Thank you for reading my blog. You make me feel heard when I learn that you are reading about our story. You save me from having to tell and retell the stories that cause me the most agony. You let me know that I am important to you, and that what happened to Maxie and to us, affected you as well. I have no illusions that this blog is a delight to read. I know full well that it is hard and sometimes disjointed and that the things we are going through are easier to turn away from than to come back to day after day or on any kind of a regular basis. Thank you for caring enough to want to have a sense of what life is like for us since Maxie passed. You also help me to ensure that Maxie's spirit doesn't die...that just because he is "dead", doesn't mean he is gone. He still gets to live through our memories of him and the special impact he had on all of our lives.
Lately, several people "close" to me have told me that they don't read my blog because it is too depressing for them. It hurts my feelings. The people who tell me this are almost always the same people who urge me to move on, stop thinking about Maxie and get over it. These people, who can't bear to hold our pain for the 3 minutes it takes to read about it each day, seem to have no concept of the fact that we are living this pain 24 hours of each day. Or perhaps they do understand, but they invite me to join them where life is more cheerful - in the world where we don't have to think about the fact that Maxie died unexpectedly at daycare in July. These also tend to be the people that stare at me blankly while I tell them about our genetic testing drama and then try to "cheer me up" by telling me how much joy Baby M will bring into my life. I try to avoid these people the way that they avoid me (even though they don't realize that by avoiding my blog, they are in fact, avoiding ME). The truth is that if you aren't checking in with me personally and/or you can't check in here once in a while to see how we are doing, then you probably don't really want to know. You probably don't really care. We both know that.
I often wonder how these people will want to interact with us once Baby M gets here. Some of them are people that I cannot avoid. They are connected to me by family or marriage or part of an inner circle that I am part of as well (or, at least, hope to be once again one day). Will they tell me how cute Baby M is? Will they acknowledge that he looks like his big brother (if indeed he does)? Will they pretend like nothing ever happened and our relationship is the same as it was before Max died? Will they offer to babysit, like they did with Max? What they may not realize is that our relationship will never be the same....just as I will never be the same. I actually wouldn't want someone to be close to my child who wasn't devastated by his brother's passing. I can't explain it, but that is how I feel. I have read that "To mourn is to love". It is true that I believe if you didn't mourn Max's death, you didn't love him. I wouldn't want you to try and be close to Baby M because I know that it wouldn't be real closeness anyway. I am fairly certain that these people don't know what real closeness is. I know full well that even if I thought I was close to these people before, I wasn't. I am not saying that there won't be room for them in our lives in the future in some way...but it will never be as it was. They aren't who I thought they were. Plain and simple (and in some cases, I always knew that they were shallow, but I tried repeatedly to give them the benefit of the doubt). I don't want Baby M on their laps, I don't want them to babysit him, I don't want him to be fake loved by them. I want him to know real love, the way it should be. It will be hard enough for me to let go of him - to not have him in my arms at all times. It was hard enough with Max, to be honest. But, I made a decision with Max that I would let him choose who he loved....even if I didn't love the people he chose. My decision with Baby M is to be careful with him to start. To keep him safe from the false, shallow, smiles of those who do not care for as long as I can. At 38 years old, I wish there was someone protecting me now. I have been "cleaning shop" for months. I will not work hard to make these people feel comfortable anymore. They do not care about my feelings so why should I care about theirs. If they did, they wouldn't tell me that my blog is too depressing for them....they wouldn't tell me that "none of the comedians were very funny at Maxie's Benefit"....they would tell me that they miss Max and that they are sorry every day that he is not here....they would not bypass this important step interacting with me so that they can get quicker to the step where they tell me all about themselves. These people are unavoidable. I will continue to see them every so often. We ALL have to interact with people like this at some level. And, some of them I might be stuck with for life. But, I will guard my heart from them even more after Baby M gets here. As Ted has said about a few of these people - "they are dead to me now". Dead to me, the way that Maxie is to them - Dead in the sense that they do not acknowledge him, love him, care about his story, care about our story. As a consequence of their inability to care, I don't care about them either. I just DO NOT CARE. Their incapacity to love us in our broken state makes them dead to me. They are dead to me like that.
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Abby, none of my family and friends read my blog. Whenever I write an entry I post the link on FB yet I haven't had anyone other than online friends and random strangers read it in about a year. It IS hurtful and angry. I thought that since so many people felt bad when Toby died and they'd never met him that they would care more about Iris. They didn't. My room in the hospital was the one without flowers, balloons, and visitors. I have 26 aunts and uncles and more than 80 first cousins. So far, three family members have met her. She will be 9 months old in 2 weeks. Only a handful of friends have. I've given up on people at this point. Pete wrote them off as dead a long time ago. We decided awhile back that we didn't need anyone but each other and we turned inwards. That's one of the reasons why I like reading your blog and keeping in touch with some of my other SIDS parents-it's less lonely.
Oh Abs, I wish I had the answers. I wish that I could "fix" everything. But, I don't and I can't. But what I can do is to love you, Ted, Maxie and Baby M with all of my heart, unconditionally. No, your blog is not a "delight" to read. How could it be? It is a blog about losing your most precious Maxie. It blows me away that anybody would expect it to be anything else. But, what your blog IS, is a phenomenal and loving tribute to your son and, I think, an immensely helpful experiential guide for people who so unfortunately may be going through the same thing as you. You've connected with people and touched them and HELPED them. Your writing is beautiful and I'm so proud of you for all that you are doing. As long as you write, I'll never stop reading.
As for Baby M, of course I cannot wait to meet him. To see if he looks like his brother, to snuggle and hold him and get peed on (like his brother!). But mostly, I can't wait to look in his newborn eyes and whisper in his little ear and tell him about the first time I met his awesome big brother and about how loved he and his brother are. Yes, Baby M will bring all of us joy but nothing will take away the fact that Maxie is not here. I think of and miss Maxie every single day. I will always love your boys, both of them. I'm sorry that people keep disappointing you and leaving you feeling unprotected. I wish I could do more to protect you and to hold you up. You are always in my heart and in my thoughts - protecting and loving you. xo
yep i have been there. am actually still "there" dealing with these people. there have been a few that now that our rainbow is here have tried to reach out to me again to tell me how excited they are for me. one of them is a family member. she has emailed me a few times to say congrats and ask me if there is anything we need for the baby. i have ignored her. some people i have actually filtered their email so that i won't see it.
through all of this i have learned that life is much to short to deal with people that are negative or that are not sincere. i feel like you can do whatever you want or say whatever you want to/about me. but i will not tolerate people being even the slightest bit disrespectful to my son or his memory. i'm unforgiving. i cut people out of my life now without question.
i'm so sorry you have to deal with this too ((hugs))
Abby, every day, since the first time I signed on to your blog, I take the time to read what you post. Because you deserve to be heard, because I have the hope that the more people you share your sorrow with, the greater chance you have for some moments of peace in your life. Yes, at times of loss we say the words"auf simchas", meaining that the next time we see you should be for a happy occasion. But as compassionate human beings, as people who have been touched by you, we owe you a few moments each day to enter your reality, unconditionallly. I will listen for as long as you need to be heard.
Abs, my heart aches each and every day for what you are missing and what Maxie is missing, for the fact that he is not here with you and with us. I will always love and miss your sweet firstborn boy for as long as I am alive. I am so sorry that you and Ted and Maxie and baby M aren't all together, it's the worst, worst thing ever. And I will always read your blog, in its honesty, sadness, beautiful memories, pain, anger and whatever else you decide to share. Love you.
Abs - As hard and heartbreaking as it can be, this blog has helped and continues to help me understand (as much as I can) what Maxie's passing has been like for you and Ted...the unrelenting hell of it all. I am not holding my breath for the day you "move on" nor am I waiting for things to be "like they were." I know Baby M will bring joy to your life, just as I know Maxie's death will be a constant sorrow. there is no cure, only understanding. Love you.
Abby, we've only met once and I never met sweet Maxie, yet I make a point to check in on you and Ted via this blog at least once a week, to remember the life that he had, to say special prayers of gratitude for my blessings and to contemplate the fragility and unpredictability of life. I appreciate so tremendously your honesty, your courage in sharing your grief. I am learning from you about what it is to lose - like you, I want to plan ahead. And though I'm seeing that its impossible to plan for the most significant losses in life, I am also embracing the uniqueness and legitimacy of each person's course of mourning and I hope I'm growing into a more empathetic person. I wish you never had to be the person from whom I learned these things but I do consider you to be a most wise and remarkable teacher (and mother). Shabbat shalom.
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