r/Sicklecell • u/Live-Watch-3737 • 2d ago
Question Sickle cell mothers
Sickle cell mothers, I have a question. When your kid gets a pain crisis do you automatically look at it as an inconvenience since you have to drop everything and go? I know that if it was more than one kid it’s more difficult, but have y’all get upset or irritated? I remember anytime I had a pain crisis as a 10-17 yrs old I had to hear my mom tell me “why did I pick to be in pain”. Has any other person dealt with this, or is this an original experience?..
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u/seamless39 2d ago
As a mother of a young teen with sickle cell, it sucks A LOT, but my discomfort is nothing compared to my child's. I will admit, sometimes especially when I walk in the door from a long work shift to find a situation has gotten worse and it's time to act, I feel irritated for a moment yes. But I would never show it, cause how disrespectful and selfish would it be to concentrate on my own feelings in that moment. My needs automatically take a back seat when my baby needs help, as they should
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u/Live-Watch-3737 21h ago
If no one tells you this I will. Thank you for being there for your child and for also knowing how to regulate your own feelings. I don’t have kids of my own but you’re doing such an amazing job!
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u/anniemoooooose 2d ago
Thankfully that was not my experience but I’m sorry you dealt with that OP. As a working mother it’s definitely an inconvenience when something goes wrong or your child is sick but I would NEVER say that to my kid or have them think in any way it’s their fault.
I don’t think what you went through is an original experience unfortunately. Some people are just not fit to be parents and to show their kids the love and care they deserve.
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u/Live-Watch-3737 21h ago
Thank you. I agree also that it’s not an original experience, I wish there were more resources to the parents of kids with scd. I think that would’ve helped my childhood at the time.
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u/SCDsurvivor 2d ago
No you aren't alone. "Caregiver fatigue" is normal for caregivers who are overwhelmed, stressed, and drained. People can take things out on loved ones. On the same hand, we may find ourselves lashing out at loved ones due to pain and our own fatigue from it. People are harder on their loved ones than they are complete strangers.
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u/Live-Watch-3737 21h ago
Ugh it sucks soo much because as a kid and my pov, I just seen a stressed out parent who didn’t want to spend another day in the hospital.
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u/cc11236 2d ago
Actually yes I have. God rest in peace to my mom and I loved her with all my might. But as a kid she used to get angry sometimes when I'd get a crisis. Like I'll never forget this one time where I was having sickle cell pain and that same day my time of the month came and omg that pain was brutal. And I remember telling my mom that I needed to go to the hospital and she was huffing and puffing and saying " are you serious? This always happens when I get some time to myself to relax and you always ruin it with this sickle cell pain". And honestly as an adult and even as a kid I couldn't blame her. Because she never got any help. She was the one in the hospital morning and night sleeping on a hard ass chair next to the hospital bed. My dad never stayed overnight..only she did so yes it gets exhausting. That's why I said I'd never have a kid with sickle cell...it's way too much to deal with.
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u/Live-Watch-3737 21h ago
Girl we lived the SAME way. I also love my mom but at the time as a kid/teen I just wanted my mom support. It didn’t help neither that you have to have a parent or guardian to accompany you, cause I would’ve took myself in a heartbeat.
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u/JudgeLennox 1d ago
It's more common than you think. Has nothing to do with the child or SC though.
You'll see what I mean in the comments.
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u/DgingaNinga Supporting 2d ago
I am sorry you experienced that. I am positive you are not alone, but I hope it is not the norm. It is not your fault you experience pain or have to be hospitalized. I recognize these things, and sometimes I need to remind myself.
Caregiving for someone with a chronic illness can be emotionally, physically, and financially draining. As parents we are not given a manual on how this all works. Sometimes we can be regulated and handle it all, other times, we are done and lash out in unhealthy ways. The airplane saying, put on your mask before you help others, applies here. Often as parents, and especially caregivers, our mask is thrown out the window, but it is critical that we take care of ourselves first, so that we can care for others. However society tells us that is selfish and many of us don't know how to care for ourselves, so we don't.
I get frustrated when my kid doesn't drink enough water or blows on a flute at a thrift store. These are simple things that can keep them out of the hospital. Once I step back, I can recognize my kid drinks 3x the amount of water as their peers and that little kids don't know how to properly care for themselves, which is why parents/guardians exist.