STORIES FROM OTHERS: What’s it like to live with a spoonie parent?

NOTE: This interview was taken from Spoon Serendipity. I thought the sentiments were really nice and made me feel a little less guilty about how I parent my own daughter.

If you asked me what the hardest thing to deal with when my mama is in a flare up or having a hard time it would be that I feel helpless. It’s something she has to live with and I can’t do anything about it. I wish I could help more than I do but I try my best to be there for her and make things easier.
It’s not like every day is a hard day or a bad day. We have had amazing memories made and been able to go do some really cool stuff together. I think I enjoy little moments more and know how to treasure time when those little moments happen. It’s all about perspective. Seeing things differently is something I try to do but it’s not always easy.
Would I change anything about the way it is? No, I would not. Everything happens for some kind of reason. I think this has brought us closer together and formed a strong bond between us. It’s taught me a lot and made me more aware of the fact that so many people suffer from chronic illnesses and you sometimes don’t even know. You really just never know what someone is struggling with so always be kind. You could probably go to any city and walk past some people on a sidewalk and you wouldn’t even know they are sick. Not every disability looks the same and are not always obvious at first glance.
Do I ever feel sad, angry or resentful when my mama can’t do things that other moms can do? No, not really. I understand how hard it is for her and I just want her to be comfortable. I’m not into all of the same things other kids my age are so I don’t feel like I’m ever missing that much anyways and besides, I really enjoy just hanging out with my mama- watching movies, reading, or even doing different things in the same room.
I try to make things easier for her by: just being there for her, helping with daily chores (even ones I wasn’t asked to do, sometimes!) and just letting her know that she isn’t alone in this and I love her.
To other kids with parents who are Spoonies, just remember that your parent loves you. It probably hurts their feelings more than it hurts yours when there is something that they cannot do for you or with you. Try to remember to be thankful that you have them in your life and that you are a family that has to fight together not against each other.
That kid is pretty amazing, huh? I did a similar interview with my daughter several months ago. Here’s the link.
How do your children feel about your illness? Tell me in the comments!
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