New Year’s always bring out a lot of proclamations of how the upcoming year will be different, how dreams and ambitions will be realized, and most importantly how the year will be better than the previous year. I use to be one of those big-dreams-come-true kind of resolution maker but hearing that my daughter wouldn’t live past the age of 5 (she was 18 months old at the time) took that kind of thinking away from me. Instead as I grew up as a parent in a children’s hospital I learned to focus on what needed to be done or had to occur at the moment and not focus so much on a future that I wasn’t guaranteed would happen. Don’t take this the wrong way, I’m still a dreamer (just a realistic dreamer) and life hasn’t made me fatalistic---my daughter turned 11 in 2011….I knew the doctors were wrong but instead of unrealistic pipeline dreams that wouldn’t amount to much in the end, I knew I had to focus on the realistic attainable dreams that would keep her alive. As much as I would have liked to wipe the slate clean and move forward I knew the answers to her future lay in the short years that she had experienced to date. It’s that same type of thinking that has helped me cope and make plans to deal with Caden’s similar immune deficiency as well as autism. With this in mind I am going to reflect back in order for me to look forward to 2012...
My daughter has had 13 surgeries while my son has had 4. I’d love to say that 2012 is going to be a surgery free year for us but we already have Ryley’s 14th surgery on the docket so that’s not a realistic goal. However 17 surgeries in a fairly short amount of time with a lot of different specialists in different hospital settings has given us the chance to work on what protocol works for each child. I’ve learned to ask questions, take notes, and ask more questions. If I don’t get the answers I need or they don’t match up with what I know has worked in the past, we don’t move past this step until we are all on board with a plan. I take this same approach with proposed medications, treatment plans, etc. at doctor’s appointments, hospital stays, ER trips, and so on.
I won’t lie; I’m sure I’m on a few doctor’s lounge dart boards but for the most part doctors appreciate having an expert on the child around. I almost always keep my voice friendly and calm and use my best “we” language but I’m not afraid to speak up when my child’s best interests aren’t central to a plan. A few years ago I let this protocol slip…..maybe I was tired, maybe I was overwhelmed, I’m not sure the reason but I let a doctor go ahead with a spinal tap on Caden that I knew wasn’t being set up right. The sedation medications weren’t working, I knew the procedure would be too painful without the appropriate meds, and I knew the doctor wasn’t projecting the air of confidence that I needed but I still signed the paperwork. As a result of my mistake the doctor tried a procedure on Caden that neither of them were prepared for. The doctor panicked and stepped away from the table with the needle still in Caden’s back. No amount of discussion or condolences or polite talk will ever take away the pain that Caden went through, the fears that procedure placed left him with or the fact that I still wake up at night hearing him scream as well as the nurse continually repeating don’t let him roll, he’ll paralyze himself. BUT I can promise you that I’ll never make a mistake like that again. In 2012 and every year that comes after it I will advocate for my children in the medical arena, in the school arena, and in the life arena.
Sometimes doing what I know my children need means that I get angry but I’ve learned that anger is justified and it’s what will motivate me to do better or stand up longer or be louder the next time. Sometimes doing what I know my children need means that we’ll need to change jobs or move and unfortunately moving has taken us far from my family and I’m really homesick. I can’t change that but I have to be okay with it because every move has been made for autism resources or a healthcare system that can handle their illnesses. Sometimes doing what I know my children need means that I’ll have to say goodbye to people in my life. There’s just not room in my life right now for people who can’t support me in these efforts on behalf of my children. Notice I didn’t say fully understand or advocate for me; everyone has their own “stuff” to deal with and these are my children and my responsibility but there’s no room for anyone who makes this journey more difficult or drama filled than it already is. Sometimes doing what I know my children need means I need to learn to laugh or cry or smile or sulk or be surrounded by people or left completely alone and I need people around me who understand that.
There are a lot of lessons and wisdoms that I’m taking into 2012 with me but I only obtained these by reflecting back on what life has thrown at me and what we’ve successfully and not so successfully dealt with. Other lessons that I’m excited to take into 2012 with me:
· My kids are amazingly resilient. Last year Ry was in the hospital, wasn’t allowed food or water, but yet kept watching the food network and food commercials. I finally asked her why she was torturing herself and she said it wasn’t torture, it was planning. She said “I know I’m getting out of this hospital and I want a food plan to look forward to.” Maybe everyone should have an emergency food plan to look forward to just for when life gets a little rougher than usual. Between autism and the chronic illness I wouldn’t blame Caden if he never wanted to leave his room but yet every morning he anxiously awaits the light in his room “turning green” so that he can get up and get the day started. I don’t know many adults who could deal with what they go through each week and stay as mentally healthy as they both are.
· My husband and I have a really strong relationship. We’ve been through a lot in the last 6 years but we’ve been through it together. I can’t imagine anyone else with whom I’d rather share the joys or work through the heartbreaks. I have no idea what 2012 will throw at us but at least we’ll be together. We don’t always agree and another year won’t change that but we do agree to disagree pretty darn well.
· Service dogs rock. Nope they aren’t a cure and they aren’t for everyone but the right dog in the right situation with the right organization and the right trainers and the right individual can make a world of difference. Caden has a best friend now who is already doing so much more than I could have ever imagined for and with Caden—it truly is a tale of a boy and a his dog or a dog and his boy.
Please know that I support whatever dreams you have or changes you wish to make in 2012 but consider looking back over the last year and seeing what lessons or tidbits that you’ve learned that will help you make those dreams or changes a reality. From the Butler Modaff house to yours, we wish you a very Happy 2012.