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Apr 30

Posted by: ACHA
4/30/2013 8:37 AM  RssIcon

By Lorelei Hill

“I am such a terrible mother!” she cried.

We had been chatting in a quiet circle at various places of the Hospital for Sick Children’s 4th Annual Labatt Family Heart Centre Family Conference throughout the day. How many times I have said those same words about myself? Being a congenital mother of two high needs CHD children, most days are very demanding.

This past Saturday, I was asked to sit on a panel of children and parents willing to share a glimpse into their lives with other CHD families. As a group ranging from 4 to 49 years old, we discussed growing up with congenital heart defects and the challenges of transitioning from a children’s hospital to an adult cardiac center. As the attendees filed out at the end, I noticed her sitting alone, looking lost.

This mother was a new immigrant to Canada. She lived in an entirely different set of circumstances than my family, but in her role as mother to two beautiful boys, her experiences were remarkably similar. She told me that her family had moved to this country a year or so prior with hopes for a brighter future. Being the only English speaking member of the family, she had intended to find work as soon as possible. As often happens, the universe had other plans.

Soon after their arrival she discovered she was pregnant. Her baby, whose name when translated to English means “gift,” was born with a number of serious CHDs. Expecting to see a sickly child when she pulled out his picture, I was overjoyed to gaze upon a beautiful baby happily sitting in his highchair. By all appearances, he was a healthy, chubby-cheeked 10-month-old. Her soft sobs told an entirely different story. She had come to the conference to find help for her new son and the 8-year-old she felt she had abandoned.

New to the culture and the Ontario school system, quite naturally, her eldest boy was experiencing behavioral and educational problems. Fearful that no other person would be capable of caring for her baby’s complex condition, she refused to leave him with a caregiver. Convinced she’d be putting the baby’s health in jeopardy if she were to take him anywhere public, she believed the only way to keep him from possible infection was to stay inside her tiny apartment.

“How do I make time for my older son when my baby needs me so much?” she wept.

Exhausted and overwhelmed, until Saturday, she hadn’t had the necessary time or outside support to wrap her mind around her new family dynamic. Living in a foreign culture with a chronically ill baby has made her a prisoner to her home. Formulating an appropriate action plan to help her 8-year-old adjust to being a CHD sibling and Canadian kid has until this day seemed an impossible feat.

“We all think we’re horrible mothers at one time or another,” I said taking her hand. “That only means we are doing our best.”

This mother had come from the other end of the world and quietly reserved her seat at this conference. Risking a day away from her self-inflicted prison, she managed to position herself in the middle of an amazing supportive group of people. Finally, she was in a place where despite language, culture, and self-loathing, outsiders understood. “Your baby and his condition are truly gifts,” we told her. “Just look at what a courageous woman you have become.”

This was also my family’s first time attending the Labatt Family Heart Conference. We had travelled a long way, and spent a good sum of money attending this conference. We’re all so glad we did. Amongst this fun, welcoming assembly of strangers, I met a new friend and felt very much at home. Together we learned how truly extraordinary CHD families really are.

Hello from Ontario, Canada! Lorelei Hill is a mother of two CHD babies, wife, writer/teacher, and a survivor of tricuspid atresia. After graduating with honors from Queen’s University in Kingston, Lorelei went on to teach and travel the world. Now settled into small town life, she is working with other CHD patients and her own cardiac specialists to complete a self-help book for young CHD families, entitled From the HeartClick here to visit her website.

Copyright ©2013 ACHA

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