Parenting a Medically Fragile Child

 I’m TIRED. I’m going to be real. Taking care of a disabled and medically fragile child is exhausting- physically, emotionally, and mentally. I literally fe like I’m constantly trying to keep him alive. I’m always on high alert. He coughs and I keep across the room to suction him so he doesn’t choke. I contemplate calling 911 almost daily because I JUST CAN’T ANYMORE and I need help, but I usually hold off and manage to straighten him out before it’s absolutely necessary. I have al most all of the equipment they would treat him with in the hospital, next to an intubation kit(who knows? That might be next 😭). I have NO medical education, training, or professional experience, yet here I am, my skittish self who is afraid of anything “gross”, daily performing medical tasks that I NEVER in a million years thought I could do. I deep suction like it’s handing my toddler cheerios. I perform the jobs of respiratory therapists, nurses, and occupational therapists (although poorly😂) everything day. I also work part-time and love my job, but sometimes I don’t know how I can do them both much longer. I also don’t know if I can just be a full-time medical caregiver, either. His amazing nurse is out this week and I haven’t left the house since Sunday because it’s just too dangerous to take him in the car. He will have seizures and de sat, causing me to need to pull over several times to suction, use the pulse oximeter, and put on his oxygen mask. I’m not writing this for anyone to feel sorry for me. I love my life and I love my boy. It’s just HARD. I also know that before I was in this situation, I had NO CLUE what parents like us went through and I’m sure I had plenty of judgments. I think it’s important to be aware and therefore nonjudgmental  when that medical mom may be more distracted or flaky than usual. We are on a constant state of anxiety… we can barely go to sleep at night, just hoping and praying our children make it through the night. I always make Jeff get him up because I know I couldn’t handle it…


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