Being A Mom With A Chronic Illness (ChronicBabe carnival)

Image by Praziquantel via Flickr

My goal in life, since I was five years old, was to become a mom.  I thought getting pregnant would be natural and beautiful but it seemed we needed a little help. After two and a half years of painful shots, medication and an every day visit to the infertility clinic  for blood work and ultra-sounds I finally was pregnant. I collapsed to my knees behind the closed-door in my stuffy office and kissed the dirty gray carpet in gratitude. I cried with happiness, one hand already covering my tiny belly.

My son was born and we called him Buddha baby, he never cried, he was always happy, a smiling, compassionate and outgoing kid.  He was my miracle baby, my first born. I went to every baseball game for my son, sitting in the bleachers in the rain, and sneaking away to the car to warm myself up.

My daughter came, naturally, twenty-one months after her brother was born, screaming on top of her lungs as she entered the world. I remember going into her room and lifting this red-faced baby girl to my shoulders, she would take a deep breath and her whole body relaxed into my neck.  I was her only source of comfort when she was a baby. I was there for every ballet lesson and dance recital, holding a bouquet of daisies, her favorite flower, in my arms like I was nestling a newborn baby‘s head.

I did everything for my kids and I loved doing it. This was the career I decided on and I wanted nothing more. I stayed home with them even when they got older because I knew they needed me during the tough middle school years. They would never admit it but they were happy to see me when they got home. Working moms called me “old-fashioned” but I didn’t care.

When I was 50, I went through menopause and my body fell apart. I was diagnosed first with Hashimoto’s Thyroiditis, an auto- immune disease. When Synthroid, did not help me at all, I warily shuffled from one doctor to another, every bone and muscle and joint in my body screaming with agony.  My internist had given up on me, she stormed out of the room while I was laying there on the exam table crying in pain.  After visits to many different doctors I was finally diagnosed with Fibromyalgia. I felt like I had the flu, every single day and night, with no fever, my personal definition of Fibromyalgia.

My life changed after that. I became the mom “before” I was sick and the mom “after.” I felt that I was no longer the mom you could always count on. I prefaced everything by saying “If I feel okay that day,” and “I’ll call you the morning of…”  Luckily my children were fourteen and twelve but it was now Dad who got up, made breakfast and lunches and dinner. Me? I was asleep, always asleep and in pain.

I felt lost and sad for years, not being able, physically, to be the mom I once was. Now, I am dropped off at an entrance to anywhere we go  like the handicapped patient I am. I sit alone, on a chair, when all the other parents and children go on a campus tour to see the entire campus. I cannot walk that far. I don’t want to be an embarrassment to my children or a burden for my husband.  I want the kids to remember the mom I was before I was sick but I know they don’t. They probably just remember me as I am today. I am not the mom I was before my illness even though my heart remains unchanged. I am the mom that they have now and because of that I have tremendous guilt and a lot of residual, emotional pain.