More gifts


Grief is a strange beast. It truly does ebb and flow. Most of today, I stumbled through numb, empty, acutely feeling the void in my life. Low tide of grief. This evening, I was moving stuff around on top of his dresser (still next to my bed), and I picked up one of the onesies that he often wore. I had to lie down, gripping it to my cheek, sobbing hysterically. I could still smell the spit-up. There’s still a drop of his potassium chloride on the chest.

This afternoon, I packed half of my breastmilk into a dry ice-filled cooler. It’s going to Kansas, to a sweet trisomy baby named Lillian. Lillian and James were born 2 days apart, so they are “buddies” in my mind. It was hard to put that milk in the cooler and close the lid. I had to hold an ice cold bag of it for just a minute. All those hours of pumping, James at my side, watching me with his bright eyes or snoozing. Every 4 hours, round the clock. All that work to feed my baby. And now I have no baby to feed. It made my heart ache to realize that James would never need this milk again.

When I went to buy the dry ice, I wandered the aisles of Ingles, looking for coolers. Accidentally, I wound up on the diaper aisle. My heart contracted. Diapers and wipes – something I won’t need to buy again anytime soon. Maybe ever.

Driving to the post office, I realized that I didn’t need to rush. There was no carefully coordinated hand-off of childcare while Jim worked. It’s just the girls now, and they’ve been pretty self-sufficient recently. I could take my time going to the post office. I could take my time doing anything. I didn’t have to rush home to take care of my little man.

There are reminders everywhere, everyday. Reminders that he isn’t here anymore -something my heart still struggles to accept.

I wake up every morning, and my mind immediately goes to the what ifs? Those questions are heavy. Yet there are moments when I find peace from them. When I remember our burning love for James. That love was a torch that lit our way. We made the best decisions that we could for James. I have to tell myself this every single day, or I don’t think that I could get out of bed anymore.


2 thoughts on “More gifts

  1. Catherine, what a loving, wonderful mother you are to James. Please don’t question yourself and any decisions you made. You did your absolute best everyday of his life and even before he was born. You have been through a lot, so please don’t torture yourself with questions. Try to concentrate on the love.
    Sue Sprott


  2. Dear Catherine, my heart aches with yours. I have cried with each one of your posts. It’s like they are my own words. I have struggled with the same things, the same questions. I believe it is part of grieving and wishing things were different. I have mourned your loss along with mine. I dedicated my life to provide the best care for my sweet Bobby and I fought like a fierce lion for him. Everything revolved around him. In spite of the challenges and how much our life had changed, we loved taking care of him. Even though the Trisomy journey is incredibly tough, it is also incredibly rewarding. Our kids are so amazing. They have so much purpose in this life, even when they are no longer here. Bobby changed us, he transformed us. We see life differently now and just like you’ve said, we desire to reach out and serve others more now. Our sweet boy was a ray of sunshine, always content, always grateful for the simplest things. I learned so much from this. I believe it would be so hard to find joy again without having a grateful heart. So instead of drowning in the fact he’s no longer here, I have to look at all the good in his life, all the time I got spend with him, all the good the continued as his legacy. This doesn’t mean I don’t grieve, cry, miss him like crazy. I just have to force myself not to stay there. I often have to reset my thinking and think of the positive. I also find it helpful to do things for others, especially special needs families in honor of Bobby. Writing and sharing your thoughts is probably good therapy too. I find it helpful to stay busy. My 22 month old and 4 week old baby have definitely helped with that. They get me out bed when I rather stay there and cry all day. Grief is definitely a strange beast. It changes through time, but it never goes away. A big part of us is no longer with us. The James and Bobby holes will always be there, but by the grace of God and with the support of others we will make it through. Find peace and comfort in knowing James will never experience pain and suffering again. And that you love him beyond measure and did the very best you could to care for him. I have to tell myself these things too. My husband and I would love to meet you. If it would be helpful to you to get out of town and get together, we would love to have you over. We are in Greenville, SC only an hour and a half away. Please consider it. We would like be to help and be a support to you. With much love, Erika.


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