Posted by Anonymous
To my family and friends:
I’m grateful he means so much to you. I’m grateful for all you do for me. I’m so grateful I have all of you in my life. But you’re driving me crazy. Please stop thinking you know what’s best for me. Please stop ‘owning’ my son’s struggles. Please stop having the emotions I, myself, am not allowed, not strong enough, not weak enough to have. Please stop making it all about you and how you feel and how you think I should feel or deal or breathe or interact.
After his last surgery, many of you texted me that you had “tears of joy” because all went well. I was unable to have tears of anything (joy, relief, exhaustion) because I had to immediately move on to the next step for his recovery. I resent the fact I am unable to have emotions of my own because I’m constantly reassuring you everything will be okay, constantly explaining medical procedures to you, constantly trying to process your emotions so that I don’t even know what or how I feel.
On the flip side of that, I don’t necessarily want to share all of my feelings with you. I don’t want every conversation to be an in-depth look into how this is affecting me. If I’m upset, can’t it be because they were out of my favorite ice cream at the store? Do you have to automatically think the worst any time I do show a glimpse into how I feel? I have become guarded with my emotions because, most of the time, I haven’t had time to process how I feel in the current situation (see above) and because of those “personal” conversations you all want to have with me. Do you each think you will be the one to break through to me and show me the light on how I should feel dealing with all this? Do you honestly think there is a proper way to deal with any of this?
Stop telling me that I need to be on an antidepressant. It’s not making any of you happier and makes you even moodier than you were before. I am happy. I love my life. Just because you can’t wrap your head around being happy with a special needs child does not mean it’s impossible. I would not change one thing about the last 2 years. They have made me stronger and more appreciative of the little things than I ever would have imagined I could be.
Stop trying to get us involved. I have a four year-old and a two year-old. I’m constantly taking them to school, doctors’ appointments, therapy sessions, and meetings with social workers. The phone calls I make on a daily basis just to get the correct supplies to help my son live would make your head swirl. I have social outings with many of you. I have a wonderful husband I love to spend time with. Just because I don’t want to be involved in the latest community fundraiser or go listen to the “expert on child rearing” I don’t agree with doesn’t mean I’m holed up in depression. Just because I don’t want my four year-old involved in group sports right now doesn’t mean he will be scarred socially and resent his brother for having a medical condition. He’s four. I’m busy. We’re great.
I know you are affected by this and you are invested in this and you love me and my family. I appreciate how you try to show your love and support but please step back and try to see that we’re normal and trying to live our lives as normally as possible. Normal is living life. Normal isn’t medical stuff 24/7. He is a child first, a medical mystery second. He’s a normal child with an abnormal system. He’s part of us and we’re a normal family.
I love you all. I don’t know how I would have made it without your support. I love laughing with all of you. I love being with all of you. Thank you for enriching all of our lives.