Thursday, January 18, 2007

My Storm Rages On

Yesterday at Bible Study we were talking about the book of Job. It seems that it is so easy to love and praise God when things are good, but what happens when things don't go according to plan? This story is from Jenn Johnson, one of my college roommates. It's an honest and emotional account of dealing with their son and his special needs. I'm in awe at how they are dealing with all the difficulties his situation has brought into their family - I think you will be too. So here it is:

My storm rages on.

My eight year old son has uncontrolled seizures. He’s been medicated for six years and still has a few break through seizures every month.

My son has pervasive developmental disorder which is their way of saying he has autistic tendencies, but not quite enough to be diagnosed.

My son struggles to express his thoughts, which makes it hard to have a conversation with him.

My son processes the world differently than most people. I struggle to connect with him or communicate the complicated and subtle social world we live in.

My son feels the world around him is out of control and he fights for control. He has anxiety about new situations. He fights change.

My son is envious of his younger siblings and the privileges they receive because they are able to cope and handle situations that he isn’t able to handle.

My son lashes out and hurts others physically and verbally. He is irrational and unreasonable at times.

My heart breaks.

My heart battles feelings of guilt. Guilt for how I treated my son before I understood his disability. Guilt for wishing some days I didn’t have to deal with him. Guilt for feeling like I neglect my other children. Guilt for feeling selfish because my dream or longing for how my family would function and experience life is not being met. Guilt for thinking I have it hard when I know kids with much worse disabilities. Guilt because sometimes I think, “We could have bought a big screen HDTV with all that money we just spent on therapy.” Guilt for terrible thoughts I’ve had about how life would be easier without him, but then he’ll have a sweet, innocent moment or he’ll come and give me a hug without me asking for one which is so special because there has been a time when due to his sensory defensiveness he pushed our hugs away.

My heart battles feelings of envy. I envy typical families. I envy being able to go on vacations or attend functions with out the stress I feel about my son’s behavior. I envy other eight year old kids who can cope, be more mature, or have typical interests. I envy kids who participate in organized activities: sports, cub scouts, clubs, etc. I am envious of eight year old kids who have friends.

My heart battles feelings of grief. I grieve for my son and for how complicated and confusing life seems to him. I grieve for my dreams for my son. I grieve the typical family that I thought I would raise.

My heart battles feelings of loneliness. No one but my husband knows exactly how I feel.

My heart battles feelings of disappointment. As a parent there is that little part of you that enjoys hearing how your child is like you, I am disappointed because my son is not like me. I liked being involved in things, school was easy for me, I am friendly, etc. He is not like me.

My heart battles feelings of frustration. Even though I do everything I can to be a “good” caregiver and nurturing mom, it is still not working. He is still defiant, legalistic, rude, obsessive, etc. Sometimes I feel others are judging me for how I parent my children.

My heart battles feelings of exhaustion. My son requires a lot of energy.

My heart cries out for answers, for a cure, and for help.

My heavenly Father loves my son more than I can imagine or understand. He has a plan for my son’s life. He chose me to be his mother.

My heavenly Father supports me with loving family and friends who listen, cry, pray, and do everything they can to support us and help us. Even though I feel alone at times… I am not.

My heavenly Father wants me to be more like Him. The lightning in this storm reveals much about my pride, my desires, my sin, and my weaknesses and ultimately draws me closer to Him.

My heavenly Father longs for me to sit on his lap and bring my broken heart to Him.

My heavenly Father never promised me happiness. He promises joy even amidst my storms. I feel hope in knowing that He is in control and promises to work all things for good.

My heavenly Father’s plan may not be the same as mine. Do I trust Him with my storm? YES. I can’t imagine weathering a storm without Him.

Isaiah 25:4
"You have been a refuge for the poor,
a refuge for the needy in his distress,
a shelter from the storm
and a shade from the heat."


Wayne Pederson said...

This writing by Jenn is heartbreaking. Makes one thankful for the gift of health in our kids. We can't take any of that for granted. My prayer is going out to Jenn today.

Mike said...

Jenn & Joel,

Thanks for following Jesus in your lives. Thanks for being open, sharing with us and teaching us.

Sheri K said...

To Jen and Joel,We are saying our prayers for you and your family. Know that you are loved and are a great Mom. God is watching over you and your family everyday. Call me anytime if you just want to talk. Love your cousin. Sheri Kilbey 864-906-3326

Jenn said...

Thanks Sheri. That means a lot. Jenn

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