to be only a nightmare
I have died too. Why aren't I dead instead of you? I am dead now too
My phone lighting up in my purse
Hysterical noise: "Max stopped breathing"
It can't be
A tall chaplain with bad breath putting his arm around me in the ER
"Why won't they let me see my baby?!!!!!"
Praying
Sad looks from strangers
A paramedic flirting with a nurse, "This is the hardest call I've ever been on", with a coy smile
Crying, grateful, to the ER doctor who gets Max's heartbeat back - "Thank you for saving my baby!"
"Something is foreboding", says the ambulance driver.
Exchanged looks between Ted and I - in the ER, in the car, in the PICU - no need for words
Praying
"You may want to call your family so that they can say goodbye"
Buying a toothbrush and toothpaste at the supermarket
Ted playing music in bed with Max, begging him "Don't leave us Buddy"
Praying
A family meeting to discuss timing - of pulling life support, of autopsy, of funeral and shiva
How can this be?!!!
My father breaking down
My insides being ripped out
Waiting for rabbis
One rabbi says a prayer for our family
Another rabbi helps us say goodbye to our little boy
Holding him, hugging him, kissing him, telling him we love him
Saying goodbye to the most important, most beloved person in our lives
Driving home with an empty car seat
Drinking to excess
Awaking in the middle of the night and lying on his playmat
Begging for this to be only a nightmare
I have died too. Why aren't I dead instead of you? I am dead now too
30 weeks
Wednesday, May 16, 2012
Today we are 30 weeks pregnant. I can't believe we have made it this far. 10 weeks more sounds like a lifetime but I know that 10 weeks would have passed very quickly for my old self. There are things to do but I can't get my act together to do any of it. (However, while on the topic, can someone recommend a good co-sleeper? I am leaning towards an Arms Reach but worried that I won't be able to see Baby M over the little lip. He's going to be sleeping in it for a while so I want to pick something practical).
I have an iphone app, I think it is called the "Pregnancy Companion". Honestly, it is not as good as the "What to Expect" app that I used with Max but I knew that if I used that app, it would make me sad every time that I looked at it, whereas the new app brings me a little joy. Today the status update for the baby says, "Your baby continues to grow rapidly and is able to produce tears now". Tears. The idea that this baby will ever have to use those tears for anything other than scraped knees or spilt milk breaks my heart. Certainly, I have cried enough tears for a lifetime in just these last (almost) 10 months. Nobody should have to cry tears like these. My deepest wish for him (other than living a long and healthy life) is that he will never have anything in his life that is devastating enough to warrant the kinds of tears his momma has been crying. My hope is that, even when he becomes a man, he will feel like he can express himself through tears if he ever (god forbid) needs to. I was told recently that crying cleans the soul. If that is the case, mine should be squeaky. Sometimes I struggle with the idea of bringing more souls into this incredibly cruel world. I try to remember however, that for many, this world is a wonderful place and I do believe that if we are so lucky as to have Baby M for our lifetimes, he will make it wonderful for us again too.
I have an iphone app, I think it is called the "Pregnancy Companion". Honestly, it is not as good as the "What to Expect" app that I used with Max but I knew that if I used that app, it would make me sad every time that I looked at it, whereas the new app brings me a little joy. Today the status update for the baby says, "Your baby continues to grow rapidly and is able to produce tears now". Tears. The idea that this baby will ever have to use those tears for anything other than scraped knees or spilt milk breaks my heart. Certainly, I have cried enough tears for a lifetime in just these last (almost) 10 months. Nobody should have to cry tears like these. My deepest wish for him (other than living a long and healthy life) is that he will never have anything in his life that is devastating enough to warrant the kinds of tears his momma has been crying. My hope is that, even when he becomes a man, he will feel like he can express himself through tears if he ever (god forbid) needs to. I was told recently that crying cleans the soul. If that is the case, mine should be squeaky. Sometimes I struggle with the idea of bringing more souls into this incredibly cruel world. I try to remember however, that for many, this world is a wonderful place and I do believe that if we are so lucky as to have Baby M for our lifetimes, he will make it wonderful for us again too.
I know I just sent you to this blog a few days ago, but this is too brilliant for me to not link: http://susansobspot.blogspot.com/2012/05/you-have-made-me-hug-my-child-little.html.
Completely brilliant! And, yes, some days bereaved parents get ANGRY.
BECAUSE WE ARE HUMAN BEINGS! (You know? The way you get angry about much less devastating stuff). I have spent a lot of time feeling guilty that I sometimes say things that aren't pretty and that a couple of people remind me that I am "pushing everyone away". But, the truth is that not everyone IS pushed away. Some people have stuck around and perhaps those are the people that really matter anyway. So, if you can't deal with my truth....then don't. I feel good about being honest with myself. I feel good that even if I piss you off, there are other bereaved parents who completely get where I am coming from. I have certainly listened to everyone else complain about work, and their significant others, and quarrels with their friends, and business deals gone bad. I am not sure why I was supposed to turn into a quiet and grateful saint when my child died. I was no shrinking violet before Max died, I am not going to become one now.
Postscript: Sometimes the right person calls you at exactly the right time. I had a really hard day yesterday. As dark as my most dark. Actually, I haven't left my house since Saturday. Frankly, I have hardly left my bedroom. I was feeling extra lonely and sad yesterday. The world felt like it was caving in on me. I could barely catch my breath. It was perfect timing that my Auntie Alison called yesterday evening and let me talk and talk and talk. And, I know that she knows that everything I am feeling is totally normal and that Max was perfect and that my heart is so broken because he is gone. She doesn't tell me that I need to move on or that everything will be ok. She just tells me that eventually, this won't feel exactly the same and that even if it happens ever so slowly, the deep darkness will eventually pass. It is easy to lose sight of. Ten months later, the only thing that has worn off is the shock. Thank you Al.
No answers this week
Tuesday, May 15, 2012
Folks have asked about the genetic tests that we are doing. Those really expensive tests that we have been told probably won't shed any light on anything anyway. We were told that we would probably have results this week and we've been waiting for the last two months with baited breath. I think we both feel like we might find out something (like that there is no genetic disorder) even though we have been warned that we likely won't learn anything from the tests. If we find out there was no genetic disorder linked to Maxie's death, then Baby M's chances of survival would probably be the same as any other child born to any other couple. This would be "good news". Ted emailed the geneticists yesterday morning to get a status update and we found out that the tests haven't even been run yet. They were supposed to have run them two weeks ago. It takes about a week for the geneticists to run and then another week to analyze the results. They run the tests in batches and for some reason the last batch was delayed. I still wonder why they wait for us to contact them and they can't just be proactive to let us know first. If they knew that they had to delay the testing, why couldn't they just call us? It just doesn't seem professional...or humane. It is beyond frustrating and disappointing.
I wish that things like this didn't knock me out so hard but they do. All day Sunday, one of the things holding me together was the knowledge that these test results would come back this week. Now that I know we have to wait another few weeks, I am just completely knocked out (again). I am not the most optimistic person anymore but I am patiently waiting to find out that what happened to Maxie was not genetic and I am looking forward to taking that off our lists of worries. I have no reason to think that this will be the long shot outcome of these tests, but I am just convinced that we are going to get news that will help put our minds at ease. I was just hoping to get that news this week instead of having to wait another three weeks.
The email from the geneticists took all of my breath away and left me in a pile of sorrow. Even though I kept it together really well on Mother's Day, I had a real breakdown on Saturday in anticipation of the day coming. I cried myself to sleep and was doing that until well after 1 am on Saturday night. Each day is so different. The pain changes but never subsides. It's hard. Really hard. And, at the core - I just miss Max. I just miss him so much.
When Ted got home last night, we were both feeling it. We tried to watch our new favorite show (which I think may have only been good for the first episode because by episode two, the "wow wee" factor was feeling kind of repetitive) - "My Big Fat Gypsy Wedding", but we couldn't just put ourselves aside for the hour and marvel in spectacular festive culture of North American gypsies. Ted put his hand on mine and with tears in his eyes said, "I am so sorry that this is our lives. I am so sorry that we can't just have our baby". I am so sorry too. This is not the life I envisioned for us when we fell in love. It was not the plans we made when we stood on the beach and married each other. It is not the way I ever imagined things going when that beautiful little boy was born and turned my world into a more colorful and lovely place to be.
It was the mention of babies that made me realize that I hadn't felt Baby M in hours. This is especially weird because he moves A LOT and I can usually see him moving in addition to feeling him PLUS we had just eaten dinner. Baby M likes dinner and always starts doing somersaults after I eat. I decided to call my doctor to ask his advice. Instead, I ended up with the doctor on-call. She is another doctor in the same practice who I am sure is so wonderful when you haven't had a baby die. She smiles and giggles a lot. I have had to see her twice since Max passed. It is always awkward. I explained to her that I wasn't feeling him and she asked how long it had been. She suggested that I just go to the hospital to put our minds at ease. Then she asked, "Do you feel you have reason to be nervous?" and I said, "Well, my child died last summer from SIDS" and she laughed and said, "Oh, well, then you should probably go". Funny.....Not.
I am not sure I need to tell this whole story but, we did go down there. The whole way there in the car I wondered who I was more scared for - the baby or me? I am so scared that I will be tested again - forced to survive this torture for a second time. I wouldn't live through it. I currently don't live - I exist....but Baby M gives me hope that I might someday live again. If I had to go through this again, I am not sure I would live - just continue existing. That's no life. This - what I am doing now - is not living.
The nurse who attended to us after arriving was very nice. I explained to her that I hadn't felt the baby. I told her about Max. She wasn't weird or awkward or fake. She simply made me feel that coming in was the right thing to do and told me how sorry she was. She hooked up the heart rate monitor and we could hear right away that all was well with Baby M....and wouldn't you know it? He started kicking right then. Big powerful ones. Ted and I felt so relieved. Relieved and grateful for this baby's heartbeat. A promise, we hope, of life after this terrible, unbearable storm. I cried the whole way home. This is all just too much to take and I am just lost without Max. Just completely and totally lost.
I wish that things like this didn't knock me out so hard but they do. All day Sunday, one of the things holding me together was the knowledge that these test results would come back this week. Now that I know we have to wait another few weeks, I am just completely knocked out (again). I am not the most optimistic person anymore but I am patiently waiting to find out that what happened to Maxie was not genetic and I am looking forward to taking that off our lists of worries. I have no reason to think that this will be the long shot outcome of these tests, but I am just convinced that we are going to get news that will help put our minds at ease. I was just hoping to get that news this week instead of having to wait another three weeks.
The email from the geneticists took all of my breath away and left me in a pile of sorrow. Even though I kept it together really well on Mother's Day, I had a real breakdown on Saturday in anticipation of the day coming. I cried myself to sleep and was doing that until well after 1 am on Saturday night. Each day is so different. The pain changes but never subsides. It's hard. Really hard. And, at the core - I just miss Max. I just miss him so much.
When Ted got home last night, we were both feeling it. We tried to watch our new favorite show (which I think may have only been good for the first episode because by episode two, the "wow wee" factor was feeling kind of repetitive) - "My Big Fat Gypsy Wedding", but we couldn't just put ourselves aside for the hour and marvel in spectacular festive culture of North American gypsies. Ted put his hand on mine and with tears in his eyes said, "I am so sorry that this is our lives. I am so sorry that we can't just have our baby". I am so sorry too. This is not the life I envisioned for us when we fell in love. It was not the plans we made when we stood on the beach and married each other. It is not the way I ever imagined things going when that beautiful little boy was born and turned my world into a more colorful and lovely place to be.
It was the mention of babies that made me realize that I hadn't felt Baby M in hours. This is especially weird because he moves A LOT and I can usually see him moving in addition to feeling him PLUS we had just eaten dinner. Baby M likes dinner and always starts doing somersaults after I eat. I decided to call my doctor to ask his advice. Instead, I ended up with the doctor on-call. She is another doctor in the same practice who I am sure is so wonderful when you haven't had a baby die. She smiles and giggles a lot. I have had to see her twice since Max passed. It is always awkward. I explained to her that I wasn't feeling him and she asked how long it had been. She suggested that I just go to the hospital to put our minds at ease. Then she asked, "Do you feel you have reason to be nervous?" and I said, "Well, my child died last summer from SIDS" and she laughed and said, "Oh, well, then you should probably go". Funny.....Not.
I am not sure I need to tell this whole story but, we did go down there. The whole way there in the car I wondered who I was more scared for - the baby or me? I am so scared that I will be tested again - forced to survive this torture for a second time. I wouldn't live through it. I currently don't live - I exist....but Baby M gives me hope that I might someday live again. If I had to go through this again, I am not sure I would live - just continue existing. That's no life. This - what I am doing now - is not living.
The nurse who attended to us after arriving was very nice. I explained to her that I hadn't felt the baby. I told her about Max. She wasn't weird or awkward or fake. She simply made me feel that coming in was the right thing to do and told me how sorry she was. She hooked up the heart rate monitor and we could hear right away that all was well with Baby M....and wouldn't you know it? He started kicking right then. Big powerful ones. Ted and I felt so relieved. Relieved and grateful for this baby's heartbeat. A promise, we hope, of life after this terrible, unbearable storm. I cried the whole way home. This is all just too much to take and I am just lost without Max. Just completely and totally lost.
Yesterday
Monday, May 14, 2012
I was very gentle with myself yesterday. I worked hard to not let myself "go there" (anywhere dark). When flashbacks or angry thoughts or deep sadness tried to seep in, I literally forced it all out of my mind. Ted really took care of me. He woke up and got us bagels and coffee and gave me a really sweet card. Then, we sat outside and had breakfast at our brand new patio table. Did I even mention that Ted got this BEAUTIFUL table for more than 75% off? Honestly, I think this is my new favorite piece of furniture ever. It seats eight. Eventually we may have eight people over again. It could happen.
I spent the rest of the day doing stuff for my babies: working on my art projects and photo albums. We watched movies and just hung out on our new couch!
I got lots of nice emails and text messages from friends - no "Happy Mothers Day"s, just lots of "Thinking about you"s. Really nice. Thank you. I am repeating a new mantra to myself...thinking that if I say it enough, maybe I will just accept it instead of agonizing about it all of the time. "Maxie and I will be together again and then we will have all of eternity to love and play with each other". Is that how people build faith? If you just repeat it and want it, does it become your truth? I hope so. There is nothing I want more. I am thrilled that I got through the first of my lifetime of Mothers Days without Max.
I spent the rest of the day doing stuff for my babies: working on my art projects and photo albums. We watched movies and just hung out on our new couch!
I got lots of nice emails and text messages from friends - no "Happy Mothers Day"s, just lots of "Thinking about you"s. Really nice. Thank you. I am repeating a new mantra to myself...thinking that if I say it enough, maybe I will just accept it instead of agonizing about it all of the time. "Maxie and I will be together again and then we will have all of eternity to love and play with each other". Is that how people build faith? If you just repeat it and want it, does it become your truth? I hope so. There is nothing I want more. I am thrilled that I got through the first of my lifetime of Mothers Days without Max.
On Mothers Day
Sunday, May 13, 2012
My sweet Max,
You've been gone a little longer than you were
here by now. Your absence is still all I feel every day. Every day.
Especially today. Though I often feel angry or sad about losing you, I also feel tremendously blessed to have had you. You made me a
mommy – the thing I wanted to be my whole life. I felt unsure
about what kind of a mother I would be, but you made it so easy for
me. It was as if it was the only thing I had ever been. You made me a more compassionate, loving and patient soul and I will be forever grateful for those gifts.
My sweet boy. You surprised me with your happiness. Your good natured and easy going personality made it a delight to parent you. Your quiet curiosity. Your beautiful open heart. You were sure to be a child that I would always take pride in. My heart still swells with pride in your spirit. I could not believe that you were actually mine - this boy I had waited my whole life for. In my eyes, you are and will always be perfect. My search for meaning in this life without you is proving to be a difficult road because you were everything to me and still are. I love you more each day and I will miss you for a lifetime. Maxie- you are my whole heart.
Love forever,
Mommy
Love forever,
Mommy
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I carry your heart with me
EE Cummings
I carry your heart with me (I carry it in my heart)
I am never without it (anywhere I go you go, my dear; and whatever is done
by only me is your doing, my darling)
I fear no fate (for you are my fate, my sweet)
I want no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
I carry your heart (I carry it in my heart)
--------------------------------------------------------------------
To my mommy friends who have lost their beloved children (and to those friends who have lost mothers):
On the Jewish High Holy Day of Yom Kippur (The Day of Atonement), Jews traditionally fast.
In the days and weeks leading up to that day, we wish each other an "Easy Fast" -
knowing that getting through that day without food is incredibly difficult
Today I wish you all an "Easy Mothers Day", knowing that living without our babies today (like every day) is next to impossible.
This morning, Gavin's mommy sent me this.
"If you're tired today then sleep. If the sun hurts your eyes close the blinds. If you feel like crying cry."
I wish the same for all of you with so much love.
On my shoulders
Saturday, May 12, 2012
I am carrying around those proverbial characters on my shoulders – you know the ones. There is one that screams in my ears all day “to hell with everything and everyone! You were meant to walk this earth alone!” The other guy is really soft and supportive, he tells me “Max's life was invaluable and will continue to have meaning always – if you make it so.” The louder guy usually wins the battle and so I sit in my dark house all day crying, shutting everyone of importance (and unimportance) out of my life.
When I let the softer guy in, I think about this knowledge I have now...the deep knowledge I have that our souls go deep and that we can connect to other human beings in a way that is other worldy – the way I connected to and loved Max. The knowledge that this life is short and that I should be making the most out of every minute I have left. The knowledge I now have that so many people are suffering and that to acknowledge that IS, in fact, soft. The awareness of people who actually care – whether it is because they understand true suffering or whether it is because they actually love us. When I listen to what he has taught me these last nine and a half months, I want to put myself aside, be sweet and loving for the sake of being sweet and loving, engage in the activities that used to bring me joy so that the time passes quicker, and put my sadness aside for the sake of making the people around me more comfortable – all of the people who just want us to be happy again.
Then the louder guy screams at me “They want you to be happy again because it will make them more comfortable. They don't care about your happiness! They only care about their own! It will be no wonder when people treat you like Max's death was something 'to get over' when you start acting like you are over it!”. From him I have learned some terrible stuff - That my pain only matters to me. That there is no justice in the way that life works out...how could there be justice in a world where babies die? It makes me want to rob a bank. That for as many strangers who show incredible compassion, there are as many people who have known me forever that just want me to be all better and for the whole thing to go away because they are bored of it already. I love this post from another blogger about the things that she's learned (honestly, I love her whole blog, though I wish with everything that I am that she never had to write it). And - What about Max? WHAT ABOUT MAX? The loud character reminds me daily that I hate you for not caring with me that his beautiful life is gone. Will Baby M's life matter more because he is the one that lives? Don't you understand that they are both my sons???!!!
I have had the flu for the last few days. The first night was unbearable – to have to hold this much emotional pain all day, every day, and then the pain of this flu on top of it was un-effing-bearable...and I am usually no wuss about being sick – I generally work, drink and exercise right through it, if it hits me at all. Yesterday, as I was falling asleep, I felt a hand on my shoulder – as real as anything I have ever experienced while awake. No joke. I then heard a voice in my ear, clear as a bell, saying, “When are you going to kill yourself already?” It sucked all of the air out of the room. I guess my loud friend sits on my left shoulder. If he had said anything kind at all, I would have been convinced that I was having an after death communication with my gramps or someone else I love who I've been trying to connect to. It shook me up badly. Is this what going crazy is like?
But see, I can't let the loud character win...even though he is so much louder and more articulate! I've got Maxie's little brother on the way. A JNF donor I love sends me an email every few weeks that says "Chai" in the subject line. "Chai" means "Life" in Hebrew. She spent seven years choosing life after the horrific murder of her brother. She knows how dark it is "in here". I know that soon, I have to start choosing life. My little light is coming (in 73 days!) I have to start listening to my right shoulder friend...my soft little angel. I've been told Maxie is my guardian angel who will be on my shoulder for life. If there is indeed an afterlife, he is waiting for me. He knows that I am counting down the days until I get to see him again much like I am counting down the days until I get to meet his brother. I just don't have as clear of a timeframe for my reunion with Max (but maybe he does).
The dark side screams while the light side whispers. If you knew me, you would know that I have always chosen the "louder" people. When my friends sit together, nobody can get a word in edgewise. It's no wonder that the loud guy keeps winning. But, Maxie was a quiet guy and he stole my heart in a more dramatic way than it has ever been stolen. He brought out the softer side of me. He was the first one to show me that the quiet ones shouldn't be overlooked. They may not say much (or anything at all actually) but they will be with you. They will connect to you (for real). They will love you unconditionally. They will wait for you on the other side for however long it takes for you to get there. I know Maxie's little brother will give me the courage and desire to stay here a little longer. I have to take care of him, and love him (and sing to him, and change his diaper, and bathe him and play with him). I have to stay here for my husband - so we can someday dance again, laugh again, go outdoors together again. My reunion with my first little boy will have to wait for now - however painful it may be...however loud the voice is that keeps calling for me to go be with him. Most importantly, I have to ensure Maxie's life continues to have meaning. I am literally fighting with the devil these days for these things. He is screaming at me and I don't have the energy to scream back and in so many ways I think he is on to something. But, I know, DEEP in my heart that I have some work left to do in this world and all of it is important enough to stick around for. Maxie, please wait for me. I love you.
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