Looking for your support!

First of all, I want to thank so many of you for writing me after my I posted my letter to "Anonymous".  You confirmed that you too felt this grief after experiencing similar (and sometimes dissimilar) losses, you told me that it was disgusting that I felt like I needed to defend myself, and you agreed that grief is not a nice little package that you can wrap up and put away.  I am in this grief every single day.  I cannot escape.   Not having Max and knowing all of the wonderful things he will miss in this life (including all of the love that I gave him and planned to continue giving him) is excruciating.  While I really value your personal messages to me, I urge you to "go public" and post them to my blog.  I hope that other people will visit my site and know that they should not be afraid to feel exactly how they feel, that what they feel is normal.  Your encouragement means the world to me but don't be afraid to share it.  I think I probably would feel safer posting a comment like the one "anonymous" sent if I knew that there would be some public support as well.  There has been a debate about whether or not "Anonymous" is someone that I know.  I thought that for sure it wasn't but it seems most everyone else thinks it is.  The truth is that I have received personal emails that were also very unsupportive, telling me it is time to move on and wondering why this is so hard for me.  They were a little less mean spirited, probably because the senders were not allowed to remain anonymous.

This brings me to the point of what I wanted to write about today.  You may have seen that I posted the link to The Parental Bereavement Act on my Facebook page.  I also included this article.  (You can click on the links for the information).  I have explained how kind the CEO of my organization has been to me and I cannot explain how difficult going back to work would have been.  I was "encouraged" by some in my organization to return to work a week after the funeral and I put it off.  That next week, Ted was in the hospital for 3 days and I was out of my mind.  I got more "encouraging" phone calls to return to work that following week and I felt that I had no choice.  So, I decided to go in on a Tuesday (I think) and I brought Prima Sharon with me because she happened to still be in town.  I am told that someone advised everyone in my office to treat me "as normal as possible".  So, instead of people coming in and putting an arm around me or saying how sorry they were or treating me like someone whose baby had just died, people greeted me as if I had just come back from a Hawaiian vacation.  I recognize that some people were just awkward and don't know how to act around someone who has experienced such a great loss.  I know that to be especially true for young people, but I got the same strange excited and bizarre cheesy smile from people who I know have lost parents and who have children and grandchildren themselves and had to have had some understanding of how incredibly miserable I was.  Anyway, the experience was unbearable.  I was there for three hours and felt like I was going to throw up the whole time.  My heart was racing, my palms were sweating, my anxiety was through the roof.  I had to get out of there.  I have only been back a few times since and while the gigantic grins are gone, the pain of being there is not.  And, let me be clear: it isn't that work is the problem for me, it is that being anywhere out of my house is the problem right now.  Watching the world spin around me, while people barely acknowledge my suffering, and trying to feign interest in anything at all, is very challenging.  It goes for "fun" things too, like a yoga class or going out to eat.  I felt empowered to go out to sushi with Ted on Friday night and got all dressed up for the first time in a long time (such a change that when Ted came to the door he said, "Well, look who it is!").  We walked into the restaurant and parked at the first table next to the front door was a little snap and go stroller and a baby of about 6 months.  I had the same anxious reaction out to dinner Friday night as I did when I went to my last board meeting.  I thought if I didn't get out, I would drop dead.  Still, I want to mention that for many people, going back to work is the one thing that gets them through this horrific experience.  I know that work is an escape for Teddy and he can mostly turn the grief off while he is there.  I think it partly has to do with a persons personality, partly with their gender, and partly the nature of their work.  For MANY of us, waking up each day, our first thought is, "I can't believe this is my reality" and in my case, "I have to live another day without Max".  For many of us, getting out of bed each day is a challenge.  It has been just over three months since Max died and I am no less sad today that I was three months ago.  In fact, the reality of living each day without him is so much worse than I ever even imagined.

The Parental Bereavement bill recognizes that this is a common experience for parents who have lost a child.  The bill expands the Family and Medical Leave Act to allow grieving parents to take up to 12 weeks without worrying about losing their job.  As you know, 12 weeks later, I am not "cured".  When Max was born, I took all 12 weeks of FMLA time to bond with him.  Many of my colleagues and donors were incredulous that I would take all 12 weeks.  I guess something that they hadn't known about me before is that my family is actually more important to me than my job.  I am not saying that my job isn't important.  What I am saying is that my family comes first.  I have always supervised my staff that way as well.  A crisis in their family or a sick child or husband has always been more important to me than keeping track of the exact in and out time of the people who I supervise.  Work is work, and even when it is incredibly important work, I truly believe that the health and welfare of ourselves and our families is more important.  The 12 weeks that I spent with Max were SO important.  I can't imagine I would have been very productive had I gone back to work earlier anyway.  I would have been exhausted and thinking about him all day.  When I went back, that proved to be the case.  My first week back, I sat in my office and pumped about 8 ounces of breast milk directly into my lap - I forgot to attach the bottles to my pump and closed my eyes because I was exhausted and didn't notice what was happening until I heard the drips.  I then went, with a wet skirt (I tried to mop it up with paper towels), to a luncheon with about 15 members of my Board of Directors and a member of the Israeli Knesset (Parliament).  A week later, I fell asleep at the wheel of my car while driving down Wilshire Blvd to a board meeting.  Bereavement proves to be an even LESS lucid time.  All of my thoughts center around Max.  I cry for hours at a time.  My whole body hurts and my brain feels heavy.  I also have major social anxiety and anxiety in general.  To be frank, I don't know what will happen with me but I am fighting for my life and that is taking up all of my strength.  To give a parent 12 weeks off to bond with their new child is important and I am grateful that I had it.  To give a parent 3 days off (the standard) to grieve their child is inhumane.  I know that nobody can "imagine" the grief, but take it from a griever (and all of the many grievers that support this bill), it is horrific.  Again, you can click here to register your support.

Also, I promised Ted that I would tell you about the "Team Maxie" T-shirts that we are selling to support Beth's marathon run and Maxie's forest.  If you email me by clicking my email address link and tell me what size/s and quantities you would like, we will let you know where you can send your check. In the next couple of days, my friend Suzy might enable her website so that you can pay by paypal there as well.  We have short sleeves, long sleeves and toddler sizes.  (blogger isn't letting me post the pdf of all of the styles and the front but see below for an image of the back and I will figure out how to get the full display up here soon).  All proceeds go to support Maxie's forest.  Thank you so much for your support.


Tamar said...

I just signed the petition. Thank you for letting us know about it. I know that not all the time in the world will ever be enough to grieve over your beloved Maxie. I am so sad that you are in this much pain and realize it is absolutely normal for a mother who has lost her child. I am sorry for some people's reactions, comments or thoughts that profess that you are somehow not where you are supposed to be. I love you.

Bianca said...

Three days off is ridiculous and horrid; spreading the word, signing the petition and hoping that congress listens. xo

Lesley Adams said...

Bravo, Abby, for posting the link. I just signed it. I cannot believe that some people have been crass, rude, and unfeeling. Maxie is in my thoughts daily, and you are incredibly brave.

Kari said...

Dear Abby -

I do not know you well, and have only met you a couple of times, but you, Max and Ted are in my thoughts.

I'd like to share with you a memory of mine. At Amanda and Kyle's wedding I asked to see a picture of Maxie. You showed me a few, and love and pride glowed through your skin as you showed me your handsome little boy. You told me how much you thought he looks like Ted. I saw a LOT of you in him too. Especially the gigantic smile you both shared.

Whenever I read posts that mention people telling you how to feel or what you should be doing, it makes me SO angry for you. I am so sorry that there are such insensitive people out there, and I am even more sorry that you are living through such anguish. This is so unfair. And, it's unfair that in addition to this pain you are feeling every moment, you are also feeling the need to defend it. Remember, the depth of your pain shows the depth of your love. And it is clear, Max is loved by every fiber of your being and in every beat of your heart. He is worthy of such tremendous grief.

All my support,
Kari (Burnzy) Walson

Kimberly Bonheim Birbrower said...

Dear Abby,
I will try to leave more comments when your blog inspires me to do so. Often I read your entries and then sit on my hands because I figure, I don't know you all that well and who am I to rant and rave on your blog.... but since you asked, I would like to say two things. One is, as I get older I become more and more aware that we are a culture that has lost touch with our own hearts. People rarely are able to truly act from the heart - and when presented with a heart breaking situation, they shut down and can't deal. This may explain the stupidity and insensitivity that you've had to deal with these last 3 months. People say and do things because they are afraid to listen to their heart (anxiety? pain of empathy?) and they end up substituting and therefore responding inappropriately. Secondly I just want to say that it infuriates me that you've had to feel the need to justfiy your process to anyone. No one should judge how another person processes something - especially something as horrific and nightmarish and devastating as the experience you are suffering in the loss of your precious Maxie. It is unfair and a waste of whatever energy you are able to muster each day. Please pardon my language but anyone who feels like they have the right to tell you or your family how to deal with your grief should go fuck themselves. When I read some of the comments you've had to endure (DELETE THE PHOTOS?!?! SERIOUSLY?!?!) it makes me want to scream!

Yael Levontin said...

Dear Abby,
"Anonymous" is an idiot! YOU are doing the best that you can and NO ONE - NO ONE has any right in this world to make you feel like you are doing something wrong. I am so sorry that you have to waste any thought or energy on these people.
I always have you and Ted in my prayers.

Anna said...

Dear Abby,

Grief is not a thing that can be measured or timed. It is hard and it is unique to each person. When my father died, the best advice I got was to feel. And that is really hard. Because it is scary. And it takes courage to face those emotions and no one ever gets to tell you how to feel, when to feel or when to stop feeling. No one.

I am so sorry that someone has put out there something that has caused you further hurt.

You and Ted and your family are all finding their path through this very painful tragedy. I applaud you for your courage and for sharing what are the true emotions of grieving so that you can help other people not feel so alone.

Anyone who thinks that what you are living is an anomaly has not ever experienced a loss so profound. I can't imagine what it must be like for a parent to lose their baby.

Thank you for sharing the link, your feelings, memories and the love for your Maxie.