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Sunday, December 7, 2014

Losing Part of Ourselves

Sitting here thinking back to my high school reunion last weekend, going out with my sister-in-law, niece and Becca to the mall the other night and talking to a friend this afternoon, I realized I have lost a part of myself over the years. I am sure, Brian has as well...Becca has probably had a hard time figuring out who she is...at a really hard time in a pre-teens life. I would think given our situation this is "normal".

Leaving the house is getting harder for Ian, we don't go out much as a family or at all. One of us is always home with Ian. We are going to start working on him using his in-line humidifier more often to see if we can get him out a little more. Getting out will do all of us some good. When you are in the house most of the time and you do get out, you feel strange. I remember when the twins were first born and I came home, Brian and I had to go to Target, I felt as if everyone was staring at me. It was as if people knew I was on bed rest and just got out, as well as that my babies were in the NICU. Just like riding a bike, you remember how to do it. As my outings went on, it did get a little easier to be out. 

When talking with others, you want to talk about other things and you try, very hard, but then you realize, it has become your life, it has become you. As much as you try to be more, to be about other things, you aren't. It has become you, it starts to define you....you are the caregiver of a terminally ill child and your life has become that. It was hard once I realized this because over the years I have tried not to become this, to not lose myself. I have also realized this was out of my control, no matter what we would have done, it would not have made a difference. This has become our life. I know this will change, however, I don't like what needs to happen in order for the change to occur....in time will I become something else and how will that feel.

For now, we will continue with our lives as they are, taking care of each other in whatever manner we need to.

2 comments:

Lauren Agetstein said...
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Anonymous said...

Sherri Asher Sending hugs!!!

Sandra Huller no-matter-what-you-are-and-ALWAYS-will-be-the-good,kind-caring-person-you-have-always-been....THAT-will-NEVER-change!

Ann Brown Gorton Thank you for allowing us to read this. We all love you and the family. xoxo

Lauren Agetstein I once heard the saying too that you may or may not have heard before. I think its a very true saying. Have you ever heard the saying. "When God Creates Us He Does Not Make Mistakes"

Julie Kaplan Love you! 😙

Sherie Bober Rubin Thx for always sharing your thoughts. You always give us something to think about. Never change 😘

Marlene Ettlin ❌⭕❌⭕❤💜💜

Jennifer Paradise Baker your strength amazes me more and more!

Alicia Katznelson Broth Marci, I hope your writing helps you even a fraction of as much as it helps all of us. Thank you for continuing to share your journey.

Gila Biegacz thinking of you

Connie Rosenthal Berman Love you! All of you!! Xoxo

Keira Silberstein Thank you for being brave enough and strong enough to let us in to your innermost thoughts and feelings. I wish I lived closer to you so I could visit and help you. All I can do is send you good thoughts and prayers.

Deborah-Jo Essrog Stay strong always. You have amazing grace and wisdom that most people can't fathom.

Lara Turkel Fruman XOXO

C. L. Valinoti Quillen Thinking of you