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.
6 comments:
Dear Anonymous,
I have never commented on a post here, though I have been tempted. I cannot even imagine how hard it must have been to write this down, let alone live it out, but I can say, that what you wrote resonated with me in a way that not too much has recently. Bravo to you for being able to write out what some families must be wishing they could find the words for and Bravo for doing it in such a powerful, yet sensitive way. You sound like a wonderful human being and how you relayed your frustration and love in what sounds like a stressful situation makes me just want to stand and cheer for you and for all the other families dealing with an ill child or family member. Your post gave me a glimpse of the "other side of the coin" and I thank you for that.
make copies of this and send them out to each individual member of your family. It's a great letter expressing how you are and what you need at this time. Might be that's all they need to hear to understand how to cope and help you cope.
Michelle
When my sister's son was in a serious accident and needed medical care for months during his coma, my sister got more than fed up with well meaning "experts" on how she should continue with her life and address his medical care--it also burned her out to constantly relay information to people on a daily basis.
Her solution was to start a blog and give quick, daily updates about his condition--no more timely phone calls,emails, etc--people just logged on and saw what she wrote. Some days it was one sentence, some days nothing, some days it was paragraphs of venting. It really helped her.
Obviously you have a lot on your plate right now, but I was just thinking that at some point, something like that might be of some help to you too. all the best to you, take care xo
Thank you. This was so eloquently and beautifully written. I am a social worker, and I am tempted to share this with my trainees - you have so clearly written what so many of my cilents have tried so hard to say, and what I myself have felt so many times. Thank you, and good luck.
'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.' This comment resonated with me completely. It is so tiring dealing with everyone else's emotions. I also found it amazing how quickly a well meaning person could turn the situation into their own problem. Beautifully written. Therapeutic for you also, I hope.
Sorry for caring. Sometimes we don't know the right words to use or how to react but we do the best we can. We express our feeling the best way we know how and we try to be supportive, however clumsy that may be. Maybe from now on we should just ignore you and your problems so you won't feel so overwhelmed.
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