I don’t have any studies to quote you or fancy terms to write about, I only know my world. I only know what I experience and hope that what I share can help others not feel so alone.
Every time I sit down to write, I struggle with where to start. What condition do I start talking about? Stroke, Hemiplegic Cerebral Palsy, retractable epilepsy, sleep apnea, swallowing disorder, moderate mental delay, asthma, severe allergies, that is all we know of for now. When I do get on the computer to try to research or learn about any of these conditions, I pull up the old trusty google. These words comes up more often than not, ‘people who suffer from…’ Then it hits me, I don’t like that word, suffer. I mean the definition is that we experience something bad or unpleasant. That makes sense, but to me it should be used in more extreme circumstances like, ‘he is suffering from cancer,’or ‘she is suffering from the loss of a child’. It just doesn’t seem right for us to use that word.
Day to day, I don’t feel like we are suffering. He is happier than a lot of people I know, that do not have those diagnosis. He has days that are good, days that are bad. I feel that the good days outweigh the bad. It wasn’t always that way. We had time periods, yes plural, where the bad was 24/7. Does that make us appreciate the good days even more? Sometimes. But the hard core truth is, I live in fear of those bad days returning. Fear is definitely another subject for another day. Was my child suffering during those bad days? Yes, but that word never came to mind. Were we suffering during those bad days? Yes. I can see that now. I still don’t like the word but it is the truth. How do we overcome suffering? How do we live day to day knowing someone we love is suffering? Share. Let your tribe help you through. Always get up and keep trying. I tried. Every. Single. Day. Every decision, every non-decision. Every path taken or not taken. Every tear shed or not shed. But there is something I did wrong. I kept quiet. I didn’t share. I didn’t open up. I didn’t tell people that love me how much I was hurting. I didn’t tell them how scared I was every day. I didn’t share the fact I felt like such a failure, that I thought I deserved the hell we were going through. I didn’t ask people to pray for us. I didn’t ask people for love or support. I didn’t ask, but people gave. People prayed, people loved us, people helped us and people gave us support. But I still didn’t open up to them and tell them how things were really going. Medically, or emotionally, so the amount of giving they could do was limited. I didn’t open up therefore I was lonely. I didn’t share therefore it was swept under the rug. Give and take, even in suffering. Who has the strength to give? Give and take, even in heartbreak. Who has the strength to take? I spent a time in my life very lonely.
I have this inner voice in my head that always tells me I can do it myself, that I shouldn’t need anyone else. In fact, I judged people who needed help day in and day out to complete everyday tasks. I also have a fear of failure. If I asked for help, I somehow admit that I can’t do it, and therefore, I have failed. I call this self-induced suffering. Why live this way? One of the many things I need to work on in my life. Take it from me. Share, tell, love, be loved, ask for support and ask for help. Don’t be like me and feel like the only fish in an ocean filled with millions.


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