My 16 year old son was diagnosed with an inflammatory bowel disease, Chrons a few weeks ago. Since that time my world has been turned upside down as I try first to understand what Chrons is and to second, help him through this new “normal”. Yes I know “it could be worse” and I know “at least he is alive”, but this is not a fun thing to see someone you love go through. I have had many people give me words of encouragement and support and have felt the prayers and guidance of others along the way. One of the best pieces of advice was, “Pray to God, but continue rowing to the shore” good thing I know how to row!
Speaking to other mothers who have had sick children, we all seemed to be searching for a quick how-to guide when your child is ill. But what I was really looking for was a checklist. I can follow directions; just tell me what to do! Then I got it in the form of an email to my son from a family friend who has struggled with his own health issues for the last several years. My son and I went through his “Top 5 things of what you can do when something goes wrong with your health.” It started a dialog with my son and I. It gave us something to focus on and work on. It gave us a goal. It gave us hope.
5: Stay positive
Even when the health of your body might be failing, it does not mean that the health of your mind needs to be affected. Your attitude can and will have a positive effect not just on your recovery, but also on those around you. Your doctors will try harder, and your nurses will care more, and everybody else you encounter will be on top of their game because they will WANT so badly to help such a positive person get better.
This could not be truer! I have talked to nurses and they have said that they go the extra mile for the patient who is thinking positive. I have seen medical staff at all different levels go the extra mile. I saw our doctor walk to radiology and get us the images to take to Mayo. I saw my son request a chocolate milk shake and the recovery nurse leave the room and create one with chocolate milk and ice cream. He was her last patient of the day. She didn’t have to make him a milk shake, but she did.
4: Focus on the next step in the process
The past is the past, the future is the future, and the now is the now. All you can really control is what you do now. It doesn’t help to dwell on the past once you have learned from it, and it is hard to predict the future with so many things to come. I tried to focus on the NEXT action we were taking and believe that it would go well. Staying focused on the next step, helped me stay positive.
My son was placed on some medication with some really scary side effects. I can’t focus on those. All I can do is focus on how it is going to improve his life in the here and now with the best medical advice we possibly can be given. I can continue to explore options and seek medical advice. We can only focus on the next step, not the what if’s and maybes that the future may hold or reviewing the past wondering if it was something genetic he got from me, or if it was the food I was feeding him as he grew up. This line of thinking was getting me nowhere. I got no comfort from it. But what I did get comfort from was thinking positive and moving in the right direction toward that next step.
3: Make the best of whatever happens
Everything won’t always go well. You don’t want to have this disease, but you do. All you can do is pay attention, do the right things, stay positive, and hope for the best.
We have had the discussion that he should not use this disease as an excuse to not do something or try something. He should not be putting his life on hold because of it. Will accommodations need to be made? Of course, but that doesn’t mean he shouldn’t do things. We try to find JOY in the journey. We listened to a little girl in a wheel chair being sung a song in the atrium of the Mayo clinic. That brought us JOY. Yes he was missing school and his extracurricular activities, but we have spent some quality time singing in the car together that I would not trade for anything.
2: Feel, think, and communicate
As smart as your doctors are, and they are very smart, they are not infallible. They take in information and they use that to determine the best course of action. It is critically important that you pay attention to what you are feeling and when you are feeling it, writing it down helps a lot. The more information they have about what you are feeling the better decisions they will make. Think about what they are deciding, if it does not make sense, then ask some more questions. Your questions might lead them to get more information from you and help them make a better decision.
This was a big one for a 16 year old boy to learn, he needed to start to listen and pay attention to his body. For me it was what I needed to hear in order to realize that I need to trust my instincts.And when my gut told me I wanted to get a second opinion, I needed to act on it now. I hesitated as I was worried about offending the doctor. What a silly reason. A nurse asked me if my insurance would even pay for a second opinion. This is my child’s health and it was something that needed to be taken seriously. As important as it was for my son to pay attention to what his body was telling him, it was equally as important for me to pay attention to what my gut was telling me.
1: Take strength from your mom, your dad, and the rest of your family
You are loved by your family and many more, remember that always. I know for a fact that your mom loves you every bit as much as my mom loves me. There is nothing more important to her than you and your wellbeing, and she would and will do anything in her power to help you get better. Take their love and store it up and make yourself stronger.
I soon realized that as much as modern medicine can help my son, there is also the need to know that you are loved and cared for by so many people. You matter in this world and we are willing you to get better. I have said if I could take this disease for my son, I would. And I think that many friends and family would do the same for their loved ones.
I open this part of my life to hopefully help others who may be faced with something similar and need to find something practical to do. We were both speechless when we got the top 5 list. This list really helped me to cut away the outside chatter and focus on what really mattered. At least while going through the checklist, I wasn’t feeling useless. I had work to do! I had a boy to love and advocate for.
To Joyful, Simplified Living,