Friday, June 25, 2010

Sorry to Bother You...

Ed.'s note: Hopeful Parents received this post in an e-mail message tonight in an effort to reach out to someone, anyone. The author gave me permission to share it here. I hope you'll offer her your comments.


...I just wanted someone to read this. Not neccesarily to do anything with, but maybe just to know someone read it, and that I'm not entirely losing it.

I have 5 children. 7, 4, 3, 3 and nearly 2. Heath passed away when he was 3 weeks old - he would be three now. He's one of my twins. I wrote this to explain (or try to) something we call The Thirtieth Day.

I *am* a hopeful parent - really, I am. Sometimes it's just hard...

- - - - -

This is my attempt to explain a tiny part of "The Thirtieth Day". It changes. It's usually sparked by an Abe or Heath moment, sometimes something else can spark it but it then gets turned toward an Abe or Heath moment.

This is not a happy cheery note. Please do NOT read this note if you are happy. It will bring you down. If it doesn't, I haven't written it properly. It will upset some people. That was not my intention. My intention was to write down what is going through my head on this particular Thirtieth Day.

You have ben warned.

Really - last chance. Stop reading now. Don't grumble afterwards. Fair warning has been given.


I used to think that I had tough decisions to make.

What colour should I paint the bedroom walls? Where should I put stuff that was clearly junk, but that I didn't have the heart to throw away yet? What would be the best shade of blonde to go this summer?

Then I had to decide where to bury my three week old son. Should he be somewhere near? Should he be somewhere central so family could visit him easily? Should we bury him in the middle of the plot, or should we bury him at the end so that we could bury his identical twin brother with him if we needed too? What should I bury him in? Should the funeral service be closed or open casket? There would be pregnant women there as well as newly postpartum mothers - would it be upsetting for them to see a three week old premature baby lying dead in a casket? I didn't want to make anyone feel uncomfortable - (the irony of that statement is never wasted on me, every time I think it I metaphorically smack myself upside the head) - how exactly does one plan the tasteful funeral for a three week old?

I took pictures. Pictures of Heath in the NICU, pictures of Heath with his grandparents and us. I took pictures to remember my son by, and to place at the funeral home in order to make sire that people could see him but not me shocked at "seeing" him. I took tasteful pictures. I took pictures that were heartbreaking, but I took pictures that would not offend. I was very, very careful to consider everyones feelings. I was a little too careful.

I forgot to consider my own.

Some people could not look at Heath's pictures. It was "too hard" for them to do so. I carry those words with me - "too hard". Too hard to look a pictures of a dead baby. Those pictures I took at *the* hardest time, the pictures that I took so that I would know he existed. The pictures I took so that I could show people how beautiful he was, how good he looked - how *real* he was. It was "too hard" to look at those pictures. I want to put that bag down. I want to drop that burden - I want to remove that knife from my heart. I want to be able to move on from that moment and to be able to remember my son's funeral with emotions other than sadness, bitterness and anger. I want to be able to scream and yell in the faces of the ones that hurt me. I want them to feel the pain they caused me on the worst day of my life. I want to make those people (that person?) UNDERSTAND. You hurt me. You ripped the last piece of unbroken heart I had from my chest, stamped on it, and then reinserted it backwards. You did this in the space of as many seconds as it took you to say "I can't look at his pictures Emma, it's too hard." I've been told that I said something hurtful to someone during Heath's calling hours. The evening before I buried my son. I'm not sure what to do with that...

I didn't hold my son during his funeral service. I wanted to. I was worried it would be perceived as weird. I didn't say what I wanted to say during his calling hours. I tried to be a good hostess. I comforted the people who were distraught, the people who couldn't talk to me for crying. I was worried that no-one would come. I was doing everything I knew how to make sure people came to celebrate my babies short life. I did this while his identical twin brother lay in the NICU hooked up to a ventilator and more life support systems than a Borg Cube in stasis.

That was three and a half years ago.

It feels like yesterday.

That is but one facet of The Thirtieth Day. There are more. Many, many more. The Thirtieth Day is something that visits unannounced. It appears when it is least expected. It can cover any space of time, and sometimes it can project itself into the future. It can show me things I don't want to see. It can open doors that need to remain locked until the day they need to be opened. It throws me around like a rag doll, then walks away and smokes a cigarette. The Thirtieth Day. It never used to have a name. It used to wear a mask and attack me from wherever.

At least now I know it. Friends of mine gave it a name. They have their own Thirtieth Day, a cousin, if you will.

I am told (and on days 1 through 29 actually believe) that all experiences are relative. Tough is as tough does. Worrying about a promotion at work could be just as traumatic as experiencing the death of a child. It's all a matter of perspective.

Sometimes I wonder what life would be like now if we'd lost both boys that day instead of one? Remember that twin? The one on the Borg Cube? Well, he disembarked, but not before paying the fare.

Quadriplegic Cerebral Palsy, Atrophic Cerebellum and reduced brain stem, bilateral hearing loss, non-verbal, unable to do anything for himself at all, totally dependant on others for every single need. All that, and yet still (as far as he demonstrates and as much as we're told by some) fully cognitive.

Cue Thirtieth Day. Same day, different facet.

"He's never going to have a life. He's never going to achieve anything. He should have gone with Heath - you should have put them in there toe to toe. You must really, really, REALLY suck as a woman and mother to be left with this one! What the hell did you do that was so bad you ended up with this mess?! Damn girl - You.Are.Screwed. You know they think he's retarded, you know they do. What, that word upset ya? R-E-T-A-R-D-E-D!! Please! Call it as ya see it, he's a REEEEE-TAAAARD!!!"

If I actually took all the hurt, anger, fear, sadness, bitterness and regret I own and showed it to someone in one lump sum, they'd probably lock me up. But then, for the most part, people see me when I'm doing fine. "The Curse of Competence" is that ones name. I believe it's related to The Thirtieth Day, or at least, they're pals.

There's a lot of "I" in this. But there is a "we". As parents, we are both affected by these events on a daily basis. We just have to figure out how to put each part in it's own little box and carry it in a way that doesn't double us over.

It's a lot to carry. When I drop a box, forgive me. It takes me a minute to pick it up and rearrange.

I know there are people who would see this and tell me who I could have carry this load for me. Well, I'm mad at Him. I'm as angry as a cornered cobra. We're not talking right now. He let me down, again, and I'm not sure I'm ready to give Him another go.

I do know I have to take back my power. I just don't know how.

Thanks for reading.


  1. I read what you wrote - all of it. I am a witness to your pain. I don't think you are losing it. I am sorry for a society and a culture.that expects you to be polite in the face of the unimaginable. You don't need to be sorry - you're not bothering me. Feel your feelings, speak your truth. Love, love, love, love, love to you.

  2. Hi, Emma. I read your post as well, and agree completely with Kelly's comment: it's so incredibly wrong and unfair that anyone should make you feel as if you've done something wrong or offensive when it is YOU who've suffered the unimaginable loss of a child. Both of my boys were premature, and we spent a long time in the NICU and nearly lost my youngest. We did just the barest preliminaries of funeral planning, but I can tell you that I would probably have ended up doing just what you did...........worrying about what others thought, not wanting to offend, trying to act "strong" so I wouldn't upset others.
    You are incredibly brave to share your story like this, and you are not losing it, ok? Your "box" analogy is spot-on, and I hope that the world will show you just a little bit of courtesy and understanding when you have to take time to pick up a box or two that have fallen. ((((hugs))))

  3. I'm so sorry some people wouldn't look at Heath's photo. I know I would have looked at his photo, acknowledged his life and the love he'd been given.
    Although we haven't gone through the hell you have, there are certainly elements of your post I can sympathize with. People who haven't been through hell don't want to see it, think its contagious.
    I'm sure I'd be locked up too!

  4. Hi. I am sorry for the agony you endure. I learned long ago that people react to tragedy in all sorts of ways, and that it's best to just accept that and not read into things too much. That is easier said than done, but acceptance of that has helped me let go.
    The anger you feel is so normal. Please don't berate yourself for having anger. Don't berate yourself for any of your feelings. My son is 7 now, and while the anger has abated I still have it sometimes, too. What's helped me is blogging, to air things out; always trying to figure out what else I could be doing to help my son (taking action helps both of us, because then I feel less powerless); and just doing my best to stay focused on the good things my son is doing.
    There is a book you may have already read about a mother born with preemie twins, one of whom dies early on. It's called This Lovely Life by Vicki Forman. She's very open about her feelings, and I think you might find comfort in it.

  5. It's always healing to tell your story. Keep telling your story. Know that the more you tell it and the more you are aware, self-aware, the more you will heal. This will be incorporated into who you are and who you will become. It's difficult to say any words at all in the face of so much pain but many of us out here recognize these feelings as human, these words as ours. Tell your story.
    There's a website -- I believe it's called Glow in the Woods (for babylost parents) -- a website for those who have lost a baby, written by those who have lost a baby. Everything that I have read on that website is profound. If words comfort you -- if what you write helps you, if what you read helps you, it might help you. I imagine that there are times, too, when you can be helped, will be helped. And then there are times when you won't and can't. Both are real.
    I think, perhaps, that facing and enduring such loss forces one to hold two very opposing things in hand -- both life and death. You are holding both and I wish you continued courage and strength.
    Blessings to you.

  6. Hi Emma, and thanks for writing to Cristina, and therefore FOR us. I read every word. Some of them twice. You're not losing it, you've held on to it for far longer than you ever should have had to. Now that you've shared the last piece of your unbroken heart with us, we will hold it up for you.
    In some small way, I get it. My husband was sick while "we" were in the NICU. Going to the doctor to get antibiotics sick, by himself with nobody to drive him or knock on the bathroom door to tell him to get up off the floor that they were calling his name sick, only to get antibiotics AND a heart condition in the same appointment! I asked my dad to drive me to the NICU because Dave couldn't go, and I think he made it two or three days. I told him he didn't have to visit anymore, and he didn't. It was just too depressing for him. FOR HIM! Don't apologize if you said something hurtful. I hope you did!
    Perhaps you'll feel like sharing your identity with us...and your website with your photos. And if you can't, don't feel guilty. I'm sure Heath was beautiful. I'd bet money on it

  7. I did not want to be a silent witness. Your pain is so makes me want to hold you for a long time. I am so sorry for all that you have experienced. I would look at Heath's photos. I would sit with you and let you tell me the story of his short life a thousand times. I have never lost a child, so your pain is something I cannot claim to fully comprehend...but as a mother my heart aches for you. I pray that you find the comfort and community that you need right now.
    Stay strong Mama.

  8. You have experienced unimaginable tragedy and loss; your words are not those of a crazy person at all. Rather, they are those of a woman who has done a remarkable job of holding things together for everyone else, considering the feelings of everyone else and giving their feelings and sensibilities permission to be more important tna your own.
    I understand, too, the toll this can take on a marriage and on relationships. have you gone through or considered greif counseling? I know it's been a few years since Heath died, but there is NO statute of limitations on grief and all it encompasses. Whether your husband would go with you (or go on his own), I can only think it might help you at least validate all of those feelings and give you some ways to either release them or manage the roller-coaster.
    I wish you healing and peace.

  9. As with others above, i could not read this and not respond. I read every word. And cried. For Heath, for His twin, for you.. .for your family... for the friends who didn't know how much they hurt you.
    You have come to the right place. These are the women who've walked the path you're on, who will give you guidance on how to avoid the cliff face. Who will hold your hand, who will hold space for you to write what you need. And there are those of us here who haven't walked the same path but walk another difficult one. We will listen, we will cry with you, we will honor what you need to say and what you need to not say.
    sending you strength, peace, and healing
    sending strength, peace, and healing.

  10. Emma, thank you for sharing your story with us. I am so sorry for your loss. I do think in telling our stories we find our way back to a gentler peace, and so, maybe here, you've taken the first step. Acknowledging your feelings, opening the door, bringing them out into the light—that's such a brave and important thing to do. I can't begin to know your pain, but I hope you will find a way to keep telling your story, to share your experience and the sweet beauty of the boy you lost and the beautiful boy you brought home. Though it seems so inadequate, I will keep you and your family in my heart, hoping beyond hope that you find the comfort and community you need.

  11. You deserve kindness and compassion. In your hour of need it was not your responsiblity to console people but their responsibilty to console you.