By Myrna Medina 

(Versión en español de este artículo)

It is said that mourning is how every human being manages emotional losses. It is an emotional reaction that manifests itself in the form of suffering and affliction when an affective bond is broken, and that, nonetheless, is normal and necessary. We avoid discussing grief and don't always want to understand or process it. Unfortunately, in different cultures, pain and natural reactions are hardly discussed, and we minimize the experience of all their emotions out of shame or fear.

My name is Myrna Medina, Family Engagement Specialist for California Deafblind Services and Parent Advisor for Dicapta, but first and foremost a wife and mother of two children. One of them, Norman, would have been now 27 years old. Norman was born with multiple disabilities, including deafblindness, and despite all his challenges, his happiness overwhelmed us all. Despite the difficult and uncertain times we have been through, facing these situations has enriched our family. We have built memories and learned to value each other.

Grief is the greatest teacher, and it is, at the same time, something that we do not want to experience because it generates pain and suffering. We associate it with loss and often with death. In reality, it is the loss of everything we love and leaves us. It is the dream that did not come true or the hope that was lost.

For me, mourning is a situation of vulnerability, sensitivity, and pain for something no longer there. Sometimes I wonder why we cry so much in the face of life's adversities. I've found that we do it because we cry to ourselves. Because when we are in the sweet expectation, and all the dreams of the expected baby do not come, we feel terribly heartbroken. And our trip to the beach becomes a trip to the mountains, during which we must modify, understand, and love the new reality. And then we discovered, as I did, that the mountain is no less beautiful than the beach.

After my son was born, my life was like a roller coaster of emotions. Then I understood that it was a process called mourning, that it is natural, and that I had to go through its stages to reach the goal, its final stage, which is called "Acceptance."

I also understood that my process was not unique. The mourning process can be triggered in different ways. Whether it be by family dynamics, the difficulties of adult life, anxieties, stress, special needs, medical or educational situations, or even death.

I also understood that grief could manifest itself in different ways, and it is necessary to understand the natural reactions to process and alleviate the pain properly. Emotionally, we may feel sadness, helplessness, despair, fear, anger, or guilt. Physically, we feel empty, fatigued, and we even have changes in sleep or appetite. Behaviorally, It is manifested by distraction and difficulty concentrating, or by talking a lot about the subject or not talking at all. Cognitively, we want to look for answers or not believe in what happened. Spiritually, it can alter our personal beliefs.

I learned that the grieving process is recurring, not linear, triggered by unfulfilled stages. It can be unexpected, difficult to perceive, and above all, it varies in intensity according to each person's circumstances.

The impact of having and raising a child with a disability is immense and transcends cultures. However, the individual and family impact is related to both coping capacities and external supports such as immediate and extended family support, support from friends, spiritual support (church, meditation, time alone), professional support (from teachers, doctors, and service providers) and of course, psychological support. In the latter, one must recognize their feelings, anxieties, fears, and desires, allow themselves to grieve, attend support groups, and take life one day at a time.

There is no doubt that giving or receiving support helps to alleviate and better cope with grief.

I remember that one day people referred to me as a special mom 360, and at that time, I didn't understand what they meant by that expression. When I understood its meaning, I realized that my life had indeed taken a 360-degree turn since the birth of my son. In my journey with all its challenges and adjustments, with the persistent presence of the stages of grief, and finally, the sadness of not having him with me anymore. Even though I had learned to handle the grief of his diagnosis and the challenges that came with it, I re-lived that intense pain that unbalanced me and my entire family when he passed away. I again cried and felt anger, guilt, and all the emotions of the mourning cycle. This time, I cried even more for not having him physically, for not being able to touch him, for the lost dreams, for the longings, for his memories, for what I said, for what I didn't, for what I did or didn't do. When we are going through any grieving process, be it the loss of a dream, a love, or a loved one that left us, we forget that grieving has stages that we must navigate. If we keep them in mind, the path becomes easier, and we can reach the last stage, which is acceptance.

The loss of my son has been the greatest pain and the most difficult stage I have experienced. Remembering and talking about his happy life, his challenges, and the family's dreams causes me a lot of pain, but remembering that death is a reality for every human being gives me hope and strength and fills me with love for life. I feel grateful to have had him in my life, for the happiness that we shared together as a family, and for the smile that makes me remember him.

We must learn not to let ourselves be destroyed by grief and not let it finish us off, and at the same time to keep it in mind and know how to navigate it. I tell myself: that it's easy to say! However, I myself oppressed my happiness for a long time and felt dull and without motivation. But my perception and understanding of the grief process have changed thanks to the external support that I talked about, and I continue moving forward to reaching acceptance. I cannot leave out faith which has played a big role in my journey (respecting everyone's beliefs). I learned to honor life, not death, and to remember and treasure the moments lived and not our farewell.

You must recognize and live each stage of grief:

• Denial - Why me?
• Anger - I don't deserve it! Life is unfair!
• Bargaining - Pleading for more time and promising to do something in return!
• Sadness – "Missing their presence," it is natural to have pain, but not suffering. The difference between pain and suffering is time.
• Acceptance – “There are things that I cannot change." No matter how much I cry, I will not bring him/her back to life.

Grief is painful, but I invite you to remember that losses, especially death, are a reality; they are part of a process called life, and no one is exempt from living them.

To take from parent-to-parent:
Now that you understand the natural reactions to grief, you can normalize behaviors and emotions. Remember that there is nothing wrong with you and that you are going through a grieving process. Pay attention to your body and learn to recognize pain, and allow yourself to feel what is normal and necessary to heal. You can do things to help yourself process it: give yourself time, cry, share memories, journal, write a letter to your loved one, take care of yourself, join a grief group, and practice self-compassion.