BETH SUFIAN & DAUGHTER ISABELLA
Before becoming a parent I think you need to make a renewed commitment to your healthcare.
Taking Good Care Of Yourself When You Are A Parent Who Has CF
Being A Parent When You Have CF–Winter 2003
BY BETH SUFIAN
Being a parent is hard work. Being a parent and having CF is really hard work. I have been a parent for a little over a year now and I suppose that means I should (and do) have some definite opinions on being a parent who has CF. My husband and I adopted our fantastic daughter from Changzhou, China and she arrived in Houston on November 1, 2001. I have written about our wonderful adoption experience in the CF Roundtable winter 2002 issue. Our daughter continues to bring us an incredible amount of joy and there has not been a second that we have regretted our decision to become parents through adoption.
For me, the idea of being pregnant and all the health risks that come along with pregnancy did not seem like the healthiest way to become a parent. After all my goal was to be a parent not to experience pregnancy. I was assured that my decision to adopt rather than become pregnant was an extremely wise decision after my first day of parenthood. If I had gone through a pregnancy, I strongly suspect I would have gotten deathly ill when it came time to care for my baby. As it was, I was handed a 10 month old baby and after about 2 weeks I was exhausted and could feel my good health slipping fast. Parenthood is a very physical job. I had the benefit of becoming a mother to a 10 month old who basically slept through the night which really helped but I never could have imagined that the first few weeks and months would be so challenging.
I have historically been an extremely compliant patient. I get a lot of relief from my treatments, rest and good nutrition so it has always made sense for me to take good care of myself. After two weeks of motherhood I will admit my compliance level was at a lifetime low. When I had decided to start the adoption process, I had promised myself that I would put my health maintenance above everything because I knew that was the only way I would be able to take care of my daughter and watch her grow up. I also promised myself that I would ask for help when I needed it. However, once Isabella arrived my promises seemed to fly out the window. I became concerned with what others thought, and I think on some level I felt I needed to show those who had told me I could not be a mother if I had CF that they were wrong. It seemed that everything during those two weeks took precedence over my health. Finally on day 14 of motherhood, I found myself extremely happy to be a mother but exhausted. I took stock of what I had been doing. I renewed my promise to take care of myself and jumped back on the CF treatment bandwagon not a minute too soon. In order to do so I had to renew my promise to ask for help and I had to stop feeling like I had to prove that I could be a good mother with CF. Once I did those two things my ability to take care of myself and feel good increased dramatically and I was able to avoid getting sick.
Since becoming a mother, I have spoken to many adults with CF who are contemplating becoming parents. I think there are some very important things that adults must consider before becoming parents either through adoption, pregnancy or surrogacy. First, and I think most important, you must be sure that you are 100% committed to your healthcare. If you have not been a very compliant person and are not good at taking care of yourself you will find parenthood extremely difficult. Before becoming a parent I think you need to make a renewed commitment to your healthcare. I know from my own experience that having a history of being compliant helped when I started to fall off the wagon. I have no idea what would have happened if I had not caught the error of my ways or if I had been a person who was not compliant. I do know that a person with CF who does not take care of themselves and becomes a parent is a recipe for disaster. Second, I think it is important to have some sort of support network that will be able to assist you with the care of your child. A spouse or partner who shares equally (or sometimes takes more than their fair share) is essential. It also helps to have relatives or good friends who can help or to have the financial resources to hire people who can assist with childcare and household work especially if you plan to work outside the home. Even if your primary job is taking care of your child you will find there will be times when you need help. For a while, I even hired a friend to grocery shop for me when there did not seem to be enough time in the day to do everything that needed to be done. Lastly, I have found it very helpful to be in contact with other parents who have CF. Parents with CF can provide a lot of emotional support and practical advice specific to being a parent with CF such as how to do a treatment with a toddler sitting on your lap.
Parenthood is an incredible experience and I love being a parent. However, I think the idea that your life will only be fulfilled if you have a child is not true. The decision to become a parent is a serious one and should only be made after serious thought and consideration. Just as parenthood is not for everyone in the general population, it is not for everyone in the CF adult population. As some readers wrote in the last issue, there is much enjoyment that can come from being an aunt, uncle or godparent or from a variety of other fulfilling endeavors. I hope all of the CF Roundtable readers find things and people that make them happy in this new year.
Beth Sufian is an attorney who focuses her law practice on representing individuals with CF and other disabilities. Her email address is: bsufian@usacfa.org