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...
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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.