Guilt is a dark shadow that creeps into our minds and hides while we are overcome with our own self-inflicted burdens. Unfortunately, every human being experiences it. Once a parent holds their child for the first time, they become engulfed with the love they share. At the same time, while you are basking in the joy of your new child, the weight of guilt starts to settle in and you can feel the entire world resting on your shoulders. Not soon after your child is born, you ask yourself a million questions. "When will he roll over? Should I be practicing rolling techniques?" "Is she suppose to be sleeping through the night? What did I do wrong?" The questioning of your own ability as a parent continues into different avenues. Over the years, making a decision about daycares, schools, friends, and extracurricular activities can be completely overwhelming. Parenting a special needs child can take guilty feelings to a different realm of questioning "What if I caused these struggles?" "Am I doing enough? Will he every talk, walk, or eat?" The constant banter of guilt can consume your thoughts.
Last month, Jude and I were in our normal Wednesday routine of speech, feeding, and aquatic therapy. We had an hour and half time lapse until he had Young Athletes practice. Due to the lack of time, I headed to the grocery store. I parked our car under a shaded tree in the back parking lot. Once I was settled into the backseat with Jude, he ate his purred dinner and completed his medication regiment through the gtube. He quickly fell asleep. In hopes not to wake him, I crawled into the front driver's seat. Without any warning, my eyes filled to the top with water and in an instant it all came splashing down onto my face. Feelings of sadness and guilt enveloped me. All I could think was that my two and half year old never gets time to play on a playground, play with friends, and explore at home. Instead, I am feeding him dinner in a parking lot because his day is so busy and we do not have time to stop at home. The past two and half years have been filled with doctor's appointments, six therapies, twelve surgeries, and more sickness than I care to remember. If I don't take Jude to physical and aquatic therapy, he may not be walking. If I don't take Jude to occupational and speech therapy, he may not develop safe sensory input or learn to communicate with anyone. If I don't take Jude to feeding therapy, he may never eat solid food or feed himself. Slowly anger took over my emotions. Why is this the life for my fun loving, always curious, sweetest boy in the world? Why can't he just play or run outside? Many times, I place this unnecessary blame on myself. I took a long, deep breath and dried my tears. In the rear-view mirror I could see Jude sleeping so peacefully. I decided to consciously remind myself that, even though I do have to take drastic measures for Jude to learn functional living skills, those decisions have supported Jude in beating all expectations. Most importantly, Jude has remained so happy because he knows he is loved.
Every parent has crucial and gut-wrenching decisions to make for his or her child. Making decisions on what Jude needs can be life threatening, imperative for his development, and emotionally exhausting. Some days, I wish I could fix everything and just let him play at home. On the other hand, when I observe Jude I know the guilt is unnecessary. He reminds me that he is happy with his life by tight hugs in the morning and big smiles as he is racing into therapy. It makes my guilt of his not "normal" childhood melt away. I know it won't be the last time I feel guilt, but I know now the best way to overcome my guilt is watching Jude flourish...and of course, soaking up all of his smiles!
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