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.