I see you grieving parent

As a grieving parent it is hard to come up with the “right” things to say to other parents who have lost a child. This post is for the parents in this community who have lost a child to Nemaline Myopathy.

First and for most I want to say, I see you grieving parent and am here with you. Being a grieving parent is one of the most isolating experiences I have ever been through; I can be in a room with 100 people and feel so alone. It is often because I feel that others do not understand the pain that I feel. In an effort to bring us together I am sharing what I have learned and experience every day in hope for you to know you are not alone.

The moment I found out that my son, Trevor, was struggling to stay in this world my life changed. I learned what it is like to face my worst fear, losing a child. Those 7 days were filled with crazy highs, holding him for the first time, to unbelievable lows, learning he would pass away. By far saying goodbye to my son was the hardest experience I have had to go through and it is one that steals the breath from my lungs every time that I relive that moment. Learning to live without him though is a whole other entity; it is this beast that I have to fight every day against in order to not succumb to the complete and udder agony, pain and longing. Each morning I wake up his life flashes before mine like a movie real and I struggle with getting out of bed for those moments because the grief crashes over me like a wave. The only thing that forces me to not be overridden with grief is to remember the beautiful moments that sustain me such as, holding him, singing to him, bathing him and just being with him. The love forces down the grief and I am able to get up and face the rest of my day.

It has been 368 days since last holding him in my arms and despite what society believes the grief is still just as strong as it was day 1 after losing him. The only difference is my ability to handle that grief. Each of us grieves differently and I am sure many of us have war stories of what the trenches of our grief looks like. The biggest advice I can offer is to let those bad days come and honor your emotions. Your emotions are a result of your love and feeling them can help you stay connected but also learn how to deal with the next wave that comes and knocks you off your feet. For me honoring him and sharing him with the world has helped me stay connected to him.

The Nemaline Myopathy community has also helped me with understanding a disorder that I did not know existed until 2 months after he passed away and that community has wrapped me in their arms, educated me and shown me hope that a cure will come. I will say that some days are harder to see all the updates and children thriving and making strides when my son lost his fight to NM. Know that on those days there are other parents who are feeling the same way. If you need to turn off those notices for a bit or scroll past them today, do that. The NM community is very understanding to your needs and you will not hurt their feelings if you take a break. Also you do not need to apologize for not attending a family function, crying at your desk or car, make it easier for other folks to be around you, or have to justify why talking about your child makes you happy and honor them. Do what YOU need to do in order to get through the day.


One grieving mother