Parenting doesn't come with a manual that will prepare you for each and every possible situation for your little individual, but what happens when raising a child is combined with, not only a manual-less situation, but with completely unchartered territory, like fighting a life-threatening disease that once killed in months but now can be survived years, be it a long-term cancer, diabetes, multiple sclerosis, IBS, etc. While raising your mini-one? I want the book on this one.
I knew I had cancer before my son turned two.
The masses in my neck from the Hodgkin's lymphoma were not only visible but hard and growing quickly. Meanwhile, I was a young mother (22) and though married, educated with a career (as an RN), people still showered me with unsolicited parenting advice like I actually was the 15-year-old state aid recipient I looked like. As you can imagine, this only became worse, far worse, as my health deteriorated.
The year my son, Xander, turned 3, my "curable" Hodgkin's "Disease," which is often overcome 75 percent of the time with six months of chemotherapy and radiation, returned after the initial therapy. Fighting for a cure, I underwent a bone marrow transplant.
As my strength and health faded, forget about my child, I desperately needed assistance. I clearly needed help for myself. I suddenly had changed from the staunchly independent alpha mom to a sick shell of myself weighed down by restrictions such as avoiding diapers, play groups and people in general. During a time when mother and child should be enmeshed as one, I had to understand that what I wanted was not always what was best for X, and choose what was best for him without regard to my feelings. Worse, I had to make decisions looking towards his future with the harsh realization that I may not be present in it.
Putting your child on the back burner while you fight for your life is easier said than done, and since I had not yet found balance between fighting and parenting, I often made myself sick parenting. This is hard lesson #1 for a mom who is ready to give up the world for her child: What is best for you is best for your child. My health needed to come first. If it didn't, I realized, my son would have no mother.
But asking for help was also a foreign concept, and this allowance opened a whole different can of worms. Co-parenting in general is an inexact science. Co-parenting within a community to assist a seriously ill parent is the Bermuda Triangle of Parenting.
First, we assembled the troops. We put together our support list of people who were willing able and available to help. We listed their phone numbers, times they were available, and jobs they were willing to do such as: making dinner, cleaning, baby sitting, driving to chemo. We posted this on the refrigerator by the calender, and it served as a great reminded of the support we had.
Lists helped greatly. We posted how to get ahold of doctors in an emergency and emergency babysitting numbers. We wrote a list of meals we were capable of eating so if we had a cooking offer they could pick what was easiest to make from a list. We froze meals to reheat. We made a list of grocery shopping needs.
Even the most prepared still have problems when dealing with the unknown, and unbeknownst to me, even our helpers were scared. It's important to remember that, as with life, what a family member, friend or acquaintance says they are willing to do at one point in time may change, and that change may occur without notice to you.
You are still living, and all that happens in terms of a "normal" life will still occur. Friends will come and go. People will disagree with your parenting decisions. They will think they know what's best for you, but what is different is they will not be as able to respond as naturally, due to your illness. When this happens, take a breath and repeat, "They are doing the best they can to help," and remain grateful. However, this does not mean that if a relationship is not working for you that you should remain in it. Continue to have relationships like you would if you were healthy and allow them to follow their natural path.
In our experience, people would "over-parent" me when I was present and healthy. I found each time I spoke up to set a limit, so did everybody else in the room, be it my parents, sister, brother, grandparents, which only complicated matters by stopping me and distracting X from his original error. Where's the book on that one?
In retrospect, I should have set clear boundaries with my well-meaning co-parenters, but I didn't, I just shrunk back, not wanting to offend people I'd asked to assist by telling them now was not the time I needed help. I felt that by needing the level of assistance that I needed I had opened the door to allow take overs of my parenting. Big mistake, not true. I should have clarified when I was well or not, not only for my sake, but for X's, who got a barrage of finger wagging every time I tried to set a limit but no clear message or follow through.
By age four, one failed BMT, an eight-day coma from respiratory distress and continued active cancer, people easily parented over me in an attempt to help. I allowed this, severely weakened from the therapy, weighing 90 pounds to my childs 50, not wanting to do anything I didn't want to, punishing included, feeling I could die anytime.
I felt huge guilt for burdening X's childhood with a cancer stricken parent, which made it difficult to punish him. Often, during that first year of treatment when he was three to four years old, I would disappear in the middle of the night to the ER only to be put in isolation for a week. To the four year old, I would just disappear. On Christmas Eve that year, X asked me to "Spend the night at his house." That is how often I was hospitalized.
To positively cope, we used play therapy and role playing, often in the bath tub with his toys. He would use his dolphins and sharks to show a sick mom being carried by the Dad "rescuing" her. He would use his plastic food to make my cravings and hand feed them to me. What was most important to remember in addressing my disease with him was age appropriate communication. We used toys and skills he would have otherwise been using as a "normal" child to understand life, and incorporated information as he grew.
Punishing was the most difficult, with such fragile health, I didn't want X's last memory of me to be me scolding him. J, my husband, took on the role as punisher, but as with all parents, we had differences.
What's often forgotten is couples still cope with all our parenting differences alongside illness. The illness is just the icing on the cake. All the differences and squabbles over limits, time-outs, homework, etc. are still present and need to be worked through together.
As parents, we'd been hit with more than your average obstacles, and just like with all couples, we did not always agree, we did not always like each other, we could not always cope and communicate together. This is the reality of any relationship, but we agreed our family was bigger than us. We both worked to be the best we could be in the situation: taking anti-depressants, speaking with our doctors and loved ones, getting therapy alone and together, taking time we needed for ourselves to cope.
Again, what is best for your child is what is best for you, and that goes for being a couple or family coping with illness as well.
X had chronic ear infections that led to hearing loss and a speech delay. He started speech therapy at three, but continued having infections and surgery to correct his hearing until he was five. Not only did we have to teach him how to behave appropriately in society, but he had to be taught how to cope with his mother possibly dying any day or time without the use of words. In retrospect, I would have enlisted the "Baby Signing Time" DVDs and taught him some basic communication, but even though my dreams have me playing "super mom," this is real life. J and I worked on having him act out his feelings appropriately, but his anxiety and depression just lead to breakdowns.
His "acting out," as with any child, caused whispers among the other parents, some of whom I had trusted and sought help from, saying hurtful things, talking about solutions among each other, but never bringing any problems to our attention. It is important to deal with any new development immediately, face-on, not only with parenting, but with your disease process. The greatest asset to me has been my ability to be flexible and seek alternate solutions, but that can't happen if you are in denial or uninformed.
It's a choice to face life head on, even if the grim reaper is staring you back in the face.
Remember, This is pioneering parenting. A person can only deal with so much, and nobody knows what a child can cope with. We decided early not to allow our diseases to interfere with family traditions that had been meaningful during our childhoods that we had planned to incorporate into our family's lives.
The best advice I can give, for anybody who is facing a life threatening disease, is to keep living.
Unless it's against doctor's orders or detrimental to your health: Do not stop coaching soccer, cook brownies for the school party and plan an outing to the beach on a "good" day. Life does not stop because you have a disease. Life keeps marching on normally. It's important for your own mental health to embrace this and enjoy yourself.
This is what we did with the support of our family and friends. We coached X's athletic teams so he knew he'd have special time for him with his family. We kept our annual camping tradition and Winter Carnival tradition with help, even if they needed to be adapted. X does not know what we dreamed of, what we had or what could have been. He only knows what he has. We made the conscious effort to give him the best we could. This is an action no one will ever regret. However, we still faced normal challenges alongside a very difficult situation with limited physical resources.
Just when other moms were recommending "time-outs" where you physically remove a child from the situation, I couldn't lift the blanket off my body. I was trying to talk a hearing impaired four or five year old into behaving. This isn't just hard to cope with, it's often incomprehensible to other parents. Finding other parents in similar situations, who had coped effectively before was a great help. I focused my parenting on teaching priorities -- these included manners, but mostly reinforced that the world was a loving, safe place despite his awful situation where God and family are always present to support and love unconditionally.
During a period when temper tantrums are normal, we worked for months just to teach X how to go to a "safe place," like the nurses station or privately to a trusted adult before he had a meltdown. Books and counseling had failed. X was not an avid reader and counseling for the young child is really play therapy. It was still important to incorporate age appropriate coping lessons, but as he aged and developed a personality, it was equally important to teach him how to cope as an individual, using skills that had worked in the past. We used karate, therapists, an in-home behavioral interventionists, but with temper tantrums normal until five, where was the line?
We began to realize the importance of his own friendships as a support system and forming his own "emotional language." All along, we had worked to help him identify what he was feeling so he could "use his words," but this became more important in school age. Just before he turned six, we started to overhaul our parenting. At some point, by necessity, J and I had separated our lives. We needed to rejoin and strengthen our relationship. What we, as parents, together, had not done was realize the importance and focus on our role modeling. All we had done before we lessons without implementation. We had been missing the final step.
Coming together, dedicating ourselves towards X's best interest and agreeing how to reach this goal was what needed to happen. We needed serious family time. We closed ranks, removed distractions and people who could hurt our growth together. I had to admit that X's best interest was to have strength in his relationships with others, especially J and other healthy, lifelong loved ones.
Being the best parent I could be as a cancer patient meant being the most supportive wife I could be as well as a mother. We had to focus on our relationships, our dynamics and how that was affecting x's behavior.
This helped, just as the other things had, but it has continued to work. Only then, together, could we work on X's coping with his anger/anxiety/depression appropriately, no longer just removing himself, but getting him actual coping skills, an emotional language. Of course, with him then being six years old, it helped he could finally hear, but dyslexia had taken over as our new obstacle. We worked with him to become more successful at using outlets for his emotions, a concept introduced by our in-home behavioral interventionist, such as ripping up paper, punching/screaming into pillows, using a punching bag while yelling his frustrations, running laps or kicking a soccer ball.
Once he had used these physical outlets to decompress his emotions, he could calm down to discuss his actions, using the building blocks and words we had introduced before. Our due diligence early has allowed X now face new challenges with motivation, not frustration, and address difficult situations head on to find solutions.
It is true what's been said, "Kids are resilient," and I've reminded myself of this often during our struggles. I've also reminded myself that studies show most successful adults have overcome severe childhood adversity. At seven years old, X started with a new counselor, group therapy and we continue with our family traditions, such as coaching his athletic teams. Is X "fixed?"
No, but neither is my disease. This isn't a fixable problem because it is not broken.
It's life. It is what it is. We do the best we can with the information we have at the time, and that goes for parenting, even parenting in the face of a life-threatening disease.