Special emotions

As written by Rachel, Mom to Hannah

Being a parent of a child with cancer brings so many emotions. Some of them are obvious like sadness, fear, and anger, but some of them can only be known by those select chosen ones. One of the biggest emotions I have experienced has been guilt. Although childhood cancer has no known cause, a mother can’t help but wonder what she did wrong that her child wound up with cancer. Was it something I did while I was pregnant? Is it something she came into contact with as a baby? No matter how much those doctors tell you that it was nothing you did and no way you could’ve prevented it, those thoughts never leave your head. Then you have all the people out there suggesting things that can cause cancer and although they may have the best intentions, it just makes a mother feel even worse. You just want to shout from the rooftops that there are just some things that can’t be explained! I also experienced guilt because Hannah was experiencing pain for a few months before she was diagnosed. The doctors don’t feel like all of it was related to her leukemia, but the back pain that brought us into the hospital, that she had for a month prior to diagnosis, was. I thought she was just having muscle pain and encouraged her to continue on with her activities. She had a dance recital a few weeks before her diagnosis and was in pain that day. I encouraged her to dance anyway because she had been preparing all year for that one day. She did and I could tell she was in pain while she was up on that stage dancing. Little did I know that the pain she was in was from leukemia eating away the marrow in her bones. When we found out she had leukemia only a few weeks later, I felt horrible. I knew something was wrong with my little girl, obviously, but I never could have imagined that it was something so serious.

Something else us “special” parents get to feel is guilt over not spending enough time with our other children. Hannah has two little brothers, age 6 and 4. My husband, their dad, works long hours and I am a stay at home mom. I have always been so happy that I have been able to stay home with my kids while they’re so young. However, when Hannah was diagnosed I obviously couldn’t be two places at once. She was diagnosed in the summer so we had to find care for the boys. Thankfully we have a lot of help from family and we were able to get them into a summer program and then after school care when school started back up. I felt like a horrible mom that I wasn’t the one spending time with them, that they were uprooted from their lives and spending time in places that they’re not used to being. I felt, and still feel, like they’re going to forever hate me for not spending time with them and always being at the hospital with Hannah. We do our best explaining to them that Hannah is sick and needs someone to be at the hospital with her because wouldn’t they want mommy with them if they were sick and in the hospital? I think they understand, but that fear and guilt is always there for me. Talking to your child on the phone and having them cry and beg for you to come home and likewise having your child with cancer beg to have her family back together is excrutiatingly painful.

Another emotion that caught me off guard was remorse for the loss of our former lives. A childhood cancer diagnosis forever changes the life of not only the child with cancer, but the entire family. When I used to complain that we had to be at several different activities at once during the evenings during the week, I was now wishing that was our major dilemma for the week. Going on Facebook or any other social networking site and seeing pictures of your friends kids that are your child’s age or in your child’s class doing normal typical childhood things send you into a tailspin of emotions. Not only did Hannah have to miss out on her activities (dance and soccer), but her brothers did too (karate for both of them, football for our 6 year old, and soccer for the 4 year old). I didn’t want to put the burden of taking them to their activities on the family members that were watching them. At the beginning of Hannah’s diagnosis, we were told that she’d be in treatment for 2 and ½ years. That’s 2 and ½ years that every time she gets a fever, we’re sent to the hospital. Now that Hannah had a bone marrow transplant, although chemotherapy is over, her immune system is so severely compromised that we must stay at home for approximately 6 months. Our 6 year old has begged to go do things on the weekends, but we have to tell him no because Hannah can’t do that. Once again, it’s absolutely heartbreaking. Then you have the people that say “That is great that Hannah is all better now!” Well, yes, but she will never truly be the same that she would have been without having leukemia. Her bones are severely weakened from the leukemia and from steroids that are part of the treatment. We’ve been lucky enough so far, her organs can suffer effects from the chemos and the radiation. Her skin is forever severely sensitive to the sun so we need to be extra careful that she doesn’t spend a lot of time in direct sunlight. Hannah’s life will never be the way it would have been without a childhood cancer diagnosis.

Another unexpected emotion that I’ve experienced as a parent of a child with cancer is pride. You really have to meet a child with cancer to truly understand. Each and every child I have met has this aura about them that emits positive energy. Hannah has amazed me more times than I can count with how strong and positive she is. Several times I’ve watched a video online that touched my heart or learned of a child that isn’t doing well, has relapsed, or even died and it upsets me. She’ll come into the room and see me upset, sit next to me and give me a look with those beautiful blue eyes and say “Mommy, it’s going to be ok.” We were in the hospital for a month this past fall because Hannah had gotten a fever and her counts were too low to go home. Our neighbor, a 16 month old baby that had leukemia. Hannah loves babies and grew especially attached to this little girl. Every time we walked past their room she’d peek in and wave. She asked about her every day. A month after we went home she passed away. This little girl had her whole life ahead of her, had that aura that I mentioned before, had a smile that could melt your heart, had tons of energy and squealed with delight in the hallway despite what her little body was going through. Of course it upset me terribly and I cringed with the thought of telling Hannah that she had passed away. Little did I know that my 8 year old daughter would take that news with grace and calmness. I couldn’t get the words out without choking up. She looked at me came around to my side of the table, hugged me, and said “It’s ok Mommy, because she is in heaven and she can play all day long now.” My little girl that I was afraid to tell for fear that she’d be upset or scared was comforting me! I will forever be amazed by the strength she exhibits and I am so proud and honored to be her mother.

I’m obviously not thankful that my child has cancer, but I’m thankful for many things that this diagnosis has brought to our family. I have a greater appreciation for the little things in life and for the special people in this world.