Dear friend,
Talking to you yesterday shifted something in me. Â I cried harder than i have cried since the first week ayrie died because IÂ realized that i killed him, that i should have moved to boston but i didn’t because i knew that it would be hard. Â So i didn’t move to boston and buried the part of me that told me that moving was something I must do to keep Ayrie alive. Â I held onto a hope that in my deepest depths knew was an impossible hope, that I could keep alive a child with a complicated airway when we live 1,500 miles from medical help. Â And that doctor? Â The one who was a jerk? Â Who told me that if I was going to take him to a doctor in Boston that I should just move to Boston? Â Turns out he was right. Â His delivery was deplorable but his message was true.
And now Ayrie’s dead and it’s my fault.  Because I was too scared to make a seemingly impossible decision.  So instead i stayed here, trying to get the insurance company to cover Ayrie, to let him go to Boston, to raise enough money for plane tickets.  It was wrong.  It was so very wrong.  And people told me i was strong and amazing and it always felt false to me.  Well now I know why.  Because in the deepest part of my being I knew that even though the fight to get Ayrie good medical care was hard, that I didn’t do what I needed to do because that was even harder.
i want to tell Ayrie how sorry i am. Â how i realize now that my weakness killed him. but it doesn’t matter. it’s too late. this was not a choice that i get a second chance on. Â i simply have to find out how to live with the knowledge that my fears were greater than my will to save my son. Â and that’s not going to be easy. Â i will not be too weak to raise shiya well but I remember a time not too long ago when Ayrie asked me, “What does it feel like to die, mom?” Â And I told him, “I don’t know, sweetie.” Â We were lying in the dark, hugging the same stuffed beaver together and I remember thinking, ‘i don’t know what it feels like but it doesn’t sound bad at all. it sounds like something that I might welcome.’
I am not suicidal. Â I absolutely am not so please don’t be worried. Â but I do wonder what the point of living is other than being shiya’s mom and that’s a very depressing place for me to be in my mind. Â I have to rediscover meaning and purpose knowing that I have to make up for my weaknesses that caused Ayrie’s death. Â Only my intuition will know what this meaning and purpose is. Â I pray that I have the strength to listen this time.
with the deepest sadness and full of regret,
nora
Nora, we mom’s do this. We blame ourselves for things that we cannot control. I don’t know everything about your little boy’s condition but it sounds like where you lived wouldn’t have prevented his passing. You were doing the right thing by bringing him in for surgery. My words probably offer little condolence but i just wanted u to consider that this was not your fault. You offered him the best quality of LIFE that you could while meeting his healthcare needs. That was an incredible feat. With lots of love and support, michelle
Nora,
Watching your life unfold with your children, your keen attention to their needs, and the circle of your loving family (East and Midwest) was exactly what you and your children need(ed). What you are experiencing/feeling is an incredibly normal thing which probably is no comfort.
You were there when it was needed – every time. I read your post about his last hours and cried with you here in Chicago at my kitchen counter. Words fail through all of this.
I love what Michelle says above. I am not convinced living near a the medical center would have changed a thing.
Too, one must have a life worth living. You were living your life with your children in the best way for everyone.
I am hearing you.
Cathi
NO NO NO. I COMPLETELY DISAGREE! It was NOT the right decision to move to Boston- Ayrie died IN BOSTON! YOU got him there. YOU got him there alive, in good spirits, jovial as he readied himself to be examined by a doc. A doctor- a GREAT DOCTOR doing his residency with HARVARD no less- examined him, consulted with his attending, Dr. H, and they decided you really got him there in PLENTY of time and he could WAIT UNTIL MORNING to have surgery. Their skilled, professional medical opinion was that it could “wait until morning”- and you were there the NIGHT BEFORE. You didn’t stay at home and let him die without skilled medical intervention- you brought him to get it. You were there “ON TIME”- but something went wrong. There is no fault, no blame to be had. We share one of the GREATEST surgeons in the world- he was there and couldn’t save Ayrie. You are a MOM. You are a “mere mortal”. Although you would like your universal remote to control the universe, it DOES NOT, it CANNOT! YOU did NOT kill Ayrie- nor “let him die”. You “LET HIM LIVE”. You raised him with love, confidence, close to extended family who loved him as well. You allowed Ayrie to LIVE. You chose the BEST surgeon for him. You got him there EVERY TIME he needed to be there. Th medical professionals believed Ayrie was stable and ok for the overnight- there is NOTHING YOU could do to change it. It SUCKS. It is horrific. It is AWFUL. But it was Ayrie’s time to re-join the energy of the universe beyond our physical world and there was nothing you, nor ANYONE could do to prevent it. And I HATE that. And may you never have to copy and paste this note to my blog! I love you- and I don’t love someone who didn’t do the “right thing”- it was ALL right. HUGS
Nora, you made the best decisions with the information you had. I think the harder thing was to stay put, where Ayrie was happy, where he could be a normal, active kid, and you took on the burden of transporting him to the best care possible. You opted for the best quality of life for all of you. Ayrie in Boston would have been sick Ayrie and he would have hated that. I understand why your mind would go to what you might have done differently. I would probably do that too. But deep down I don’t think the trajectory of his life could have been altered. I don’t completely understand that, but I believe it. So the important thing is this -that the quality of his life was unbelievable good. Like Kathy says, he is glowingly happy and he would want you to be happy in your life and in Shiya’s. You were not alone in any of this and you are not alone now. I love you.
Nora, remember: Ayrie chose to go at that time. You received that message loud and clear through many messengers, and it is still true. Your job, which you are doing so amazingly despite the seeming impossibility of it, is to discover meaning and truth in this heartbreaking experience. And then share it with the rest of us, who are so eager to understand something important about the universe that we don’t already know.
Nora, I’ve been afraid, since the moment I heard about Ayrie, that you would blame yourself. It’s natural, but it’s wrong. We live in a world that gives us an illusion of control. We are told that if we try hard enough that we can steer the course of events how we want them to go, but it’s not really true. Sometimes we try and succeed, sometimes we try and do not. It’s not all up to us.
Gretchen put it really well, above. You allowed Ayrie to live. And it is awful that he did not live longer — but it is not your fault.
Re-read Gretchen’s comment. Print it out, keep it with you, so when you start to think it’s your fault you can remember that it’s not.
Much love,
T
o. its hours later now and i want to clarify, when either of us does the “wrong thing”, we still love each other- but nothing done with Ayrie was the “wrong thing”. Just to be clearer. HUGS again.
Oh, Nora! Living in Boston would not have made a difference. As Gretchen said, you got him to the hospital in time. Doctors agreed that surgery could wait until the morning. If you want to blame anyone, blame the doctors! But blame will not bring Ayrie back. I love you, Nora–your Minnesota family loves you. I wish I could say something to make the pain go away, but I know I can’t; just like I know you did nothing wrong by choosing to live here.
Nora – from what I saw of Ayrie’s spirit and nature — he absolutely would not want you to be thinking thoughts like this — fight those thoughts — it’s very important that you share them, but chase those thoughts away — it’s what Ayrie would want for you, of that I’m sure.
I sometimes experience intense anxiety at the thought that I made a choice that was irretrievably harmful to one of my kids. What works for me is a cognitive trick: to verbalize the opposite message repeatedly (without necessarily saying it aloud). Try it! Tell yourself over and over: “I am not to blame for what happened to Ayrie. I did the best job with Ayrie that I could possibly have done.” Just tell yourself that over and over, even if it feels false to you. And eventually you will come to feel and see that it is true. Everybody else can clearly see that this is true: You did the best job with Ayrie that you could possibly have done. You did the best job with Ayrie that you could possibly have done. You did the best job with Ayrie that you could possibly have done.
someday everything will be ok. Not having him with you, but other good things too will happen in your life.
I know that you know that blaming yourself is not a good place to go, and it doesn’t help anything. Life is hard, we are so lucky many of us in this country we have so many edges rounded off for us.
There are still lots of wonderful people who need you, and you were just like ayrie a long time ago a little bright eyed kid- and you still owe that kid, yourself to just let yourself be happy. I cant imagine how I would deal with issues with my kids, or aaron or myself but it might just be sitting there in the future waiting for me..
I know you know how my mom had cancer when she was 4 and is in a wheelchair, and almost died when I was about 12 (the cancer again) etc. and I was raised always a bit negative, like expecting the worst like knowing the person hurt in the move SHOULDNT always get up and walk away in the end. and… right now she is back stuck in bed due to her fragile back bones. and its just… how do you live when life is just unfair? I mean she can be positive or negative. and the thng is her life is crap right now, too much movement she could die. out of bed 1 hr a day with a back brace.. cant travel etc. they have no money because of her health costs just gobblign it up. almost lost their house this fall…
so, if she is happy and positive its just from her making it and feeling it for real all on her own, becasue in my view the cards dealt to her just suck.
everyone hits hard places some time, and someday I bet you will be a rock for someone else and share yr wisdom that you are getting. I dont know the things you know, and I just know with your nature and fact finding social mindset that you will be helping people sometime somewhere and being one of those extraordinary people that do good in the world rahter than live passively, or take from the world.
much love. I was at the Y today and almost dropped off a get well soon note at yr house on the way home.. 🙂 (since I heard you guys might be getting a little sick).
anyway, hope this doesnt rub you the wrong way, it feels preachy. but I just passionately wanted to tell you that you can still be happy someday in someways, maybe just not the same way or its really really hard but there is a lot out there worht fighting for. and its waiting for you.
I’m also the anonoymous above -inadvertently. Another trick is to imagine if it was your friend in your place — what would you tell him or her given the exact set of circumstances. I bet you’d tell your friend — that s/he did everything they could have done — which was the very best they could do and not to get down on him/herself. So treat yourself as you would your friend, be sympathetic to yourself as you would your friend, be loving, etc., etc. as you would your friend.
Imagine Ayrie had died in a car accident. I know you feel now like there was some inevitability to what happened, that your choices led up to that, but that’s not how it happened — Gretchen does a better job than I do at making that clear. So imagine for a moment that it was something as seemingly random as a car accident. If you looked back on the circumstances that led up to that accident, it would not be inevitable. You would wonder if you could have paid better attention. If you even needed to make that trip. If you put his car seat in the right location. And there may have been a voice in your head from before the accident that said “this isn’t right”. That said maybe you shouldn’t have gone out. After the fact, you could find yourself pulling that out, wondering why you didn’t listen to that voice instead of another voice. Wondering why you made all those decisions that led to that end, and if it was your own failing. But you wouldn’t be right. And I know now you look back on your choices, and you are picking out the worst reasons you had for staying and the best reasons you’d have to leave, and you are judging yourself based on that. But you are making a selection error.
And maybe I understand why… I think it all hits me most painfully when I feel like I’m not feeling enough sadness, when I’m not feeling Ayrie’s loss. Because… we’re the ones who are left to feel his loss, to remember him. And to forget him feels almost treacherous. And I feel sometimes: if it doesn’t hurt enough, am I doing something wrong? Emily and I feel this too, and we aren’t going to tell you your wrong for feeling it either. There’s no degree of sadness that is wrong, that goes too far. Sometimes I’m sad because I miss him. And if that isn’t sad enough I think not about what I’m missing, but about what he’s missing. And so far I haven’t felt any need to go beyond that, that’s as sad as I can feel.
But this regret… you don’t need to do this for Ayrie. You do not need to do this. Just hold on as tight as you can to your love for him, and his love for you. That’s a hard enough thing to do.
Nora- It’s so clear to me now why you were so upset today, reading what you have been going through lately, and the doubt and regret bubbling to the surface. I don’t blame you for feeling any of it, but I know beyond any shadow of a doubt that you did everything right for Ayrie. Your intuition, your fierce love, your sacrifices and your strength all led you to surround him with a community of love and care that could not have existed anywhere else. You didn’t just let him live, you celebrated his life every single day. You didn’t let his illness define him, and therefore he never saw himself that way. You gave Ayrie the gift of the most normal and love-filled life that was humanly possible.
I’m so saddened by this. Your message and these responses bring tears I can’t explain…Don’t doubt the messages you received dear one. They were perfect. You are perfect. We forget too often how perfect we all are. Nora you are beautiful. We all see you as beautiful and amazing and incredible and and and…Remember this in the hardest of hours…I will try to do the same for me…
Such human wisdom here, Nora.
I won’t presume to add much – being myself mostly older, and not all that wiser- but want to offer a few thoughts that kinda-sorta dovetail with what others have said to you here.
I believe the direction of our lives is mostly happenstance, a course less chosen than evolving, as we respond to the eddies of chance and circumstance that push and pull as we earnestly paddle toward whatever shore we hope is achievable.
Our lives are so small, and the forces operating upon us so complex, that I “only” hold myself responsible for choosing, at any juncture, what I believe tends most toward something right and good.
I am fully responsible for making that choice- but not fully responsible for the outcome, since so much that is utterly beyond me also influences what will happen.
You chose, a reasonable choice, a thoughtful choice, and I believe you truly have no way of knowing what would have evolved from a different choice.
“Unknowable” is miserably hard to live with, amongst all the “what ifs?” of great loss. But live with it we do, and for me there has been some peace in accepting that my responsibility for anything and anyone has limits I cannot comprehend, much less control.
I have read and reread this thread, especially Jon’s posts. I can’t do better than echo him: “But this regret… you don’t need to do this for Ayrie. You do not need to do this. Just hold on as tight as you can to your love for him, and his love for you. That’s a hard enough thing to do.”
I want you to know that in my classroom at UMCCC, in our Library corner, Ayrie’s sunny face beams out from a small framed picture that is “just” there on the wall. Often, especially as I sit with a wiggler during our daily resttime, I look and remember and smile back.
For me he’s present and precious and missed. I am grateful to him, and to chance and circumstance, for putting him in my life and heart. There he stays. The love that is Ayrie abides.
I wish you peace…
Nora… I wish I could hug you right now.