My Faith Has Been Tested by My Daughter’s Diagnosis

My Faith Has Been Tested by My Daughter’s Diagnosis

Do you ever feel like your faith is being tested? Like God is trying to see how much you can take?

I don’t think God is malicious and means to push us to our breaking point, but it feels that way sometimes. Getting diagnosed with cancer and having your child diagnosed with a terminal disease — all within two years — can do that to you.

I have mixed feelings. I get upset and ask why, which is unproductive, so I try not to do it very often. I become bitter and angry that my family can’t be “normal” and do normal things, like take photos together without it being an ordeal, or go on vacation or to the store. There are so many things we cannot do because of my daughter’s diagnosis.

I see Abby as a child of God and a temporary gift to me and my husband, Jeff. She is God’s child, so she is “on loan” to us. I know that when she leaves her earthly home, she will arrive at a grand, beautiful, peaceful place, filled with love and joy. She will return to Jesus, who will take care of her until we are called to heaven, too.

I take solace in believing that we will be together in heaven, but my beliefs are based on faith. We cannot see heaven. None of us knows that heaven exists or that we will reunite one day. We have to believe the Bible and what we are taught.

I choose to believe.

I cannot fathom handling everything that is thrown at me without my belief in God. I believe that Abby will end up in heaven, which is an incredible comfort. I envision all of us living in peace, and it is beautiful. It forces me to have a long-term mindset. It’s hard, but it’s the reality of our situation.

Jesus’ Sermon on the Mount, also known as the Beatitudes, is more meaningful to me now. In particular, I am drawn to Matthew 5:4, which reads, “Blessed are those who mourn, for they will be comforted.” All of Jesus’ blessings are powerful, but this one comforts me as I think long term. It also reminds me that Abby and people who are forgotten for any reason — the disabled, the terminally ill, the mentally ill, the elderly, the homeless — will be rewarded in heaven.

I have the privilege of working with disabled children as a music therapist. I think of them when I hear or read Jesus’ words. I imagine reuniting with them in heaven, reminiscing about all the times we sang together on earth. People who cannot speak will have full cognitive abilities in heaven. They will be able to tell me what they thought as I worked with them! How awesome is that?

I believe Abby will be able to talk to me in heaven. She will be able to tell me everything she wanted to say after she lost her speech. The conversations I will finally get to enjoy with my girl will be glorious!

My faith is one of the few things I can control. It gives me hope and helps me persevere and be strong. Without faith, the reunions and joy that I imagine would not be possible. I have to believe. I have to be faithful.

My faith has been tested throughout this journey, but it is not lost. Thanks be to God.

***

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.

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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