Hand to Hold's Official Blog: Written by Parents for Parents

The Grief of a Special Needs Parent

© Can Stock Photo Inc. / ultrapro

© Can Stock Photo Inc. / ultrapro

 

 

Most people associate grief, especially complicated grief, as something only experienced after the death of a loved one. However, many people fail to understand that complicated grief isn’t just about death. 

 

 

In an article entitled Complicated Grief, the Mayo Clinic states:

“While normal grief symptoms gradually start to fade over a few months, those of complicated grief linger or get worse. Complicated grief is like being in a chronic, heightened state of mourning. In complicated grief painful emotions are so long-lasting and severe that you have trouble accepting the loss and resuming your own life.”

As a special needs mom, I know grief very well. It has become an integral part of what makes me the person I am today. It will never go away. It will always be a part of my family. Because of this, it is so important for special needs parents to recognize this grief and find healthy, conducive ways to cope.

To understand how to cope with grief, I want to show you what the stages of grief look like through my eyes. The Grieving of a Special Needs Parent.

The 7 Stages of Grief

SHOCK & DENIAL

One thing I know well is the numbing disbelief of a new diagnosis or regression. Just when I think things are working well, suddenly, life changes course. I might even deny the reality of it at some level, in order to avoid the pain. Shock provides me emotional protection from being overwhelmed all at once.

SADNESS & GUILT

As the shock wears off, it is often replaced with unbelievable sadness and guilt. This sense of loss is so complicated because my child is right there in front of me – so full of life and excitement. But when I look at him, it’s a constant reminder of the life we will never have. A life I failed to provide for him. I often feel desperate, responsible, overwhelmed with guilt, and frustrated.

ANGER & BARGAINING

Frustration often gives way to anger, and I find myself lashing out at others. The guilt I have builds into anger towards myself for robbing my child of everything I ever wanted for him, of robbing my husband from a life that he’s worked so incredibly hard to achieve, and for robbing society of such a beautiful mind that I just can’t seem to figure out how to connect with. This often leads to bargaining out of desperation. One time, in the NICU, my husband made a deal with our son that if he made it through surgery, he’d buy him a motorcycle. Let’s just say that motorcycle was home way before our son was discharged.

REFLECTION, LONELINESS

Having a special needs child can feel incredibly isolating. And just when I think I’m doing ok and things are getting better, a sad reflection of the life we will never have shimmies it’s way into the mix. This stage of grief is completely normal and it needs to be recognized. It’s often during this stage when I realize the true magnitude of my grief. I acknowledge my grief will continue to cycle like this for the rest of my life and it depresses me even more. I feel so empty, so alone, and so desperate.

But then the next stages of grief take place….

© Can Stock Photo Inc. / Alvinge

© Can Stock Photo Inc. / Alvinge

THE UPWARD TURN

As I start to adjust to the new diagnosis and/or difficulties, my life starts to become a little calmer and a little more organized. My physical symptoms like exhaustion and fatigue begin to get better. My mind becomes clearer and it feels like a weight is being lifted off my shoulders as I find new ways to deal with the situation at hand.

RECONSTRUCTION & WORKING THROUGH

As my mind starts working clearly again, I find myself being able to come up with realistic solutions to problems. My ability to research and connect with the right doctors and programs becomes much easier. I’m able to see the light at the end of the tunnel and know that I can find a way, somehow or another, to get through this.

ACCEPTANCE & HOPE

As time continues, I find it much easier to accept and deal with the reality of my situation. Acceptance does not necessarily mean instant happiness. Although I know that I’ll never be able to be that carefree, untroubled mother I had always envisioned of myself; I know in my soul that I will find a way to get us through anything that comes our way.

helping hand

I look forward to the future. I know it will never be easy. But when I look into the eyes of my son I see strength and determination, and I know all of it is worth the pain. I know my grieving may never end – 

BUT NEITHER WILL MY LOVE.

 

(If you or someone you know seems to be dwelling in any one stage of grief or may be suffering from depression, reach out for help. You are NOT alone! Let them know they are NOT alone. Most of the time, people experiencing complicated grief aren’t expecting you to know all the answers. We just want to be reassured that we’re not in this by ourselves.)

Cristal Grogan About Cristal Grogan

Cristal Grogan (MD) is the mother of Seth, who was born at 29 weeks weighing 2lbs 4oz due to severe preeclampsia, HELLP, and IUGR. As a military wife, Cristal and her husband were living in southern Spain at the time. Seth’s NICU stay was complicated as he battled NEC, ROP, IVH, PDA, Sepsis and PVL, but Seth defied all odds. He is now a happy and healthy 3 year old avid reader living with Autism and SPD. After navigating through the NICU life in a foreign country, amidst a language barrier and lacking proper resources or support system, Cristal swore to become involved in the preemie community to make sure no other parent was left in the same desperate situation. Currently, she is the Administrative Assistant for Preemie Parent Alliance and social media volunteer for It’s a Preemie Thing. In her personal blog, she describes the daily life of a military family with a special needs child.

Comments

  1. <3 So true. Thank you.

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  1. […] above water. We all know the main avenues we are directed towards to help navigate us through the 7 Stages of Grief. Things such as psychotherapy, support groups, medications, and yoga; but I want to talk about the […]

  2. […] For more details on each stage, visit Preemie Babies 101 […]

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