we got anger. right here in river city.

well, i may not be the music man, but i do have anger.

i went a "little bit postal" the other day. it was a saturday, and as we passed by our postbox, i fished out the mail. there was an envelope addressed to charles and i from a local address i did not know. i could tell by the shape of the envelope an invitation was inside.

in the lift, i lodged all the bills, catalogues and other mail between my arm and ribs, and slid open the envelope. in the seconds between my pulling out the invite and my confusion/anger, i registered that the queen mary parents of premature babies group was inviting me to a talent show and afternoon tea.

who ARE these people?

the lift stopped at our floor and i got out, walked into our flat and stomped across the floor still in my outdoor heels.

i shut the door to our room, grabbed the telephone and punched the number given for anyone with questions. when a lady answered, i asked her if she had mailed us the invitation. yes, she responded, she had. would we be attending, and if so, when would we be sending in our cheque and did we want to enter our children into the talent show.

who are you? i demanded.

we are the parents of premature baby groups.

what do you DO?

we support mummies and babies. and we hold events, and gatherings and parties.

where were you last year?

what?

i was angry cold now. where were you last year when my children were in the hospital and we were told to get premature nappies that were smaller than sanitary napkins, and we didn't know what to do and we didn't know what these terms were and we didn't know what to expect or what was happening? if there was a preemie outreach support group, why couldn't we get in touch with you?

maybe no one told us you were there.

maybe? don't you think that supporting parents of preemies is more important when their children are in the hospital and they are overwhelmed and bewildered, rather than having talent shows and tea afterwards? i could have used your advice, and there was no one.

that was about the jist of the conversation. needless to say, we didn't attend the tea. thought long and hard about entering the triplets in the talent show...after all long distance vomitting is an art, but declined.

no two ways about it, i did spew unfairly all over that lady. why my reaction was so strong, not sure. i think i was appalled that the preemie group's priorities are so off target (in my opinion). talent shows are great, but i could have used someone to guide me through the nicu during our days there. to explain that walking in and seeing your child having a blood transfusion is a common NICU practice. to point out the best times for talking to the dr, to suggest we keep a diary and take more pictures.  to tell me which company will ship preemie nappies. instead, we were alone with the beeps of machines and the whine of white noise. the nurses were wonderful,  but did not have the time or understanding or ability to answer our questions.

a few months after we departed the nicu, there were a series of expats who overlapped each other, and each was able to pass on wisdom, support and advice to the "rookies" whose preemies entered the world and floor. what a difference that support made to those people. someone to smooth their entry into that tough new reality. i wish we had had that.

and after departing the hospital, we told one of the doctors we wanted to form a parent support group. to my shock she responded,

you can't, there is already one.

are you kidding? no one contacted us.

yes, they have bylaws, many committees, and are active. besides, none of you have training as counsellors, i am not sure you should form any group.

we don't want to counsel, we want to help.

you need training before you can do that.

so, with our offer to help being refused, and then being refused the help that was apparently available, i went crazy when help arrived a few months too late.

call it sad, call it funny

but its better than even money

that the guy's only doing it for some doll.

(well, in honor of two dolls and three guys, but who's counting?)

 

Comments

[Trinie]

Oh Tess,

I can totally understand your anger and frustration at that lady. It isn't now that you need support. It was a year ago when you were living life on a knife edge - when your emotions were so tied up with your precious three, wondering if they were going to see another day. That was teh time that you needed someone beside you, holding your hands and helping you through the day to day events that occurred.

On another note, I hope that you are feeling better with that cold.

[Maggaggie]

Lyrics, eh? : )

I would be totally ticked off too. I know you feel as strongly about this as I do with my current situation, although totally unalike.

Ever think about writing a few articles or a book on preemies? Just a thought.

Hope the cold is improving.

[maia]

I am VERY surprised they did not hear of you when your babies were in the baby intensive care. Or are triplets so very common there?!

[Boulder]

Ugh. Sick to my stomach over this one. I'd have opened the door & carried your ammo while you went postal.

Did ANYONE think about the poor parents who weren't so fortunate as to be able to graduate a child out of the NICU? What must they have felt like when they received this insensitive invite?

Guess you have to have bylaws to know how to send invites & throw a party these days. Just not common sense about what a parent of a premature baby really needs.

How utterly sad for the parents who are there in hospital right now not having anyone to act as their guideposts to the unknown. But hey, at least they'll get an invite to next year's talent show & tea gala fete.

Ugh.

[lyns]

UN BY GOD Beleivable..... Iam IRATE... My suggestion..screw by-laws and committees...what are they going to do throw you out of the hospital... leave your name, your number anything... get in those doors and help the people that despartely need it NOW...tea parties. and talent shows.... what can these people possibly be thinking???

I am so sorry...but I am glad that you can be that person for someone else...a gudie, with wisdom and strenght and proof that QMH is a good place to have your prems...and that these kids will fight and live!!!!! I love you!!!!!!

xo lyns

[Lioness]

Simply heartbreaking. I agree w Lyns, if you can alleviate some parents' suffering, it's worth it. No need to even create anything formal, you can just make sure they know how to reach you. I'd be mad as hell too.

[kaykota]

You have every right to be angry. I also think it is a fantastic idea to start a parent support group for preemie parents. I don't care what the dr says, just do it. So many people could be impacted so positively! Lioness is right, it doesn't have to be formal.

Good luck!