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How Family Members Cope
I’m divorced, and my son’s illness really affected my other two older children. We just started talking about how I never really even had the time to understand, because I was always so consumed with the amount of care and being single; it was just overwhelming, and it’s still overwhelming. It’s still hard being a single parent. Now everything’s okay— my kids are older— but I just felt like I missed a whole decade of their lives, not being able to go to their school activities or soccer games or anything. There was a big loss there. It really sort of blew up our family in a lot of ways, but now it’s so much closer and so much nicer. Maybe because of it, it’s better.
I think in one sense I can relate to a lot of what Carrie is feeling, because I felt a lot of the same things. In another way, I think there are a lot of times when I can say, “No, you’re not the only one.” And that may be a good thing, because if she says, “You don’t understand,” I can say “Yes, I do understand! I did it— I’ve been there, and I went through all those things.” And I’m not saying that it doesn’t hurt or it’s a fun thing or anything else— I understand, but also I could understand how she was feeling, and let her know that there was a real level of empathy. I think that this helped me understand that I needed to listen to her.
I think the effects of my son’s transplant experience on the family were mixed. Some were good. I had one child who was very upset and unhappy that we were having another child and very resentful about Steven. But when he became sick she realized that she didn’t really feel that way, and that she really loved him and wanted him to be okay. I think had he been healthy she might not have come to that knowledge as quickly as she did. So in that respect it was good for her. It was difficult for another one of my children because he has special needs at school and I was not able to advocate for him, and still over the years have not been able to advocate for him consistently and really get him the education that he needed. My daughter who is just a little less than two years older than Steven has struggled quite a bit— she had some separation issues early on, because for about a year I was not really available to my family. So when Steven’s first transplant was all over and we were back at home, it was a real blessing that we got a year of good health for Steven because we really needed that to rebuild our family and our routines, and my daughter really needed that time to connect with me and heal a little bit. But I would say that all of the trouble that she had during the years prior to that probably had to do with her separation from me and her anxiety over her brother. Now she struggles a lot with jealousy about Steven because everyone always wants to know how he’s doing. If we walk into a crowd, people always focus on him and I have to remind them that she’s standing there, and they need to engage her in conversation too. He’s the one who gets the most presents and all that and it’s very hard for her to comprehend that she just would not want to trade her healthy body for his sick body to get the attention that he gets. She knows somewhere in her head that that’s true, but she still struggles with jealousy and she’s frustrated with that sometimes. So now I’ve started pointing out to her times when people were making a big fuss over Steven and she didn’t get jealous and feel left out. I tell her, “You see, this was one of those times where you really did it; you were fine.” I think it’s been encouraging to her to see that that can happen. My older kids’ struggles haven’t really been about a lack of attention, although they all suffered a bit with the changes in our family and the fact that we haven’t been able to do things that we used to do. They’ve had to struggle with that a little bit, but I think it’s been so much easier for them to comprehend why it is. They also know enough to have felt the real scare of knowing how sick Steven is and feeling that anything is worth it as long as he gets better. Everybody’s struggles have been a little bit different.
I think we’re really doing well as a family now; I think we’re actually better than we were five years ago, before my son’s transplant. We’re closer as a family. I think that my husband and I are very secure with each other, and know that there just isn’t anything that will shake our relationship. Our kids are very secure in that as well. We love each other very much, and we value our days together. I know that my teenage son has a much better understanding of what’s important in life, and sometimes he gets really irritated with his friends because they’re so superficial and he is a little more mature in some ways. We’re also closer to my stepchildren, and they come over more often. We’re just a better family unit now, I think.
We knew from the day he was born that there was something up with Chris’s kidneys. But honestly, that was about all the information we had. It took almost five months to have his obstructive uropathy diagnosed. After that, the world began to unfold and a sense of reason, if not order, became evident. I was finally able to ask those horrible questions that began with “Why?” I secretly knew that Chris was ill because I was old or fat or I had sinned at some point in my life. I asked if it was the CVS procedure that I had at 11 weeks gestation as part of genetic testing. I was certain that the sampling needle had nicked something somewhere. My son’s doctor explained to me that maternal guilt is the most natural thing in the world. The baby was created inside my body and when he was born, there was a problem. So, I thought, it had to be my fault. The problem is that I’m not responsible for the things in my children’s lives that I cannot control. And there are more of those things than I care to admit, even today, 10 years later. He further explained that assigning fault would do absolutely no good for my child. If I spent the rest of my days feeling sorry for myself and hating myself, where did that leave the child I had just brought into the world? In the hospital, with a pretty sorry excuse for a mother who was not doing for her child what she could at a time when he really needed it. Who else would be there to nurse my child and hold him and rock him and love him? Was there really something better I had to do with my life? What would I actually accomplish by even beginning to focus on myself and on my self-imposed problems when my infant was so sick? I learned a lot from that doctor, and I learned it pretty quickly. I have to work through my monumental ego to get myself to a place where I can be an asset to my child. I can make that decision. He has no choice. He’s stuck with his life and his diagnosis. If I’m such a princess that I will accept only a “perfect” child, then maybe I had better get out of the way. If I want to complain about the hand I was dealt, then maybe I’m not mature enough to be playing cards at all. On the other hand, if I want to roll up my sleeves and get into the game, it’s the wildest, most thrilling experience a human being can have. It’s real, it matters, and there is a place for me that no one but me can fill. And I can’t begin to tell you the places I’ve been, the things I’ve learned and am still learning, because of this kid of mine. I can’t imagine that guilt anymore except as a place to hang out until I figured out where to fit into the newly dealt game of life.
I think the time my son had his transplant was the only time in my life when I felt that faith really carried me. Every time I turned around there was someone there saying what I needed to hear. At my reunion, they had money left over, so they sent me money; it was always these unexpected things. I had this piece of junk outside— this old snow blower— and somebody offered me $100 for it and I was just going to throw it in the trash. So some very funny things happened, financially. I think because my family wasn’t here, I just believe that God always put certain people there. When I was having a hard time, somebody just appeared out of nowhere and helped me through that moment. And it still happens to me.
I very much focus on the kids and my husband and what they need. The other thing I do is that I realize that I need breaks sometimes. Whenever I can fit it in, I go out, maybe to a friend’s house or maybe to have a cup of tea somewhere. My husband used to cope with all of this by keeping busy, but that left me shouldering far too much of the burden at home. For about three years we struggled mightily over that, because I would be angry with him for having a life; he would spend his time on golf trips and going to basketball games and baseball games when he wasn’t at work. So for a few years, that was a problem and it took him some time, but then he was able to see that he needed to simplify his life too. Also, we changed our expectations about what we were going to do as a family. And I hire somebody to clean the house, because anybody can clean the house but not anybody can do Steven’s IVs and go play basketball with the other kids down in the park and that kind of thing. I’ve also let go of some things that I used to think were really important; my house is not as perfect as it used to be and I don’t particularly care! Someday I’ll be able to do all of the things that I used to love to do, but for now that’s not where we’re at, and that’s okay.
What I found going through all of this was that I only really asked questions as I needed to know the answers. If I filled myself with too much information I would not be able to treat my daughter appropriately and in a way that would encourage her to deal with this. I think that I didn’t hold anything back from her. So first, you need to understand your child, and second, you need to not underestimate your child. I think many people, because of their own fear, tend to do that, because the first thing you want to do is to protect your child from everything. The bottom line is, you can’t do a kidney transplant for your child. She is going to have to deal with this. My daughter was older, so I could say to her at the age of twelve, “Well, it’s happening now, Riley. And yes, we’re all nervous, but we’ll find a kidney.” We told her, “We’ll figure this out, we’ll get it done, and then you’ll be okay.” Then we said, “Okay, now we’re testing for a kidney.” Riley was very hopeful and very terrified at the same time, but she was still feeling well.
Some parents are so fearful, and they have a very hard time transitioning from that fear to the parental role. You are a mirror to your child, so if you can’t mask your fear, you’ve created a mess. They’re cued into you, so if you walk around like a basket case, you are doing them a huge disservice. The way I found to cope was I talked to a lot of friends and just emoted and got it off my chest. Then I could turn around and be fine with Riley. I would go through hell the nights before the transplant, and just want to break down every five seconds, and then turn around and be fine with Riley, because that’s what I needed to do. Because she was looking to me for an example— to show her that it was okay and there wasn’t a reason to be fearful. So it was a big responsibility, but when you’ve done it and you feel that you’ve done it right, there is no better feeling. It was hard work, but I succeeded. I have no doubt that I have succeeded in how she dealt with all of it.
Certainly we as a family all have more of an appreciation of each other. The six year-old became more withdrawn. The soon-to-be ten year-old was much more able to emote and we were also very straight forward, as we were with Riley: “Okay, this is what is going to happen. Mom is going to give Riley a new kidney. So Mom is going to be in the hospital and Riley’s going to be in the hospital. Dad is going to be at home with you guys. Aunt Carrie is going to stay with Riley. Grammy and Poppa are going to fill in.” We had a big support system so that their lives didn’t change at all. The most important thing for me when Riley and I were out was that their lives would continue as is, so they had their regular soccer games and piano lessons, and everything stayed the way that they’d always had it. It was already difficult enough for them not to have us there, so I think keeping a routine is really important, and if you can do that, to do that. Also, to be very frank with them, using age-appropriate information. You don’t want to terrify them, but be open and honest: “This is what’s happening to her and she’s not feeling good today. Maybe her body’s not going to like the new kidney right away. She has to take lots of medicine and sometimes the medicine will make her sick.” They became very aware of Riley and very solicitous if they needed to be. But at the same time, when Riley is well they have no problem having arguments. Taylor was envious at times because of all of the time and the attention that Riley got.
You have to make sure that you have somebody else to talk to about your fears. It could be a therapist, your best friend, your mother, your father, your priest— whoever, but make sure you have somebody who is there for you to bounce all your fears off of, so that you can appear calm, cool, and collected. I’m not saying walk around like the tough soldier, because if you need to cry about something, you need to cry about something. But you want to make sure you don’t make your children incredibly fearful. If you’re sad you need to cry, cry, and then get up and go on and do what you need to do. You need to have a lot of control; you need to be able to stay focused on raising a child that’s going to grow up. So don’t them get away with hell because they’re sick, and don’t let them get away with being rude because they don’t feel good, because you’re still raising a child.
It probably brought a lot of our family closer. My family: my grandparents, my mom and my stepfather, have just been phenomenal. My husband’s sister has really done a lot as well. We weren’t that close to her in the past few years, but she just adores Tim and has really been there for us. It has brought the family together.
It gets depressing. You’re so tired, even though you haven’t done anything all day. All you want to do is sleep. It can be really hard just knowing that you have all of this stuff to do at home. You sit there doing nothing. It’s difficult, but we’ve met some wonderful nurses here and at our hospital back home. You start calling the nurses your friends. We’ve gotten attached; at least there is some social interaction.
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.
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.
Nurses and transplant coordinators work with transplants all the time. They’re wonderful. You don’t want to get onto the internet, because you’ll find so much information— good and bad. Before I knew what Randy’s diagnosis was, I got online, looked up what they were calling it, and walked back to the room balling. I wouldn’t tell my husband or my mom though, because I wanted to protect them. It’s so important to stay away from the internet because you can have information overload.
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.
I think you really have to keep the focus on yourself as the parent of the transplant recipient, because if you don’t take care of yourself in terms of eating and sleeping, then you really aren’t able to help the transplant recipient.
I would suggest trying to get as many family members involved as you can, to try to take some of the burden off of just one person. In my family’s case, it’s me, my daughter— who knows what time Kevin’s supposed to take his medicine, and she is only eleven— my husband, my mother-in-law, and my father-in-law. My husband, my father-in-law and I take turns going to clinics, so we each know what to watch for. It makes it a lot easier.
Kevin’s sister was very scared because in the last four years, she almost lost her brother twice. She would be devastated without him, and she is happy that he has a transplant now. We were always very honest with her. Any questions she asked concerning her brother’s illness we answered as honestly as we could. She came to all of the family meetings; she is part of the family and should be included in what’s going on. There shouldn’t be any surprises. She learned a lot and it worked very well.
I quit working because Kevin needed 24-hour care. I started seeing a therapist to talk about my fears and concerns that I didn’t want to show my son. I believe that was a big help. I didn’t carry them inside; I let them come out.
About two months after the transplant, I really worried that we had made the wrong decision, because she had done so well on dialysis, and the transplant had brought so many problems. I really worried that doing the transplant had not been the right decision. Another parent and I met in the ICU and talked; our daughters had been transplanted a day apart from each other, and she said that she felt the same way. It just felt so different than what we were used to. My daughter had been on dialysis for six months, and we knew how to do that. Transplant was just a whole new regime. We went to camp up in Maine, camp Sunshine, and we met a lot of other families that had had transplants, and that helped tremendously. So many other families said the same thing: that there was a time period where they weren’t sure what they had done. For probably about six months after the transplant, we were getting used to it— getting used to the meds, getting used to the new way of doing things. Then, all of sudden, things got better. My daughter’s nephrologist at home had told me early on, “Dialysis is going to consume her life, and will be all you will be able to think about. Right now, her kidney disease is an enormous part of your life. When she has the transplant, you’ll find it is just part of what you do, and it doesn’t consume you anymore.” Of course, at the time, I didn’t believe a word of what he said! But it was true. We saw that happening; more and more, we saw that we could do what other families were doing. We could stay out past seven o’clock, because she didn’t have to rush home to get on dialysis, and we could take her places without worrying that we were going to have to run to the emergency room. It is still always there; it’s always something we consider before we do anything. But the transplant did change things from crisis mode all the time to just being aware.
We have two older children, and especially in the time period when Kaila was ill and on dialysis, they didn’t get to have much of a normal life. We were in Intensive Care for our daughter’s first Christmas, so my older kids spent Christmas at the hospital. There were tons of activities that we missed with them. We could never plan to go anywhere or to be anywhere, even birthday parties with the kids or school functions or just visits with their friends. We were dependent on the Kaila’s health, and that was really difficult. We felt really isolated from the rest of the world at the time because we were so focused on actually getting her a transplant and keeping her healthy until her transplant. I think that my husband and I worked very well together; we accepted that each of us was good at different things. The kids had a little bit of a hard time after the transplant, because we had talked so much about how the transplant was going to help her get better, and then she wasn’t better right away. She wasn’t going to bounce out of the hospital and go running down the hall. They needed to know that that was okay- that it was going to take a little longer for her to get better. I think that for my husband and me, getting out of crisis mode actually took a lot of time and a lot of energy. We were so used to being in that mode that we didn’t really know how to function outside of it. It took a little while to feel like we could do things or so that we could leave her with somebody. That was a big thing, to trust somebody else to do her medication and to let her be with a babysitter. I think now that we’re almost two years post-transplant, our daughter has some other health issues, but I would say that, factoring those out, we’re actually pretty normal. We do a lot. Our other kids participate in sports teams, and they go to friends’ houses. They pretty much get to have what the rest of the kids have, within reason. We go out occasionally, we’ve planned a vacation, and we’ve done some stuff that seemed impossible even a year ago. We have definitely come a long way since then! It is always in the back of your head that you could end up back there, and I’ve talked to a couple of other parents who feel that way too. You’re always hyper-vigilant about things like colds and flus- stuff you know that could land them back in the hospital. But it’s being vigilant without being smothered. It’s always in the back of your head, and we’re always aware of it, but it doesn’t take over anymore.
Try to learn as much about it as you can, especially from other parents. The doctors are a good source of information for the technical aspects of the transplant— they can tell you about what to expect from a surgical or medical standpoint— but I think that in terms of what to expect for the rest of your life, parents are your best allies. They can tell you how to get a kid to take a medication they don’t like or how to talk to a doctor when your kid is having side effects that you don’t like. Parents can be an invaluable source of help, especially those that are a little bit farther away from it than you are. When you are in the midst of it, sometimes another parent in the midst of it is just as overwhelmed as you are, but a parent a few steps down can say, “Yeah, that was bad for us too, but this is what helps.” Or, “This is bad, and there is not a whole lot you can do, but it will get better next month or a few months from now.” It’s especially helpful if you can find a parent of a child who has a similar condition or is of a similar age. The woman I met in ICU, we’ve now been friends for two years. We talk almost constantly, and her daughter is only is only slightly older than mine, so we’re really right there for each other. Our daughters would have the same sorts of problems and we’d bounce ideas back and forth. When we went to camp [a camp for children who have had transplants] that first year, we met a family whose son has been transplanted at sixteen months, and, at age six, was running around and looking like the picture of health. It was great to see where we were headed. His parents were clearly well adjusted and relaxed, and I think that it gave us a goal: we knew that sometime we could get there too.
Our older daughter talks at her school - she has a counselor at school that meets with her once a week. We call her the “talking lady.” She’s very excited to speak to someone. I didn’t know how she’d react to that but she thought it was a great idea. She came home and told me, “You can say anything to this lady and she won’t tell anybody!” She’s just kind of open. I think that you need to be open and you need to keep your other kids informed about what’s going on, because they want it so much. As long as she knows what’s going on and how her sister is doing, she’s fine. To not talk about it, I think, would be harder than to talk about it.
Lisa’s siblings are a good support structure. I think that siblings can actually provide a sense of normalcy that even parents can’t. I think that Lisa’s sisters keep her grounded; they don’t allow her to have a big head. You can get a big head, because you do get a lot of attention that kids normally don’t, negative and positive.
Some periods can be tough, but that’s when you need to find somebody you can depend on emotionally. My husband and I are excellent partners who depend on each other and each other’s strengths. Neither of us is a towering pillar of strength— it’s just that when one is weak, the other one takes up the slack. I truly believe that you need that, whether it’s a parent, a grandparent, or a close friend. That has been our saving grace. I think that our marriage has become stronger because of Lisa’s illness. My husband and I have always said that a serious chronic or acute illness like this will do one of two things: make a relationship or marriage much stronger, or totally destroy it. You have to totally commit, because of all of the emotional and physical strain. It is a make or break situation. My husband and I are probably closer than we would have been had we not had this illness. And I think that Lisa and her sisters would probably defend each other in a way that some other siblings wouldn’t.
I have niece who is getting married in August. Most people would probably get plane tickets now, but we can’t go that far. If she’s transplanted at that point, we could probably get tickets and go, but if she’s not, then we have to wait to see. Then, a few weeks before, do we suspend her off the list, so that we can go ahead and buy tickets and go to the wedding? You don’t lose your place if you suspend yourself, but if something were to come up, it just goes to next person on the list. It just changes how you make plans. Things tend to be a little bit more last-minute than they were before.
It was just sort of a bit frustrating when my brother had a transplant, because I always had to go from place to place. I had to go with him to a lot of places so it was sort of interrupting because it was hard to get a lot of stuff done. I always had to go to waiting rooms and appointments and stuff like that. But I felt like it was going to be a big relief because he wasn’t going to have to do dialysis and that was very frustrating for me. Home dialysis was a bit hard because you always had to be in his room at a certain time.
At first, we were shattered and did not know how to live with chronic illness. We thought our lives were ruined in some ways, as we could only see the limitations it placed on us, and the incredible time it demanded of our lives. Normal for us those first few years consisted of daily phone calls to the nurses and doctors, weekly trips to the hospital and regular trips to the Emergency Room. We were in crisis mode for so long that it felt as though it would be that way forever. Eventually, we saw things smooth out and settle down and we found that we were able to continue to live as we did before, taking trips and enjoying our family and friends.
How did all this affect our family? It was extremely hard on all of us in many different ways and continues to affect some of us to this day. The ages of the siblings, personalities, other circumstances all will make a difference in how the family is affected. We had to move across the country from Oklahoma to California and leave extended family behind in the midst of this illness. Nick had not one but two transplants 5 days apart. Depression and anxiety run in both sides of the family and consequently two of our daughters developed depression and all three daughters were diagnosed with migraines in the next few years. Severe illness and transplantation do not just affect one person in a family. They affect everyone and one must be observant of other family members, the patient and oneself as the caregiver. As a family we tried to keep everyone informed of current happenings and have open discussions often. I wish that beforehand we had been informed more about how the whole process would affect our family and our son emotionally. Our son Nick went on to develop posttraumatic stress disorder after his transplant experience and battled with it for the next few years. Senior year in high school was the first year he spent the entire year in school during high school. Had we known how this was to affect him we would have gotten him into counseling earlier and medication. Also watch yourself the caregiver and other family members for depression as well, it creeps up on people. What was the most emotionally difficult part of everything? Probably depends who you ask. For me, it started when he got closer to the top of the list. You listen and watch for any new, different or unusual symptom to occur. Then, when the first hospitalization comes, the airlift, the ICU admission, the call an organ is available, surgery, the days following in the hospital. As I write this I would have to say anything to do with the hospital means serious and is probably when I was the most emotionally stressed. They do not send your child to the hospital because he is doing so well. (Ha-ha)
Take breaks and go in shifts and try to also spend time together as a couple having coffee or lunch or dinner together. The two of you need to stay connected through the whole process. Bring favorite toys and things from home to keep your child comfortable and with a sense of security that they will be home soon. If the hospitalization is for an extended period of time, make sure you let the nurses know you need uninterrupted family time in your child's room, and make arrangements for a specific time every day. There is so much traffic in and out of the room that it wears a family out and prevents them from having their down time together. This is very helpful and affords parents the time they need to talk, or be silent, to rejuvenate themselves.
Multiple doctors: what an understatement, especially if you are in a teaching hospital. Learn who is who and do not be afraid to ask and question when you have a question. One night after Nick had a liver biopsy after his second liver transplant (his first one had clotted off) the nurse tried to discontinue his IV heparin because there was no order to continue it. I knew that sounded wrong. I checked my log and saw when the last biopsy was and how they had continued the heparin then. His chart had been thinned but since I had the date they were able to find the info quicker. The junior resident was not sure what to do but with my persistence they called the senior resident who wrote the order to continue the heparin. Also learn their names because they will like that you remembered and also will help when discussing things later with other personnel.
There is a complete rearrangement of close friends when your family is struck with chronic illness. Those who are closest to you before a diagnosis may become uncomfortable and withdraw. The process is a painful one for sure but as the years go by, it helps us as parents to develop our own character and inner strength. Our church friends became our strongest supporters. They were able to handle the roller coaster rides of treatment much better than our family. That is understandable; they did not have the same emotional response as our poor family, bless their hearts.
How did we cope? Well, not without a river of tears, of course. But looking back, I think the best thing that we did for ourselves was that we continued to do ordinary things and lived life as though everything were normal, even though they absolutely were not. We were on the phone with the hospital or nurses on a daily basis and at the Emergency Room more times than I will ever be able to count. Our son's body for the first few years just went haywire. But even during those times of trauma and instability, we still managed to take our sons fishing, or go up the canyons in Utah where we lived for a picnic. When possible, we opened our home to the church and had a fun barbeque, a volleyball game in our backyard, or hide and seek with the teenagers. Also, we found a way to hang on to a sense of humor. Oh my goodness, even if the humor is a little dark, it's the best thing in the world to get you over the hurdles! My husband would joke about hanging a stronger strength dialysis solution if Kevin misbehaved, and although the joke was over Kevin's level of understanding, it really released a lot of tension (in both of us) when he would do that. "Surround your life with family and friends" is the best advice we could offer. They are the absolute glue when the trials are over your head. They somehow have a way of sensing your need at the time, so open your arms and let people in. They are your life-savers! On the other hand, be careful to not burden them with too much. Sometimes folks are a little unhealthy with relationships to start with, and when a chronic illness strikes, it can make those weaknesses become even more unhealthy. Don't depend on others to pull you up. You're the only one who can work through your circumstances. But allow others to come alongside and be your friend. Again, don't put demands or unrealistic expectations on them. This is not their burden, so don't try to force it on them.
John changed our lives psychologically and emotionally. We moved to LA and we lived in a house with my mother in law. It affected our family in every way. We stopped working and we were about to lose our house, but all we cared about was our child. We just wanted to be with him and to make sure he was okay. The most emotionally difficult part was the waiting. I used to think that I wanted him to get a heart, but someone has to die first. Every day was a challenge. I got scared every day at the hospital. We kept thinking of the baby- of his sickness and why this happened to us. We don’t do drugs; we don’t drink. Why our baby? We started a little group for patients waiting for an organ transplant in Santa Barbara, and I go on behalf of my son. Once a month we have a meeting and just talk to each other. We also started a little group in the hospital in Los Angeles. My wife and I talked to families who were waiting for hearts. Once a week we had a meeting and talked about our experiences. It was really hard on all of us. You want to divide yourself in two to be in two places at the same time. Afterwards we were very nervous; we’ve been through a lot. For every little thing, we took him to the doctor right away. We didn’t want to take any chances. I’m concerned about him all the time— not just about his meds, but about his heart problem and about rejection. You never know what the next day will be like.
How did I cope during these times? Prayer number one, and family and friends. I even talked with the personnel at the hospital. Another unique thing I did was to work on a scrapbook for Nick. I kept taking pictures of Nick with his favorite doctors, nurses, aides etc., him walking in the halls, and on the day he got discharged and came home. I made this into a scrapbook for him and it has been an item of healing for him and me as the years go by, because we can see where he has been and where he is today. I would recommend it to everyone. Also, when in the hospital, get out when you can. Go to the gift shop, go to the cafeteria, go outside for a walk around the surrounding neighborhood, go to stores, go out to eat. The time will come when things calm down and your child will want some time alone and you can get away. Take care of yourself. The best advice I got before the transplant was from my cousin. Her son had a bad head injury when he was l4, and she said when Nick got on the list that I should let go of all the volunteering and busy stuff I was doing so that I could make my life simpler. She said that way, when the call comes I will have no obligations or guilt and will be able to give my all. It helped considerably, and I still use that advice today. Yes, I still rerun the whole event in my mind occasionally. I read that parents can experience PTSD and I believe it. I do not know what triggers it, but it just happens. He goes every 3 months for checkups now and even though he is 20 years old I still go with him. He calls me with every unusual ailment and my mind races to what it could be. I don’t know if it will ever end because he will always be my little boy. |
Impact on the family
Mixed Effects
Maternal Guilt
Take Care of Yourself
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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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