It happened. I know it happened because I was there. I sat in that small office. I heard the doctor say the words. They are tattoos on my mind. The weeks following the diagnosis were a Googling, researching, and crying frenzy. How could this be? Not our child! Surely not, right? Yet, there it was in black and white on printed letter head. This was and continues to be our new reality. Yet the nagging question in those early weeks was how I was going to raise a child with a terminal condition? How? Just how was I going to manage that?
There is no manual, no one size fits all advice, no easy way out there on how to raise a child with such a complicated medical condition. There are no answers on how to navigate the intense social and emotional land mines that litter the life path of an A-T child. There is just old-fashioned common sense, the advice of a talented medical team, and the tried and true advice from parents who are a few steps ahead of you. Despite that, it is still a daily struggle. It’s a challenge to balance happiness for the here and now with the fear and sadness of the now and future. With every ability lost, every fall, every emotional hurt, every new obstacle, every challenge, you wonder all over again just how you are going to survive this. There is much focus on the person diagnosed with a medical condition, especially ones that are terminal. I’d like to take a moment to salute my fellow parents, grandparents, brothers, sisters, and loved ones that are in the trenches fighting alongside and cheering on our A-T children. While the children are fighting a brave and difficult war, we too are fighting right beside them. Only our hurts are hidden behind strong armor to keep up a brave face. Our pain gets pushed down to forge ahead with education planning, doctor’s appointments, and therapies. While the children are going through those things, we are right beside them holding their hands, making difficult and sometimes painful decisions, and keeping it together. The children are allowed to put their emotions all out there, we must remain steadfast and bring as much happy into their life as possible. So, how do we raise a child with a terminal condition?
One day at a time.
One hour at a time.
One minute at a time.
One moment at a time.
One breathe at a time.
One hug, one kiss, one “I love you” at a time.
There is no one way to do it. There is no one right way to cope. You do the best you can, focus on what you have control over, and hope with all your heart that what you don’t will fall on the right side of the odds. It can get lonely at times, and it’s during those moments that those other parents who are fighting as well help you the most. They too would switch places with their child in an instant. They too feel the pain as intensely as you do. They understand the hurts, the isolation, the fear, the worry, the sadness, the triumph over small victories. They are my fellow warriors. As far as I’m concerned we all have second-hand A-T!
So, tonight I will hug Braden extra tight. It’s been a tough day. Watching him struggle to do something as simple as open and close the back door has shattered my heart. I watched his hand tremor so severely that pepperoni went flying across the table as we were making pizza. Thank goodness we have a sense of humor or it would be even rougher seas around here!
I put up a few more pictures for those who aren’t on Facebook. Click on the pictures tab at the top of this page. I also put up two videos on the media page.