Motherhood – One Special Journey

As a pregnant 39-year-old soon-to-be mother, I had no idea of motherhood. I could read books on the subject and still have no inkling what my future as a mother would look like. My focus instead became eating right and wondering how I would look in maternity clothes.

Soon the time came for my first sonogram appointment. We were two giddy parents excited to find out our child’s gender. We would rejoice either way. I had a name picked out for a girl but not for a boy. We’d have to contemplate boy’s names depending on the sonogram results.

I’d never had a sonogram before. I expected to see clearly the outline of my child and perhaps even decipher gender. Instead, the reality did not depict what I’d seen in the movies. I couldn’t make out anything on the screen. The technician’s silence confused me. She abruptly ended the session motioning for me to change. I brushed off the exchange hoping the doctor would explain things to me.

The doctor arrived to meet us in his office with a long computer printout in his hands. He told us we were having a son. My husband and I exchanged a look of pure joy. But, this joy turned to concern as the doctor proceeded to tell us our son’s growth was behind, significantly. He recommended we have a high level sonogram completed to know more.

My breathing shallowed. I clasped my chair wanting to bolt from the office. After the doctor shared my son’s measurements and his concerns, we agreed to have a high level sonogram done. And then we quickly left.

My first act of motherhood was a fierce desire to protect my boy and prove the doctors wrong. My son may be small, but he would grow, I consoled myself. In the months to follow, the predictions of my son’s health grew from concerning to dire. As in “not compatible with life” and “lethal”.

I mentally battled these dire reports. No guide told me how to be a mother when faced with these circumstances. I lived on faith and prayer. And an inner knowing everything would be okay despite the predictions.

The day arrived. My son entered this world diagnosed with a rare and lethal form of dwarfism called Thanatophoric Dysplasia. Seeing my son in the NICU, I did not see a diagnosis but a beautiful child I prayed with every fiber of my being to survive. His arrival began an introduction to a medical world I never knew. It also began my role as a mother… as a special needs mother. What prepares you for such a role?

For me, one family in the NICU stood out as an example. Placed in an incubator next to my son’s crib, a member of this wee girl’s family stayed by her side constantly. Love dominated their devotion to this child. So, I followed suit.

I stayed by my son’s side while on maternity leave. Once back on the job, I would visit before work, at lunch and after work until the NICU closed for the night. Six months later, my son came home from the hospital with loads of equipment and full-time nursing care. I’d also received intensive training in special needs motherhood. Being present, learning how to care for my son’s needs and a protective momma bear instinct I’d never known before.

My son is now an 11-year-old full of life, joyous boy. If I were to sum up my motherhood experience in a few words, I’d say, “love and prayer.” And special; very special. How is your motherhood journey special?

Evelyn Mann
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