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From a child’s eyes…

  • DSN Volunteer Ambre Minty
  • Sep 25, 2018
  • 3 min read

Hope you all are well!! I’ve been busy with summer break and had a few health issues. Hopefully we’re heading in the right direction now!

For this post I wanted to do something different. My son is super excited to be a part of this! He has such a heart of gold. He’s so compassionate, understanding and just amazing. He is a big help. When we go out to eat, he asks the waiter about peanut oil, and such due to my severe peanut allergy. He makes sure it’s safe. He’s my little big helper. I see he gets upset sometimes when I can’t do things other moms can. I can’t walk through Disney, or go play soccer with him. I can’t go sit at the beach all day due to my heat intolerance.

As much as I know he’s a happy child, I really wanted to know his view on all this. How he sees it. So I sat him down and did an interview with him. He’s super excited to be apart of this. Without further ado, here are his answers.

From a child’s view..

1) When I first got sick, and had to adjust to doing things, how did you felt about that? I got sad, because you couldn’t do fun stuff with me anymore.

2) Do you ever feel angry? If so, why? Yes, Because you’re always tired, we can’t ride bikes or play soccer.

3) What is the hardest thing you’ve had to face in having a mom that is chronically ill? That you’re always tired. That we can’t go to Disney or the beach. That you can’t walk around fun places. Even if you use a wheelchair, I don’t care, I just want to go to fun places with you.

4) Do you prefer when I shield you from the bad days? Or do you want the truth of how things are? Sometimes I would prefer you to lie about the bad days, sometimes be honest. If you could give parents and kids new to this any advice, what would it be? For kids, Jo

urnal your feelings. Be honest about how you feel. Adjust to doing things at home. We play board games on bad days, we read together, watch. movies. We do what we can together.

For Parents: Your child will get angry, but understand their feelings, and talk them through it. Find things to do at home together that’s low energy. Make memories together. You don’t have to go somewhere to make good memories.

5) If you could tell me anything about how you’ve seen me struggle with my body, what would it be?? You’re a good mom, you do everything you can for me. You make sure i’m happy. And You need to use your walker more, dad says so too.

6) Do you know how much I love you? Yes, I do.

Well, that was enlightening. He’s wise beyond his years. He’s honest, and understanding. In trying to hide things from our kids, to protect them, but maybe that’s leading to more anger, more resentment. We should open a dialogue with them about it. Explain what we can and can’t do. Most importantly, make memories together. He’s right, you don’t have to go places to make memories with them. We do movie days/nights. We play silly games on the iPad. We play board games. We find ways to create those memories that we will both cherish.

I know our health can take a lot from us, but it’s not just us that it’s affecting. Often times we push our bodies to exhaustion and pain until we simply fall. We need to stop doing that. That does more harm than good. We need to listen to our bodies, we need to adjust what we do to be within our limitations. We need to adjust and adapt to what we do to have spoons to make these precious memories with our kids. I know it’s not easy, I know there will be trial and tribulations. There will also be laughter and joy. Our kids don’t need expensive things, or expensive trips. They need us, they need our attention, and time. Simple things can make great memories.

 
 
 

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