Thursday, December 1, 2016

Everyday Struggle, Everyday Success: Extreme Parenting

I often find myself going thru the daily motions of getting the kids up, out the door and to school, then communicating their needs with teachers, therapists and coaches prior to picking them up, shuffling them to activities and having dinner, then its showers, bath time, medicine, brushing teeth and bed time prayers. This is the very same as most parents, we all have busy routines and hectic responsibilities- it’s the smiles and laughter, the memories made that push us forward. I know that my days may consist of a few more conversations or a bit more planning, but that’s life. I don’t ever focus on the added responsibility of caring for a special needs child- until I do.
 
 I recently found myself so frustrated with my husband for asking the most innocent of questions about Lindsey. I had to take a moment and self-diagnose, “why was I so annoyed?” “Why did this question strike a nerve?” After sitting in the quiet of the house once the kids were asleep I realized that being the champion for Lindsey does indeed take a toll. I have to be the expert on her, I keep all of her abilities, her challenges locked in my mind. I am not only the keeper of her secrets but also the solutions. I know her medical history, therapy history, academic abilities, social success’ and friendships.  I am the one that studies new pursuits, new medical interventions and has candid conversations with other parents in an effort to better her world. I am grateful to be her champion, I am thrilled that God trusted me with her development and I am rewarded with her love. But that doesn’t mean that it’s not hard. I am going on pure faith most days that the elements we have added are the best solutions, that the advice we have sought is the wisest and that her trajectory is aimed for success.
 
 While my husband is an amazing pillar of strength to me and gives us his unconditional support in everything Lindsey- I realized that I was annoyed that night because it was a question I simply couldn’t answer. I didn’t keep all the solutions to why Lindsey does what she does or how to correct it. I was annoyed because it was obvious that even after all this time and all the progress there is still more to be done, and mostly because I don’t know where to find all the answers. It’s tough when all you want is to help and you know in your soul that you simply don’t have all the tools you want to have. We all want to guide and protect our children, we want to steer them to leading exceptional lives, but how do you do that when you don’t know why a child suddenly screams or is crying hysterically for no obvious reason, how do you explain to others how to handle a situation when you are blind to why it’s happening. Ultimately, these are moments, they pass and fortunately they happen less and less but they still make you question why as their mother you can’t “fix it”.
 
 This post is an effort to give all parents especially special needs parents’ permission to feel overwhelmed, it’s ok to be frustrated; it’s ok to not yet know all the answers to your child. It is unrealistic to think you will ever hold all of the keys, so appreciate the moment when you do have the insight and enjoy the good moments. Those precious good moments when your child looks at you and without words lets you know that you are a super hero to them. The best part of being a special needs parent is learning to appreciate the little moments, the sweet silent smile when they are victorious at a task or the joy they have when they communicate a desire and you are the only one who “hears” them. Savor each milestone and know that in large part it’s happening because you are supporting them with all your love and ability.