It’s really tough for parents in the beginning; you don’t know what to expect. But just keep positive — try to be positive. And keep going — try new medications; if the first one doesn’t work, try another one, because there are so many out there. You have to know your own child and what they’re capable of doing.
Teach your child they can deal with this
Read as much as you can about your child’s condition, but don’t let it scare you; don’t focus on the worst case scenario. Have a positive attitude, and teach your child to have the attitude that this can be controlled and it won’t stop him from having a normal everyday life. If my kid right now didn’t have his problems with tension headaches and migraines he would have a very active life right now, despite his stomach problems. And don’t feed into it; feeding into anything, especially involving the stomach, just makes things worse, and I know this from my own experience. As a child growing up I had pains in my stomach and I would have little IBS attacks where I had cramping and I needed to go to the bathroom. And I would say, “Okay, we have to make a pit stop– find me a ladies’ room.” And then my friends would say, “Do you want to go home?” because obviously I was a little drained. But I would say, “No, let’s go have fun; the pain is over with,” even if I wasn’t feeling a hundred percent. Because I knew that if I said, “Yeah, take me home,” that I wouldn’t have a life and I wouldn’t have enjoyed anything.
That’s what you need to teach your child, that they can deal with this. When it’s bad it can be really bad, and you just hope that things are going to be right, but when it’s starting to ease up, you should show them the positive side of everything.
More common than you think
Before my son was diagnosed, I knew nothing– I had never even heard of Crohn’s disease. I had no clue whatsoever what this was. And since then I’ve found out that people I’ve known for years have IBD, but I just never knew. Actually, somebody I work with has very serious colitis. I just think that people, if something’s not affecting them personally, just go through life oblivious. They don’t realize all of these different things that are going on around them and affecting so many people. It was only when he was diagnosed that I found out how many different people I know are affected by either Crohn’s or colitis or some other kind of IBD.
For us, ritual is good
I think that ritual is good, and we have rituals about our hospital visits. Because we know that we’re here every eight weeks, one thing that we’re very careful about is to schedule any related appointments for the same period of time. I’ve been very demanding in that sense; if there is a study that we’re involved in, I’ve made it clear that we’ll make ourselves available only at the time when we’re here so that we don’t have to be here for more than that one five hour period every eight weeks. The ritual for us always involves being here early, going down to the cafeteria, and filling up a tray with as much food as possible. I also bring a bag of videos, snacks, junk food and soda, because it’s a long period of time. I’ve learned that there is nothing worse than asking a child to do homework or read during an infusion, but TV is great. Our ritual is usually to get take out Chinese food afterwards; our child is usually very tired afterwards. It’s important to dress comfortably and to make sure a child has clothing in case it becomes too cold in the hospital. We approach everything here with a sense of humor, and I think that makes it work out very easily. We’re just hopeful that our child continues to enjoy good health and that he’s in a very long term remission.
It completely changed my life. I think this experience has been one of the most powerful of my life. For example, I’m a teacher and it changes the way I look at giving extensions. I’ll give an extension for anything now; I don’t care. Maybe I bend too far the other way, but my perspective on the world is so much broader. You know, that’s probably a good thing that’s come out of it. I think I’m much less judgmental about a lot of things because I recognize that you don’t always know what’s going on. So I did find it life altering.
A right to demand time from the doctor
The doctors are busy, yet you can’t feel that you don’t have time to ask them your questions. We go in on clinic day and there are tons of kids and it’s really busy. It always takes three hours. I have learned that if I really want the time to talk to the doctor, that I need to feel that I can; (a) make an appointment to go in at another time, (b) make a phone appointment, or (c) email. It took me a couple years to figure that out that I had a right to demand time and that I didn’t have to assume I would get it at the appointment, unless I said ahead of time that I was going to need more than the regular time. I think there have been a couple times when we’ve had miscommunications with the doctor, and when I think about it I could have said, “Wait a minute– I want to talk with you about this stuff.”
Respect, empathy and honesty
Before my daughter was born, my world was based on assumptions. I assumed that since we were good people, only good things would happen to us. I assumed that nothing bad could ever happen to my baby. I assumed that with hard work and patience, all our family’s dreams for the future would come true. I assumed that my only child would grow up happy and healthy, graduate from an Ivy League college and make me a proud grandmother someday. All these assumptions were shattered in a 20 minute doctor’s appointment when Kelly was diagnosed with a complex genetic disorder. I was devastated and felt that all the things I’d trusted in had been betrayed. Anyone from that point on who said “Trust me” was automatically suspect– for me, trust wasn’t a gift I was willing or able to give anymore and I wondered if I would ever be able to again.
However, going through life not trusting anyone in order to save myself pain was not an option. In order to be a good mother and function effectively as a partner with Kelly’s health care team, I had to learn to trust again. Over time, I came to realize that trust isn’t a gift– it’s not something that’s handed over, fully formed and complete, to anyone who demands or even deserves it. It has to be built carefully over time, nurtured and protected. I believe that parents and professionals working together create the best care plan for children; each comes with his or her own expertise and contribution to the big picture. Respect, empathy and honesty on the part of parents and professionals are the tools that build trust. Trust, for me, doesn’t depend on our professionals having all the answers. There have been times when they haven’t or have been wrong or have had bad news for us, but we haven’t lost our trust in them. In those instances, when they have been honest about their uncertainty and expressed their empathy for our pain, that’s when trust has been built rather than lost. To professionals who are working on their contribution to building a trusting relationship with a family, I would suggest that they let their humanity show; parents value not only their medical expertise but also their compassion. You don’t have to be a perfect doctor or nurse if you show me who you are as a person, if you demonstrate you understand we’re in this together. That’s what will get the team (parents and professionals) through the tough places.
Most of us live with something
You learn a lot from this experience to value good health, and to realize how lucky you are by comparison. When you’re in the hospital, you see a lot, and I think that you just learn to be appreciative of what kind of medical care you’re getting, to be appreciative of when you feel well, and just to be more sympathetic to other people’s situations. This for us is sort of a secret and private matter, and I think that what you should remember is that generally every family has something. You may not know what it is, but most of us live with something that we’re trying to deal with. We don’t always disclose it.
There is something to be said for not dwelling on things. Laura is able to deal with all of this because she can leave it behind sometimes. It doesn’t help to dwell; it is so much healthier to move forward.
Keep the faith
Keep the faith. It is a long, hard journey, but things do get better. I knew that I had to deal with my approach to coping, which was to gather information. There was no amount of information that would really answer our questions or clarify for us what the problem was; it was just more information. Gathering information doesn’t always give you the answer, but it gives you something to do while you’re waiting for your child to get better, and knowledge is really helpful. It enables you to trouble shoot, or at least anticipate choices that you might come across along the way, and prepares you to deal with them. It’s not easy, but there are wonderful doctors, nurses and scientists working hard to solve these problems. Educate yourself. Keep the faith. Get your own support someplace too. Take care of yourself, exercise, or get a massage so that you are better able to be a good support and maintain a good frame of mind. There are a lot of people out there going through this, myself included, who want to reach out and help others. You don’t have to feel so alone.
Kids are much more resilient
Laura was so incredibly strong during the whole thing. I don’t know if it’s harder for a mother to watch her kid go through it, but I saw so much that I had to remind myself that it wasn’t me that was going through this– it was her. Kids are incredible; they are much more resilient. Just because of their age, they are always hopeful. Her condition would swing around and I would honestly get shell shocked. She’s run into bumps along the way even after the big solution– the operation. She’s been through so much– it’s unbelievable. Maybe because I’m older and able to express it more, I see what she has been through. She has doing amazingly well. My heart goes out just because I know how difficult it can be. It’s a hard thing, when you just want your child to get better, to see them suffer.