By: Dr. Cathy Moser
The journey that begins with learning that your child has a chronic illness is unique to each and every family. There are also some commonalities – like the devastation that a parent feels when they hear the diagnosis…..like the sorrow you feel when you have to share that diagnosis with your child and with your other children…..like the progression through the five stages of grief and loss (denial, anger, bargaining, depression, and acceptance). If you have more than one child, there’s one more emotion that can multiply the impact the impact of all of the above if you let it – guilt. Often parents look at their other children and are flooded with thoughts like: ‘I need to spend more time with them – but I can’t take time away from my sick child, because they are the one that is suffering’. Like many parenting dilemmas, it feels like someone loses out no matter what you do. If you have read my column before, you will recognize a theme in my advice. GET OVER THE GUILT - it’s not your fault that your child became ill (even if it is a genetic disease – you did not ask for those genes). And it’s not your fault that you were put in the impossible situation of choosing the child that you will spend time with. The reality is - no matter what you do, someone always loses out. It is important to make sure that no one person loses every time (including you!). So, you must learn a new skill – juggling! If you learn it well, you will intuitively know which ball to hold on to at each moment in time, and which ball to momentarily drop.
I make it so sound easy, but I can tell you from experience, that this journey is most likely the hardest you have and will ever have to embark on. I can’t think of anything harder in life than watching your children suffer. But trust me, it gets a lot easier with time. I know from experience - I have three children with Crohn’s disease. I will never forget the days that each of them were diagnosed, and even seventeen years after the first diagnosis, there is a pain in my heart and a tear in my eye just recalling that period of time in our lives. Even with mounds of support and a really strong family, it took a few years to ground myself back to a place of strength. I myself grew up in a family with a chronic illness, and at the back of my mind, I knew that it would all be okay… and that we could come out even stronger as a family than we would have been if we had not been burdened with this ‘challenge’.
The first piece of advice that I will give you is to do some reading and consulting with professionals. The Children’s Hospital has a Family Library (ph. 204-787-1012). Support groups are good; websites can be dangerous, because sometimes the people who contribute are those that have the worse case scenarios, and that can be scary. There is an amazing website that was compiled by a Nurse (Joan Fleitas), and it has a whole sections on siblings. Go to http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/ ; Click on the blue star (Kids) and then the green star (lots of stories). It will give you some insight into what may be going through your children’s minds, and you can share the appropriate stories with your children.
The second piece of advice is to be on the lookout for some of the signs that indicate that your child is in need of attention. These could include: jealousy; withdrawal; sadness; somatic problems (stomach aches, headaches); academic or behavioural problems; elevations in anxiety/fear; elevations in anger and aggression; and, attempts to overcompensate for family grief by trying to excel and achieve perfection. I remember one seven-year-old-child that came to see me because he developed separation anxiety when his brother was born with an illness that required hospitalization. He had meltdowns when his mother stayed overnight at the hospital. When his brother came home from the hospital, he was extremely fearful that his brother would not wake up in the morning. He developed stomachaches and often fought very hard to stay home from school. When he came in, the first thing I did was to ask him what he understood about his brother’s illness. NOTE: it is extremely important to be honest and open about the illness with your children. You do not have to share everything with your children; in fact, it is important to share information in progression, and only at a pace that your children can handle. Together with the young boy’s parents, we talked about his feelings and perception of his brother’s illness, and we corrected some of his misunderstandings. I encouraged his parents to regularly give him space to talk about his feelings. In some cases, I get children to build a ‘worry box’. They are encouraged to write out their fears on a note, and put it in the worry box that will be opened up daily with parents. I also suggested to parents that they discuss the situation with the child’s teacher and the guidance counselor. Often, the school is very helpful – many times, we arrange for the child to start off the day by checking in with the Counselor or Vice/Principal. Instead of fearing going to school, they look forward to that extra attention that they get from their teachers. Speaking of extra support – most friends and family will be searching for something/anything that they can do to help you. Take them up on offers to take the ‘sibs’ on fun outings or sleepovers. Make sure that significant relatives in their lives (e.g., grandparents) give them some one-on-one time. Whenever possible, parents should take turns giving one-on-one time to each child. Try to take a genuine holiday from the reality of your life (a movie is a great escape; an overnight at a hotel can be a real treat; a trip to Adventure City can be absorbing enough to forget about reality).
I am a ‘silver lining in the black cloud’ kind of girl, and I know from experience that there are many silver linings. One of them is the sensitivity, compassion, patience and empathy that your child and their sibling/s develop. It may not come through in your presence – BUT, if you play your cards right, it will eventually shine through (for some, it could be hidden for years.. and hopefully, you will live long enough to see it). By the way, ‘playing your cards right’ turns out to be a good metaphor. I play bridge - a game where you cannot control the hand you are dealt – only the way that you play it out. No matter what the outcome, you are a winner if you play the hand out well. So… hit the books, seek out professional help, don’t forget about self-care, and take time to experience and appreciate the precious moments when they appear.