Thoughts of a Broken Mommy

I want to take you on a trip today, one that I find not many will allow me to talk about. One that I am literally aching to tell the world is okay to talk about, ask me about, and is making the world of grieving parents feel as if they are insane. So if you are one of these parents, let me be clear, you are not alone, and you are not insane. I may not know you, but we are together in this journey called life. Keep sharing your story, your child’s name, their story, the world need you and them!

Let me take you on a trip, back to June of 2018, that’s when the picture above was taken. Just a little over a month before we were sent to the ER (July). And a month earlier we were finalizing her adoption (May). Take in this picture for a minute… It’s one of my favorites, just because she had the funniest expressions and a personality that kept us laughing! You may see something that raises red flags, but with my experience with keeping kids, educating myself about child development, she is pretty much on track. With her diagnosis, she should have not been holding up her head, sitting up, have use of her legs and arms, her head should have been swollen so swollen it should have exceeded far beyond what it was measuring, not to mention she had only developed her brain stem, practically no brain- there was nothing sending signals or telling her body what to do. Nothing.

So now travel with me to the hospital, a month later, getting the news of this is the worst case scenario. And knowing in your Mommy gut, that since you were sent to the ER and even a week before, you knew something was really not okay. Coming to the realization, this wasn’t a “well if we caught it earlier” situation. It was a “there’s nothing we can do,” and “you have to make some major decisions” diagnosis. So I went for making her comfortable and having every last moment with her. The palliative care team were supportive and encouraging. The child life team came and made impressions of her feet, tender and kind.

The hard and beautiful part of my life story is that I have witnessed the blessing of hospice. I had the knowledge that I could ask for this service and have them meet us as we came home. And let me tell you, if this service is available to you, especially with a child, it will be the very best thing you do for your child, yourself, and your family and friends that gather around you! I simply think back on this time and I can’t really remember too much about the “world” around me. I do remember: the nurse and the social worker would come to the bedroom where Lucy and I would be, they were gentle and kind, informative and honest, they wanted to know more about Lucy and the life she had brought to our family, they helped us make handprint art with watercolors. And the Monday morning when her nurse came, we all had that unspoken look and knowledge that her time was coming very soon, but Jesus had his timing, and she didn’t run ahead to be scooped up to later that night, I was incredibly grateful for them. I still am in awe of how they truly guided me through the horrific steps of infant loss, decisions that had to be made, plans that had to be made. I know this could have been so much worse. Don’t get me wrong, there is no other way to say it, making these plans for your child is horrific, but when you have people around you who are asking the questions in a loving and considerate way, it makes all the difference.

I’ve shared here that when Lucy took her last breath here on this side of Heaven, my mom was swinging her on the front porch of our house. This was their routine. My mom’s grandma name is “Swing” and this is why, she always swings her grandchildren, and she did this for me and my brother, and has done this for many family and friends. I couldn’t imagine a better way to run ahead to Jesus. When they would go out to swing in the evenings, the wildlife would come out, almost like they knew it was time. Deer, birds, squirrels, foxes, and Lucy was always in awe and watched their every move. So it just seemed perfect. I scooped her out of my mom’s lap and just held her as I called her nurse and social worker with hospice. Her eyes were set on the sky, no doubt Jesus had her!

She was free from pain. She no longer was scared. I was no longer scared for her.

I was in massive amounts of pain. I held her while answering the questions, that just two weeks before were so far from my thoughts. We had just received her birth certificate and now I was handing it to the funeral home.

Do you want a funeral service? I can barely move. And most of all, how in the heck could I possibly face people who are going to come to a service that didn’t even get to meet my little girl?

Announcement in the paper? I had just sent out her birth announcements!

Casket or Cremation? I can’t see my baby in a casket. I can’t bury her. She would let me have it if I put a outfit on her that was too tight, she would not want to be claustrophobic…. Do you want to see other urns? I’m holding my child, and you are asking me if I want a different urn? Just respectfully choose the urn and I will take care of the rest.

Then came the moment that was my final snapshot and moment with her. I carried her out of our house, in her farm muslin sleep sack, and laid her in a Moses basket draped with a quilt in the back of the funeral car. The light inside the car shined down on her as she still had her eyes fixed on the sky. And as they drove away, I realized this was the first time we had been apart since the NICU… 175 days.

Now let me make some things clear before you judge me or before you think I am judging you!

1. I have been to and been apart of visitation lines, and I have come to the conclusion that visitations are truly for the “visitors” and not for the family. It’s fine and dandy that you want to comfort the family, but to do a meet and greet at their brain’s foggiest time? No offense. They are just not for me.

2. And funerals, well, why do they have to be so awkward? Give me some hymns and a truthful message about the urgency of spreading the Word and seeking Jesus, and skip the exaggerated and embellished compliments and stories. (still not judging I promise! Just my thoughts, and yes I am honest. More now than I ever have been) I look forward to sharing next week about the Life celebration I had for Lucy.

This is a part of mine and Lucy’s story. And it feels really good to share it with whoever will read it. And I want to suggest a little exercise that I believe can help navigate open conversations. This topic should NOT be awkward. So instead of trying to “understand” what it is like to “lose a child,” try “imagining” what it is like to “lose a child.” It’s scary, it’s way out of our human comfort zone, but there is two big things that this will do:

1. It will help you have better conversations with friends who are grieving

2. Creates a more compassionate and considerate heart and perspective- because you realize, loss happens to the good and the bad, the poor and the wealthy, the sick and the healthy, the single parent home and the two parent home, the biological child and the adopted child. And loss has no sense of time!

Life Book of the Week: “Angels Unaware” by Dale Evans Rogers. First printed in 1953, so the disability language is not politically correct for 2022, but the life lessons are too great to miss! And for anyone who like Roy and Dale Rogers, well, “Happy Trails to you, until we meet again!”