Dear Mama Who Just Enrolled in Hospice for Their Child

To the mom who just enrolled in hospice services for your child,

I know you feel like the world is crashing down on you.

I know the tears flow like a river because of how hard this choice was.

I know you fear the judgment and the backlash from your decision.

I know the stigma can be overwhelming.

I know how scared you are for your child.

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I’m here to tell you you know your child best mama, and your love can move mountains.

For us, hospice was the best choice we made for our son. It meant extra services for my family and child. They made sure I was getting my rest and allowed me options for respite. Children can sometimes graduate from hospice services. Things didn’t go that way for my son unfortunately. I lost my son eight months ago, but hospice made it the most calming and peaceful experience while he passed. I held him in my arms for the last time and kissed him for the last time surrounded by love. At the moment he took his last breath, he knew he was loved.

Hospice allowed us to be one with our child during the worst day of our lives. No mother ever wants to lose her child, but the extra support at this time of need was amazing. They ensured he was comfortable, and that we were able to get our last moments in with him.

Before my son’s passing, a hospice nurse and social worker would come to our home. They would look for any signs of distress and adjust medicine as needed. They took over the ordering of our medication — my son had 36 medications. It made it so much easier. I got to spend time with my son instead of waiting on the phone with pharmacies. My son was in the best hands with our hospice team. They advocated on the behalf of our child with our nursing agency and our other doctors.

I know this is hard, mama. When I made this decision, the tears flowed like a river for days and days. I retreated to my room where I didn’t leave for a day.

However, I picked myself up and dusted myself off because my son needed me. I knew tomorrow wasn’t promised for my son with such complex medical needs. I spent the rest of his days holding, loving and kissing him. I realized I will most likely out live my baby, a heartbreaking revelation. I memorized his scent, his cheeks, lips and beautiful eyes. Those memories are what gets me through today.

Our hospice social worker processed my complex thoughts about my son’s last moments. I had support from a social worker who understands death. She was the most amazing person and was so crucial to my time of need as a grieving mother.

I’m here to tell you to keep going, keeping pushing on for your child. You truly know your child best and you always will. Remember your love can move mountains and it’s easy for people to judge who haven’t walked in your shoes. Realize you have many supporters in this difficult battle you are facing. Utilize those around you; if they want to help, allow them to do so. You deserve support and love right now too.

You got this mama. You are strong and courageous for getting out of bed each morning and facing this heartbreaking battle.

Your child loves you and you truly are the best.

I’m proud of you.