Ted and I met yesterday afternoon at UCLA to see the geneticist that we are working with. For whatever reason, I pictured us meeting in a research laboratory or an office setting. I was not prepared to have to check in to a CROWDED pediatric wing crawling with babies and children. There were cries and laughter and squeals and so much kid noise. Ted met me in line just a few minutes after I got there. He was as surprised as I was. We moved into the waiting room after the we checked in and without speaking, we both just stood facing a wall. It was too much to face everything happening in that room. I can't even tell you how long we waited, maybe 20 minutes, but we both felt traumatized. The noise and energy seemed to be getting louder and more frantic as the minutes ticked by and I felt myself go back to my loss with force. I felt the grief wash over me: that Max wasn't with us, that Max will never be with us again, that Max is gone, that we are here to try to figure out what happened to Max, that we are trying as best to can to ensure the safety of Baby M. I was somewhat hysterical. Ted had his hand on my back and he was gritting his teeth. He looked at me and said, "I'm sorry I can't help you. I just need to get through this." Just standing next to him helps me though. What else can he really do? He can't bring Max back. Nobody can. It's a nightmare.
Finally they brought us back, checked my weight and blood pressure (still not sure why) and then put us in a room to wait for the Doctor. When he came in and found me crying, he seemed confused. "Is everything ok?", he asked. "Your waiting room was sort of traumatizing for us", Ted said. "Why? Is something going on out there?", he asked. "Our son died", I said. I point out the obvious at least once a day when interacting with other human beings. It never gets old. "Oh, right. I can see how that could be hard", he said. Anyway, he really is a nice man. We got into the discussion. I won't bore you with the details but we went through every scenario of doing the genetic tests. These are a few of the various scenarios: We find out Max had a metabolic fatty acid deoxidation disorder that was passed on by recessive genes. We test Baby M for the disorder and find out he doesn't have it (great, even though Max is dead). We test Baby M for the disorder (which is treatable) and he does have it so we treat it (most likely by feeding every 2 hours for the first 6 months of life and then gradually less but never fully off of a feeding schedule for life).....(ok, but Max is still dead and maybe this would have saved him). We test Baby M and find out he has the disorder and there is not treatment so we just love him for however long he is with us and ensure his happiness and comfort. (Terrible - "drive me over the edge" possibility). We find out Max's disorder was passed on by dominant genes (Terrible). We don't find an answer at all (Stressful). We find out that it is some other kind of disease for which there is treatment (ok - but Max is still dead and we never treated him). We find out that it is some other kind of disease for which there is no treatment. (See: Terrible). I am working hard not to think about all of these possibilities but that is not possible while sitting in the geneticists office making a decision about whether or not to move ahead with a $6500 genetics test. The choice was obvious to us. That is what credit cards are for, right? We went downstairs and had our blood drawn.
This experience would have been enough (Daiyenu - my Jewish friends) but we had another appointment on our calendars yesterday as well. Ted and I went to a meeting for parents who have lost babies. I have been looking for a meeting like this since we lost Max. I found this one so round-aboutly. My cousin Leslie's boyfriend has a business partner who lost a child from SIDS, so he and his wife are really involved in the SIDS advocacy community. I contacted Leslie to see if either of them would be willing to speak to me. I guess the wife wasn't feeling well so instead, she passed on a number of resources for me, including a random email about a "new" infant loss group starting up in LA. I got in touch with the organizer and she assured me that most of the people in the room had lost children to SIDS. It sounded like the right fit for us. So, we headed to the Superior Court building in Koreatown yesterday evening for our first meeting. Turns out the group is not new. I asked the woman next to me how she found out about the group and she said that the coroners office sent her the information. Turns out everyone in the room got information about the group from the coroners office. Except us. Not entirely surprising, even though we continue to be in touch with the coroners office...nobody ever told us about the group. The weirdest thing about the meeting yesterday is that there was a film crew from City Councilman Mark Ridley Thomas' office. Apparently, he has taken up the fight for better SIDS and Safe Sleep information and wanted to make a short PSA to post on his website, so we were asked to sign waivers at the beginning of the group. I didn't think much of it but when people started talking, I couldn't help but think about how what they said would be used. Today I am thinking about how they might cut up what I said to make it relevant. Hopefully they won't use me. There were people in the room at various stages of their grief - one woman whose baby died 3 months ago, one woman whose baby died 11 years ago. There was a couple who lost their baby 4 years ago and they have had two subsequent babies. If I didn't know better, I would have thought it just happened....proving to me once again that it doesn't necessarily get easier. The group was supposed to go from 6:30 - 8:30 but ran well over 9pm. By the end, I was itching to get out of there. The last woman who spoke actually re-enacted the scene of her entire last day with her baby. She laid the baby down, she found the baby, she screamed as she did on that day, she dialed her family, then dialed 911, than performed CPR .....pantomiming style. It was a lot to take. The woman next to me commented that every time the re enactor re-enacts, she (the woman next to me) relives finding her own baby and performing CPR and calling 911 and the rest. I am led to believe that this re enactment happens at every meeting - something I need to think about when debating whether or not to keep attending. I know that everyone has their process and I admire their processes but sometimes other people's processes can be hard on me....and I have to look out for me as best as I can. Just like in the last group, this group focused on how lonely this experience is. They talked about needing someone to talk to but knowing they couldn't call friends or family who would try to cheer them up. When you are going through something like this, you want validation. Anyone trying to cheer you up when you are this low is wasting their breath and pushing you away. It's that simple. All week people have been calling me "Strong". It makes me feel weird. I don't want to be strong and I don't feel strong. A woman in the back of the room who lost a twin at birth said it well "I am not strong. I am wearing a Strong Mask". Me too! I am dying inside. DYING. I don't know how I could be any clearer quite honestly.
Yesterday I had an email exchange with one of my best friends that went like this:
HIM - "Mazel Tov! Baby M is great news"
ME - "Thank you. Baby M IS great news, but I am so scared and Ted and I have to do all of the genetics tests and I worry that Baby M won't live and I can't live through another baby dying. And Max is still gone and it is killing me"
HIM - "It will always hurt that Max is gone but Baby M will be a ray of light"
ME- "I keep telling people how scared I am about Baby M. I feel like either I am not making that clear or people are not listening. It is weird....like everything else."
HIM - "You are being crystal clear...I think it's more of the same thing you have faced so often since Maxie died - that people have a much easier time underscoring what is good than acknowledging what is sad or scary or uncertain. I am sure it seems odd when the pain/uncertainty is so obvious in everything you say...it sounds odd - but I realize now more than ever how important it is to acknowledge rather than dismiss the pain of your true friends. I can see now that there is something - maybe not comforting, but honest - about just saying, 'What happened is terrible. And won't ever go away.'"
I recognize I pushed him into saying what I wanted to hear but he articulated it so well - I had to share. What happened IS terrible and no matter what - it won't ever go away. Think about acknowledging the loss of your friends. Think about telling them how sorry you are that it had to happen to them. I promise it will be a much more meaningful interaction and you will help them in ways that making them laugh can never do.
