Throughout my life I have felt helpless in many situations, and at the time those situations felt devastating. And then I had children, and I realized what helplessness truly was.
Before my son Anthony got sick, I was always able to control life with both of my boys. If they skinned a knee, I would be right there with the antibiotic wash, Neosporin, a bandaid, and so much love. I was able to protect my small children in any situation. When Anthony started getting weaker and weaker as a toddler, even though I felt helpless because nobody had answers, I still was in control and could manage everything. I got him adaptive equipment for his issues, and we all learned to adapt for him.
But when he started having seizures and eventually became neurologically devastated, that is when I really understood the feeling of being helpless. This I could not put a bandaid on. I could not hold him in my arms and sing to him and rock him and give him Tylenol to make him better. Now I didn’t know what to do to. I had to rely on so many doctors and nurses to help me learn how to take care of him. Before, I thought a scraped knee was so terrible for my children, but now it was the ventilator he needed to breathe, the feeding tube he needed for nutrition, the pain meds he needed for pain, the wheelchair he needed to be transported, the special air rotation mattress he needed to be comfortable and hopefully help with his pain, and the five seizure meds he needed to partially control his seizures.
As his mother, it hurts me to my core everyday. Because he needs 24-hour hospital level care at home, I need to have nurses help me take care of him. I cannot do this on my own, and that is such a painful, helpless feeling. I have to watch others do his care, and I often wonder to myself if I should express to the nurse that I want it done my way, because I would do things very differently. But then I sit back and notice that their way is just fine, it is not hurting him in any way, so I bite my tongue and let them do it their way.
The point is that a mother should never ever have to feel helpless. But when you have a child who needs so much care, you have to rely on so many people just to keep him stable. You need nurses, doctors, therapists, and teachers, as well as supply companies, pharmacies, and nursing agencies. You have to bite your tongue a lot and prioritize.
And the really sad part is that I have to add my own personal emotions to this already devastating situation. Over 12 years, I have tried to put my emotions on hold, because I have two children and I need to take care of them first. But sometimes, the emotions I have tried to put on hold come out tenfold.
I am a person who for the most part used to be in control of every aspect of my life. When I had children and wanted absolute control of everything to protect them and keep them safe, I could not. I have never felt so helpless in my life.
This is a depressing story, but I wanted to let you know that not everything is a helpless feeling. As a family, we have adapted to our situation and make the most of it. Anthony, although medically fragile and complex, can still smile and somewhat interact with people. Even the smallest things to others are HUGE to our family. Take nothing for granted.