Thanksgiving
Thursday, November 24, 2011
I am so thankful to be Maxie's mommy. I am so thankful to have even had the chance to spend the smallest amount of time with him. I am so thankful to have the most loving husband, who is the most wonderful father. I am grateful for my family - each and every one. We are so lucky to have friends who do their best to make sure we know how much we are loved and who make an effort to keep Maxie's memory alive in their daily lives. I am so thankful that Maxie was able to experience last Thanksgiving and so much attention and love I am thankful to be able to carry his love and memory in my heart for the rest of my life and to hopefully be reunited with him some day for all of eternity. Happy Thanksgiving.
Parental Grief and a SIDS Death
Wednesday, November 23, 2011
I am kind of tired of trying to explain the complexity of this grief that I feel. But, I found this interesting link (and have actually found SO many over the last four months) that validates my experience not that it needs validating at all but somehow I keep finding individuals who want to challenge my experience. This website specifically talks about the complex grief and depression that a parent feels when they lose a child: http://www.athealth.com/consumer/disorders/parentalgrief.html. About a third down the way on the page, they specifically talk about a SIDS death. Please take the time to read it (I have posted that piece below) I recognize that it makes some people so uncomfortable (people who don't even know me) to know that I am depressed. I think that speaks volumes about the society that we live in. A society in which I should feel shame that I am so depressed over my child dying. I have been pretty straight forward about how I feel, even writing the details of my panic attack. I do not feel ashamed. I think that grief is complex, that I suffer from complex grief, and that it is important not to sugar coat this experience. The last comment on my blog somehow even seemed to be aggressive in telling me that I am depressed and in saying that they hoped my therapist was skilled enough to identify this. My therapist is skilled enough to have identified this, so rest easy. Depression is very serious on the one hand but is also not an abnormal experience to have after a baby dies. What follows below is the text from the link above about SIDS. It is right on target as to how this kind of a death makes a parent feel and as to the kinds of responses we encounter:
Parental Grief And A SIDS Death
The impact of a Sudden Infant Death Syndrome (SIDS) death presents unique grieving factors and raises painful psychological issues for the parents and family as well as those who love, care for, and counsel them. SIDS parents must deal with a baby's death that is unexpected and unexplained, a death that cannot be predicted or prevented, an infant death so sudden that it leaves no time for preparation or goodbyes, and no period of anticipatory grief. In many cases, parents of SIDS babies are very young and are confronted with grief for the first time.
SIDS often occurs at home, forcing parents and siblings or other children to witness a terrible tragedy and possibly scenes of intense confusion. In some cases, the parents themselves are the ones who find the child dead and they must always live with that memory. In other cases, the parents may feel overwhelming guilt or anger if the death occurred while the child was in daycare. They may feel that the baby might not have died if they had been caring for it. "All too frequently, a SIDS loss is not socially validated in the same way other deaths are. Others often fail to recognize that, despite the brevity of the child's life, the family's attachment to that child is strong and deep and has been present in various ways since the knowledge of conception" (Rando 1986,167).
SIDS parents must take a journey that "involves a trek through grief-a strange and hostile territory that no one would ever pass through if given the choice" (Horchler and Morris 1994, 17). SIDS parents often retain strong feelings of guilt and sometimes a sense of responsibility for what happened even though they've been told there was nothing they could have done to prevent the death. Sometimes, parents are the victims of undeserved suspicion from law enforcement personnel, even family members, neighbors, or friends. In the most difficult situations, the baby's death may cause parents to be subjected to grueling investigations and hostile questions; they may even face accusations of child abuse.
SIDS parents, relatives, daycare providers, health care professionals, and other adults feel helpless in trying to explain the unexplainable to other young children who may have been present at the time of the baby's death. It is especially difficult for children to understand why a baby died when it didn't appear to be sick. Also, in some cases parents are required to explain SIDS to adults who are misinformed or know nothing about the syndrome.
Any infant or early childhood death forces adults to think about their own vulnerability, but a SIDS death also brings with it total mystery, an absence of answers, and a frightening loss of control. The chaos surrounding a SIDS death leaves most parents feeling that nothing in life is predictable; a SIDS death throws everything off balance.
As is the case in most traumatic experiences, SIDS parents are likely to continually replay the events surrounding the death over and over in their minds and in their conversations. Whether the parents put a seemingly healthy baby down for a nap or for the night or took the child to the daycare provider, they assumed their child was well and in a protected environment. They felt secure; their family and their world were in order. Then suddenly, everything has been turned upside down. Even though there may be attempts to reassure the parents that the baby didn't appear to suffer, frequently they are not convinced. They repeatedly ask, "How can a perfectly healthy baby die?" Often these parents are told that SIDS doesn't carry a high hereditary risk; yet fears about having subsequent children haunt them.
SIDS parents also are very often plagued by "if only's" that they are never able to resolve. They mentally replay such thoughts as: "If only I hadn't put the child down for a nap when I did." "If only I had checked on the baby sooner." "If only I had not returned to work so soon." "If only I had taken the baby to the doctor with that slight cold."
SIDS parents also need to know the value and importance of obtaining reliable information. They need to have access to professional support; and they need to be aware of the great benefits other parents have gained from attending support groups and sharing their experience or by expressing their thoughts and feelings in writing.
Moreover, bereaved SIDS parents often find that health care professionals are as perplexed as they are and cannot provide them with any explanation for the death. Although most health professionals know about SIDS, not all can provide parents with the information they so anxiously seek. They are unable to provide answers to questions such as: "Did my baby suffer?" "What are the possible causes of SIDS?" "What can I do to prevent another child from dying of SIDS?" "Are there symptoms I should have known about that could have prevented the death?"
In the case of some SIDS deaths, the autopsy findings may still leave unanswered questions, or the child's death may be attributed to causes that are problematic for the parents. Some families are subjected to agonizing doubts and delays from the legal system about the exact cause of death. The absence of standardized procedures for determining the cause of unexpected infant deaths brings added pain and frustration to parents already in the midst of a harrowing nightmare. Thus, SIDS parents are often denied the sense of closure that comes from knowing the exact cause of their baby's death.
A single SIDS death can have a ripple effect on as many as 100 people who came in contact with the baby or the family. "The expanded circle of concern" (Corr et al. 1991, 43) can include parents, extended family, neighbors, coworkers, child care providers, health care and emergency personnel, clergy, funeral directors, and other care providers.
SIDS parents and family members need to be around people who will offer them support in a nonjudgmental way; they need to know that some things in their lives are permanent and there are certain people on whom they can truly depend. Other family members, friends, or professionals can provide this sense of dependability and assurance by allowing parents both permission and ways to express their grief and talk about their confusion. SIDS parents need to talk and they need someone to listen-really listen-even if they tell their story, express their doubts and fears, and ask the same questions repeatedly. What SIDS and other bereaved parents are really saying is, "Let me tell you about my pain; let me talk about my child with you; please do call my child by name; please do not let my child be forgotten."
Friends and family members should try to do all they can to show their concern and help the parents in keeping alive memories of their baby. For most SIDS parents, it is also reassuring for others to try to mention special things they noticed about the baby and to remember the child's birthday or the anniversary of the death. By extending these personal and sensitive gestures, loving and concerned relatives, friends, and caregivers can become a source of reassurance and comfort for the grieving parents.
Some SIDS babies are so young when they die that family members and friends never had a chance to welcome them. They may have missed sharing the parents' excitement over the birth and affirming the child's existence. Many individuals do not understand the depth of parental attachment to a very young child. Bereaved SIDS parents should not be made to feel that others don't want to hear them, that others won't permit them to openly grieve. The parents of SIDS babies want their child's short life to matter not only to them, but to their families and friends, to the others in their "circle of concern," to the world.
Parental Grief And A SIDS Death
The impact of a Sudden Infant Death Syndrome (SIDS) death presents unique grieving factors and raises painful psychological issues for the parents and family as well as those who love, care for, and counsel them. SIDS parents must deal with a baby's death that is unexpected and unexplained, a death that cannot be predicted or prevented, an infant death so sudden that it leaves no time for preparation or goodbyes, and no period of anticipatory grief. In many cases, parents of SIDS babies are very young and are confronted with grief for the first time.
SIDS often occurs at home, forcing parents and siblings or other children to witness a terrible tragedy and possibly scenes of intense confusion. In some cases, the parents themselves are the ones who find the child dead and they must always live with that memory. In other cases, the parents may feel overwhelming guilt or anger if the death occurred while the child was in daycare. They may feel that the baby might not have died if they had been caring for it. "All too frequently, a SIDS loss is not socially validated in the same way other deaths are. Others often fail to recognize that, despite the brevity of the child's life, the family's attachment to that child is strong and deep and has been present in various ways since the knowledge of conception" (Rando 1986,167).
SIDS parents must take a journey that "involves a trek through grief-a strange and hostile territory that no one would ever pass through if given the choice" (Horchler and Morris 1994, 17). SIDS parents often retain strong feelings of guilt and sometimes a sense of responsibility for what happened even though they've been told there was nothing they could have done to prevent the death. Sometimes, parents are the victims of undeserved suspicion from law enforcement personnel, even family members, neighbors, or friends. In the most difficult situations, the baby's death may cause parents to be subjected to grueling investigations and hostile questions; they may even face accusations of child abuse.
Probably the most stressful and anxiety-provoking act in human existence is the separation of a woman from her newborn infant. The response to this, which humans share with most of the animal kingdom, is an overwhelming combination of panic, rage, and distress. - RUSKIN, IN HORCHLER AND MORRIS 1994,16
SIDS parents, relatives, daycare providers, health care professionals, and other adults feel helpless in trying to explain the unexplainable to other young children who may have been present at the time of the baby's death. It is especially difficult for children to understand why a baby died when it didn't appear to be sick. Also, in some cases parents are required to explain SIDS to adults who are misinformed or know nothing about the syndrome.
Any infant or early childhood death forces adults to think about their own vulnerability, but a SIDS death also brings with it total mystery, an absence of answers, and a frightening loss of control. The chaos surrounding a SIDS death leaves most parents feeling that nothing in life is predictable; a SIDS death throws everything off balance.
As is the case in most traumatic experiences, SIDS parents are likely to continually replay the events surrounding the death over and over in their minds and in their conversations. Whether the parents put a seemingly healthy baby down for a nap or for the night or took the child to the daycare provider, they assumed their child was well and in a protected environment. They felt secure; their family and their world were in order. Then suddenly, everything has been turned upside down. Even though there may be attempts to reassure the parents that the baby didn't appear to suffer, frequently they are not convinced. They repeatedly ask, "How can a perfectly healthy baby die?" Often these parents are told that SIDS doesn't carry a high hereditary risk; yet fears about having subsequent children haunt them.
[The grief SIDS parents feel is like a]...continuous, crashing waterfall of pain...SIDS is a forced separation that will last forever. In the beginning, survivors are so shocked that their bodies and minds cannot even begin to comprehend all that has been lost...Shock and disbelief overtake most survivors so they can only vaguely feel their own empty arms and the rage that will eventually come full force. ...SIDS parents attempt to transcend the awfulness of [the baby's] death by choosing to celebrate the dead infant's life while not denying the physical finality of the death...[After a SIDS death, parents attempt] to travel the long road of grief to a place of rest and hope...SIDS parents must [try to] actively seek peace and joy in life-even in the face of a grief that will never end... - HORCHLER AND MORRIS 1994, 2, 16, 17, 248
SIDS parents also are very often plagued by "if only's" that they are never able to resolve. They mentally replay such thoughts as: "If only I hadn't put the child down for a nap when I did." "If only I had checked on the baby sooner." "If only I had not returned to work so soon." "If only I had taken the baby to the doctor with that slight cold."
SIDS parents also need to know the value and importance of obtaining reliable information. They need to have access to professional support; and they need to be aware of the great benefits other parents have gained from attending support groups and sharing their experience or by expressing their thoughts and feelings in writing.
Moreover, bereaved SIDS parents often find that health care professionals are as perplexed as they are and cannot provide them with any explanation for the death. Although most health professionals know about SIDS, not all can provide parents with the information they so anxiously seek. They are unable to provide answers to questions such as: "Did my baby suffer?" "What are the possible causes of SIDS?" "What can I do to prevent another child from dying of SIDS?" "Are there symptoms I should have known about that could have prevented the death?"
In the case of some SIDS deaths, the autopsy findings may still leave unanswered questions, or the child's death may be attributed to causes that are problematic for the parents. Some families are subjected to agonizing doubts and delays from the legal system about the exact cause of death. The absence of standardized procedures for determining the cause of unexpected infant deaths brings added pain and frustration to parents already in the midst of a harrowing nightmare. Thus, SIDS parents are often denied the sense of closure that comes from knowing the exact cause of their baby's death.
A single SIDS death can have a ripple effect on as many as 100 people who came in contact with the baby or the family. "The expanded circle of concern" (Corr et al. 1991, 43) can include parents, extended family, neighbors, coworkers, child care providers, health care and emergency personnel, clergy, funeral directors, and other care providers.
SIDS parents and family members need to be around people who will offer them support in a nonjudgmental way; they need to know that some things in their lives are permanent and there are certain people on whom they can truly depend. Other family members, friends, or professionals can provide this sense of dependability and assurance by allowing parents both permission and ways to express their grief and talk about their confusion. SIDS parents need to talk and they need someone to listen-really listen-even if they tell their story, express their doubts and fears, and ask the same questions repeatedly. What SIDS and other bereaved parents are really saying is, "Let me tell you about my pain; let me talk about my child with you; please do call my child by name; please do not let my child be forgotten."
Friends and family members should try to do all they can to show their concern and help the parents in keeping alive memories of their baby. For most SIDS parents, it is also reassuring for others to try to mention special things they noticed about the baby and to remember the child's birthday or the anniversary of the death. By extending these personal and sensitive gestures, loving and concerned relatives, friends, and caregivers can become a source of reassurance and comfort for the grieving parents.
Some SIDS babies are so young when they die that family members and friends never had a chance to welcome them. They may have missed sharing the parents' excitement over the birth and affirming the child's existence. Many individuals do not understand the depth of parental attachment to a very young child. Bereaved SIDS parents should not be made to feel that others don't want to hear them, that others won't permit them to openly grieve. The parents of SIDS babies want their child's short life to matter not only to them, but to their families and friends, to the others in their "circle of concern," to the world.
The dynamics of a SIDS loss [mean]...there is no chance to say goodbye to the infant or to absorb the reality of the loss gradually over time; the unexpected loss so overwhelms people that it reduces their functioning and compromises their recovery...The physical and emotional shock of the infant's death undermines the [parents'] capacity for regaining a feeling of security; the SIDS loss evokes particularly problematic grief reactions, such as the abrupt severing of the mother and father infant bond. - RANDO 1986, 166
I do want to explain a little bit about why I was so angry yesterday. You see, I am very fragile. I lost my baby. I feel as though the whole world will come crashing in on me at every minute of every day. And, by the way, it already did when Max died. I have this Post Traumatic Stress Disorder, which is a real thing and causes me to have a running slideshow in my brain nearly all day long of my Max moments - all of the beautiful lovely ones as well as the entire 55 hours from the time that I received the call that he stopped breathing to the time when we had to take him off of the breathing machine and watch him take his last breath. I cry every single day. Sometimes all day long. Sometimes less. I have a headache, heartache and a stomach ache all day, every single day. I feel a phantom baby sitting in my arms and if I close my eyes, I can imagine kissing his cheeks and the back of his head and nibbling on his little ears and whispering to him how much I love him - every single day. I wake up every day sad. Every single day. This is a lot for me to handle myself. I can hardly handle it at all. I can't tell you exactly how Ted feels but what I can tell you is that he is devastated. Max was his little boy and best friend. He has a beautiful photo of Max in his car that used to be there to make him smile while driving but now serves as a memorial. He has all of his own sadness and then comes home to me, which can only make him extra sad. In spite of many people knowing this, there are still certain people who seem to want to take this opportunity to teach us a lesson - whether in self reliance, or in stepping up to the plate, or in accepting that life is tough and we should learn to grin and bear it. If they aren't trying to teach us a lesson, they are just unwilling to adjust their approach with us just because our baby died. Some of these people are "friends", some of these people are colleagues, a couple have been "professionals" that we have paid to help us through this crisis. One professional told me that my grief does not serve me...as if it is a choice. This professional has never lost anyone close to her except her own dog, so I am sure that from her perspective grief does seem like a choice. I would dare her or anyone to find a parent who has lost a child and didn't grieve...and parents who murder their own children don't count. I have a friend who I politely asked to try and find someone else to lean on after her dog died. Her response was "Nah". She wanted to continue to share everything from her life with me, even if it hurt me. I think the lesson she wanted me to learn was that the world doesn't stop spinning because of my loss. Or maybe it was that everyone has grief and I need to be sympathetic to others going through things. I recently asked a colleague for help in trying to put together a plan for my future. He told me that my strength was in the work I used to do and that I was on my own (not in those exact words but pretty close). Perhaps to my old self, each of these examples (and plenty more) would seem like no big deal. Just people who don't really get it or just don't want to help. No big deal, right? I have let so very few people into my sacred space, I have been so selective about who I engage with that if I have let you in, you are among few. I have only let people in who I think will be soothing or who I think might be able to help me in some way. I am protecting myself because I am breaking. The truth is that I know these people who have hurt me well enough to know that they don't "get it" and probably wouldn't be helpful or soothing. In most cases, these people have hurt me on more than one occasion since Max died or in more than one way. Still, what drives me out of my mind is that each of these people thinks that they were doing me a favor - by visiting with us, by teaching us a lesson, by helping me learn to be more self sufficient. That with all of their worldly knowledge, they were teaching me something. Or that I would be grateful that they took time out of their schedules to visit or sit down with little old me. What they don't understand is that every day I learn a new hard lesson about life...with or without their help. If you are worried that I haven't learned enough or that somehow my fragility is such that I can't do for myself, you can stop worrying. I have learned enough about life for ten lifetimes. Hate to say it, but I probably have learned more about life than you. And I now understand that when you say "I can't imagine what you must be feeling", you really mean it. What I am feeling is dread every morning that I wake up that I have to face another day. What I am feeling is complete heartbreak that I will never see my child again in my lifetime. Never Again! What I am feeling is sorrow that my life will never be as good again and I have years of sorrow to look forward to - the whole entirety of my lifetime. What I am feeling is shock, horror, disappointment, grief, anger, sadness, despair! Imagine the shittiest day of your life and then imagine waking up to it every day forever. You wouldn't want to "do lunch" on the shittiest day of your life. You wouldn't want to listen to someone who hasn't been through what you have been through tell you how it's going to get better. You wouldn't want someone trying to distract you by speaking in tongues or making joke after joke. You may think that is what you would want - you wouldn't. You would want someone to really listen to you. You would want someone who really cared about you enough to maybe even put your needs ahead of their own, even if just for the time you spent together. You would want help from someone who had the ability to be helpful to you. I honestly just don't have room in my life for the people who want to teach me a lesson right now. I need to focus on being as well as possible. I barely have room in my life for my very nearest and dearest right now. I love hearing from people. I love emails and comments on the blog and even a voicemail (because I don't always pick up the phone). But, I guess what I am saying is that unless you have been where I have been, please try not to ignore my vulnerability and grief. It isn't going anywhere very soon and you don't know better than I do about what I need. Please try to be compassionate and remember that I am a mother who lost her baby and that I am sensitive and heartbroken and my spirit has been destroyed. If you can remember to approach me with love in your heart instead of an agenda, you will find that I will love you in return.
You're so vain....
Tuesday, November 22, 2011
You probably think this post is about you....
I think it is important to start this post by saying that I probably am not talking about you. Most every single person who has been close to us through the years has gone above and beyond to make sure we know how much we are loved, but, I have also found that the people who always think it is about them are the ones who keep hurting me. I am angry today. Just so angry. There are people who keep letting me down. They interact with me as if it is somehow all about them. They reach out to me to feel good about themselves, not because they are interested in how I feel. And, it is obvious. I am not saying that they 100% do not care about me, I am saying, they are mostly thinking about themselves. They want to tell me all about their kids and all about their awesome lives (which is fine) or they just want to talk about some issue that is happening at work but when I bring up Max, it becomes a battle. They get defensive. "I was just trying to help", they say. Really? The most helpful thing you can do is listen to me, is to try and understand me. If I was longing to shoot the shit and jib jab about life, I have at least 100 people I could call (and I am grateful to those 100 people for being in my lives...and I look forward to jib jabbing with them in the future). I am focused on my loss. If you thought I would be able to focus on anything else, you were mistaken and I apologize. But, I am also angry today that I NEED to apologize. That I need to worry about whether bumping into me will be uncomfortable for you, or that when you come over you don't feel so awkward, or that you will be uncomfortable if I bring up Max. I love my son as much as you love yours. I am just not lucky enough to hold him in my arms. I am not lucky enough to tell you stories about what silly thing he did yesterday. I am not lucky enough to watch him grow up. I am looking for support (and to be honest....I am not even really looking for it). I don't call you up and ask you to come over (with the exception of maybe 2-3 people), I don't ask for you to help me think through a problem I am having, I don't ask you for anything really if you think about it. But if I want anything from you, it is for you to help me get through this. I am a lucky girl in that I have got a lot of friends. I have a lot of close friends, from growing up, from high school, from college from post college... I have put many of these friendships aside for the time being so that I can heal. I don't need you in my sacred space right now. I am figuring out how to heal with the help of my husband, my family, a few friends and some professionals. So, I guess what I am saying is that you aren't really doing me a favor by checking in if you can't handle what you are going to hear from me. If hearing how miserable it is to live without my son feels aggressive to you, you should probably acknowledge that you aren't capable of handling this kind of grief, and that is ok. If you come to me asking how you can help and I ask for your help...don't act surprised. We aren't in a battle. I am telling you how you can help me. If this post makes no sense to you....I am not talking to you. Right? Make sense? If I tell you what I need but you would rather shoot the shit, I don't have room for you right now. It isn't because I don't like you or because I am not being fair. It is because I am dealing with shit you can't even imagine (and more than likely, you have repeatedly told me that you can't imagine it). Anyway, some days I wake up angry. Today is one of those days.
I think it is important to start this post by saying that I probably am not talking about you. Most every single person who has been close to us through the years has gone above and beyond to make sure we know how much we are loved, but, I have also found that the people who always think it is about them are the ones who keep hurting me. I am angry today. Just so angry. There are people who keep letting me down. They interact with me as if it is somehow all about them. They reach out to me to feel good about themselves, not because they are interested in how I feel. And, it is obvious. I am not saying that they 100% do not care about me, I am saying, they are mostly thinking about themselves. They want to tell me all about their kids and all about their awesome lives (which is fine) or they just want to talk about some issue that is happening at work but when I bring up Max, it becomes a battle. They get defensive. "I was just trying to help", they say. Really? The most helpful thing you can do is listen to me, is to try and understand me. If I was longing to shoot the shit and jib jab about life, I have at least 100 people I could call (and I am grateful to those 100 people for being in my lives...and I look forward to jib jabbing with them in the future). I am focused on my loss. If you thought I would be able to focus on anything else, you were mistaken and I apologize. But, I am also angry today that I NEED to apologize. That I need to worry about whether bumping into me will be uncomfortable for you, or that when you come over you don't feel so awkward, or that you will be uncomfortable if I bring up Max. I love my son as much as you love yours. I am just not lucky enough to hold him in my arms. I am not lucky enough to tell you stories about what silly thing he did yesterday. I am not lucky enough to watch him grow up. I am looking for support (and to be honest....I am not even really looking for it). I don't call you up and ask you to come over (with the exception of maybe 2-3 people), I don't ask for you to help me think through a problem I am having, I don't ask you for anything really if you think about it. But if I want anything from you, it is for you to help me get through this. I am a lucky girl in that I have got a lot of friends. I have a lot of close friends, from growing up, from high school, from college from post college... I have put many of these friendships aside for the time being so that I can heal. I don't need you in my sacred space right now. I am figuring out how to heal with the help of my husband, my family, a few friends and some professionals. So, I guess what I am saying is that you aren't really doing me a favor by checking in if you can't handle what you are going to hear from me. If hearing how miserable it is to live without my son feels aggressive to you, you should probably acknowledge that you aren't capable of handling this kind of grief, and that is ok. If you come to me asking how you can help and I ask for your help...don't act surprised. We aren't in a battle. I am telling you how you can help me. If this post makes no sense to you....I am not talking to you. Right? Make sense? If I tell you what I need but you would rather shoot the shit, I don't have room for you right now. It isn't because I don't like you or because I am not being fair. It is because I am dealing with shit you can't even imagine (and more than likely, you have repeatedly told me that you can't imagine it). Anyway, some days I wake up angry. Today is one of those days.
Maxie's Acid Reflux
Monday, November 21, 2011
I remember taking this picture so clearly. Max and I had just been at Mommy and Me Yoga and we lasted about 15 minutes because he was crying through the whole thing. I tried nursing him, rocking him, rubbing his little back - it all made him cry harder. That was during Hanukkah of 2010. I was still on maternity leave. He had started crying non-stop the night before. We left yoga and stopped at the post office on the way home so that I could send a package of a few early hand me downs to my girlfriend in France who was expecting a little boy. She was so worried that her little boy might come early and she wouldn't have clothes for him so I put together a little package of a few things that Maxie had already outgrown. He was less than two months old here. I took this photo in the post office and then I posted it on Facebook and just wrote "Acid Reflux :( " on the post. I got about 20 responses from parents who had had to endure infant reflux. Max was miserable. It sucked. That night JNFuture (our young leadership group at JNF) had their Hanukkah party at the Comedy Store and it was one of the first outings without Max that Ted and I went on after Max was born. We came home and never went to sleep that night. My dad's family came over the next night to celebrate Hanukkah with us and Ted and I must have looked like the living dead. We definitely felt like it. Max spent the next 3 days and nights wailing all day and all night long. On day 2, I joined him. We both just cried and cried. I remember my step mother calling one day and I just cried through the whole conversation. There was nothing to do really until I could get to his pediatrician. Our friend Missy had suggested at the JNFuture party that we ask for Zantac, which her little boy was on when he had infant reflux. I asked for it. The crying stopped. (The pediatrician wasn't going to give it to me but I sort of insisted). I also stopped eating dairy for about 5-6 months because several mommies had suggested that a dairy intolerance might be causing the reflux. During that time, Ted and I discovered the joys of overpriced Almond ice milk "ice cream", which was actually delicious. I also ate a lot of imitation sour cream and cream cheese and put almond milk in my cereal and coffee. Yum. This was the one real rough patch we had with Max. I had acid reflux in my third trimester with Max. It sucked. Bad. It broke my heart thinking about his teeny tiny little body and him having to deal with acid shooting up his teeny tiny little esophagus. Poor baby. The medicine did the trick though. After about a day of the Zantac and every day after that, we had a very happy baby.
Cautious
Sunday, November 20, 2011
I am overly cautious. I don't like to be at home with the doors unlocked...even in the middle of the day. I don't like leaving the dogs in the car while I run a quick errand, even with the windows rolled down and parked in the shade (they are so pretty, I don't want to tempt the dog nappers). I like to follow rules. If I am told that I need to process things at work in a certain way, I don't like to be told that there are exceptions. I don't like cutting in line. I get nervous asking people on the airplane to switch seats. I like to be on time, so much so that people make fun of me. I once showed up at my friend Molly's birthday party a week early. If I have ever been late with you, it has been a fluke. Lateness makes me crazy. When I was pregnant with Max, I read every book you could get your hands on. I made sure not to eat things that I was not supposed to eat. People said it was ok to drink wine, I think I had about 4 glasses throughout the pregnancy and felt weird and guilty each time. I took my vitamins every single day. I started looking at daycares in my second trimester. When Max was born, I watched all of the videos about Happiest Babies on the Planet and Sign Language and Making Music with Baby and Baby Massage. I even watched a video about how to give a baby a bath. That was where I learned to keep a warm washcloth on Max's chest so he wouldn't get chilly. I teased my daycare that I stalked them during my maternity leave...but it wasn't really a joke. I googled them, I called the licensing facilities, I strolled Max by the house nearly every single day. I read Baby 911 for leisure. I wasn't even looking up potential issues or questions. I was reading it like a book, chapter by chapter and then going back to read it again. I worried that someone might forget that frozen breastmilk should be warmed in a bowl of warm water and should never be put in the microwave because of the hotspots that could burn a baby's mouth. I worried that Max's room might get too warm or cold and checked the temperature obsessively. I am the one who brought up Max's plagiocephaly (flat head) with my pediatrician, not the other way around. I lingered when I dropped Max off at daycare and I lingered when I picked him up.
I let my guard down. How could I possibly be next to him every single minute of every single day? How could I and yet, I can't imagine how I could ever leave another baby's side again. How will I go to the bathroom let alone go to sleep? I failed my baby by not being there watch over him. In what kind of a world do we go through a whole lifetime of planning for children, carrying this baby for 9 months, paying attention to everything we consume for the best possible outcome, birth the baby (no easy feat), breastfeed, care for, love, adore, kiss, be all-consumed with...and then just hand our own flesh and blood off to another person? I mean, I know where we do this...here. We all do it. I should have been with my boy and I am not saying that I know what would have happened if he was with me that day. In my gut, I feel he would be here with us today. I am not blaming anyone but myself. I failed my little baby. I failed our greatest love. I should have been with him. All of those years of caution just thrown to the wind, like anything that I ever worried about before Max ever mattered. None of it did.
I let my guard down. How could I possibly be next to him every single minute of every single day? How could I and yet, I can't imagine how I could ever leave another baby's side again. How will I go to the bathroom let alone go to sleep? I failed my baby by not being there watch over him. In what kind of a world do we go through a whole lifetime of planning for children, carrying this baby for 9 months, paying attention to everything we consume for the best possible outcome, birth the baby (no easy feat), breastfeed, care for, love, adore, kiss, be all-consumed with...and then just hand our own flesh and blood off to another person? I mean, I know where we do this...here. We all do it. I should have been with my boy and I am not saying that I know what would have happened if he was with me that day. In my gut, I feel he would be here with us today. I am not blaming anyone but myself. I failed my little baby. I failed our greatest love. I should have been with him. All of those years of caution just thrown to the wind, like anything that I ever worried about before Max ever mattered. None of it did.
Don't give me what I can handle because I cannot handle it!
Saturday, November 19, 2011
Someone gave me a copy of the book "When Bad Things Happen to Good People" at Max's shiva. I was so mad at g-d, I was really interested to read what possible explanation there could be for what happened to Max, the BEST of the "good people". I read a few pages and realized quickly that this book was going to let g-d off the hook! Rabbi Harold Kushner wrote the book to ensure that we don't blame g-d. The whole premise of the book was to say that the bad things that happen, don't happen because of g-d, but in spite of g-d. Sorry. That is a hard pill for me to swallow. I have got a lot of blame for g-d. (Notice, I am back to writing his name in the Jewish way. I am a flip flopper). No way was I going to read that book! Absolutely not. For some reason, this happened to Max and Ted and I and not to some asshole. In fact, when I meet the mothers (only because I haven't met any SIDS fathers yet) or read the blogs of parents whose children have died, I am astounded to find that the second thing we all have in common is how devoted we all were as parents....even Rabbi Kushner! It is as if the good people are at a higher risk than the crack heads. WTF G-D????!!!! I just had coffee with my neighbor Melissa, whose daughter died of SIDS. She is the most lovely person you could ever hope to meet. She is sweet, a devoted wife, smart, a totally devoted mother.....she is a wonderful person. Need I remind anyone that she GAVE ME HER JOURNAL!? Most people cannot say, "I am so sorry about Max". Hell, most people cannot say "Max". But this woman gave me her journal. Granted, she has suffered my loss so she doesn't have to feel weird around me. But, that is BEYOND the call of duty - as there is no actual call of duty. Just because you have lost a child doesn't actually mean that you have to reach out to other people who have. So, why Melissa? Why her daughter Marley? Why the Spohrs? Why me? Why Ted? Why Maxie? Sorry, I am still mad at g-d. At Max's shiva, a few people (of course) let me know that "G-d doesn't give you anything that you can't handle". What an asinine thing to say to a grieving parent. If you learn nothing else from this blog, please learn that you should never say that to anyone. Even if there is a small percentage of people who actually feel better hearing this, most people DO NOT want to hear this and so you will be better off just saying, "I am so sorry about Max (or whoever you are sorry about)". Did Max die because G-d decided that Ted and I were SO strong? F*@# that! Seriously? Another blogging mom posted a photo of an art piece she found that said "God doesn't give us what we can handle. God helps us to handle what we are given". As a response to the stupidest platitude known to a griever (aka - g-d only gives you what you can handle), I like this. But, as the premise of a book (When Bad Things Happen to Good People), I do not. G-d should know better than to end the lives of BABIES! He/She is G-D afterall! Perhaps I could buy the whole argument of G-d putting us on earth and giving us free will and that when we are evil or neglectful or bad to our own bodies that there might be murders or injuries or diseases that result. It doesn't make it right, but at least I could rationalize it. But, when a perfectly decent and GOOD person becomes ill with disease or dies instantly - What The F*@#!? I have a beautiful cousin with a devoted husband, and a little boy who died after fighting a long battle with cancer several years ago. She was funny and warm and smart and a mother! I do not let g-d off the hook! I have two relatives with cancer right now - they are mothers, they have both lost too much already (a twin and a husband), they are important and wonderful and necessary on this earth! I do not let g-d off the hook for them either. I was hoping to find some meaning, as all grievers hope to find. And, I suppose it is my own fault for not fully giving myself to religion early in life. If I just BELIEVED, then I could find comfort in g-d. But, I can't even tell you if Judaism believes in an afterlife. I really don't think Jews believe in heaven. And, if they do, they don't talk about it like the Christians do. If you are Christian then you believe that you just do good on earth and then you go to heaven. If you are Jewish, you believe that you do good, not because you will be rewarded but because doing good is the RIGHT thing to do. Maybe we need some more bribes. When the sky falls in on you, it is hard not to get a little selfish and wonder (or at least I am wondering), "why the hell did I focus on doing good? where the hell did this get me?". And, I am not saying I am a "good" person. But, what I can confidently say is that I have DONE GOOD. I have campaigned for affordable housing, senior care, equal rights, I have catalogued the testimonies of Holocaust survivors, I have spent countless hours volunteering on numerous projects, I give money to many charities every year (supporting Israel, supporting water projects in Africa, supporting children, supporting gorillas, supporting public radio, supporting cancer research, supporting wildlife.....), I spent two years organizing, educating and raising awareness around the genocide in Darfur (and so I KNOW that g-d is unjust because these people have been murdered and raped for living in rural villages and minding their own business). Again, it isn't that I think I am a saint (you can go back and read about all of the stupid and "bad" stuff I have done as well in one of my original posts....and it isn't even a complete listing), but I have done good. I have done right by my Jewish faith. Can someone please tell me what it is that I am missing? What I always loved about Judaism is that we weren't doing good just to be rewarded. It wasn't about earning the prize. Judaism seemed like a model for the way I would want to raise my children - to be good people, not so that they could earn a piece of candy or a toy, but so that they would feel good about themselves that they were doing good. But, as a parent I certainly would never kick my kid in the face after they did a good deed. (Obviously, I wouldn't kick my kid if they did a bad thing either but I am using the example for emphasis). Why did g-d choose to kick us in the face? If you know the story of Job in the Old Testament, you know that we are taught that G-d does sometimes kick a good person in the face. In fact Job was the best of the best and G-d took everything from him (including his wife and children) on a bet. It has been four months today since Max stopped breathing at day care. I have no more answers today than I did four months ago. It is still very early in the grieving process for us (especially considering it is a life long process). I often think that my days of being good might be over. I have been trying to convince Ted that we should rob a bank. I mean, why the hell not really? Upside - we get a whole bunch of money. Downside - we go to prison or get shot. Seems like now is the time to take this risk. If not a bank, then maybe a convenient store or something. Yes? No? Thoughts? I know what you are thinking because I am thinking it too. A person who might be prone to panic attacks may not be the best candidate for a new career as a bank robber. I'll see if I can get those under control first and then come back to this plan. In the meantime, I am looking for some answers over here and not getting much. If you think you can help a sister out, I am all ears.
Ramblings of a grieving brain
Friday, November 18, 2011
The only way that I can "distract" myself is by reading. The books I read seem to fall into one of two categories: Grief and Loss (specifically of babies and children) or Afterlife and Reincarnation. I tried to get started on a "No. #1 Ladies Detective Agency" book that my mom read recently and enjoyed. I made it through about half of the first chapter and couldn't continue. Cute and upbeat isn't for me. I like my books dark and broody. I am currently juggling two books: "Healing through dark emotions"and "The Tibetan book of living and dying". The first book is written by a woman who lost a child. She had a stillbirth. I have started several books that are specifically written for woman who have experienced miscarriage, stillbirth and infant loss. Here is the thing though, every single one of them focuses on how sad it is NOT to bring your baby home from the hospital and to never be able to bond with the baby outside of the womb. When I am "lucky", there is a sentence or two about SIDS. I guess it is THAT rare. This is not my experience. It just isn't. It isn't the same. Many people have suggested that I join a grief group and they would be right in thinking that would be the right place for me. I feel completely alone. I long to befriend women who have had my experience. In my loneliness, I have thought about rejoining my book club or hanging out with my girlfriends but knowing that the bookclub conversation always turns to children and that my girlfriends leave me to go pick their kids up is heartbreaking. The thing is, the grief groups categorize your loss. I fall into the groups that are for women who have experienced miscarriage, stillbirth and infant loss. In the groups I have called, the leader can usually name the one woman who experienced infant loss who sometimes shows up. The people who have lost children over one year don't believe that my experience validates my being in their group.....the one for people who lost children. Now, listen, I understand that miscarriage and stillbirth must be agonizing. I can't even imagine that the stillbirth women feel like they can entirely relate to the miscarriage women. It is all devastating, it just isn't the same. And, ya, I had a miscarriage, but it was early and in comparison to what I have been through, it was more like a setback. Sorry. That is how it felt. I was reading the blog of another SIDS mother who said that after her baby died, she had two miscarriages and that people kept wanting to talk to her about the miscarriages but nobody would mention her beautiful baby that died. It doesn't surprise me at all. If I had just had the miscarriage, I might want to talk about it too but, as my experience goes, it was just sort of a bummer that added some insult to my deep and painful injury. I wonder if this is how the parents of children who have lost children over the age of 1 view our loss. Maybe that is why they won't let me in their group. I think the other thing that keeps me away from "my" group is that I am scared. I am not scared talking to people who have lost born children, because I have done that. I am scared talking to people with pregnancy complications because I want more children. But I still long for friends who understand me. Sometimes I think that I won't be able to reemerge from my hidden life until I have another child so that my friends can comfortably talk about their children in front of me again. I pray that when I have another child, I will be able to listen and relate again. I told Ted the other night that I wish there was someplace we could move where there were no children. The only place I can come up with is Club Med for adults, but who wants to hang out with a bunch of horny, drunk singles when they are grieving? Plus, Ted pointed out that even if such a place existed, why would we move there if we want more kids? I'd like to live there and eventually be the only people with kids. Then, I wouldn't have to run into kids that are the age Max WOULD be IF he had lived. I wouldn't have to answer questions about how many children I have (because, for the most part, people without kids don't ask. I never thought to before I had Max). I wouldn't have to worry about getting sad every time I heard a mother say, "oh, he is my second child" after doing something neglectful. Every which way I look at it, the best solution seems to be to hide in this house forever. Perhaps I will home school and order groceries online so I don't have to ever have to leave. It's insane really but the truth is that I don't want to have to be strong. I have been strong for many things before in my life and I just don't want to have to be strong for this. My brain is about to explode so I'll stop.
Discovering Maxie
Thursday, November 17, 2011
In March 2010, I was trying to lose some weight. I had gained only about 7 pounds but I don't know where they came from and I couldn't get rid of them. Talking with someone one day, it was suggested that perhaps I was pregnant. No way! We hadn't been trying very long at all. Really, only about a month. Still, I thought, better to be safe. So, I stopped at the pharmacy next to my gym after work. Funny, the pharmacy was in West Hollywood and the pregnancy test I bought was literally the only pregnancy test in the place. Anyway, that weekend Ted was out of town, on a ski trip in Colorado with friends and I was staying with my mom. I came home and took the test and it was positive. Unbelievable! I didn't feel pregnant. Whatever that felt like. I lasted until the next morning before I told my mother but decided to wait until Ted and I were together to tell him in person. I started to plan it out. At first I thought maybe I would just leave the pregnancy test out for him to see, and then he would probably look at it and say something like, "Is this what I think it is?" and I would say, "Yes, we are pregnant!" and we would cry out of joy and fall into each others arms. Or, maybe I would sit him down and say, "I have some wonderful news!". I really didn't know what to do but I had 3 whole days to think about it. Every time we spoke that weekend, my heart was pounding out of my chest. This was the best news in the world and I was dying to tell him. So, finally, the night came that Ted was to return. I wasn't sure exactly what time he would be coming home but it seemed like it was getting really late. Finally he called me from the parking lot at LAX where he had left his car. The battery was dead. Since I am in the one with triple A, I suggested that he use my card number. The customer service person insisted that the card holder be there to show the card, so I jumped in my car and drove out there. The car was jumped and we both headed back. By this time, I had worked myself into such a mess. My whole plan was ruined (now I don't even remember what my plan was). We came into the house and I started crying. "What's wrong", he asked, and I just blurted out, "I am pregnant". Must have been the hormones. I was so emotional. "That is wonderful news", he said, and he came over and sat next to me on the bed and hugged me while I cried. It was just too long to have this secret and not tell him. I will never forget that night because it was the beginning of the next chapter for us. A chapter that we knew would change our lives and that we thought would make life better for the rest of our lives. In fact, Max was the best thing that ever happened in our lives. I don't think either of us would ever trade one minute that we had with him for all of the money in the world. The innocence, the love, the bliss of knowing that we were having a baby and would become a family is something we will never feel again, no matter what happens moving forward. There will always be a huge missing piece. We will always be missing our baby, Maxie.
Grace
Wednesday, November 16, 2011
In the year leading up to Ted and I getting engaged, I have to say, I didn't really know if it was going to happen. I guess he was a typical guy in the sense that he just didn't seem sure of me. I was sure of him, from the beginning. Maybe I had been out with enough people that were wrong for me to know who was right when he finally came along. I knew that if he decided that I wasn't the one for him, getting over it was going to be a LONG road. I tried to think positively but I didn't really get the reassurance from him to know that we would end up together. It made me sad and scared. I remember as we got closer to getting engaged, I had a feeling it was coming but I was still scared. He hadn't really told me outright that he wanted to spend his life with me and so I felt like until I knew for sure, it was anyone's guess. The idea of living without him was more than I could take and I remember crying to him, "I can't live without you" and him saying, "You won't have to." Finally he proposed and it put my mind at ease....mostly.
Last summer when I was pregnant, my mom was diagnosed with breast cancer. It was in the very early stages and she seemed very confident that she would be just fine and we mostly were too. But, I was scared. Scared to death that things wouldn't go well. I needed her help with this baby. I needed her to be by my side for as long as possible. I cried and cried to Ted, "I can't live without her!", I said. Thank g-d, her last radiation treatment was the morning that Max was born and she is healthy. I don't have to live without her.
I never, ever thought for a minute, that I would have to live without Max. It never ever crossed my mind. I can't live without him! It feels like there is no purpose for me now without him. How can I live without my baby? It is too much for me. Sometimes I wish Maxie hadn't been so special. Maybe this would be easier to take. But, in my eyes, he was perfection and so so special. I loved everything about him. So, it isn't like I just lost some baby. I lost Max, the most wonderful person that I know. I am so alone now. And, I know I am still a "mommy" but not really. I don't get to kiss my baby. I don't get to cuddle my baby. I don't get to change his diaper or rock him to sleep or give him a bath. I just look at pictures and talk to the sky. It is agony. I am in so much pain, it is really agony. Each hour is a test. Living without him is my worst nightmare. The next worst part about not having my baby, is how alone I feel. I've never been so alone in my life. Often times I feel more lonely with people than when I am actually alone because very few are comfortable with and/or understand my pain. I guess I express too much.
I have been thinking a lot about whether I could even fake stoicism. Stoic grievers are graceful. They are Jackie Kennedy. They hurt on the inside and that makes them more sympathetic characters than those of us who express. Expressing how you feel is looked down upon. Nobody really wants to see pain. It is hard to be around someone who is full of so much grief, who expresses so much sadness, who can't fake it. I just cannot fake it. I am not sure why. I am just not built that way. Maybe Jackie Kennedy was bored with her husband's antics. Maybe they had grown apart? Maybe she was in a tremendous amount of shock. I am sure I was more stoic in the days immediately following Max's death because of the sheer disbelief and shock running through my system. Who knows how she pulled it off, but this is why I prefer to hide. If you can't see me, you don't have to be annoyed that I am not acting graceful. There are very few people who can handle this raw expression of emotion. If you are this sad, you are borderline suicidal or you should be medicated. We live in a funny world, where when bad things happen to you and you react, you are a crazy person. Unless you can find a way to be graceful, you should probably be medicated and locked away. I am not graceful - I am angry, I am jealous, I am sad, I am devastated and I am lonely. It's hard to find the grace hiding within those emotions. I see the possibility of grace in my future, but it is still too soon. For now, I am just having too much trouble living without him.
Last summer when I was pregnant, my mom was diagnosed with breast cancer. It was in the very early stages and she seemed very confident that she would be just fine and we mostly were too. But, I was scared. Scared to death that things wouldn't go well. I needed her help with this baby. I needed her to be by my side for as long as possible. I cried and cried to Ted, "I can't live without her!", I said. Thank g-d, her last radiation treatment was the morning that Max was born and she is healthy. I don't have to live without her.
I never, ever thought for a minute, that I would have to live without Max. It never ever crossed my mind. I can't live without him! It feels like there is no purpose for me now without him. How can I live without my baby? It is too much for me. Sometimes I wish Maxie hadn't been so special. Maybe this would be easier to take. But, in my eyes, he was perfection and so so special. I loved everything about him. So, it isn't like I just lost some baby. I lost Max, the most wonderful person that I know. I am so alone now. And, I know I am still a "mommy" but not really. I don't get to kiss my baby. I don't get to cuddle my baby. I don't get to change his diaper or rock him to sleep or give him a bath. I just look at pictures and talk to the sky. It is agony. I am in so much pain, it is really agony. Each hour is a test. Living without him is my worst nightmare. The next worst part about not having my baby, is how alone I feel. I've never been so alone in my life. Often times I feel more lonely with people than when I am actually alone because very few are comfortable with and/or understand my pain. I guess I express too much.
I have been thinking a lot about whether I could even fake stoicism. Stoic grievers are graceful. They are Jackie Kennedy. They hurt on the inside and that makes them more sympathetic characters than those of us who express. Expressing how you feel is looked down upon. Nobody really wants to see pain. It is hard to be around someone who is full of so much grief, who expresses so much sadness, who can't fake it. I just cannot fake it. I am not sure why. I am just not built that way. Maybe Jackie Kennedy was bored with her husband's antics. Maybe they had grown apart? Maybe she was in a tremendous amount of shock. I am sure I was more stoic in the days immediately following Max's death because of the sheer disbelief and shock running through my system. Who knows how she pulled it off, but this is why I prefer to hide. If you can't see me, you don't have to be annoyed that I am not acting graceful. There are very few people who can handle this raw expression of emotion. If you are this sad, you are borderline suicidal or you should be medicated. We live in a funny world, where when bad things happen to you and you react, you are a crazy person. Unless you can find a way to be graceful, you should probably be medicated and locked away. I am not graceful - I am angry, I am jealous, I am sad, I am devastated and I am lonely. It's hard to find the grace hiding within those emotions. I see the possibility of grace in my future, but it is still too soon. For now, I am just having too much trouble living without him.
Maxie's physical therapy
Tuesday, November 15, 2011
I've written a little about how Maxie needed a helmet for 6 weeks. His head was a little flat on one side. The doctors thought it was because of the way he was growing inside of me, with his little hand pressed against the side of his head. I am sure that all of the time he spent on his back didn't help either. He did a lot of sleeping in those first few months as babies do. Anyway, in addition to the flat head, he had some stiffness in his neck that needed physical therapy. We had to turn his little head to look over his left shoulder and hold it for 5 seconds 3 times and then stretch his right ear over his right shoulder for the same, 5 times a day. Ooooo, Maxie didn't like it. How would you like someone holding your face to look left with their hand. Neither of us really liked doing it much. We usually did his physical therapy on the changing table and we did find that if we put a really fun light up toy on the table for him to look at, the whole thing was a little easier for us and somewhat fun for him. The occupational therapist we saw had this great Fisher Price snail with a mirror that lit up and played music that Maxie loved. We left our first appointment there and went straight to Toys R Us to get Maxie the same toy. We did physical therapy with Maxie until he could hold up his own head. By then, he had his helmet off, he had a perfectly round little head and no more neck stiffness. We were so proud!
Max always looked right
He loved this little snail toy
This is right after Max was born. The Doctors believe that Max had his hand against his head in my uterus!
The Dream
Monday, November 14, 2011
Most of the time, it feels like my brief 9 and a half months as Maxie's mommy was just a dream. I feel like I am writing about it all in part to prove that it really happened. I wanted to be a mommy forever. I never knew it would be as wonderful as it was. I think that I had only been prepared for the hard parts (which were indeed hard). I knew I would feel abundant love for this child, but I had no idea how that love would transcend any feeling that I had ever had before. There are no words. It is the most pure, deep, and satisfying love there is. I have this terrible waking nightmare about looking back at my life and remembering that I was a mother once, for nine and a half months, to the most beautiful and wonderful child, and that is the end of my motherhood story. Maxie's death cannot be the end of my motherhood story. It just cannot be! I am gripped with fear and I wonder if I could ever love another child as deeply as Max anyway. Even if I only loved another child half as much, it would be a love that would be so consuming and pure. A child who was loved even a quarter as much as I loved Max would never feel anything from me but deep and penetrating adoration. I am assured that parents love all of their children equally. That is very comforting to know. To the rest of the world, it has been not even four months since Max died. For me, it feels like decades. I have aged at least that much.
My little dream baby. Almost too cute to have been real
Grey
Sunday, November 13, 2011
Yesterday was grey and gloomy. I wanted to curl up on the couch with my Max and cuddle the day away. I did the couch part pretty good. I am liking grey and gloomy a whole lot better than all that sunshine that usually resides here. Back to that whole Anderson Cooper theory of "matching your outsides to your insides". I see everything through grey colored glasses. There is no joy anymore. This morning I found two grey hairs framing my face. I have suspected for some time that they were in there. Hiding in the back perhaps. But, now there are just front and center, as they should be really. Let's face it, I am not getting any younger over here.
I wanted to restate that we are seeing a grief counselor that we love. For some reason, people have started asking that again, even though I know that I have said it. Maybe you think we were seeing someone and then stopped? My dad even asked me last week. Our grief counselor comes to our home once a week, which is amazing. She believes that we are exactly where we should be. When I tell her that I cannot get off the couch, she answers "how could you?". She has a lot of faith in us and our process. Ted and I both look forward to our sessions with her. We feel very strongly that she is on our team. We believe that she wants to see us succeed and will support our path to "recovering" from this tragedy.
Also, I have been hearing a lot of, "People don't know what to say to you." So, I thought that maybe I should just remind you what you can say to me. It's actually probably just helpful to know what to say to anyone who is experiencing grief, not just us. It is so much better to say something than to just ignore what has happened. It is so much better to just say, "I am so sorry about Max". You don't even have to say anything more than that. "I am so sorry about Max" pretty much covers it. If you are checking in, you could say, "how are you guys doing?" I know it is uncomfortable to acknowledge our grief but chances are, you really ARE sad about what happened to Max and that you really ARE wondering how we are doing. If you aren't interested and don't care, we probably don't really need you in our lives. If you are uncomfortable addressing the sadness we feel, think about how uncomfortable we probably are. I am not going to make you talk about him if you don't want to, but I welcome talking about him if you can handle it. It is ok to talk about Max. He was an innocent, adorable, wonderful little baby boy. It is actually a little weird to me that nobody can say his name. You aren't going to "make me sad" or "remind me" that my baby died. You do not have that much power. I am already sad and I think about it all of the time. It's pretty much all I think about. While you are trying to distract me, I am usually thinking, "this person is trying to distract me. I wish they would mention Max." Also, it has got to be exhausting and awkward for you to work that hard to try and make me forget. A mother will not forget her child. It is just impossible. Doesn't matter how funny or interesting you are, you are attempting the impossible. I actually think it would be a whole lot less painless to just say, "I am so sorry about Max". Again, sadly, I am probably not the last person you will meet who is in excruciating amounts of pain all day and night because of grief. Everyone dies and not everyone does it peacefully at age 90 in their sleep (and by the way, many of you have even recently told me about the intense grief you have felt around your 90 year old mother/father/grandmother/grandfather who passed away in their sleep. Again, just IMAGINE how we feel.) You might even be the one who has to experience the complicated grief, but I sure hope not. Anyway, "I am so sorry about Max." It's pretty easy actually. Maybe if you know you are going to see me, you can just say it to yourself a few times so that it comes more naturally. I promise, it will make everything that comes after that sentence flow a whole lot more naturally and you probably even feel a lot better about the experience too. Go ahead, rip off the band aid. I promise it won't hurt you as much as you think.
I wanted to restate that we are seeing a grief counselor that we love. For some reason, people have started asking that again, even though I know that I have said it. Maybe you think we were seeing someone and then stopped? My dad even asked me last week. Our grief counselor comes to our home once a week, which is amazing. She believes that we are exactly where we should be. When I tell her that I cannot get off the couch, she answers "how could you?". She has a lot of faith in us and our process. Ted and I both look forward to our sessions with her. We feel very strongly that she is on our team. We believe that she wants to see us succeed and will support our path to "recovering" from this tragedy.
Also, I have been hearing a lot of, "People don't know what to say to you." So, I thought that maybe I should just remind you what you can say to me. It's actually probably just helpful to know what to say to anyone who is experiencing grief, not just us. It is so much better to say something than to just ignore what has happened. It is so much better to just say, "I am so sorry about Max". You don't even have to say anything more than that. "I am so sorry about Max" pretty much covers it. If you are checking in, you could say, "how are you guys doing?" I know it is uncomfortable to acknowledge our grief but chances are, you really ARE sad about what happened to Max and that you really ARE wondering how we are doing. If you aren't interested and don't care, we probably don't really need you in our lives. If you are uncomfortable addressing the sadness we feel, think about how uncomfortable we probably are. I am not going to make you talk about him if you don't want to, but I welcome talking about him if you can handle it. It is ok to talk about Max. He was an innocent, adorable, wonderful little baby boy. It is actually a little weird to me that nobody can say his name. You aren't going to "make me sad" or "remind me" that my baby died. You do not have that much power. I am already sad and I think about it all of the time. It's pretty much all I think about. While you are trying to distract me, I am usually thinking, "this person is trying to distract me. I wish they would mention Max." Also, it has got to be exhausting and awkward for you to work that hard to try and make me forget. A mother will not forget her child. It is just impossible. Doesn't matter how funny or interesting you are, you are attempting the impossible. I actually think it would be a whole lot less painless to just say, "I am so sorry about Max". Again, sadly, I am probably not the last person you will meet who is in excruciating amounts of pain all day and night because of grief. Everyone dies and not everyone does it peacefully at age 90 in their sleep (and by the way, many of you have even recently told me about the intense grief you have felt around your 90 year old mother/father/grandmother/grandfather who passed away in their sleep. Again, just IMAGINE how we feel.) You might even be the one who has to experience the complicated grief, but I sure hope not. Anyway, "I am so sorry about Max." It's pretty easy actually. Maybe if you know you are going to see me, you can just say it to yourself a few times so that it comes more naturally. I promise, it will make everything that comes after that sentence flow a whole lot more naturally and you probably even feel a lot better about the experience too. Go ahead, rip off the band aid. I promise it won't hurt you as much as you think.
Crawling
Saturday, November 12, 2011
If Max had lived two more days, I am sure he would be crawling. He was ALMOST there. He could get himself on all fours easily. He just needed to get somewhere. He could move forward about two hands worth but then, SPLAT. But, then right up again with a big smile. I was preparing to baby proof the house the coming weekend in anticipation of the mayhem to come. Oh my gosh! I couldn't wait to see that kid GO! He had so much energy and surely lots to explore. You can see for yourself....he was ALMOST there! Just a few more days is all it would have taken.
11.11.11
Friday, November 11, 2011
You must know by now that we are into numbers. According to some of the more spiritual people I have gotten to know lately, today is perfect day in time to manifest all of your desires. The thing is, the only thing I want, I cannot manifest. It is impossible. The only thing I want is Max. I have been thinking so much about wanting. Everyone wants to have a better job. We want to have a nicer house, one with a swimming pool. We want nicer clothes. We want more money for sure. We want, we want, we want. Some people have so much and yet they still want. If nothing else, I have learned this - nothing matters at all except the health and happiness of the ones we love. I do not live in a big house (it is cute and suits us well). I do not have fancy clothes (STILL rocking my maternity hand me downs and my pre-maternity gear wasn't much better). We do not have a lot of money. We were happy because we had each other and Max and loving family and friends. That is all you need. If you can't afford the house you are living in, sell it and move into a nice apartment with your healthy family. It isn't the end of the world. It isn't even about falling in love and having children...although that is an added layer of loveliness. It is about loving who you have in the moment because they may not be here tomorrow. Being in the moment is so important and one thing that I do not regret is that I was always in the moment when I was with Max. I am sure it had a lot to do with being a working mom and cherishing every minute that I had with him. But, I never felt the need to busy myself with anything other than being with Max and I am so grateful for that. I know, I know. I am a walking cliche and kind of preachy too (really, what happened to old Abby) but all of the material stuff in the world is so meaningless AND, the wealthiest people I know are some of the most unhappy, grumpiest people I know as well (I am sure they know it too). What we have lost was THE most important thing in our lives. There is nothing I could wish for that would make any kind of difference at all. If I stumbled upon that genie who would grant me my greatest desire, I would have nothing to ask for, unless he could bring back the dead. I am down in the dumps. I've been having a hard time reconnecting to Maxie's spirit since we returned to LA. Missing Maxie today as every day. Maxie Moo, where are you?
Too hard to understand
Thursday, November 10, 2011
Once again, I feel the need to try and explain myself. I know that it is SO hard to imagine being in our shoes. I know that it is. Every day is incredibly hard. I will say this, I get a strange mix of responses but equal amounts of "I am not sure I could go on living if I were you"s and "You sound borderline suicidal. Are you seeking professional help?"s. So, you aren't sure how I go on without killing myself and at the same time you seem to be incredibly worried that I might kill myself. Which is it? I am not going to do it. I have mentioned so many times about the other parents who have told me that they felt JUST LIKE I DO. One woman who lost an adult child told me that for the first year after the death, she thought about sticking her head in the oven every time she cooked dinner. She didn't really do it. Another woman (who I mentioned in my comment to the Anonymous comment on the "Still here" post.....a "different", nicer anonymous) told me that every time she got on the highway, she sort of hoped that a truck would topple her car over the side. Then, just now, I remembered reading something the Daddy on my favorite blog wrote soon after his daughter died. Since he put it in the public sphere, I don't feel bad posting a link to it. : http://thespohrsaremultiplying.com/mike/from-mike/. Rest assured, this man is still alive. He has another daughter that he is nuts about and still manages to be completely grief stricken when it comes to his first born. His post today had me in tears from the moment I woke up: http://thespohrsaremultiplying.com/mike/to-maddie-on-her-fourth/. It also explains how sad it is to contemplate the rest of his life without her. Tomorrow, the 11th would have been her fourth birthday. I think if you read what he wrote and also some of the comments below from other bereaved parents, you will understand that we all feel this way. Frankly, I cannot imagine that a parent could lose a child and on some level not want to die. It is THAT tragic. In fact, wasn't our whole country riveted this past summer over that woman, Casey Anthony, who we all thought murdered her daughter simply because she didn't act appropriately after her daughter died. I suspect something was amiss for sure, because it is simply impossible for a bereaved parent to imagine living a whole life without their child. So, while I am promoting the daylights out of the Spohr family, their beautiful daughter, and their blog/cause/life (they don't know me from Adam), I will tell you about the lovely thing that they are doing in memory and honor of their daughter's fourth birthday. They wrote and produced a song that they are selling for 99 cents on iTunes and Amazon to support their charity called "Friends of Maddie", which supports families in the NICU. Having spent almost three days in the PICU and walking away with a mad case of PTSD, I can tell you this is a wonderful cause. Anyway, the information is here: http://thespohrsaremultiplying.com/friends-of-maddie/you-are-the-one/. It is a sweet song and to help for only 99 cents feels pretty good. Their song was number 4 on the Amazon singer and songwriter top hits on Tuesday. Not bad.
Barefoot
My Maxie liked to go barefoot, just like his Daddy. I never once put a pair of shoes on him. Not once (sorry if you gave us any shoes...hopefully they will get used eventually). We got loads of socks as presents for Max when he was born. The cutest little socks you ever saw. I had a perfect pair of matching socks for every single outfit I put Max in. And for the first three months, he always had a pair. And, then, I started noticing that everywhere I showed up with Max, he'd only be wearing one sock. There were lonely socks all over the back seat of the car. It was his first trick really, pulling off the socks. He just didn't like them. I'm not sure why I still think it is so funny for a teeny tiny baby to have such a distinct dislike of socks. I tried for months, didn't want his little toesies to get cold, until I finally just gave up. At least 30 pairs of socks that were never used. My kid liked his feet free! All the better to kiss them anyway.
East Coast Highlights
Wednesday, November 9, 2011
Traveling to the East Coast was hard for me, in large part because I haven't left the house for more than a couple of hours in almost four months. It was also hard because the last time we were there, we were there with Max. Anyway, while it was very emotional, I wanted to mention some really nice things. Our niece, Sadie, seems to love us just as much as ever, even without Max. She showers attention on both of us whenever we are around her, calling out our names, An Abby (Aunt Abby) and Unko Teddy (Uncle Teddy) constantly. We love it. We got to spend time with Ted's family, which was so important. We stayed at Auntie Beth's house, even though she stayed in Brooklyn the night before the Marathon and a few of Teddy's friends came over, which was so nice. How hard it must have been for them to see Ted and I in such a sad state. They asked lots of questions about how our lives are now, about Maxie, about my medium friend. They didn't ignore the elephant in the room. They got into it with us, even cried with us, and I so appreciated it. Since Max died, it is hard for me to just make small talk. I want to talk about the most important thing in our lives - MAX. Chris Barry's wife, Jodi, made us a wonderful photo album for our photos of Maxie. It is so creative and shows so much love. After my panic attack, we drove straight to Carmen's apartment in Manhattan and she greeted us outside and helped me walk into the building and up to her place. I was not in good shape. I was extra slow and couldn't breathe easily yet. She let me lean on her and even made me laugh a little. She had all sorts of snacks and drinks for us when we got up there. If you know her, you know she is a wonderful hostess. She stayed with me in the apartment while I laid on an aero mattress on the floor, crying on and off for hours instead of watching the marathon, which I now know is one of her favorite NYC things to do (watching the Marathon, not watching me cry). When we went to the bar, there were so many friends and family members there to greet us and celebrate Beth. I appreciated so much how so many of them came to talk to me about Max, about who he was, and about what they can do to help keep his spirit alive. My birthday was not happy, but Beth and Carmen had me laughing a lot of that morning. They are both so funny and it was actually so nice to see both of them so happy. They are in good places and they both look beautiful and happy and that made me feel good. That night, we went downtown to Mario Batali's restaurant Babbo, where our friend Josh Laurano is a chef. He came in on a night he doesn't work to make our dinner. It was incredible. There were many courses, all paired with perfect wines. Josh came out of the kitchen and described each course to us as it arrived. We felt so special. It was amazing. I used to love playing the last supper game with friends. You know? What would you order if you were on death row for your last meal? Mine has been KFC for a few years standing. I know it is way gross, but that is why I never eat it and frankly, I love it. I have changed my order (so you know). It is now Raviolo with ricotta and duck egg inside with shaved truffle on top. AMAZING! He picked out each dish for us special. Then, when the check arrived, the whole dinner was a gift from our friend Jeff Shepro. We definitely over ate. We were uncomfortable in the cab. I wish I had worn a looser waisted outfit to dinner. We rolled up to Carmen's apartment and passed out. The next morning, Gigi drove all the way back into Manhattan to pick us up and take us to the airport. I have put my focus on the bad and hard but I wanted you to know that there was a lot of nice and good too. Below is a photo of one of the five desserts that we received AFTER a sherbert course! Also a photo from Carmen's balcony. Nice view!
Still here
You can see by the simple fact that I am writing that our plane did not go down in a fiery blaze as we thought it would. We thought 11-8-11 would be the end...or maybe the sick/sad part of us sort of hoped it would be the end. When I got on the plane, I felt an ounce guilty that I was hoping for the catastrophic ending but there were no babies on our flight (thank the lord) and the woman next to me was reading "When Things Fall Apart", which signals to me that she is also experiencing a heavy period of life and probably would have welcomed the fiery blaze scenario as well. She also had a sad, sad face. It was like looking in a mirror. I was almost tempted to befriend her except, who needs it really? Instead I got to thinking about how much I love Ted. He is so sad and it kills me. I want him to have a happy life and even though it feels impossible, I think it has to be my new life's mission. Maybe I won't get to take care of a baby but I need to take care of Teddy. So far, I have failed miserably but he has taken very good care of me. I am not sure what I would have done lying on the ground in that parking lot, thinking I was dying, if he hadn't be kneeling right over me.
Somehow I thought coming home would bring some peace back into my life but it is excruciating. Though, last night, Ted lit a fire in our bedroom and we watched just a little television and went to sleep at around 8. I woke up at around 8. I needed that sleep!
I want to talk about some of the nice moments that we had on the East Coast but I am just too exhausted right now. I promise to do that though because they were really special and made us feel very loved.
If you haven't received your t-shirt and you ordered it, it's coming. There were a lot of orders that came in in the week before we left and we had to reorder tshirts and then we wanted to try and get them to the folks who would be at the marathon first. I am sorry if you didn't receive it in time but it still means a lot to us to know that you will wear them now....even if it is just to sleep in. Thank you for your support.
Somehow I thought coming home would bring some peace back into my life but it is excruciating. Though, last night, Ted lit a fire in our bedroom and we watched just a little television and went to sleep at around 8. I woke up at around 8. I needed that sleep!
I want to talk about some of the nice moments that we had on the East Coast but I am just too exhausted right now. I promise to do that though because they were really special and made us feel very loved.
If you haven't received your t-shirt and you ordered it, it's coming. There were a lot of orders that came in in the week before we left and we had to reorder tshirts and then we wanted to try and get them to the folks who would be at the marathon first. I am sorry if you didn't receive it in time but it still means a lot to us to know that you will wear them now....even if it is just to sleep in. Thank you for your support.
11-8-11
Tuesday, November 8, 2011
Ted and I got married on 9-6-9 and Maxie was born on 10-7-10, so we definitely thought something big would happen on 11-8-11. We are flying home today. I need to be home so bad, where I can feel Maxie's spirit. I haven't felt him in so long. I continue to be astounded by how much worse this feels every day. I hate life without him. I don't recognize myself. I am fat and unattractive and wear the saddest face. I also decided to go brunette and the woman who cut my hair gave me a Rachel from Friends haircut, circa 1995. So, the few times I have tried to look presentable, I have had to struggle with my hair to keep it from turning me into a complete laughing stock. I am uncomfortable in my own skin. I want to thank those people this weekend who made a special effort to make me feel more comfortable in my skin. Who were t afraid to acknowledge our pain, who spoke about Maxie and asked questions about who he was. I know it is hard for you to talk about him. I know you think if you mention him, I will cry. If you don't mention him, I go home and cry harder. But, I do get it, it's hard for you.. And that is ok. Those of you who made a point to say something, helped me feel more significant, which is not something I feel anymore. I am not a mother, I am not pretty, I am not thin, I am not functional, I can't control my own body. This weekend was hard. Thanks to those of you who made it a little easier. Let's see if 11-8-11 ends up being anything big.
38
Monday, November 7, 2011
Today I turn 38 years old. What I wouldn't give to go back in time. I have never been one to worry about getting older. I have always felt exactly the same. This year is different. I am older. Much older than a 38 year old woman. Much more aware of all of the good and bad that life has to offer. All I have now are memories of what my life was. It was a lovely 37 years. Now it is up to me to decide what the next part of my life (whether a day or another 37 years) will look like. They say you are the master of your own destiny. That is not exactly true, but I have to decide how I will move forward. What I do know is that it is up to Ted and I to make sure that Maxie's life continues to be remembered and have meaning. If nothing else, I know that will keep me going.
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