When my middle son was diagnosed with Crohn’s in October of 2012, I really was clueless about what it was and its lifelong implications. Crohn’s is one of those illnesses that you have maybe heard about or know someone with it, but until you have a loved one diagnosed with it, you don’t really understand. It is a chronic illness, something that he will have to think about for the rest of his life until they find a cure. Something that as a young man has forced him to already think about the path he is going to go in life.
He now realizes how important having good health insurance is. While his friends complain about having a cold, he becomes frustrated that they are complaining about having a simple cold where his immunity is now compromised and a simple cold is no longer a simple cold to him. He now is very interested in political elections and how a candidate’s view on healthcare coverage is the most important issue when it comes to whether or not he supports the candidate. He now is concerned about student loan debt and whether he can afford to have student loans and be faced with a pre-existing medical condition and possibly no health care coverage.
Years ago when I was trying to wrap my head around all of this, I received words from a friend who also has his own chronic health condition. These bits of wisdom was what I was searching for as we go on this journey. Often I feel powerless and I do not know what actions I can take. I am the mother, I am supposed to take away all of my child’s obstacles. But what I am reminded of is quite simple; I can’t take the obstacles away, only guide him on his path with love. We all have something in our life that we struggle with and grapple to get answers for. Our struggle isn’t unique to us and the advice we were given also is not unique just to us, as I think others would enjoy the same advice. I like to get advice that I can sink my teeth into. I like knowing that I am not powerless, and there are in fact things that I can do to make this easier for my son.
I had to revisit the advice that I received as I was faced with the difficult task of letting go of my son when he was in the midst of a health crisis. He was less than 12 hours from boarding a plane to Hong Kong for the summer and we were in a strange city in an unfamiliar ER seeking relief for an issue he was having. I had to watch him get on a plane, against medical advice, and just believe in all my heart that he was going to be ok. This advice was timeless and still holds true today.
Be real and not too positive, so that he knows that you know that it sucks. I am one of those moms who has always been real with my kids and I don’t hide the truth from them. I always want them to know the facts and what their options are. When I was in that ER that night I kept exhaling deeply and my son looked at me and asked me what was wrong. I told him I kept forgetting to breathe. Besides one look at my face and you would be able to tell how stressed I was. I would be a horrible poker player as the tell is right in my eyes. I realize I can’t hide my own feelings about how much this sucks. And sometimes when things in life suck, we just want someone to acknowledge that this is one of those times that sucks.
Be positive and not too real, so that he knows that you are there for him and that you have his back always and that you will him to a better place. There is a fine line to walk with the information that we have and the information that we could potentially have. We are in a society where Web MD is at our finger tips 24/7 and sometimes having too much information is a bad thing. There are so many sources that when he was first diagnosed it was so overwhelming. I would freak myself out and that was doing nobody any good. Instead I have put my faith in our medical care and in doctors that we trust knowing that we are being seen by doctors with knowledge of cutting edge research that is coming. We were reminded when he was first diagnosed that many Crohn’s patients struggle with holding a job. We push that out of our head. We know of people who are very successful with careers who have chronic illnesses and we plan on him being one!
Be happy, even when you’re not, so he can see that it is possible to find the silver lining no matter how hidden it is. I realized early on that there is always someone who has it much worse than us. When you spend time in a medical facility you are reminded of that. We see a child with no hair asking the nurse over and over to promise not to hurt him. I see a pregnant woman in the ER who was just beat up by her boyfriend taking pictures of her bruises and I remind her to take pictures every day as the bruises get worse over the passing days. This is life and death up close and it can get ugly. Instead of us being sad, you will probably find my son reading a Dora the Explorer book with a bad Spanish accent while waiting for his IV to start. Not only making me laugh, but the other caregivers around him as well. He is the young man with the nurse making me an anniversary card with crayons while he waits for a procedure to begin. We are the ones asking the surgeon if he could have any TV celebrity be president, who would he choose and why? These are the important questions. My son and I have had some incredible moments together. He is the one who is usually making me cry tears of pride and joy and often of laughter.
Be sad, that you can’t take his pain away, but be happy that you gave him the strength and the will to persevere. I am sad. This is hard to have someone you love struggle with this. I have sat in hospital rooms and hotel rooms while he slept and I had tears silently running down my face. I so want his pain to go away. I want him to get his energy back. I want him to gain weight. But I know that he is strong, often stronger than I am. I watched him make the decision to get on a plane against medical advice with painkillers and antibiotics in his bag to sit for hours on a flight to Asia. I didn’t do the ugly cry as I watched him walk through TSA with $20,000 worth of his weekly prescription. I saw my toddler learning how to walk, not a young man leaving the country for the summer. He knows that he will get through this by creating his own path. He rarely mentions to his friends when he is not feeling well. However he does not hide it. He is very open when he needs to be. Never using it as an excuse. He knows that he is strong and that I am there to hold his hand, both physically and metaphorically along the way, to cheer him up when he is down, to reassure him when he is in a place of doubt.
In the time that he has had this medical issue I have learned a few tricks of my own. This is what I know I can do to make this easier for him. As a professional organizer/lawyer/mom I want to make sure that he has the best documentation. We talk about how his smartphone is his best tool for tracking of his symptoms and how important it is to keep track of things as they happen, not looking back and trying to remember. Here are some tips that we have started using to make this easier for us:
- Have an excel spreadsheet on your phone that you use for tracking medical issues or other side effects. An excel spreadsheet is easy to search and navigate.
- Use the alarm to set reminders of when to take medications.
- Use the calendar for reoccurring reminders like ordering medications so that you never find yourself in the Gulf of Mexico in a house full of fraternity brothers waiting for your medication to arrive while on Spring Break (yeah that happened.)
- Take pictures of the bottles of medicine to refer back when asked what kind of medications are in use and the dosage.
- Carry a doctor’s letter when traveling to show to airport security or customs agents if needed.
- With the ability to zoom in and focus on even the tiniest of writing, the camera on a cell phone suddenly turns into a magnifying glass.
- Pictures of health insurance card with policy numbers and contact information for easy access.
- Contact information and names for the health care professionals that you are working with saved in your contact list.
- Clinic ID numbers saved as a note.
- Taking medical information and scanning it into your computer and storing it in cloud storage so that you can access it when in a doctor’s office from your phone.
- If the clinic or hospital has an app for you to access your medical records, make sure that it is downloaded.
I go back to this, because as much as I want to take this illness and make it mine, not his. I know that he is the one who will have to learn to navigate with it. So I now sit with him at doctor appointments and I let him do the talking, often in the waiting room. I watch him go up to an admission desk and explain why he wants to be seen. Watching him grow into his own advocate, I am proud and in fact those tears now are ones of pride and joy with only a touch of sadness. And as he reminded me after he read this post that he stays positive regardless of the situation because he would rather be happy and feeling physically bad instead of sad or mad and feeling physically bad. The choice is his.
To Joyful, Simplified Organizing,
Melissa’s e-book on Kitchen Organizing can be found on Amazon.