I grew up in the seventies and early eighties where the examples of motherhood were depicted in shows like The Brady Bunch. All of the families problems were solved in thirty minutes. Carol Brady was never tired or sick and was able to raise six children without ever raising her voice. I regarded my Mom as being just like Carol and knew when I had my own children that I would follow in the footsteps of these perfect women. It wasn't until I had my first son that I realized what I thought was the reality of motherhood was actually a fantasy. Along with the learning curve of being a young first time mother, I also would find myself battling a never ending chronic illness.
I grew up with a mom who never stopped. She was always doing something. From the time her feet hit the floor in morning until those same feet went under the covers at night, she was in motion. I have been told the story of how when I was just two days old my Mom was right back at the elementary school (with me in tow) that my two older siblings attended. She was in charge of the entire spring fair that was taking place just three days later. My Dad worked out of town Monday through Friday my entire childhood so I watched my Mom take care of the three of us all by herself. She seemed unstoppable. I can count the number of times that she was sick in bed on three fingers. Growing up I was under the distinct impression that moms were always busy doing mom things and they were never sick or injured. There was the time when my Mom's thumb was crushed in a car door. Before going to the emergency room, she made sure each of her children were taken care of with our homework done and dinner served. Then and only then did she finally go and have her finger looked at. I had no idea this incident had ever taken place until I was in high school. I guess my Mom learned the art of never stopping from her Mom. For example, I will share the fact that my Grandmother was still taking care of my ailing Grandfather while she herself had broken ribs from her fragile bones giving up. The bar had been set pretty high for me in terms of being a caretaker to all but myself.
I was just twenty years only when I had my first son. The delivery was insanely difficult. I went home from the hospital with a newborn, twenty stitches and a catheter. With all of the endless dedication that I had experienced with my own mother, I plunged deep into being a first time mom. Even stitches and bag used for urine collection strapped to my leg couldn't keep me from staying busy taking care of this precious baby. At that point in my life, it was the single hardest thing I had ever had to do. I was not prepared for what it really took to ensure the health and happiness of another tiny human being. I had grown up witnessing my Mom seamlessly take care of me and my two siblings by herself. She made it look so easy. I never saw her cry, be angry (maybe once with me because I was so sassy) or seem overwhelmed. I told myself to soldier on and stay busy.
Imagine to my utter dismay when my first son was just two years old, I found myself very ill and unable to preform the most basic mommy activities. I spent an entire month unable to leave my bed. My family doctor claimed that I had contracted a very nasty stomach virus and would just have to ride the storm of horrible symptoms out until it passed. My husband and I owned our own business at the time and he would have to leave me at home alone with a very mobile toddler for up to twelve hours at a time. I remember putting my son Ian in bed with me and running the same ghastly video tape (this was back in 1997) that had clowns in it over and over again because it would make him stay still. That memory is seared into my memory because I remember thinking that the situation I was in (having to put my baby in a playpen every five minutes so I could race to the bathroom) had never happened to my Mom. Or...at least if it did happen, she never told me and I certainly don't remember anything this horrible happening to her. If it wasn't enough that I was so ill I was also berating myself for not being strong enough to overcome a simple stomach virus. I wasn't able to move and stay busy with my mommy responsibilities. I should have gone to the emergency room but that would mean that I had something more than just a stomach bug and the ER visit alone would take me away from my job as a mother. I never got over that nasty stomach virus. That simple stomach bug lingered and morphed into a chronic illness. I developed daily aches and pains. Every time I ate, I would feel bloated and nauseous. I also suffered from debilitating migraines. I learned to cope with my ailments but knew that what I was experiencing was not normal. I had been seen by several different doctors and none could figure out why I was still feeling so ill. I felt hopeless and trapped in a body that was wasn't working right but I couldn't let that show on the outside. I had to be strong for those around me even though I was slowly falling apart on the inside. No one knew the extinct of my illness, not even my husband. I didn't want those closest to me to think I was losing my mind so I kept my illness to myself.
When Ian was about four years old, I went on a vegetarian diet. I felt better eating this way but I was always starving. Just feeling that little bit of relief felt like a miracle and I was willing to ignore the constant burning feeling of hunger. About a year into the vegetarian diet my symptoms both mental and physical stabilized enough that my husband and I decided that Ian needed a sibling. I got pregnant very, very quickly. During this second pregnancy, I felt the best I had in five years. I could eat anything I wanted which included meat and so I went off the vegetarian diet. Maybe I had turned the corner with this strange illness that had plagued me for years. My body seemed to know exactly what it needed to provide for this baby growing inside of me. My second birthing experience was nothing like the first. I delivered Luca without one single complication. He was perfect and I was beyond excited to have this baby boy complete our family. I went home with Luca the day after his birth and I felt so good that just two days after he was born, we hosted a birthday party at our house for my Dad. Little did I know that just a few short weeks later my world would come to a crashing halt when once again my health would take a turn for the worse again. All of my previous symptoms came back but this time they showed no mercy. I lost the forty-seven pounds I had gained during my pregnancy in just three weeks. The experts say that the healthy way to lose the “baby weight” is to give your body the same amount of time it took to put the weight on (in my case eight and a half months). I knew that taking care of a newborn and a five year old all while being so ill was going to be difficult. What I didn't know was the amount of stress I put on myself trying to mask the pain I was in constantly from everyone, especially my boys was ultimately making my illness even worse. I had already been to countless doctors trying to find out what was wrong with me. When a doctor looks at you and tells you that there is nothing that he can find that would explain the chronic symptoms you have been having (at this point for four years) you start to believe that it is in your head. I knew I wasn't imagining the bloating, nausea, body aches and migraines. I knew that I was going to have to be the one that finds the answers to my own health problems. It turned out to be a much longer and difficult road than I would have ever imagined.
Days, months and years passed. I found myself trying harder and harder to hide my chronic pain. Mom's aren’t supposed to be sick...at least my Mom wasn't. Mom's are supposed to be active and participate in every single detail of their children's lives, not be stuck in the bathroom or having to lay in a dark room for hours at a time. I was really good about hiding how awful I felt from my boys while they were young but as they got older, it got increasing hard to come up with plausible excuses why we would have to leave somewhere fun because I wasn't feeling good or, why I couldn't leave the house at all. I was going to have to admit to them that I was defective. There is nothing more shattering to a mother's soul than realizing that she is never going to be the mommy she always wanted to be. It was time to level with my boys and tell them the truth. Up and until I had this conversation with them, I had never let myself get upset or cry about my continued health challenges in their presence. It was of the utmost importance that I not allow them to see me at my weakest moments. I wanted to appear strong both mentally and physically for them because that is what I grew up thinking moms were supposed to do.
My boys were nine and fifteen when I finally couldn't hide anymore. I sat them down one at a time because the age difference (six years) and explained to each one what was really going on. For Luca, the youngest, I told him “Mommy was sick and didn't know why”. My stomach seems to be upset all the time and I need to eat a special diet (gluten free) to see if it helps. I can't eat the same foods everybody else does but that's okay. I sometimes have headaches that take a long time for them to go away and that's why I can't get out of bed sometimes. Even when I don't feel good, I still love you to pieces. Me being sick has nothing to you and is in no way your fault. Then I started to cry. Not a big ugly cry but a soft trickle of tears running down my cheeks. Luca looked at me and said “I know you don't feel good sometimes but then you feel better and you always take care of me no matter what...so it's okay”. Much to my surprise, Luca already knew that I was sometimes sick (even though in reality I was sick almost everyday). I realized that I had not hidden my chronic illness from him as well as I had thought. When I heard the simple reassuring words “it's okay” from my young son a small portion of my “mommy guilt” ridden heart healed.
For Ian, the oldest, I decided to just ask him if he knew that I was suffering from a chronic illness. I mean, if my nine year old already knew then it would be an insult to Ian's intelligence to think he didn't have a clue to my constant battles with my body. He told me that not only did he know but that he wanted to finish high school and pick a major in college that would allow him to find a cure for my undiagnosed illness. The look in his eyes made me me cry and this time it was a big ol' ugly cry. The look was not of sympathy or pity but of sheer determination to help his Mom who had been ill for as long as he could remember. It was at this moment that I realized that being chronically ill was a subject that was no longer taboo to talk about. I was going to be honest with them from that moment forward. Honesty would be a part of my healing. It had been so important to me that I hide my suffering that I prevented my boys from being part of my healing. In my quest to be as strong as my Mom and my Grandmother seemed to be, I had really caused myself to become physically and mentally weaker from the stress of disguising my health challenges for so many years.
Three years after the conversations with my boys, I was finally diagnosed in June of 2013, with a condition called gastroparesis. The very short definition is that my stomach does not digest food properly. Gastroparesis is a side affect of another condition called dysautonomia. Dysautonomia refers to a disorder of the autonomic nervous system. Some of the automatic functions of my body are dysfunctional. As the name implies, the autonomic nervous system carries out functions without conscious thought. The autonomic nervous system is responsible for heart rhythm, sweat glands, body temperature, involuntary muscle movements, digestion and much more. Although I do not have problems with my heart or muscle movements, I do have problems with my sweat glands, body temperature and most troubling my digestion. I have to eat a very specific diet (no wheat, barley, oats, rye, dairy, eggs, nightshades or shellfish). If I eat anything that my intestines don't approve of, my body begins to pick a fight with itself and the result is an autoimmune reaction. I can feel like I have the flu with body aches and pains, headaches, stomach distress and total exhaustion. It took seventeen years of doctor visits, dozens of tests (blood, urine, upper GI, lower GI, endoscopies, colonoscopies) and sheer determination to finally get an answer. I am very familiar with the saying “Careful what you wish for”. I finally got the answers that I had spent almost two decades searching for. Finding out that my illness can never be cured and only managed was almost too much to bear. As of this present date there is no cure for gastroparesis. My whole adult life I have been in control of everything but my health and now with the certainty that I will never be able to force my body into curing itself was devastating. I am a fixer and I cannot fix me.
Here I am, six months after my diagnosis and still in a state of shock. I have been told by my therapist that I am going through the “stages of grief” and must allow myself this time to except my diagnosis. As I said before, I am a fixer so my brain will not give up on my body. I am still stuck in the first stage...denial. No matter what stage of grief I am in, I am still a mom to two boys. As any mother knows, parenting is a 24/7 job and it waits for no one whether you have an illness or not. As I sit to write this, I think about my seventy-six year old mother-in-law. One day she is decorating her house for the arrival of her children and grand-babies. The next day she went to have a routine colonoscopy and was diagnosed with colon cancer. She had been in pain for months but wanted to get through Thanksgiving and prepare for Christmas. It was so important to her that her house was ready for her family that she ignored her constant discomfort. It doesn't matter how old you are, once a mother, always a mother.
Now that I know my boys understand why I may not feel well, the pressure to keep it a secret has almost completely disappeared. They helped me to realize that my illness is a part of me but it is not who I am. I also learned that I was not as clever as I thought when it came to hiding my ongoing problems from them. My boys are smarter and more perceptive than I gave them credit for. When I was open and honest about my chronic illness, my children accepted me with loving arms. Part of the management of my illness is finding ways to keep a positive outlook every single day. Even when I can't get out of bed until lunch time, I still feel blessed to have the strength to make it through another day. On the days I feel good, I try to make the most of my time. You only get one life and I choose to go to bed praying that when I wake up, it is going to be a good day. Sometimes my prayers are answered and sometimes they are not. I may not be Carol Brady but my boys think that I am their perfect mother and that is all I ever wanted to be.