My 74-year-old mom unexpectedly passed away two weeks ago. It is still surreal to even type that statement. She was such an important presence in my life and my family’s life.
My daughter Abby, who has Sanfilippo syndrome, had a very special relationship with her. My mom kept Abby almost every weekend to provide respite for my husband, my other daughter, and me.
Abby’s condition has caused such cognitive decline that she seems to me to be unaware of my mom’s death. Her language is confined to about 5-10 words, and they are usually not relevant to her surroundings. I think it is a blessing that she seems unaware. However, I do think Abby knows her “Ma-Ma” is not in her life anymore, and she misses her. How could that strong of a bond leave no trace of existence?
I try to find the good in most occurrences in my life. However, it is exceptionally difficult to find a silver lining in this situation. The reality of my mother aging while Abby’s disease is progressing always presented a huge dilemma for me. I often wondered who would die first. Although it is a morbid thought, it is the reality I have lived. I knew if Abby died first, my mom would struggle to cope with it. My mom would tear up when Abby left her house after the weekend to return home. She truly loved Abby with all her heart. If my mom were to lose Abby, she would likely soon die from a broken heart herself.
This is a tiny silver lining in my mom’s death preceding Abby’s. It also gives me comfort knowing that my mom is in heaven waiting for Abby to join her. I hope that it will ease our suffering a little when Abby does pass away. She will be led throughout heaven by “Ma-Ma,” meeting family, friends, and pets who have already passed. What a glorious reunion I envision.
The Easter season could not come at a better time for me this year. It is incredibly sad to not share it with my mom, but I know she is in a better place and at peace. My faith helps lessen the blow and soften the fall while grieving my mom’s loss. Knowing that this life is not where it ends and that we all will reunite again one day provides such solace.
Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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