Now that your child's hospital stay is over, coming home begins another phase of changes and adjustments for everyone in the family. This section describes some of the challenges that families like yours have faced. By knowing that others have experienced similar reactions and concerns, you may feel less alone. You may also benefit from the insights and suggestions of experienced families.
Panic and Anxiety
These are very common reactions just after the injury and while your child is in the hospital. Many have described it as a "living nightmare". As time passes, these feelings may reoccur. Coming home, going to school, and thinking about the future raises many new questions and concerns for parents. Changes in any of the behaviors already described, and the sense that something is different now, can lead parents to question whether life will ever get back to "normal".
—I just felt so unprepared when Susan came home. Sometimes I woke up in the middle of the night, and all the worries and questions I tried not to think about during the day ran through my mind for hours. I didn't realize just how much I had relied on the people in the hospital. Now it was just me and my husband. We thought we were prepared for her to come home. We had read a lot of information and talked to all the professionals. It took us a while to get past the fear that we could hurt her because we really didn't know what we were doing.
Keeping in contact with a few parents we met at the hospital was really helpful. It was reassuring to know that many of them were going through the same thing. They understood what my day was like, whereas my relatives and friends tried to listen and wanted to help, but they just didn't know what we were going through.
Unlike many illnesses, injuries can be prevented. It is this knowledge that leads many parents, family members, and friends to feel responsible and guilty about a child's injury. Many parents regretfully think back to a pivotal "what if..." that might have prevented the injury. "What if I had been with her that day, what if she had been wearing her bicycle helmet, what if I hadn't left him alone, what if I hadn't let him go out with his friends..." The list goes on and on.
—It took me a long time to get over feeling guilty about Sandy's accident. Every time someone asked me if she had been wearing her bicycle helmet, I felt like I was responsible for her getting hurt. My feeling guilty couldn't change what had happened, and it made it harder for me to live with myself. When she first came home she had some nightmares about the accident, and it stirred up my guilt all over again. It also made it harder for me to let go as she got better, because I was so afraid she would get hurt again. She understood that she had to wear her helmet, but I was terrified to let her go beyond the driveway on her bike. I finally realized that my guilt was part of my fear and that I had to let go. I couldn't protect her and always be with her.
Feeling angry is a normal reaction to any major illness, injury, or death. Because so many injuries are preventable, expressing this anger can be misinterpreted as blame. The questions "Why did this happen?" and "Why my child?" are not easy to answer. Sometimes there is a visible target for the anger, such as a drunk driver. It is harder to express anger toward the child whose injury resulted from not wearing his bicycle helmet or using a false ID to buy beer. Often the anger felt toward a spouse or partner is silenced, but it continues to simmer when there are questions about responsibility, such as why that person wasn't watching more closely, why he didn't use the child safety seat, or why he allowed the child to go out alone. Not expressing this anger leaves it to simmer and grow. By expressing it and separating it from blame, emotions are released and healing can begin.
—I tried not to blame my husband, because he already felt so terrible. He blamed himself for our son getting hurt. But I was angry because he hadn't put Jerry in the car seat in the back like I always do. He let him ride up front with him with just a seat belt and that didn't protect him when the car skidded on the black ice. The anger was something that hung in the air between us for a long time.
Waiting for test results, uncertainty about your child's recovery, disagreements with professionals, piles of paperwork from insurers, discussions with the school, and changes in behavior—all these can be frustrating. You may feel frustrated and edgy because so many things are out of your control, and the timetable is so uncertain. Setting smaller and shorter goals—and focusing on what you can control—may lessen disappointment and frustration.
—At first, we expected that after a couple of weeks, everything would be all right again. As time passed, it became clear that we were in this for the long haul. There were so many daily ups and downs that it was easier to see progress when I looked back over the previous week and month. This was reassuring as it gave me a sense that we really were moving forward, even though each day was still difficult.
The sheer fatigue of caring for and supervising your child can leave you with little energy for socializing. Your child's injury may affect your relationships with friends and relatives. It may be hard for them to understand what you are going through and what your child needs. Some may pull back as they tire of hearing about your child and your concerns. Your priorities may change. As with any major life change, some relationships will grow and others may fade. New ones will develop.
—I wore out some of my friends because for months all I could talk about and think about was my son. It was hard for me to rejoin my circle of friends because my priorities and concerns were different now. Although I know that they wanted to help, it wasn't always easy for them. Sometimes, I found myself pulling back because it was easier to avoid their well-meaning questions. I was so physically and mentally exhausted that it was hard to get up the energy to go out to a movie. But I finally realized that by shutting myself away, I was losing the support of friends that I really needed. It took a while until I could find the balance again. My closest friends understood and hung in there with me. There are others that I just don't see any more, but I've accepted that.
Finding a Balance
The inability of experts to precisely predict your child's recovery makes it hard to know what to expect. Some family members may be more patient and understanding, while others may expect more rapid improvement. Even parents often differ in what they hope for and expect during a child's recovery. Talking about these differences can help parents and siblings reach an understanding of a child's limitations and develop reasonable expectations.
—My husband and I often disagreed on what we could expect from our son after his brain injury. I thought some of my husband's expectations were unreasonable, and he accused me of being overprotective. Even his brothers and sisters expect different things from him, and this affects how much time they spend with him and how understanding they are. We're all still learning how to find the balance between recognizing his limits, pushing him to do the best that he can, and accepting that nothing is certain. He is still constantly changing and so must we.