Wednesday, February 16, 2011


This is our third day in the hospital, so we are getting the obligatory offers of help from the hospital staff. I find it amusing now.  Not amusing in I am laughing at it.  I think it is great that help is offered to parents of sick children.  Most parents don't have to face this as frequently as we do, so services like this are great.  However, we've been here and done it over and over again.  I've yet to find one of these helpers (social workers, child life specialists, case managers, chaplains) who could actually help me.  In the beginning, I would listen to the entire spiel and then nicely decline the help.  As time went on, I accepted the help, only to be told over and over again that they were sorry, they had nothing to offer me that I wasn't already doing for myself.  So, I've gone back to declining the help.  Each new helper takes it differently.  That is what amuses me.

For instance, today, we had the chaplain visit.  I've met this chaplain on several occasions.  Usually, I listen to what chaplains offer and then nicely decline for them to pray with us.  If you read my confessions post, you'll know that praying is not something that I would appreciate doing.  On a previous stay, this particular chaplain did not like or believe that I really did not want her to pray with me over my sick baby, so I had to tell her I was an atheist.  At that point, she backed out of our room quickly.  On this visit, she started her spiel, then looked up and recognized me.  She laid down the card she brought and quickly left, making an excuse as door closed.  I find this amusing, not because the woman was uncomfortable, but because her decision to press me into praying many moons ago forced me to tell her why I was declining and now she is uncomfortable around me. If she had just listened to my "no, thank you" in the first place, she wouldn't be so uncomfortable around me. I don't know if she is uncomfortable because she tried to pressure me into praying or because I am a non-believer.  She shies away so quickly that I have never been able to address the issue and frankly, when I am in the intensive care unit with my baby, I don't feel like I should have to make her comfortable.  I find it amusing that just the sight of me can cause a grown woman to flee immediately (and I promise, I was cordial to her when I told her why I didn't want to pray.  I try not to rock the boat with people responsible for my children's safety and welfare, nor do I piss off the people who work with the caregivers.)
We had a visit from another helper today as well--the social worker.  I've never met this particular social worker and it was obvious she had no idea of our history.  When I started responding to her questions, I could see the wheels turning to offer me services that have been offered before and won't work for us for several reasons.  I tried to preempt her by telling her we've been offered the services many times, that it is not worth it for us (more money/work than it is worth), that I appreciate the offer.  She didn't believe me.  I find this amusing, especially after she asked if I worked and I explained that I am a lawyer.  My job is helping people navigate the system (okay, I mainly help businesses navigate).  If I tell you I have been offered the same services several times, I looked into it and decided it was not worth it for our family, I don't feel like we need help at this time, and I know how to find help if needed, wouldn't you take that as a sign that we're covered?  Not this time (probably because she didn't look at the Dancing Queen's history sheet I provide to the medical staff).  Normally, the social workers accept my answers and look over the sheet and tell me it looks like I've got everything covered.  Again, I know her job is to make sure we are not lost in the cracks and I'm sure she deals with parents who don't want help all of the time, yet they need it.  But, someone telling you they've accepted the help before and realized it wasn't all that helpful doesn't require the hard sell.

I'm not against help, but we are already taking advantage of the services that are useful to us. Now, if someone would offer services that included cleaning my house, fixing my dishwasher that has been busted for 3 weeks, cooking healthy meals for me while I'm in the hospital, I'd be all over that. Alas, I've yet to find such services offered by any hospital, government agency, or charity. Granted, my family has stepped up in that regard on many occasions and my mom is grocery shopping for me right now, so I guess I don't even need that help.  (I'm still looking for the dishwasher fairy to replace the one plastic ring that busted and we can't find at Home Depot.)


  1. I'm just catching up on your last two posts. One expects their true friends to always be there even when one cannot hold up their "end" of the friendship at the time. I call those who are only around in the good times my "fair weather" friends. I decided, long ago, that I did not want to be a "fair weather" friend nor did I want "" as friends. Did you make any sense out of that statement?

    I do not know how I met Izzy and you. My Carepage contact started with one baby girl who had some sort of "event" after birth. She was the niece of a good friend of my son. Somehow, from that entry, I found Izzy, Jilly and Aiden and they became my "always" friends. So, count me in the "friend" column. We are not geographically close but you have my shoulder any time you need to vent--publicly or privately!


  2. I totally get what you are saying.

    Right after the twins were born, a friend came over to visit and was so pushy about cleaning my apartment, dishes, etc. for us that I just let her do it. I had to go back and undo, then redo, a lot of what she did (like loading our broken dishwasher with dirty dishes) so it ended up creating more work for my husband and I at a time when we were already exhausted.

    On the flip side of that though, no family members have ever offered to help us.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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