Grieving a child who is living

My child is alive yet I grieve my loss over her every day.  How awful others must think of me if they have actually lost their child to this world in both the physical and spiritual sense.  I am sure I come across ungrateful because I can actually hold my beautiful blue-eyed baby girl in my arms.  I am extremely fortunate that I am able to kiss her soft pink cheeks and cuddle her close to smell her hair.  To be honest I find myself embarrassed that I am even admitting I have these feelings, but they are the truth.

10 months ago we welcomed our fourth child into this world.  For the first 20 minutes of her life, she was seemingly perfect and healthy.  All too soon, our world came crashing down when she presented with difficulty breathing.  Four short weeks later she was diagnosed with epilepsy, and was having on average seven seizures a day despite being placed on medication.  Eight weeks after she entered the world we learned the cause of her seizures was due to a genetic mutation on her CDKL5 gene.  Now, 8 months later, I continue to mourn the loss of my perfectly alive baby girl.

What I wish others would understand is that the grief others may have over their child with disabilities is painful and it is real.  Our grief is not to be compared to that of grief over a child who is no longer present on this earth.  It should not be dismissed or diminished simply because our child can be held, cuddled, kissed, and loved on physically.  Grieving our child who is alive is sporadic, and while our children bring us joy and happiness, those feelings can be overshadowed by what is not present.  Experiencing grief does not mean we do not love our child with disabilities.  

On occasion my mind drifts to the future, and I often wonder what it will be like when she is my oldest daughter's age.  Will she be able to walk or communicate verbally?  Will she able to sit or crawl?  Will she look me in the face and smile?  Will she be excited over the anticipation of losing her first tooth?  These thoughts are what open the doorway to my grief.  The realities of what the future holds and what the past has failed to bring.  These feelings of grief sneak up on me like a thief in the night.

What I wish others would understand about the grief parents of a child with a disability might experience is that we wish we could shake off our feelings and move on with our lives.  We wish that after time passes it will get easier and we will learn to accept the hand of cards we were dealt.  Maybe that does happen in time...for me, it hasn't happened yet.  I wish people would understand there is no one correct way to handle this type of situation nor is there is one correct way to grieve.  

What I wish others would understand the most is that grieving over our child who has a disability is not going to go away.  As our child continues to grow up, he or she will not be accomplishing the same things as his/her same age peers.  Each birthday that passes will be a reflection of another year that was counted by the mastery of inch stones as well as physical and emotional setbacks.  Each day that goes by will be another day we are presented with a reminder of the things our child may not be able to do.  As time goes by, we are faced with the harsh reality that our child will not complete the dreams we spent 9 months creating while awaiting their arrival, and for that alone, we grieve.

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