Wow what a long title. If you think the title is long try living it. We try to be funny in this blog at times because that is the kind of people we are, but sometimes when you have a child with a chronic illness, it’s just not funny.
I promise we will get back to trying to make you laugh because relationships are hard enough without all the seriousness and deepness. But this week I wanted to touch on a matter that is important and a little close to home.
I have a teenager with cystic fibrosis. For those of you who do not know what this is, it is a progressive, genetic disease that causes severe damage to the lungs, digestive system and other organs. It is a “life limiting illness” (meaning current life expectancy is 40) and while I am not a personal fan—for my own reasons—of using the words “special needs,” my child’s needs and routines are far different than my other child who does not have this disease. This disease also at this current time has no cure.
So because this is my life and has always been a part of my coupleship for the last 14 years, I really don’t know any different. Similar to my son, who doesn’t know any different than to do 20-30 minutes of chest physical therapy/nebulizer treatments twice a day and to swallow 40 pills throughout the day. Mind you, this is his routine when he is feeling good, when he is ill it can increase by more than double.
This does take a toll on myself, on my child and on my marriage. So I wanted to write about how to maintain connection in coupleship while dealing with this reality.
First and foremost, I want to let everyone know it is okay to be a victim. Wait…what???? (Usually I am so busy as a therapist trying to get people of out a “victim posture” this is even hard for me to recommend…but oh well, this is where I start today.) What this means is you have earned your right to be a victim to whatever illness, condition, disease, disorder, etc. that your child has. You didn’t ask for it, you didn’t want it, you may have even caused it (meaning you are a person made up of genes and you gave a set of them to your kid, and your partner gave a set and they caused this disease), you can’t likely cure it, and the list goes on. I am here to say even if your genes were passed down (as in my son’s case) and the end result is your child has an inherited disease, you gotta let that go and fast.
Allowing yourself to be a victim means I totally encourage you to sit with your partner, family, friends, neighbors—hell, if you must, talk to strangers—and tell them how much this all sucks. Because it does, it totally does. Tell your audience everything you want to say and express your anger, frustration, betrayal, hurt, sadness, horror, fear, bewilderedness, confusion, hopelessness, helplessness, and devastation. Get it out. Get it out lots and lots. And then more. Best to do it with your partner who hopefully is riding this awful wave with you. Be the victim for a bit, but don’t be the victim forever because you have work to do. You have a kid with an awful illness, whatever it is, and your kid needs you. But please remember you have to do this first. It is imperative. Don’t worry, when you need to, you can occasionally come back here, but you CAN’T live here. It simply won’t do you, your marriage or your kid any good. My husband and I sit on our back porch often and have our “victim times.” It connects us, lets us each speak about how we feel, lets us ask each other what we need from each other. We don’t judge each other on where we are in those moments.
I am very much a proponent of attending a support group if it is a good group, if you feel supported and it is helpful to you. Be careful that you are able to separate others’ stuff from yours so your support group doesn’t depress you more. If you don’t have a group where people can relate, check online or with your child’s doctor or care center. If support groups are still not available to you, make sure you get support from somewhere. So many people don’t know what to say. Educate these people to say a few key words “I am so sorry” “That sucks” “What can I do to help you in this moment?” It is also very helpful to talk to other parents who have children or loved ones with the same disease. You can learn from one another as you walk similar journeys. Another good option is to find a therapist who specializes in your loved one’s specific illness. Go talk to him/her as a couple or as a family.
Figure out how you can be your child’s best advocate. Find the best doctors, hospitals, therapists, treatments, medications, and overall care you need for preventative care and for ongoing treatment. Ask others who know the disease you are dealing with and research online or through any form of education outlet you can think of.
About a week after the shock of the diagnosis, I called the Cystic Fibrosis Foundation. I needed to help figure out what to do with this illness I had no clue about. A few months later we were involved in getting our friends and family to partake in a fundraising walk. We made t-shirts for our team and raised a significant amount of money, which all goes to research to develop more advancement in medications and ultimately to find a cure. It was also an indescribable feeling when friends and family came out and show their support. We have participated every year since. My husband and I are very connected to the CF community and continue to serve on boards and committees. My son and husband get up and speak at most fundraisers we attend. I am in the background cheering them on. Know where your strengths are and promote them.
Focus on the Whole Family
I’ve already established the importance of making sure you’re connected with your partner and I’ve talked about making sure you’re taking care of your child with a chronic condition or illness. One thing I would be remiss to leave out is that quite possibly you have other children as well that are not afflicted with this disease. My nine-year-old has often stated he wishes he had cystic fibrosis. He neglects to see with his innocent eyes all the awful realities that this disease brings. What he sees is a few times a year we focus on my son Connor when lots of people come to fundraising events to honor him, most of them are wearing a shirt with his face on it, and then we throw a big party to celebrate him after the event has concluded. It’s not even his birthday or Christmas, but it is all about Connor!! I know my other child really does not want to have cystic fibrosis but he wants his parents to give him as much attention as we give his brother. If you ask anyone who grows up in a household who has a sibling with a chronic illness or disease you will often hear stories about feelings of neglect or a feeling of being lost. A couple things I have found helpful are to do things like have special time set aside several days during the month that are just for my younger son and me. My husband does the same. We also watch a show several nights a week for half an hour where it’s just the two of us cuddling and connecting. And I am not really sure who appreciates it more!
Hardest thing about all of this? I liken it to the Five Stages of Grief that Elizabeth Kubler-Ross spoke about with her stage of acceptance. I still go in and out of this one myself, but the stage I made up I will refer to as “good that it happened to me stage” (I know I can be so clinical in my verbiage!). I think when I am in a grounded place of gratitude, after I have my support, my education, my victim exercised out of me, and feel connected with my rock (my husband) that the reason I have a child with this disease is because I have a charismatic kid who gets up in public and speaks openly about his condition without reserve, and a husband who is a loud Irish-Italian man who is a never-ending advocate for our child. We have resources that some other people may not have to be able to provide the care our child needs. And we have the knowledge to be able to —in a single day—be a victim, speak vocally, get ourselves and each other support, educate others, be involved, have time with each of our children making them know they matter, and have gratitude for every day we are given.
Way too many marriages end due to dealing with a chronically ill child. Don’t be part of that statistic.
- In dealing with a loved one with a chronic illness, there are several ways to continue to work on your coupleship and stay connected day-to-day and during awful times.
- Be a victim.
- Get support.
- Get education.
- Get involved in your community.
- Focus on your entire family.