The original wound was reopened when we learned of the potential that Maxie's death might have been caused by an inheritable gene. The scabs that had started (barely) to form, were torn from our flesh and we began to bleed all over again. I began to bleed profusely. The trauma too much to contain. The responsibility for Baby M's life too much to bear. With each new stupid email exchange and each new fork in the road, I have felt this life that I have been working so hard to contain, start to spiral out of control. There is nothing that I hate more than a lack of control. It is why when you and I make plans, I am usually early. It is why I won't go to the grocery story without a list. Why I don't pack for a vacation without planning out each outfit ahead of time. I don't go into a meeting without a plan. I don't wait for life to unfold, I long to be the creator of my heart's greatest desires. I never just dated someone who I felt lukewarm about, hoping for my feelings to turn around. This control freak in me has served me well in most cases - I am ambitious, I find mistakes before they happen, Maxie almost never showed up without the proper clothes, food, diapers, medications. I get bills paid on time. I meet deadlines. I am convinced that I am pregnant today because I religiously used my fertility monitor because there was NO WAY I was going to miss an opportunity to bring happiness back into our lives.
I had an epiphany two days ago though, that I hope to hold on to - that I hope will serve me again, as it did once before. I need to let go. If I don't surrender, I will probably go insane....literally. I have come up with plans and back up plans for what happens in the every case scenario of our lives. I have spent HOURS researching SIDS, frequency of multiple SIDS cases in families, fatty liver + SIDS connections, metabolic diseases. I have written long emails to the geneticist (I am SURE he loves me) with links to scholarly articles citing fatty liver issues in infants and potential risks and remedies. Here is what I realized - infants have been dying since the beginning of time. In fact, next week starts Passover (previously my favorite holiday, but another one I won't be celebrating this year), where we recount as part of the story that all of the first-born Jewish sons of Egypt were taken by the angel of death. How close Moses also came to dying as an infant...I have wondered often how his little reed canoe didn't tip over into that polluted Nile River water before he was found by the Pharoah's daughter. But, back to my point, babies have died inexplicably since forever. Their parents mourned and wept and were never the same. Those same parents, in the absence of autopsy reports, just crossed their fingers and had more children - praying for the best possible turn of events. Hoping against hope that THIS baby would live. A friend's mother wrote me recently and told me that Robert Frost lost 4 out of 6 children. I haven't fact checked it, but it is unimaginable.
I have been to the grief groups and participated in the online support sites. I know that this calamity can hit any family - families too emotional to even look at the autopsy report, families with not enough English skills to read the autopsy report, families with nowhere near the resources to pay for expensive genetic testing, families who do not have the time or interest or capacity to sit and read hundreds of scholarly articles about the various ways that children die. The genetic testing that my whole soul depends on is a test that wasn't even available to the public four months ago! How much more can we do really? We are doing everything we can! Does this mean I will stop my search? Probably not. I know that my love for Baby M would drive me to move mountains to keep him safe and alive. But, I cannot alone feel the weight of this responsibility. There is nothing more that I can do really except surrender. I surrendered once before, months after losing Maxie. Finally realizing that nothing I could do would bring him back. When I finally surrendered to that - I felt a calm that I hadn't felt in months. Not the kind of calm you usually feel (even though you don't realize you are calm because you are so worried about stuff that wouldn't really matter if you could take a step back). But - then the aftershock came - like a Tsunami - knocking me off balance again - throwing me back into the unrelenting waves of pain. I need to stop paddling against this current and let it take me wherever it is that it is pulling me. However painful that may be.
Don't think I don't have a backup plan though - I'm still me. It is a backup plan that I can't believe I didn't come up with earlier. It's so obvious and it was a plan Ted and I thought about pursuing before the earth caved in on us. If all goes upside down and god turns his/her back on us again - you will be able to find me in Israel (truth is - you might find us there if all goes perfectly according to plan- it suits us in so many ways - now more than ever). I know that I will not be the only one there suffering from Post-Traumatic Stress. Tragically, I will not be the only bereaved mother. I will not be the only one who isn't smiling from ear to ear and pronouncing that "everything will be fine". My new prickly ways will fit in just fine in the land of the Sabras. My less than Wal- Mart disposition will be like every other person I am fighting with to get on the bus - the bus that feels as insecure as my heart does. I will abandon the story of my individuality to be part of a much bigger story and that is where I will find myself again. I am sure of it. (oh, why did the kibbutz movement end? I could SO use hours of my old work in the banana fields). Plus, I love it there and I will be able to spend weekends reading under the shade of Maxie's Forest. When people come back from Israel and tell me that the Israelis are unfriendly people - I smile, knowing just how wrong they are. They are the warmest people - they are just protecting themselves...the way I now protect myself. No more fake smiles. No more false reassurance. My back up plan and my surrender have given me a little more peace of mind than I thought possible at this stage. My heart still aches for Maxie though. Aches and aches for my little smiling boy.
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2 comments
I love your Israel idea. My brother made aliyah about 6 years ago now and he loves it there. He lives with his (Israeli) wife and toddler girl and soon-to-be baby son in the north near Haifa.
Israelis may come off a bit harsh to outsiders, but you're right, they AREN'T. They are some of the most loving, giving people on the planet. I have been to Israel 3 times now and every time, a complete stranger has done an amazing kindness for me. Because it's Israel. Because everyone is family there.
And yes, they understand tragedy. An entire country that understands suffering and tragedy. We Jews as a whole should be so empathetic to each other's suffering and pain, and also so willing to celebrate each other's triumphs. Israelis do that so much better than anyone else.
I love love love your backup plan even though I hope you never have to use it. If you decide to go there anyway, then more power to you! Israel is a wonderful, wonderful place. =)
I have only just found your blog and I'm so sorry to hear about your precious Maxie. I wanted to say thank you for this post. I lost my 5 year old son just before Christmas and I'm pregnant now. Jude died suddenly from an undiagnosed condition which can occasionally run in families.
I feel like I might print out your post and pin it to my wall. I totally get that having access to too much information can make you worry more than you need to. if anyone knows that you can't take anything forgranted it's you and I.
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