Guilt and Release of Expectations for the Life Unlived: An Open Letter to my Family

Female sitting in a wheelchair, in front of her brother. They are standing in front of a mural with jungle animals

Today is the final letter in my open letter series, and it is the most intimate and vulnerable of the lot. I have published letters to: myself, my sibling, and my body; but today I will post an open letter to my family. 

I hope in my honesty and accountability I can release some of the more harmful beliefs I hold on to. (Which my family have not put on my shoulders, instead my insecurities and fears.)

The guilt. 

The sadness. 

The regret. 

Each factor in this devastating trio does not help me in any way, rather tries to instill this false idea that I am a burden. 

So, family, this is for you. I know it hasn’t been an easy journey with me these past 29 years, but I appreciate that you did not once give up on me, make me fear that you would abandon me, or penalize me for those things that I could not change- but for you, gosh, I wish I could.

My family.

We have been through a lot in these years haven’t we? I know that you know my love for you, but I do not believe you understand the enormity of that love, truly. I wish that our reality could have been different. I wish that I was healthier. I am so, so sorry that loving me and standing by me has not been easy. I honestly cannot imagine how difficult it is to watch me go through all that I have. Often people tell me “I don’t know how you do it” and my response is,

“Well, I know no other life. I truly don’t know how my family does it.” 

I have memories of each of you shaking as you try your best to hold in tears, anger, or fear as I go through another malfunction, surgery, or immense pain. You hid that to the best of your abilities, and swallowed it down until I wasn’t in sight. 

I am sorry that my conditions put you through that.

While I know you would not have me any other way, I sometimes get sad that I couldn’t be perfect for you. I know that each of you at times have gone a night without sleep because you stay up when pain is bad, or I’m sick, so that you can hear me if I call out. You say that you’re okay, but I see the circles around your eyes. While you have taught me to be strong-willed, I know at times it could not have been easy to watch the world make a judgement on me or my abilities and future, simply because I was dealt a different hand than others.

I regret that you may have adjusted expectations because you had to accept the reality of my conditions and their presentation. While it is true that I have accomplished some incredible successes, I often wonder if you looked at your friends’ children and hoped that I would someday do the same things they were doing. I think back on events like my Sports Days and I realize how different our experiences were. Some kids were winning 1st place, others second or third- for me, well, it was mostly participation ribbons (although I kicked butt at tug-of-war). That being said, thank you for adapting with me and helping me through those events so that I could still compete with my classmates.

Each of you are the heroes of my story. Some people may see me as the hero, but I acknowledge it is you. I could not get through this life without you. I am grateful for you walking every step beside me. It is because of you that I do not give up, and it is for you that I give the most I can to each day!