When our 2 year old son was diagnosed with brain cancer, a dear doctor friend, asked how our other children were handling the new diagnosis. When I expressed concern that we were seeing lots of anxiety and some other issues of sadness and anger, our friend uttered a truth that I had never thought about before, “When one member of the family has cancer, you all have cancer.” She went on to say that even though our son was battling cancer physically, we were all battling the emotional aspects of cancer. I had never thought about it until this point. Our normal was no longer normal. Which meant parenting our children would have to adjust to our “new normal.”
While we have one child with cancer, we have 3 other children who do not have cancer. We have two children that are a little older than our cancer kid and one that is 2 years younger. Just being parents without any special needs, while it is such a blessing, can be completely overwhelming. I feel safe in saying that I have yet to meet a parent who has not, at times, felt completely inadequate in parenting their children. Now throw in a cancer diagnosis for one of your children and then try to balance it all. Whew!!!! Talk about praying exceedingly and abundantly for balance, grace, and wisdom!
When Nathan was first diagnosed with cancer, he was only 2 at the time. Our daughter Sarah was about to turn 6, and our son, Matthew was 3. We found out a week after Nathan started chemotherapy that we were expecting our fourth child, Tabitha. Up to this point, our children had never really been apart from us. However, as many of you know and have also experienced, a cancer diagnosis comes with very quick changes. Nathan’s MRI was on a Wednesday; we saw the neurosurgeon on Friday; and we were in brain surgery the following Tuesday.
We did like many other parents did and sent our other children to stay with family friends while we were in the hospital with Nathan. In the weeks and months that followed, when we would have to bring Nathan to the hospital for so many days, we would send our children to stay with others. We are so thankful for the support we received and do not take it for granted because I know there are many other families that did not have any support at all. However, we quickly realized that while we were trying to “protect” the other children from being “scared” at the hospital, they just wanted to be with us.
Every child is so different. We know families where the siblings do not want to have anything to do with going to doctor or hospital appointments. Our children are not made that way but there was a miscommunication on our part in trying to determine how to adjust to our “new normal.”
Here is some advice, based on our own experience or that of others, to help the siblings of a cancer kid adjust:
- Ask your child if they want to go to appointments (provided the clinic/hospital will allow it). Sometimes the other children just want to feel like they are a part of what is going on. If they do, see what “tasks” you can give them to do. On the flip side, maybe the siblings do not want to have anything to do with the “cancer world” they have been thrown into. Do not force it. All of us handle stress differently.
- Make time for your other children. I know many parents may go into the hospital and it could be months before they get discharged. Be creative. Have your other children spend time with you at the hospital. If you are a distance away and they can’t physically be there try to video chat regularly. If you are able to be at home between hospital visits, have a date night with your child each week. You can either take them out or just have a home date night with them.
- Spend an extra 30 minutes. One thing we have done for years is each week that we are able, we put all the kids to bed at their regular bed time but then each night during that week everyone takes turns having 30 extra minutes with mom and dad, doing whatever they want to do. It could be playing a game, talking, watching a funny show together, it is completely their choice. This doesn’t require money or going anywhere it’s just precious quality time with each child individually to let them know that you love and appreciate them for who they are. Friday night we have family fun night where everyone stays up for either a game or a movie. The weekend nights are reserved for mom and dad to have time to spend together.
- Treat siblings equally. Another issue siblings struggle with is not being treated equally by others. I know that our children have said that it hurts them when someone just asks about or speaks to Nathan but not the rest of them. They said they understand people are just concerned with how Nathan is doing but it would be nice if they would speak to them and ask them how they are doing as well. If family or friends are the ones who are meaning well but forgetting about the other children, kindly (key word: kindly) pull them aside and remind them that the sibling(s) need attention as well. If it is a stranger, I make a point to share about the other children, sometimes it works and other times they don’t get the “not so subtle” hint. Even sometimes by parents, the siblings can be treated differently. We spoke with a young adult sibling whose brother had cancer when they were children. This sweet young lady began to tear up as she recalled how each night before bed she remember her parents hugging and kissing her brother much longer than they did her. As an adult she now understand why and how they did not know what was going to happen with her brother but she remembers as a child how hurtful it was.
- Adjust to new routines. The “new normal” was something we tried to get our children use to very early on. Some days are clinic days but we still just take our books and homework with us and try and keep going. Don’t get me wrong, some days we just need to have time together whether at a park or watching a movie, but you learn to discern what your children need and when. We also try to treat each child the same. If your cancer kid can get away with anything then what message is that sending to both the cancer kid and the siblings. I read in the beginning of Nathan’s journey that not disciplining your child because they have cancer can send the message to them that there is no hope of beating the cancer as well as send a message to the siblings that life is completely out of control. (Note: Some medicines, such as steroids, can effect behavior so this does need to be taken into consideration, but we always tell our children that no matter how you feel it is never right to treat others badly.) Our son knows that even if we are at his hospital (clinic days=unlimited iPad time for all the kids) if he is disrespectful or hateful then he will lose his iPad, whether for a specific amount of minutes/hours or for the day.
- Understand “normal” reactions. It is hard when one child is dealing with cancer and your other child is throwing a tantrum over a flu shot but try to remember that this is normal. It is not normal for children to have testing, procedures, blood work, medicines, and not be scared but our cancer kids have had to learn to deal with it. Our other children are still just children and for them it is not normal. Try not to make them feel bad or guilty for their personal reactions to their own medical treatment.
- Counseling (individual or family) is a great way to get some objective feedback on strategies to help the entire family. Make sure to find a good counsellor who has worked with families dealing with serious or terminal illnesses before and who shares the same faith and values you have. Many times if you tell the counsellor your situation, even if insurance does not pay for counselling, they will work with you. Remember if you start with a counsellor who is not a good fit for your family, it is okay to find another counsellor. I realized that when one day, in tears with one of our children trying the techniques the counsellor had suggested for over 2 hours, I yelled out, “Just go live with your counsellor!” Not quite the best mommy moment on the book but it helped me and my child realize that we needed to find another counsellor whose techniques better suited our family.
For our family, we have a strong faith and hope in Jesus Christ. We read our Bibles together, worship together, and pray together. There used to be an old cliche that said, “The family who prays together, stays together.” It really helps for our children to pray for each other and to hear each others prayers. It lets you know that you are being thought of and lifted up even when you may feel too weak to pray yourself.
Nathan’s Hope founders, Bobby and Dawn Norman, are both graduates of Liberty University. Bobby is a Licensed Optician and Dawn is a stay at home mom. They have been married since 1998. The Norman’s have four precious children whom they homeschool: Sarah (born 2003), Matthew (born 2005), Nathan (born 2006) and Tabitha (born 2009). They never imagined themselves with a child battling cancer. Their youngest son, Nathan (born Dec 2006), has been battling brain and spinal cord cancer since Jan 2009 and receives treatment at Duke University in NC. His story can be found at www.caringbridge.org/visit/nathannorman.