What not to say to a Grieving Mother

A grieving mother- What do you say?, How should you act?, What do you do?...... What you shouldn't say is "I know how you feel", " It's God's plan", "You need to move on".... Are you kidding me!!! No!! You don't know how I feel! ....Is it God's plan? Or is it random?? How does a mother losing her infant child.. move on??

Before I give you my advice on how to support a grieving mom allow me to share how I became an unfortunate expert on the topic.

After my youngest of 3 sons at the time turned 10, my husband and I decided to have a fourth child. Our neighbor at the time were a year away from being empty nesters, seeing the sadness in his eyes, we started thinking ....... 3 months later I was pregnant. We were ecstatic and so were our boys!

November 2nd 2010 was our 20 week ultrasound.... The boys were taking bets on the gender. The technician was playing along with them, making it into a game. "It's a Boy"!! You hear screams between the boys ... "I told you so"! Laughing and chatting away of what they wanted to name our newest member, Is he going to be a baseball player, soccer player or is he going to wrestle?
What the technician said next is what changed our whole life, our happiness and excitement turned into sadness and fear. My little boy had only 2 chambers. He had HLHS- Hypolplastic Left Heart Syndrome. Yeah--- my reaction---- what in the world is that!! I never heard of HLHS!! HLHS is a rare congenital heart defect in which the left ventricle of the heart is severlely underdeveloped. Over the next 20 weeks and many doctor's visits, ultra sounds and praying that they made a mistake we learned how serious of a condition this was. We were faced with 3 options; 1- continue with my pregnancy and my baby will have to face a major open heart surgery shortly after birth, 2- After birth, bring him home, do nothing and watch him pass or 3- Abort..... It felt like my heart was ripped out of my chest!

March 3, 2011, my sweet baby boy was born. He was whisked away as soon as he was delivered. Why, Why was this happening!!!
Five days after my baby boy was in this world, he had his surgery. It was one of the most agonizing day of my life!!
Two months later, my sweet boy was put on a heart transplant list, along with his weak heart, his veins were narrow (TAPVR) Total Anomaly Pulmonary Venous Return.

After waiting two months, my baby boy got a heart! As happy as I was that my sweet boy was getting a new, functional heart....my heart was breaking. Another child had to die for my child to live. My emotions were all over the place! It was heart wrenching thinking about what this family was going through. Praying for my son, praying for this family, so grateful to them then and still.
More challenges after heart transplant, his new heart went into shock and stopped beating after a minute and a half in his body. He was wheeled out on ECMO, a heart and lung bypass machine, life support. I remember the surgeon telling us that if his new heart doesn't start beating on its own within a week..... There is nothing they can do. My heart dropped to my stomach and just looked at him and said "ok well we just have to put him back on the list, right??
Thankfully, the next day, his new heart started, albeit faintely, started to beat. A few days later he was off life support and on his way to recovery.

Over the next 4 months we had ups and downs. Each day brought hope and despair. He battled his way through another open heart surgery, survived a week of kidney failure, and countless issues no one could have foreseen. Throughout the whole time you wonder, is this the right thing to do? Should we be putting our child through all this? Is it fair to him? Every time we started doubting ourselves he would give us the biggest smile with a twinkle in his eye you swore was angelic.

It was now early November and our baby was 9 months old he was finally stable enough to come home. Over the next 3 weeks we had our family together, at home, and had the most special Thanksgiving ever.

One night he started wheezing and his color seemed a little off. The next morning we took him to the doctor where we learned his lungs were giving out from all the trauma they received from his months on a ventilator. He fought hard like we grew to expect and we enjoyed Christmas as a whole family- in the pediatric cardiac intensive care unit.
With the exception of three weeks when we joyfully brought our baby boy home, we spent his whole life in a pediatric cardiac intensive care unit.

A few nights later our phone rang in the middle of the night. Our worst fears were told to us at 1am on the morning of December 29th. He was in respiratory failure and they told us to hurry back to the hospital.

We got to his room within the hour and held our special boy. He wouldn't quit. He fought for the next 11 hours until our hearts couldn't take it anymore. It was clear his body couldn't live but his will to live wouldn't pass. We had to make the hardest decision of our lives. They gave him an extra dose of morphine and turned off his oxygen. Within a minute my baby lay dead in my arms.

Losing a child is something no mother, parent should EVER go through! A part of you really dies with your child. The pain of not being able to hold, see or talk to your child again, the longing of wanting to hold and comfort him, the sadness of remembering his smiling sweet face and knowing it's now a memory... emotions that, yes will lessen a little with time BUT NEVER goes away!

So what you SHOULD do for a grieving mother???? It's so simple you may laugh. Just be there for her, be patient, and listen. Call or text frequently and just let her know that you are thinking of her. It may take time but when she's ready she'll reach back out to you. Let her talk about the sweet memories or the scary times. Some of my closest friends today were barely acquaintances before this experience and I can't imagine life without them.

Lia E.


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