Cerebral Palsy and the Revolving Door of Grief

I know how to “properly” grieve; I took a class on it once in missionary training when we were talking about loss.  I know the steps and have been through them successfully.  I have grieved the death of a loved one, the loss of a dream, and many other things.  I have stepped through the shroud of sadness and into acceptance many times.  I tried to do this when we discovered that my son has Cerebral Palsy, and now that he is five years old, I have discovered that Cerebral Palsy’s grieving process for a parent, is a revolving door.  I have gone through the steps only to find that it returns time and again, sometimes several times in a day.

Each year older my son Malachi becomes, the more challenges he faces, each month (and week even) presents itself with another doctors appointment, each day is filled with adaptions, each hour presents something new and every minute we have to be on hand to meet his needs. Some days (okay most days) I want to sit on the couch and cry because if I let it, I could let grief run my life to the ground.  I can quickly make a list of one thousand things that with my whole hearts desire, I wish my dear Malachi could physically do and experience to the full capacity of an able-body.  Those are one-thousand things that I struggle with grieving at any given time of any given day. I am not complaining, I am not saying “Oh woe is me, look at how much I am suffering”….

THIS IS SIMPLY THE TRUTH.

We don’t share our deep hurts and concerns with everyone because it’s overwhelming for even us.  I honestly cannot voice it at times, I simply don’t have the words. But also, PEOPLE DON’T ASK US.  Thinking about Malachi’s past, present, and future daily is exhausting and I know that I am not the only one.  I know that there are thousands of exhausted parents with precious special kids who’s minds are churning and hearts are sad. You, dear ones, are not alone.

For us, it is our faith in Jesus that lifts us out of our grief. It is GRACE.  It is only by God’s grace alone that He gives us the good gifts of love, peace, and joy.  Jesus Christ is our net.  Jesus Christ sees our grief and He scoops us up.  He knows.  Jesus has the ability to change our mourning into something beautiful.  Sometimes, He gives us joyful surprises and our grief dissipates, but mostly, He sits with us in our grief and gives us the grace to face the years, months, weeks, days, hours and minutes.  We are so thankful that we serve a God that understands.

I AM NOT STRONG. If you see me on a daily basis you would know, I, in and of myself, am not the super woman that every parent with a special-needs child has the un-spoken pressure to be.  I am human, and the only strength that anyone ever sees in us is Christs strength.  I give myself permission to be “weak”, permission to grieve when I need to, because in a beautiful way that I cannot fully understand…. GOD HAS ME.

 

One thought on “Cerebral Palsy and the Revolving Door of Grief

  1. April

    Yes! Parenting a child with special needs is an ongoing grieving process. There is not enough of you any day, to meet all the needs. There are challenges you didn’t imagine you would face when you found out you were expecting. You find yourself at the end of yourself too often. This is where Christ meets us and we collapse into His strong arms crying out for all the pain and struggles to end. It’s those moments when I remind myself that Jesus is who He claims to be. Therefore He is working all things together for my good, and my daughter’s good. It doesn’t make the struggles go away, but I can sincerely proclaim God is good, very good. And His mercies are new every morning. Much love and prayers for all of your beautiful family each day.

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