Do you ever feel like you are walking through life with no emotion? Getting up each day, going through your routine, but with little emotion attached to any part of the day? For some reason, that is my current situation. There are many reasons for me to be emotional each day, but it just is not there.
My mother passed away about a month ago, and we were incredibly close. We talked every day. She was my go-to when I needed to vent or be emotional because I didn’t want to burden my husband or daughters. When a parent dies, many details need to be worked out regarding their estate, especially when it’s the last living parent. Additionally, my work keeps me busy. This helps to minimize the downtime I have to think about things, and I am thankful for that.
As most know by now, my oldest daughter, Abby, has Sanfilippo syndrome, a terminal disease that is slowly taking her away from me. She remains in a pretty steady state for now, meaning her decline has slowed down. However, it still is much like caring for a 24-year-old toddler, minus the hyperactivity.
I love Abby with all my heart, but the entire family being together almost all the time now due to the current state of our world is a lot. I think many families with special needs children are feeling this. Also, my mom provided my husband and me some respite on weekends when she kept Abby for us, and that can’t happen anymore.
Another part of my life that causes me anxiety is the possibility that cancer will return. I have had two clear scans and another coming up soon, so I worry about the results. I am mostly positive about this because I am thankful for the clear scans and pray for it to continue. But a small part of me worries about it returning.
With all these things to be emotional about, why am I so numb? That is how I feel most of the time right now. Is it a defense mechanism? Maybe it is my body’s fight or flight response, and I’m just enduring everything at the moment? I am sure things will resolve eventually, but I worry about the abnormality of it all.
Lately, my thoughts have focused on what comes after this life and what follows the present. All of these things that I have described point my focus toward heaven. I think about it every day now and imagine what it is like.
I usually end on a positive note and try to leave a takeaway, but I don’t have one for this column. What drove me to write this was the desire to be transparent and provide a perspective to which others can relate. I question my lack of emotions, but I accept it. I am aware of it, and that in itself is important.
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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