Shield HealthCare Caregiver Story Spotlight
“Life With The Bag” by Shari N.
“It’s funny for me to write a story about myself and how I have found caregiving to be rewarding. I became a caregiver over 15 years ago. I thought I was just another woman having a baby but seven days after Jacob’s birth, I became a mother, a caregiver, and ultimately an advocate. My precious baby boy was born with a disease that resulted in life support, 5 surgeries and by 18 months old, Jacob would be left with a hearing impairment, lung damage, multiple scars and an ileostomy. So many things were going through my head as I sunk into the depression that can happen when your baby is disabled. The depression came when I saw the situation only through my eyes. When I stopped being worried that I couldn’t handle the demands, I became empowered by the situation. I embraced the opportunity to help Jacob grow into an independent fully functioning member of society just as I had expected to do when I got pregnant.
I think that the way I coped in the beginning was to laugh as much as possible. This was made easy by some ludicrous situations that I encountered. Once, while changing Jacob’s ileostomy bag when he was about 3, he coughed as I was about to put a new bag on and I was hit by an undigested olive! Another time, Jacob and I had a memorable laugh together. While at the bookstore, we both looked down and saw a full, poopy bag on the floor. We looked at each other and Jacob said,” Oh look, someone must have lost their bag.” Of course, the bag was Jacob’s but it was the beginning of both of us being healed and accepting that we weren’t the only people dealing with an ileostomy and that it was perfectly within reason in our minds that this could be someone else’s bag! Of course there were times of profound sadness and feelings like “Why my child?” Once, I came in to Jacob’s bedroom and found him laying on the floor with his shirt off amidst his Thomas the Trains. I asked him what he was doing and he said he was using his surgery scars as extra train tracks!
Now as the mom of a teenager, my caregiving focus has changed. When Jacob was about 10, I suddenly realized that I was providing too much care. I wanted him to be independent but was worried that if I didn’t give him the same level of care “something terrible might happen.” Slowly I began to realize that every time I did something for him that he could have done by himself, there was a loss. Jacob was missing an opportunity to help himself! I had to change my goal from being the best mom and caretaker to being the best advocate for Jacob. I needed to give him the power and the permission to control his own life. Every act of independence around his disabilities became a victory for Jacob and his future.
I know that Jacob and I are envied by others because we are very close. I have cared for my son in a more intimate way for a longer period of time than most parents care for their children. We share a deep trust and love. Jacob knows that I support everything he tries to do on his own. It is hard for me to see Jacob struggle with the obstacles his disability has caused but I am also proud to see how Jacob has been able to accept himself and move forward. I wouldn’t wish being a caregiver on anyone but if you are in that position, consider yourself lucky because you have the possibility of an extraordinary relationship with someone and an opportunity for personal growth.”
