When a Parent Becomes Ill

Nothing is as life changing as surviving through a major illness or injury. It causes a person to rethink their whole life. A person who has survived cancer or a life-threatening illness is changed forever. Additionally, when you are a parent of a child with special needs, the addition of illness can seem like an impossible obstacle to overcome.

I was diagnosed with ovarian cancer a little over three years ago. (For those cancer survivors out there-I hit my three year mark, YEAH!) Ovarian cancer is a particularly difficult cancer because its symptoms are very vague and hard to recognize as cancer. Symptoms of ovarian cancer include bloating, lower backache, reflux, and abdominal pain. There is no test for this cancer, and the cancer tends to be chemo resistant. Each year, 22,000 women are diagnosed with ovarian cancer and 16,000 die. It has a 75-90% recurrence rate. It's a cancer with a tough prognosis.

So if you can, imagine my shock at this diagnosis. Then, think about being a 38 year old mom of four adoptive children who have special needs. And I'm a spouse to a husband who works long and hard hours at his job. Having cancer changed my life forever. Here are a few things I learned.

1. My kids continued to grow and even flourish while I was sick. The world didn't stop spinning when I layed in bed for two years. The dishes got washed, the laundry got folded. Someone made meals and got the kids off to school. I wasn't needed for all that.
2. I may not have been completely needed, as I thought, but I sure was missed. My kids matured more than I thought they could. My disabled son took on a caregiver role in my life (as much as he could). He would come home from school every afternoon and peek around the door as he entered the house. We have a split entry and he could see me lying on the couch. He dropped his backpack, went to the sink and poured me a glass of water. Then he brought it to me at the couch and fluffed my pillow. Each and every day.
   He made sure the walkway was clear before I left the house. The kids made sure I had my walking stick near me so that I could walk easier. They learned how to be gentle near me and not hurt my "owies" when they gave hugs. They took care of ME! And they enjoyed it.
   I don't remember as many tantrums or problems. I hope there were fewer. I'm sure my husband just shouldered the hard days just like he shouldered the difficult thought of losing his wife and the thought of becoming a single parent of children. I know that they were all scared. And I was fighting for my life.
   My daughter would wet her pants every time I said I had to go to the hospital. We learned not to say the “H” word. The kids became worriers. They fretted about me, and worried about me when they were at school. There wasn’t much I could do to help them, because I was feeling the same fear.
3. Being very sick makes you re-evaluate the things you spend your time on. I don't worry about the state of my house or other silly things so much anymore. I want to make sure that the time I spend with my family is full of quantity and quality.
4. I realized that I was stretched too thin in every direction. I was on too many committees and involved in too many things that, in the short run, really didn't matter all that much. And being sick gave me the perfect excuse to quit everything. I learned that it was important to say "No".
5. I invited spirituality back into my life. Ok, at first it was a desperate, please God don't let me die kind of way, but after that initial wave, I worked regular prayer back into my life. And much of it was a prayer of gratefulness for my life. And it helped.
6. I had to learn to ask for help past my comfort level. Coming from a Horatio Alger-type family, that was tough. But the fact of the matter is, we needed help. I was basically bedridden for two years. Hubby had to work. We had meals made for us. My sister helped in so many ways I can't even list them.
   People cared for the kids so that my husband could be with me in the hospital (4 weeks worth in time). Friends drove me to chemo and numerous other appointments. I didn't have a choice. I HAD to ask for help. It was good for me to not be so independent. I realized that it was OK to rely on someone else once in a while.
7. I learned that in order for me to take good care of my family, I had to learn to take care of myself. And, unfortunately, it took a life threatening illness to realize it. I am taking better care of myself now, and I'm healthier now. Maybe not the best health of my life, but hey, I take it one day at a time. I take time to exercise every day now, because it's important, and I can't put it off. And it makes a difference in my mood and my body likes the workout. I'm a cancer warrior, and I'm preparing for my next battle.
8. I could still die. Many times people will say, "Well, sure. But you could get hit by a car tomorrow and die. You just never know." Those people have not knocked at death's door and had the door open a crack. The comment is just too flip. My cancer can recur, and the odds are it will. And when it does, I hope that I survive it again. The only thing I'm guaranteed is Today. And I plan on living it the best way I can. Because if I’m going to be a loaf of bread with a short sell date, I want to be banana bread with chocolate chunks. And I want people to enjoy me!
9. Being sick has allowed me time to think about what is important in my life and the direction I want to take with my life in the future. I guess it’s like having an emergency mid-life crisis. I don't want to forget the focus this illness has given me.
10. We lost two years. We don't remember the things we did. It was a difficult time. I'm sure we laughed as well as cried on many days. We had birthdays and we celebrated holidays. It's all a bit of a blur. It would been nice to journal all this, but I didn't.
11. That big bully GRIEF took over our lives for a while. Especially when I finished my will and no one would agree to take my two most difficult children in the case of our deaths. I was angry at everyone for that one. It also made me resolve to get better so that I could be around for my kids. I need to survive at least until they graduate from high school. I also realized that I need to make transition plans for my children, and put services in place for them starting at a young age. I need to write out a plan for my kids who will need supports all their lives.
12. Nothing matters more than my family. School can be hard for my kids, and sometimes teachers try to push things on my kids and me to work on at home. Things like extra assignments, unfinished work assignments, and projects that are beyond my child's capability. We will try it, but if school stuff starts creating problems at home, we throw it out the window. Because nothing matters more than the relationships I have with my children and my spouse. And I won't ever let anything hurt those relationships again. They are too important.

I don't want to forget the lessons I have learned from surviving my cancer. I sat down with my husband recently and told him that I wanted to do some life planning. He was so pleased, and got together all our financial stuff and presented me with a retirement plan. I shook my head and told him I wanted to plan out vacations for the next ten years in warm and sunny locales. And we are!