My Question of the Day…

How much slack is too much slack? I had an incidence/conversation at rehab this morning that got me thinking about this. The morning didn’t start out well… I woke up an hour late so I didn’t get my wake up/quiet time. I am grateful that it was this morning instead of tomorrow morning when Nicole has to be up at 6:30 a.m. to take the PSAT at 8:00 a.m

I got Nicole up and she was almost in tears as she lay in bed and said, “I don’t want to be as busy as last week.” I know how she feels but we have to finish rehab. I must say that I yelled at her when I shouldn’t have because 15 minutes before we were getting picked up she was still in bed. She didn’t get to take all her medicine… had to change her pants again because she dripped something on them and couldn’t wear them even though it wasn’t noticeable … this is where obsessive compulsive disorder rears its ugly head.

We got to rehab and it was very busy. Nicole had just walked ahead without waiting for me once we got to the hospital so I decided to go get a cup of coffee as I still needed some. When I walked in to rehab she was in the chair in the corner. Nobody had even acknowledged her. She had a bad attitude so I took her out of the room and tried to find out what the anxiety was and she just wanted to mumble so I couldn’t understand her so I told her to go back inside. I also said that if I didn’t need to be in there because she’s a minor I wouldn’t be which I know wasn’t nice but I meant it.

This elderly man, John, has been at rehab the whole time we have been there. He is very nice and really likes Nicole. They both have PH. I told him that she wasn’t very pleasant this morning and asked if he wanted to adopt her. He said he would love to take her home. He then said to me, “You need to cut her some slack she is 17-years old and has to go through all of this.” Of course this is true … but my reply to him was that I cut her more than enough slack. Actually, sometimes I think I cut her too much slack. She just seems to want to quit and not try to fight anymore. I will not allow her to do that. She has a purpose here and while I don’t know what it is I know that it is for something great.

This is definitely food for thought.

A lot of you have asked how Nicole is doing and she seems to be doing better. I have seen this happen before when she has too much going on in life. It is hard to realize how much energy the simplest of things (like breathing) takes for Nicole. She needs much more rest and relaxation then you or I. I hope that we don’t have a repeat at the end of the week since our week this week is almost as busy as last week.

Hugs:O)
Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS

Avatar of Jane

About Jane

My name is Jane and I care for my 19 year old daughter, Nicole, who has several congenital heart defects, Eisenmenger's syndrome and pulmonary hypertension which is a rare, life-threatening, incurable and progressive lung disease that causes blood pressure within the pulmonary arteries to become higher than normal. She also has several other health issues that are not as severe. I have two blogs one is "A Day in the Life" which chronicles Nicole's diagnosis and our everyday life. My other blog is "Let's Get Organized" which chronicles my struggle to get the clutter out of my house and get organized.

2 thoughts on “My Question of the Day…

  1. Trish

    Jane, I’m so happy you post here because I think aside from how we help each other with our caregiving issues, I think we help each other with our teenagers! Nicole has health issues on top of being a typical teenager but the behavior she exhibited today is very familiar to this mom. My stepson is out of high school now but when he was in school or had things to do, he would roll out of bed 10 minutes before he had to leave the house. Sometimes 5. It drove his dad crazy! It was Christopher’s way of asserting some control over the situation and showing he had some power. He would also act surly and mumble (which drove me crazy). Very typical teenage behavior (although it’s pretty infuriating sometimes!).

    The man at the appointment has his own issues and doesn’t see you interact with Nicole on a day to day basis. I’m sure he meant well but I’d take what he said with a grain of salt. He saw an interaction between the two of you without knowing everything else that had happened between you.

    You know how much to push Nicole and when to back off. I wouldn’t put more stock in the parenting advice given to you by acquaintances (or me for that matter) than you do in your own gut.

    With that in mind, take this next thought or leave it: It might be a lot of pressure for Nicole to think she has a great purpose to fulfill here. We know she does but it might be too much for her to try to live up to that right now. As teenagers grow up, they will grow into their own and discover their own purpose.

    Good luck, Jane. Teenagers can be challenging. :-)

    Reply
  2. Avatar of Bette

    Hi Jane,
    Balancing school, therapy, doctors appointments and bloodwork, with the things that Nicole really wants to do, must be so frustrating for her.

    I wonder if there’s a way to sprinkle the “fun” things in, with the not so fun things of the day. She finishes math and then can spend 20 minutes on the computer, or after therapy she has a certain amount of down time before trying to make up schoolwork. It might make for a little schoolwork at night, but maybe for Monday thru Thursday it would be worth it…just a thought.

    You continue to support and watch and address Nicole’s needs. You should feel really good about that Jane. Thank you again for sharing your quiet perseverance. That’s the part of “invisible” that I see. You’re always there – assuring that the right decisions are made for Nicole every day. Others may not always see it, but Nicole does and we do.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>