In the last boundaries class Denise gave us an assignment in which she asked what do you blame yourself for. I wrote how I blame myself for Nicole’s illness and how because of my choices or lack of I am to blame. It was very difficult for me to write. It was very difficult to give this the name of guilt/shame/blame.

I will be having a birthday this week and while I would rather forgot that piece of information it is one of those “milestone” birthdays and I know my friends and family will not let it be forgotten. I find myself a little discouraged. Every year around this time I reflect on what I have accomplished for the year and during my life. I know myself and it doesn’t matter what I have accomplished it’s not good enough. I know that I have accomplished things that I am proud of such as getting the policy changed to help other families who need financial assistance for one of the PH meds through a pharmaceutical company and this is how/why we went to Hawaii. I have gone back to school etc., etc.,

On the flip side of this though I think about all the things that I have done wrong. I am going back to my friends guilt/shame/blame when I think about my role as Nicole’s mom and how I have probably done her a disservice. I have never really made her do many chores or have a lot of responsibilities around the house. Some of this reasoning was because she was sick a lot as a child and because of very high anxieties that would set off what I call “meltdowns”. She is 17 now and would she be able to go out in the world and take care of herself? I believe the answer is “No”. Nicole is extremely intelligent but she doesn’t have much common sense, motivation, or drive. She tends to be lazy but don’t we all for the most part? I think for Nicole her self-esteem is very low … I have tried everything to get this up for her but I think her history of making friends and them betraying her over and over has contributed to this. She is naturally a very shy and quiet girl. While my hopes and dreams for her have changed since we found out just how sick she really is I still know that she can and will do great things and be a great influence on others.

I have talked to the attorney who represented us in the bankruptcy about getting medical power of attorney so I will be able to continue to make all the calls to doctors, hospitals, lab, pharmacies etc. that I do now after she turns 18. This is where Rick and I disagree. He thinks I need to teach her how to do this all. While I do believe this is true in theory but in reality I don’t think that she is emotionally, mentally, physically ready to do this. She won’t even answer the telephone (unless it is me), let alone talk on the phone. I just feel like I am going to loose her in so many different ways which I know is very selfish of me because I do want her to make an impact in the world.

I know I wrote about this a few months ago or so. I nominated her for Make-a-Wish. I know it isn’t that she doesn’t want to do it but it is she doesn’t know what she wants to ask for and what if she makes the wrong decision. I did get the application form but haven’t heard anything since I faxed it back. I believe at this point they contact her doctors or should I say two of her doctors that pertain to the life-threatening illnesses she has.

My goal for this year (through to my next birthday) is to finish school become certified, finishing school for Nicole and have her graduate, continue to be a voice for Nicole even though so far this hasn’t happened much or at least the way I thought it would, still have our head above water financially and have Nicole stable insurance, be healthy, be happy, get the clutter out of my house, my mind and even lose some weight, and last but not least get rid of my good friends guilt/blame/shame for good and forgive myself for my past mistakes.

Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS

Profile photo 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.

9 thoughts on “Guilt/Blame/Shame….

  1. Sharon

    Jane, first of all Happy Birthday! I think your goals are great. It is important to set goals. You may not reach all your goals this year, but that is okay also. Goals are just something to reach for.

    Jane, when I was a caregiver for my husband I often felt guility for not being patient enough. I mentioned that to my pastor after my husband’s death. His response was “you were processing also.”

    Remember, Jane, you do things for Nicole that no one else is willing to do. Are you perfect? No, but no one is perfect. I think the trick is to distiguish between true guilt feelings and false guilt feelings, but with both we need to work at releasing them.

    You are not perfect Mom, but you are the best possible Mom for Nicole. I am quite certain Nicole would choose none other than you, if she was given a choice.

    • Profile photo of JaneJane Post author

      Hi Sharon:

      Thank you. I know it is okay if I don’t meet my goals. I just have to strive to do better and keep plugging away. I know I’m not a perfect mom and nobody is.

      Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS

  2. G-J

    Hi, Jane! Happy Birthday!! My birthday is this week, too! (Milestone +1) You are an amazing woman, mom, wife, and advocate for your daughter! For your birthday (which day this week?) consider looking back and patting yourself on the back for all that you HAVE done and HAVE accomplished. You’ll see there is a lot. No, probably not everything you wanted to do this year. I don’t accomplish everything I want to do in a given day, week, month, or year! This year, release the guilt/blame/shame. That is one thing you don’t need to continue to own.

    Happy Birthday!! :)

    • Profile photo of JaneJane Post author

      Hi G-J:

      Happy Birthday to you! Mine is Wednesday. It will be the big 50! I will try and do what you suggest. I don’t accomplish most of what I want to either.

      Jane~ mom to Nicole, VSD, PAH, Eisenmengers, BHJS

  3. Profile photo of DeniseDenise

    Hi Jane! Happy Birthday! I think it’s great to reflect and to set goals. I also think it’s great to celebrate. So, as you reach this milestone, how will you take a moment to celebrate?

    And, perhaps most important, how will you give yourself a start fresh? We all have a past full of mistakes. We prevent a future of past mistakes when we decide to start fresh, to learn lessons so we can do and be better. Perhaps the best present you can yourself on your birthday is a second chance for the second half of your life?


    • Jane

      Hi Denise:

      I guess I focus too much on what I don’t accomplish rather than what I do. I know that I do this. I will try to give myself the gift of a fresh start.

      Thank you for being such a blessing to me.

      Jane~ mom to Nicole, 17 yo, VSD, PAH,Eisenmengers, BHJS

  4. Trish

    Happy Birthday, Jane! It sounds like you have accomplished so much and have wonderful dreams to accomplish more. I wish I knew of a magic pill to silence that voice in your head that says “but it wasn’t enough” (I hear that voice too – about me, not you). :-) I agree with Denise and the others — let yourself be free of the negative “friends” and start fresh. No one can look back and say they haven’t made any mistakes. Cut yourself some slack and a huge piece of birthday cake (because trying to lose weight on your birthday is just wrong). :-)

    • Profile photo of JaneJane Post author

      Hi Trish:

      Thank you. Yes, I need to cut myself some slack. I wish I had that magic pill too :o). Yes, I need to make a fresh start and I will figure out how to do it and hopefully by my next birthday I can say that I have done this.

      Jane~mom to Nicole, 17 yo, VSD, Eisenmengers, PAH, BHJS

  5. Profile photo of Bette

    Hi Jane,
    Happy Happy Birthday – I will soon approach this milestone as well – we’ll work together to modify our perspective on that number, okay?

    You are a wonderful voice for Nicole. Even though one day, she may take on some of that voice – she will always need you. You are a wonderful mother, caregiver, and friend to Nicole. She is so blessed to have you.

    I think it’s such a big step to be working toward saying good-bye (for good) to your ‘friends': Guilt/Blame/Shame. They don’t do us a bit of good – it’s so smart of you to let them go, so you make room for all that you want your day to entail. They take up so much time, effort and space. Time and effort we can use toward other, so much more important, things.

    Thinking of you and praying for you to be able to move forward stronger than ever. (:


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>