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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