Why?  My Personal Journey with Faith
and Raising a Child with Special Needs

by Michelle Doty

I grew up going to church every Sunday and even had perfect attendance in Sunday school during my elementary years.  I continued practicing my faith in college and into my marriage.  I never questioned God or His power and was faithful to His word.  As a child and young adult I had a fairly typical and uneventful life.  I had never experienced anything close to suffering, loss or tragedy of any kind.  The biggest loss I experienced was losing my dog of 16 years.  

After having my daughter Campbell, not only was my world turned upside down, but my faith was put to the test.  In the beginning, having a child with special needs brought me closer to God.  I prayed, meditated and begged God that my daughter would be healed.  I felt if I prayed hard enough and long enough that God would heal her and she would be better.   

We have never received an official diagnosis or cause for Campbell's complex medical needs.  In some ways, that gave me more hope.  Since there wasn't a roadmap or prognosis, it made the scripture, "with God all things are possible," (Matthew 19:25) more attainable.  I felt that if I continued to pray and did as God instructed me to live, she would be cured.

Losing Faith

As time went on, I lost track of the foundation of my faith, to trust God with all my heart and to not be afraid, for He is with me.  I felt that God wasn't listening and I was very alone.  I put the weight of the world on my shoulders and tried to be God in some ways.  I thought it was up to me to control the situation.  I thought God wasn't listening, so now I had to be the one to find the answers.  I had to be the one to heal Campbell and take away her pain.  

It was much easier for me to blame God and be angry with Him for letting this happen to Campbell.  In the Bible, it says in Jeremiah 1:5, "Before I formed you in the womb I knew you."   I felt conflicted about this scripture at times.   I love my daughter unconditionally for who she is, as I know God does.  My challenge with the scripture was the question, "How could God create someone who has to live a life of pain and suffering?"  This really hit home every time she had a surgery or was sick and in the hospital.  I continued to turn to God and prayed for a miracle, but my faith was slowly fading.

Bad Things Happen to Good People

As time went on and I was able to see that Campbell's medical needs and delays were not going to just go away, I really started asking the, "Why me?  Why my daughter?" type of questions.  Misfortunes happened to other people but not me.  I quickly learned that that was not the case and that bad things do happen to good people.  

I found a copy of a book with that same title at the library and began reading and studying it.  When Bad Things Happen to Good People is a book written by a Jewish Rabbi named Harold Kushner.  It is a bestseller and is used by religious people of all faiths across the world.  Rabbi Kushner lost his oldest child, his son Aaron, to progeria, a rapid aging disease that is usually fatal in the teenage years.  Here was a book that was written by a parent who had endured the worst kind of suffering, the loss of a child.  

The book focused on the subject that I had struggled with for so long.  Why does suffering happen?  Is God all powerful?  Does He punish people for their sins by causing suffering in their lives? 

The first thing that I began to realize was that there isn't an answer to the "Why me?" question.  God does not cause tragedies, illnesses, or suffering.  He doesn't look down upon us and say, "Mr. Smith has sinned a lot lately and I am going to take his life in a car accident," or, "Mrs. Brown is a strong woman of faith, so I am going to give her a child who will have cancer and die at age three because I know she can handle it." 

I can't tell you how many times that I have heard, "God knew you were strong and that is why He gave you a child with special needs," or, "God doesn't give you anything you can't handle."  These words, which are meant to comfort, become a source of guilt and blame.  Sometimes the tragedy that occurs within our lives can become too much to bear.  I learned in my journey that it is OK to admit I was overwhelmed and needed help.  These are the times to look to God for comfort and guidance.  God is hurting as much as we are.  I soon learned that instead of asking "Why me," I should focus on, "What am I going to do," or, "How will I react to this event in my life?"   

God does not cause the tragedy or the source of suffering.  He doesn't pick an innocent child and inflict him or her with a fatal disease as a punishment for sins of the parents.  Why would God punish anyone, let alone an innocent child?  The thought that God rewards us for good behavior and punishes us for bad behavior only adds to this misconception.  Blame and guilt are common among parents of children with special needs, and I can attest to feeling both of these emotions frequently and deeply early in my journey.  When bad things happen, our defense mechanisms go up and we tend to look for a cause to blame someone or something.  I personally wanted to "fix" everything.  Often when there isn't a clear reason both blame and guilt is turned inward.  I know from personal experience, this can be very isolating.  These feelings can lead to anger and other destructive emotions.

At Peace with God

In my faith, I am taught that God gave man free will.  Because of this, there is good and evil in the world.  There are laws of human nature, and we have moral freedom as well.  The cold, hard truth is that sometimes there are not reasons or answers to why tragedy occurs.  God does not cause tragedy but He hurts along with us.  In turn, He does not cure or change the tragedy itself.  This is not to say that He cannot (or does not) perform miracles or have a hand in curing illnesses.   However, if He cured every illness and prevented every tragedy, then we would not have free will.  

Once I realized all of these things, I felt at peace and closer to God.  I did have difficulty accepting that there aren't always answers, reasons or a purpose.  In some ways, it would be easier if there was a purpose for the suffering.  However, I have learned and accepted that I may not find the medical cause of what caused Campbell's complex needs.  Rather than searching for a reason, it is better to acknowledge that things that happen can be tragic, unfair and too much to handle.

I learned to look to God for strength, guidance, love and peace, rather than an answer or a cure for Campbell's medical needs.  There may not be a reason for what happens in life, but I can give my life and Campbell's life a purpose.  I can choose to accept not only her, but also her condition without expecting an answer or a miracle.  

I know that God is with her.  I can see Him in her eyes, her smile and her laugh.  We are only on this earth for a limited time, and I believe that we will come together in Heaven to live for eternity.  We won't have suffering, worry or anxiety.  When you put it in perspective, why waste time with worrying about something you can't change.  Accept things for what they are and have faith that God is with you.  Be not afraid.

For more information on the topic, see the following article by Rabbi Kushner:

Michelle Parke Doty is the mother of Matthew (10) and Campbell (4).  Her daughter, Campbell, was born with a bilateral cleft lip and palate.  She has epilepsy, cortical vision impairment and significant developmental delay.  She has been classified as having hypotonic cerebral palsy of unknown origin while doctors continue to search for definitive diagnosis.  Michelle, along with her husband and children, are Roman Catholic and reside in Richmond, Kentucky.

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 Author:  Michelle Doty
 Date Uploaded:  12/24/2010