Children with Sanfilippo syndrome often have neurotypical siblings. These are rough waters for parents to navigate. You love them equally, but how do you adequately care for their differing needs?
My oldest daughter, Abby, has Sanfilippo syndrome. Her sister, Emily, is unaffected. Emily is incredibly smart, beautiful, kind, and funny. My husband and I are blessed to have her in our lives. She recently graduated from college and is working, but living with us for a while before finding her own place. I love having her at home. She is joyful and often lifts my spirits.
But raising her alongside Abby was difficult. Emily did not always understand the different expectations for her and Abby. She knew Abby had special needs, but she thought it unfair that Abby got away with more.
It was a difficult dynamic for a child to understand, and the mindset stayed with Emily for a long time. Although we made sure she knew that she was loved, she was resentful.
Because of this, Abby and Emily were not extremely close. How do you have a normal sibling relationship when you are younger, but act as the older sister? Emily did not have an older sister she could confide in, go shopping with, or ask for advice. I think she mourned that loss. As her mom, my feelings ranged from anger to sadness. One day I would be angry when she would act out, and the next I would just want to hug her. I am sure I did not always do the right thing.
Fathers and mothers often react differently to their children’s actions. This sometimes was the case for me and my husband, Jeff. He had a stricter parenting style. He believed Emily was smart, knew the right way to act, and should comply with our expectations. I was more emotional about it. I felt that she deserved some latitude. I probably gave her the benefit of the doubt a few too many times.
Jeff and I always worked it out, but it was a strain on our marriage. It was a lot of baggage on top of raising and advocating for Abby. But I cannot imagine raising my girls without Jeff. He is a warrior and my constant throughout everything.
We didn’t know about Sanfilippo until Abby was 22. Now that Emily understands it, she has let go of the resentment. She helps care for Abby, and is involved with our annual March fundraiser.
Parenting these girls has had unpredictable side effects. One positive outcome is how it shaped Emily’s character. She seeks out those who need help. She has decided on a career in special education, and I know she will be an exceptional teacher. She also writes a column for Sanfilippo News — check it out!
Emily exudes love, and those lucky enough to know her feel it. She is a positive force, and she makes the world brighter.
Note: Sanfilippo News is strictly a news and information website about the disease. 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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