I make an effort when writing to be honest and truthful as much as possible while at the same time aiming to have a positive outlook in regards to the daily struggles of being a parent of a child with special needs (or even just being a parent in general). Most of the time this is not a challenge for me as I truly believe that we are very lucky but sometimes I have a bad day (or a bad week) and I struggle with being able to let that be – to just be mad or sad or frustrated and know that it’s okay. One bad day, one bad week is not going to determine the rest of my life and just as we acknowledge how hard some things can be for Charlie to deal with or experience, there are situations that are as equally challenging for us as his parents.
Recently a friend from college reached out to me after reading my blog and sent one of the most thoughtful and supportive notes that I have received. I have not seen or spoken to her in a very long time so the fact that she took the time to reach out was a beautiful gesture. Her message was perfect because she comes from a place of knowledge in that she too has a special needs child and while our situations are completely different, it was evident that she just “got it” and since she has been going through this longer than I have, her advice was greatly appreciated. While all of her points were important, I personally found the following piece of advice to be the one I needed to hear the most – so here it is:
“Give yourself a day or even just a few hours every few months to hate the situation. I realize that sounds kind of dramatic but even if this did happen for a reason or if there is a silver lining – it still sucks. I have what we now refer to as “I hate hearing loss days”. They were probably once a month at first and now are maybe twice a year. They are usually those days where something happens that you get a little punch in the gut reminding you that your child needs to work so hard at things that are so natural for others. I don’t feel sorry for her (advice that was strongly emphasized to us at her diagnosis) but I do hate hearing loss and what it entails. I hate the she asks why she can’t hear like her sister and friends, that she is scared to hit her head because she could go deaf, I hate that she knows what the word deaf is. But I have found giving myself those little windows, accepting it and moving forward has helped.”
Reading these words made it clear to me in that moment that learning to be okay with having a bad day and even more so learning to forgive myself for being angry, mad, frustrated or sad is a key ingredient in surviving daily life. Forcing myself to always put a smile on, or always view the situation with a positive perspective is exhausting and sometimes just not how I am really feeling. Wallowing in pity or anger is definitely not the way I want to go – it doesn’t do much good and certainly will not accomplish anything. That being said, giving myself permission to have negative feelings is (I am learning) an equally important part of the process.
This past week was not necessarily bad – but there were a lot of really tough moments that snowballed into a hard week. Nothing massive occurred but sometimes it’s just a bunch of little things that leave me more emotionally exhausted than a major event or meltdown. I guess it’s sort of like if you eat healthy most of the time but have a bowl of ice-cream every night and wonder why you cannot lose weight – those tiny bowls simply add up. This past week, we had a struggle every single day about the morning routine and going to school. Every bath was met with crying and begging. An afternoon haircut on Wednesday left me covered in Charlie’s hair and tears with arms numb from holding him down and a traumatized little boy. All of the planning and treats for his two school parties in celebration of Valentines day went mostly unnoticed by Charlie and made me wonder why I keep trying so hard to make holidays or celebrations special since he either does not understand or is just not interested. The weekend birthday party for a school friend was not our worst party experience but it was definitely not easy – there were fits and meltdowns and hitting and crying and in a situation like a party with his classmates, his differences are highlighted which makes me hurt. As I said before, nothing major happened and it was probably not a very different week than most. It just seemed that a bunch of little things added up over the course of the week that left me feeling down. I said nothing, I kept it together, and pushed on because that is what we parents do and frankly it is not as if I could sit down and explain to my 3 year old that mom is tired of dealing with all the battles so could we just cool it for a bit?
My tendency to keep on keeping on and pushing these negative thoughts aside, resulted in a build up of emotion that was negative and sad. My friends words kept coming back to me and I realize that she is completely right – giving myself the permission to have an ” I hate this” or I hate autism” day or week would probably alleviate a lot of pain and anger and also allow me to start the week with a fresh mindset.
The more I think about it the more I realize that this type of break is something that could be utilized to manage any difficult situation we are dealing with in a more healthy and productive manner. By giving myself some time to just be pissed or upset, I could then move on with living my great life. The alternative would most likely result in me smiling through the negative emotions and letting pieces of that seep into every single day of our lives which I know from experience is not a happy way to live.
So to the friend who took the time to provide some great advice and wisdom, thank you. I deeply appreciated your words and needed to hear them more than I knew. As I finish typing this post, I already feel lighter, happier and less stressed than I have in days so I guess it really does work after all. Most people dread Monday’s but I am sort of looking forward to starting the week fresh and free from the bad feelings and the knowledge that it’s just a bad day, not a bad life.