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The Balance of Parenting a Child With a Rare Disease and a 'Typical' Child

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He pulled in close to me and nestled his head in the crook of my arm. These simple displays of affection are some of my most treasured moments in this life. He is brilliant, exuberant, affectionate, and unapologetically his unique, 7-year-old, self.

He has healed me and broken me. He is healthy, but his older sister was born with a rare genetic disorder. With his help, I have grown into the authentic and unapologetic mother both my children need.

When he was born, I was a mother with a deep-running crevasse through my soul. Shattered by the ever growing medical complexities of our daughter, I could not imagine a motherhood that was more than survival. Only 20 months younger than his sister, I was still in shock and grieving the loss of the motherhood I imagined.

My early motherhood was ruled by fear. The deep and enduring love I had for my child terrified me. Love is both light and dark –powerfully abiding affection and compelling fear of loss. I was stuck in the terrifying shadow of loss. Even my son’s birth did not pull me from the precipice of anxious mothering. When something rare and devastating happens to one of your children, it can seem as though that soul shattering devastation is what one can expect.

When he was an infant, I spent many-a-night stripping him naked and inspecting him for any signs that he might have the same rare disease as his sister. I did not understand the calm mothers who surrounded me; I could not comprehend why they told me to relax or their gentle reminders that he was healthy.

Yet, as he grew and surpassed milestones his sister had yet to achieve, I realized that mothering in fear was a choice. Time and fate would march forever onward and nothing I did would change that. In the meantime, sidled right next to that fear was the warmth and ease of adoration. I need to learn to appreciate both.

His ease and health healed me. Then suddenly broke me again as accepting his bounty highlighted my daughter’s challenges. I emerged in the in-between and my motherhood blossomed. And as time passed, I was continually broken and healed anew with each passing phase. When he began speaking sentences, went off to kindergarten, to the day he asked me what would happen when my husband and I died and wondered if he would take care of his big sister.

As a mother I am fierce, deeply loving, silly, reserved, playful, regimented, anxious, confident, unapologetic, fearful, and resilient. I am the mother I am because of all that my children have gifted me.

Getty image by ChristinLola

Originally published: August 1, 2019
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