When Pushing Forward Is the Only Direction to Go

When Pushing Forward Is the Only Direction to Go
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Loss is a theme that persistently has occupied my thoughts lately, not only because of current events in the world, but also because of my personal life.

At 24, my oldest daughter, Abby, has Sanfilippo syndrome, a terminal disease that slowly is taking her from me. I’m losing her, and it is happening in front of my eyes.

Sanfilippo syndrome often is referred to as “childhood Alzheimer’s,” a term that helps present Abby to those who don’t know her. She has lost much of her cognitive ability and interest in various activities. I previously described her as a shell of the person she used to be, and that accurately describes her now.

I show her affection and tell her I love her all the time. She receives much love and attention at home, but is unable to reciprocate it anymore. Occasionally, she gives hugs and kisses, but her vocabulary is now limited to about 10 words. I miss her voice, as well as talking to her and hearing her express herself.

She still smiles and laughs sometimes, and I wonder when that will end, too.

Remaining positive about the situation is an intentional act for me. It is easy to slip into sadness and darkness, but I know that does no good for anyone.

My mom passed away last March, and I continue to emotionally deal with her loss, too. She loved Abby with such intent, and she saw Abby every weekend. I often wonder what Abby thinks now that she no longer sees her grandmother. My mom’s death is an incredibly significant loss. She was one of the most important people in my life.

My younger daughter, Emily, recently obtained her first full-time job out of college and is moving out of our house in the next week or so. Emily and I also are very close and always have been. We are at a stage in our relationship in which we are genuine friends, and I get to see what an amazing human she has become! I am extremely happy for her and want only for her to be successful. But her moving out feels like another big loss in my life.

Facing so much loss pushes me to contemplate it all. Loss leads to the festering of various feelings for me. One day I feel discouraged and hopeless only to feel motivated and thankful the next.

I think my default mood and disposition are happy and positive, which usually happen naturally each day. But sometimes I must intentionally choose to be happy, which feels a bit forced.

My faith is instrumental in moving forward, and I am so thankful to have it. I also am married to an incredible man who has supported and loved me through all of this. Since my mom’s death, my brother and I have grown closer, which also is a blessing. I have extended family and a church family who would do most anything for me if I asked.

With all of this support and love, I know I will come out of this a stronger person. But I have to get through it first.

Having a terminally ill child has shaped how I handle loss and other struggles in life. Parenting a child you know you will lose one day is a job that does not waiver. It will not retreat or give reprieve just because other hardships exist in your life. It forces you to be strong — even when you may not want to be — because you don’t have a choice.

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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.

I am a music therapist in the special education population. I work with special needs children every day. I am also the organist for my church. I thoroughly enjoy having music be a part of my daily life and work! I have been married to my husband Jeff for 25 years, and we live with our daughters Abby and Emily in Houston, Texas.
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I am a music therapist in the special education population. I work with special needs children every day. I am also the organist for my church. I thoroughly enjoy having music be a part of my daily life and work! I have been married to my husband Jeff for 25 years, and we live with our daughters Abby and Emily in Houston, Texas.
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