After I wrote about aggression last week, I wanted to chase it down quickly with something lighter and more positive. I tried writing this post several times, but my week spiraled out of control pretty quickly, and I dug a tunnel in the ground and stayed there for a while. I knew when I sat down to write, my words needed to be sincere and heartfelt, so I gave myself a few days to dig out of my dark tunnel. Together, Danny and I have had to make some hard decisions and we have some more hard ones to make, but I’m finally feeling like I can write something genuinely positive.
When I started this post, John was throwing various items (anything he could get his hands on really) at the ceiling. He was coming off of a night where he was literally bouncing off his bedroom walls until 4:30 am. He had seven instances of aggression at school, and his self injurious behavior of head banging had started up again. This was one of our harder days, but it was not the hardest day we’ve had. My point in telling you that is to paint a picture of the reality of our diagnosis. Our days are often splashed with darkness, but there are plenty of blue, sunny skies to admire as well.
Whatever diagnosis you have been handed, chances are it’s not going to go away. We are in this for the long haul, therefore it’s crucial to be able to find the silver lining within the struggle. I read a quote recently that resonated with me.
“We each understand that difficulties are part of life, but when they come to us personally, they can take our breath away. These struggles, although difficult, often become our greatest teachers.” — Neil L. Anderson
I can’t imagine my life without John and his challenges. His challenges (or I should say “our” challenges) have shaped our priorities. They have changed how we raise our kids. We see people differently now. We feel a need to contribute and give back in the same way that people have contributed to our life. I have chosen a career path with the intention of helping children and families in our similar situation. The list of how John and his diagnosis have changed our trajectory is endless.
I can easily look at the big picture and tell you the countless ways we have been blessed through our trials. The difficulty, though, can be found in the day to day march through the sludge. What do we do then, when our day to day difficulties with special needs can be so hard that they take our breath away? Like the quote above says, we can look at them as teaching moments.
Mourn what could have been and be frustrated with failed expectations, and then find something to be grateful for. I’ve learned that if I don’t want to wallow in self pity, I have to be proactive about looking for the good all around me. A few days ago during my writing stupor, my son was having a very challenging day. But I was grateful. I was grateful that I had a family member in town while Danny was gone. I was grateful that she was mixing up waffle batter for dinner. I was grateful that my older two kids were staying with other family members and having a fun time at their lake house. I was grateful that my daughter had a good morning at soccer camp and was happy. And there were even a few moments that evening that my son sat down with youtube kids on his ipad and giggled so hard that it made me smile.
Looking back, I can see how our challenges have brought people out of the woodwork. These are people who want to help with the day to day march through the sludge. We’ve met so many kind and thoughtful people who have served our family in countless ways. We’ve had doctors rooting for us and checking in on us out of their office hours. School teachers have bent over backwards to help our son be happy and comfortable. A bus driver gave John teddy bears and toys on any given holiday just to show she cared. Friends have taken John on car drives and walks. Several people have offered up their swimming pools for his use. On a hard night, a few friends showed up to scrub fecal matter out of the carpet (yes, they really did). Family members have flown across the country to help numerous times. Play dates have been arranged for my other kids when we were stuck at home. A friend set up a swing for John so he could be happy at church. Delicious meals and treats have been delivered. I can’t look at this list of helpers and angels and not feel happy and grateful.
Holding on to my faith has been crucial for me to stay positive and hopeful. A few weeks ago I found myself sitting on our church pew (thanks to Danny for taking John out of the meeting) and just told myself to hold on. My faith that there is a bigger plan and that there is a purpose to this trial has helped me have perspective. Whatever religious or non religious beliefs you have, or whatever is most important to you, hold on to them.
There is a silver lining to having a child with special needs. In fact, I could fill an anthology with stories of times when we have found the silver lining. If I write that anthology someday I will keep it handy when the dark moments come.