For the past 3 years I have been non-stop trying to get the best care for my daughter Emmy. Emmy, 3 years old, deals with a lot of GI issues, allergy and food intolerances, sensory processing disorder, anxiety, control issues and possibly more. Our life has revolved around her appointments: allergists, pediatrician, GI docs, occupational therapists, feeding therapists, and ENT. Anything and everything that they have asked me to do, I have done hoping to see improvement. My focus has been on her feeling good, gaining weight, growing. I have made 90% of the food she eats from scratch, constantly searching for new ways to make things as foods were taken away from her diet. I am constantly looking for ways to make her feel better so that life isn’t so scary, so that she isn’t crying the majority of the day. I am trying to help her to find ways to give up all the control that she “needs” to have. I am managing all of her medications, making sure that she gets them and that they are formulated properly. I am reminding myself to bring the picture schedules. Making time to create picture schedules and write social stories. Reminding myself to incorporate her sensory diet into life’s day to day. I also worry not only about her but also my older daughter Stella who is dragged to appointments and deals with the stress of our life.
I am tired. I am overwhelmed. I feel very alone in all the chaos of life. My friends and family while supportive don’t get it as they don’t live this life on a day to day basis. I don’t want to constantly burden them with my day to day as they all have a lot going on as well. My husband is coming to terms with our life, but can’t deal with things the way I need him to. He doesn’t make the effort to learn all that he needs to know, so the burden is on me. So even when she is not in my care, I need to prep for the time I am away. There is no break. It is exhausting.
I am sick of people judging the way I handle life. I am sick of hearing peers and some family saying that she seems perfectly fine. I am sick of feeling guilty about feeling sick of it all when I know there are people who have it worst. Frankly, I am sick of dealing with all of it. There are so many days I would rather stay in bed. So many days I would love to drive off and leave it all. Let someone else take care of it. Instead, I smile and joke about the craziness of life while inside I am crying.
This week for the first time, I told the therapists how overwhelmed I was. I was afraid that they would see it as a failure. I received compassion instead of critique. So I will take a break this weekend and start again, start fresh. I will snuggle with my beautiful mop topped Emmy, breathe in her sweetness and pray that things will get easier for her, for both of us.
I know it will get better, it will get easier. I know I need to be compassionate with myself. I know I need to be better about asking for help. I will make more time for myself. I need to, not only so that I can get my sparkle back but also so I can be a happier mommy and wife.