Grieving My Living Child

I grieve for my child with disabilities and for what I know she can't ever do. Experiencing grief does not mean we do not love our child with disabilities.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’m sure I come across ungrateful because I can actually hold my beautiful blue-eyed baby girl in my arms.

I know I’m extremely fortunate that I’m able to kiss her soft pink cheeks and cuddle her close to smell her hair. To be honest, I’m embarrassed that I’m even admitting I have these feelings, but they are the truth.

Ten 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, eight months later, I continue to mourn the loss of my perfectly alive baby girl.

What I wish others would understand is that the grief we have over our 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. But it shouldn’t 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, she will not be accomplishing the same things as her 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 will be another day we’re presented with a reminder of the things our daughter 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 nine months creating while awaiting her arrival. And for that alone, we grieve.

I grieve for my child with disabilities and for what I know she can't ever do. Experiencing grief does not mean we do not love our child with disabilities.

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6 thoughts on “Grieving My Living Child

  1. Randi, I understand every word you wrote and found them all incredibly true. I had only just started to let go of some of my grief in the last months of Sorrels life. And it now has begun again. And I probably couldn’t have understood it before at your stage. But the grief can be worse believe me. So much worse. I grieved my living child too, but the best days I had with her were the ones were I put that aside. I completely understand how you feel, just from my experience those days I just loved her and didn’t grieve, didn’t worry, those are the best memories I have and they are all I have. I don’t think badly of you at all, I just hope with all my heart that the days you grieve will be few.

    1. Thank you so much Polly…I appreciate your insight and my heart breaks and aches for the pain you are enduring now…I try to really enjoy Sonzee and all that she is more than grieving who she is not…some days that is definitely easier than others- but I try not to stay low too long….hugs and kisses always to you!!!

  2. I can completely relate to this post! I have a daughter with CP. The initial shock of the diagnosis was so devasting. It has gotten easier but it’s still hard. Yes she is still alive and I am very grateful for that but yes you have to grieve for the life you thought she would have. It does come in waves too at unexpected times. Hugs from one special needs mom to another.

    1. Thanks for reading this post Becky! Thanks for validating the various forms of grief! I am sorry you are on a similar journey, but glad to not be alone <3!

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