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Words of Wisdom
I think you really need to ask questions. No matter how stupid or foolish you might feel asking a question, just ask, because you have a right to know; it’s your body and your responsibility. Also, write down your questions, because if something pops into your head at 2 o’clock in the morning, I guarantee you that when you’re in front of the transplant team, especially with all that’s going on, it will slip your mind unless you have it written down. Sometimes, when you’re meeting with the team, everybody in the room seems to hear something different. We had two family friends come with us to those meetings, and they were willing to take notes, which I found really helpful to look back on. We had tried to audiotape it, but found it confusing, because there were too many voices. That didn’t work for us, but writing down worked really well.
Expect the unexpected when you’re going through this process. Understand that things may not always go exactly the way you hope or plan but remember that it doesn’t ever have to be the end of the world— it’s just another challenge. We have always found it helpful to live in today and not to worry too much about what’s going to happen tomorrow. It’s a good day when Steven is feeling well enough to be a regular child and it’s a hard day when he’s sick and not able to live normally. And of course there are all of the shades in between. Our primary hope is for all of us to make sure that we keep each day as normal as possible and not worry too much about what’s going to happen next. My other goal, especially as I guided my children and my husband through all of this, was to make sure that nobody would have any regrets. We’re very careful to keep home a safe place where everyone feels loved and valued. And it doesn’t happen all the time— kids fight, and parents don’t always do what they wish they had in every situation, but to the best of our ability we’ve always tried to make sure that we wouldn’t have any regrets. Because the one thing that I have learned is that nothing is for sure; Steven could be fine and one of my other kids could get hit by a car and I could lose him in a minute. So we just try to make sure that every day we live the best we can, always savor the good times, try to attain those good times and make sure that we treat each other well, so that we never look back and say, “I wish I had done something differently.” Because I’ve never wanted anyone to have any regrets.
A carburetor is pretty much a carburetor. You might buy a generic used one or brand name, brand new one. You can choose where you buy it, take your time, inspect it or send the kid next door out to pick one up for you. It’s your choice. You can put the thing in yourself, or have your husband, the guy next door or a certified gold standard mechanic do it. What you get is usually what you pay for. But you can usually make other transportation arrangements. It’s pretty much a buyer’s market. You know pretty soon if it was done correctly. If not, there’s a warranty, and lots more carburetors out there and nothing is lost but a little time and aggravation if the first one doesn’t work out right. And eventually you will replace the entire car. Such is certainly not the case with kidneys. As I see it, we want the first transplant to be the only transplant and in our case, since we are talking about children as recipients, we want these precious organs to be the best possible, gold standard, top of the line, brand name. These guys have to get our kids through all of the tremendous changes and risks of adolescence and then continue to hum along for another sixty or seventy years. To do that, they require constant, consistent maintenance. Remember, they’ve already had to survive the rigors of removal from their original location and constant bombardment with ever-changing medications to keep from being attacked by the body that they have invaded.
Seeing her positive makes us positive. And that’s just it; she has this kidney disease, so we just go on and go forth. She’s my heroine, because she’s got such a dynamic outlook on life. If one of the family members had to have a kidney disease, she’s happy it’s her because she knows her other sisters couldn’t take it. But her outlook is just positive, positive, positive. She’s smiling all the time, and I think that’s a big thing. But family support is great too; we’re right beside her all the way.
Always find something funny in a situation, because if you can’t laugh about it, then you’re going to cry about it. Riley was really terrified of the IV nurses; she had horrible problems with IV’s. So when the IV nurse would come I would say just what Riley feared the most and didn’t want me to say: “Oh my God— it’s you! She’s terrified of you!” And it always lightened everything up. Even in the worst situations, just try to find something that’s ridiculous.
Just take one day at a time. Be prepared, and have the best support system you can. People are willing to help. You have to learn to ask for help, even if it is just to have someone else sit with your child in the hospital so that you can get out for a while. People offer to come and help out, and you wonder if they’re just offering because they feel obliged, but most of the time they’re offering because they want to. Attitude is everything. Keep looking at the bright side of everything— anything that you can find to be positive about. Don’t feel sorry for yourself.
If parents have questions that they don’t feel they have gotten satisfactory answers to, I would advise them to keep asking. I think it is very important that if you feel something isn’t quite right or you have a question, you say something. I think doing that is very empowering for the family. I think it is also empowering for the child who is growing up with a medical condition to see people asking questions until they feel that they have gotten an answer, because they are going to need to do that for themselves later on. My son is certainly going to need to do that. As families we need to advocate for our children sometimes, and my son is a teenager, so I know that he needs to learn to advocate for himself. And advocating for yourself means paying attention to that little feeling of “I have a question about that,” and asking people. That’s very important.
Take breaks when you can! You have to get out. You have to take care of yourself in order to take care of your child. At first I wouldn’t leave; I stayed in the hospital for two weeks straight, sleeping on one of these pull-out beds. Then, the first night that I got home, I had an anxiety attack, which I’d never had before. Rather than having three or four people in the hospital room, take shifts. You develop relationships with nurses, and you figure out whom you feel comfortable leaving you child with, and you just have to know that they’re going to call you if there’s a problem while you’re out.
Fundraising is a big thing too. We didn’t do any fundraising and we should have; it just seems so overwhelming to get into another thing at that point. I know there are a lot of organizations that will do it for you and I think fundraising is a big thing that helps. It’ll even help for the gas to drive to the hospital, parking, food, hotel so you can be near the hospital overnight. Fundraising is something that parents can do, and I don’t know whether a lot of them know about it. But they should really look into it; I wish that we had done that.
One thing that comes into my mind is that there is always hope; just keep hope alive. I think one of the things that we’d like to be able to articulate is the importance of never giving up hope. There are many twists and turns to all this.
The problems I have are that it’s not always so clear-cut. With normal kids it’s difficult enough, but it becomes very convoluted when you’re dealing with someone who is going through so much, and when you have so much sympathy for them. That sympathy can truly ruin you and ruin them. Your pity for their circumstances can create a child who feels entitled and who expects much more than they should. The sense of entitlement is huge, because they have been given all these things and allowed all these things, from the way they speak to you to how they act. Do some things work better than others? Sometimes, but sometimes I think I’m totally messing up, mostly because I’m thinking, “Now wait a second, I need to pull myself back. It doesn’t matter how much I feel bad for her— I need to do something to curb this behavior.” We had a problem with her stealing money from my purse when she was going out, and it was because she had been in the hospital off and on for three months and had been unable to baby-sit or get an allowance because she wasn’t able to work. But this was a real problem, because she had taken money twice— thank God it was from us! We decided on a punishment, but the problem was that we could understand why. Even though you can’t condone the behavior, you can understand: it was Christmastime, she wanted to buy some gifts, and some piece of her mind was telling her that this was money that was owed to her. What we have found works well is that when she is in the hospital she gets her allowance.
I can always call the transplant nurses and ask them even silly questions. They often tell me, “You don’t have to put your daughter in a bubble; you can still do things, and you can still go places.” Kaila is actually getting ready to start pre-school in the next few weeks, and that is a major event. It is something pretty normal for a three year-old to do, so that has been exciting, seeing her get ready to do stuff that is normal. It is always a balancing act between keeping her healthy, making sure that all of her meds are on time, making sure that everybody she is with—, school or a babysitter—, knows about her transplant… and then, for me, letting go of some of that, and letting her have normal experiences.
It’s changed our lives in this respect: I think we count on our family a lot more now than we have. I think it’s brought our family together all around, on both sides. It gives us more perspective on life, like what’s really important. You know, jobs and things like that are there, but in reality you have a family to take care of and that’s the number one thing.
Read up on it, become knowledgeable, and write down all of your questions on a piece of paper. Have a piece of paper in the kitchen and every time you have a question just write it down, because when you go to meet with the team it is kind of overwhelming the first couple times and you’re not going to remember everything. So read-up on it, inform yourself, and remember that no question is really dumb. It’s totally different, especially if you have no medical background and you’re just coming into this out of the blue. So write down every question— it’s going to be important. It’ll save you a lot of stress too, because you won’t think, “Oh, I didn’t ask this— why didn’t I ask this? I wanted to.” Make a list and it’ll help.
It’s so helpful to write and make calls, and tell people how you’re doing and what is going on. People feel left out and want to keep in touch with what is going on.
This is the bottom line: unfortunately, other kids your child’s age don’t normally have to deal with this kind of thing. God— if I could take it away, I would. You can cry about it, scream about it, and have fit about it, but don’t waste more than a day on it because it isn’t changing anything. Get past it.
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 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.
A representative from the New England Donor Bank came to talk to us. Hers has to be a terrible job. She has to come and face families who have just lost a loved one and has to ask if we were willing to allow his organs to be donated. She was very kind and took a long time explaining to us the entire process, including what had actually happened to Eric and the state he was in at that time. None of us hesitated— we knew Eric would have wanted to be an organ donor, would have wanted to have helped anyone he could at any time— and we agreed to the process. After the pain of that process, and as time passed, we received information on who had received the many organs that Eric was able to donate. As a part of my healing process, I began to write letters to the recipients, trying to tell them about Eric, what type of person he was, how he loved to run and bike and hike, and how his and Kristen’s passion was backpacking to areas where no one else was— just to share the peace of the world high on an isolated mountain. I needed them to know and understand that they were now a part of a very special person and I wanted to know what type of people they were— those who now shared part of my son. I heard from many of the recipients, most simply by letters with no direct contact. However, we have spoken with the recipient of Eric’s heart on several occasions, and with Beth, the recipient of Eric’s lungs on a continual basis. All of those responding to my letters have shared very personal and precious pieces of their lives with our family (every time we receive any correspondence, I share it with Kristen’s family as well as with my daughter). Each contact has helped tremendously, but none as much as Beth’s. Eric was a caring, loving person who had a passion for living. He was a leader who put friends first. He cared for people and was absolute in his loyalty. When we first heard from Beth, it was a summer evening and my husband and I were sitting out on our porch. We had received a letter from her that day and it was so full of life, so full of energy and she had given permission for us to have direct contact. I called and she came on the phone and it was as if we had known each other forever. Her passion for life matched Eric’s. Her desire to see and do it all matched Eric's. She was so open and shared so much about what her life had been like and what it was now like, thanks to the transplant. You could tell she never even considered failure, except as necessary as a part of living under the conditions she had lived. To me, if the most terrible thing in my life had to happen, the goodness that came from it was Beth. Before losing our son, I don’t think I had really even thought about whether I would want to be an organ donor. Probably because I just didn’t think about dying— or chose not to think about dying. Now is different. Just recently, I went to have my military family member ID card renewed and one of the questions I was asked was whether I was a donor or not— and without hesitation, I said yes. I have had the chance to see the good that has come out of the absolutely worst thing that could have happened to us. I can now recognize that my son has given more in death than many people ever give in life. I understand I can never have my son back, but we were able to offer the gift of life to so many others. As I have spoken with both the heart recipient and Beth, I find it ironic that as we sat with Eric, knowing we would soon be without him, the recipients and their families were each sitting at a hospital getting ready for probably the scariest moment in their lives. As we were losing our most precious son, they and their families were praying for a successful transplant. The pain we were feeling would soon be the joy they would be feeling. It is hard to say exactly how all of this makes me feel. I can never get back what I lost, but I have to see the good of what Eric did by donating his organs. That is the only way I can make even a bit of sense out of our loss. Thank you for allowing me to share this.
Do not treat your child as though they are not capable of doing things for themselves. Treat them as though they were a gift, for sure, but don't coddle them and cause them to grow up weak. We're supposed to strengthen their legs for the road, not become their crutch. We must keep this focus from early childhood on, even in light of their illness. Again, love them to pieces, treat them like royalty, but do them the highest favor of all and make them feel strong and good about themselves!!! Families deal with all kinds of dynamics as a result of a chronic illness and unfortunately many marriages end because they lack the tools to cope with it. When Kevin went on dialysis, we were no longer able to fly across the country and visit friends. We were now tied to a nightly routine with "Mr. Robot" and we felt our lives as we knew it were over. Then we decided to learn how to live with the disease and not let it overtake us. Not everyone can afford to do what we did, but there are so many ways to work around your circumstances. We bought a used motor home, one large enough to accommodate Mr. Robot so that we could take Kevin on mini vacations and still have the machine available for nightly dialysis. There were a few occasions where I had to do manual dialysis when we actually did get up the nerve to fly somewhere, but we had checked and planned ahead for the closest dialysis center if the need presented itself. Couples need to protect their relationship with gentle care and determine to work a little harder at nurturing it during the most difficult times. Sadly, many couples retreat to their own corner and never learn how to come back out and reach for each other again. Their bitterness, anger, disappointment, guilt, and disillusionment produces a gulf so wide, it separates them permanently. So, here are only a few ideas that came to mind today while we waited. These principles helped us weather the storm and actually built an even stronger foundation in our relationship: 1. Schedule monthly dates, just the two of you, to reconnect and talk about things other than the medical aspects of life. Certainly, it's acceptable for the conversation to turn towards these concerns, but practice at keeping it to a minimum on date night. 2. Focus on healthy living. Take day trips, picnics, fishing, do things as a family unit. Don't allow the illness to rob you of your family life. Even though it feels like you're only going through the motions, it's amazing how much stress is relieved and good memories are built. 3. Don't feel guilty about pampering yourself. Go to the gym and take a class you enjoy, have a massage at a day spa, or get a facial. Do the extra nice things for yourself that you normally would never dream of doing. This is the time in your life that you will need to nurture yourself more than any other time. 4. Allow your friends to support you with their acts of kindness. Don't rob them of the joy of giving to you. It helps them feel like they've done something to show their concern and care. Let your friend bring a meal, grocery shop, baby-sit, whatever. I had to learn how to receive. It is much easier for most of us to give. 5. This too shall pass! Nothing lasts forever; even cloudy days give way to sunnier ones. I remember how dark it felt when I thought life would be like this forever. I had a hard time convincing myself that it would get better. The way I finally started to believe it was after a series of family outings. Forcing ourselves to do the fun stuff again painted us the picture that anything was possible. 6. Soothing talks with close friends (woman to woman) are healing, especially when a partner has temporarily shut down. What your partner may not be able to give you for the time being can be balanced by the good talks you share with a friend. 7. Find humor in life, rent videos that make you laugh when you've had a stressful week. It feels almost unthinkable to go to Blockbuster and rent something, but the after-effects of laughter last through the days ahead and somehow make things more palatable. 8. Leave special notes or cards for your partner, letting them know you care and realize they are hurting, too.
One thing that I say to other parents is that you can’t be anything more than an advocate for your child. It’s the most important thing. If you have questions or concerns, you have to make sure that you talk to somebody. If something is bothering you, you need to push forward and say, “I need you to explain that to me.” I think that is one of the hardest things to do sometimes, especially for new parents, because there is so much of a feeling that the child is so vulnerable. It is a very intimidating situation to be in— you feel vulnerable and the child is vulnerable, but you’re the best voice that they have. And not just here in the hospital, but also once they’re out of the hospital and in school.
The most rewarding thing that I have done since all of this occurred was to become active in my local organ procurement agency’s volunteer program. I do public speaking at high schools and different organizations promoting organ donation. I meet other recipients and their families, as well as donor families. Also in our area, being a quilter I started the first organ and tissue donor and recipient quilt in Southern California. Families make blocks to honor those who have donated or received organs or tissue. The quilt is kept in our community and used at different events to put a face and or name to the people involved. The response has been tremendous and so exciting. I would strongly recommend this type of volunteering to all families and patients, after the dust settles. That way, we can help all those who follow us to have the same second chance at life with increased awareness of organ donation. |
Asking Questions
Goals
A Kidney is not a Carburetor
Perspective
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Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. July 26, 2005 |
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