First In Line

Where do I begin… First of all I can’t express my gratitude enough for the food, messages, and calls from friends, family, and people I had never met offering comfort in this difficult time. I’m sorry I haven’t responded to everyone, but talking is not my strength, so it will take me some time to respond.

Secondly, I feel it is only fair to share the events that led to Benjamin gaining his first in line position at the gates of Heaven. Yesterday, Benjamin started with diarrhea. After only one diaper, he turned a little pale and his heart rate increased. After a few hours of trying to manage at home, we decided around 4pm that I would take him in for some fluids and we would return home a few hours later. After attempting fluids by IV for a few hours, Benjamin showed no signs of change. I kept a close eye on him, and started noticing his heart rate decreasing. Normally this would be a sign of improvement, but I was cautious. After a few minutes at an “improved” heart rate, the monitor started to alarm. I looked over assuming it was a high heart rate alarm and noticed his heart rate was low. Looking at Benjamin, I yelled at him and he didn’t respond. I started yelling for additional support. They started chest compressions and I started bagging. Looking up I saw his heart had stopped, but we continued. I continued bagging until another came in to relieve me. After an hour long attempt to revive Benjamin, he was officially gone. I know Benjamin passed away right in front of me, but I wanted all attempts made to save him.

I have always had a peek into Benjamin’s future, whether I realized it at the time or not, since he was in the womb and this was no different. Benjamin has struggled for the past few weeks, and I noticed after making a slide show for his birthday, just how progressive his diagnosis was. He hadn’t moved or smiled like he previously did, but because we were just so happy to have him, I barely noticed. I was so aware without realizing that an hour before he died, we had a talk. Never expecting that today would be the day, I told Benjamin, “Whenever you are tired of fighting, you just let me know. That is between you and God and it should be on y’all’s terms. We will be OK.” Never did I expect yesterday to be the day. We had gone in too many times in the same situation and been just fine. Benjamin just needed to hear, “We will be OK.”

Knowing we would probably lose Benjamin at an early age, I had always prayed for him to go peacefully…and he did. His heart just gradually slowed down and stopped. No struggling and no discomfort, and I thank God hourly for listening to my prayers.

After they finished trying to revive him, a priest came in to give him his last rites and to pray with us. The staff cleaned up Benjamin beautifully. He looked like an angel with flawless skin. His absence of movement was not far from his own ability so holding did not feel different at all. I did have them remove all tubes, cords, and lines. I had never held Benjamin before without his life lines. KC and I sat there for hours holding Benjamin, kissing him, trying to remember every part of him, crying, and consoling each other.

Today I woke up in a bit of a nightmare. Trying to figure out what to do, how to grieve, how not to second guess my decisions, how to be an example for the girls, how to console others, how to continue. We will continue to take a moment at a time and we appreciate all prayers for strength.

I try to keep this time more of a celebration of his life than a grieving of his death, but it his hard. I have to remind the girls that Benjamin is the lucky one in this situation, and that it’s ok to miss him.

I’m so happy knowing he spent his third birthday surrounded by family and friends that loved him dearly. He was truly a special kiddo and loved by so many. I thank him all the time for saving me and for making me a better person.


At this time, the funeral is set for 2pm on Friday at Jesus the Good Shepherd with the visitation before from 12-2pm. We are asking in lieu of flowers, that a donation be made in Benjamin’s honor to the Smiles Park in West Monroe, LA.



14 thoughts on “First In Line

  1. May the angels of the Lord wrap themselves around your family and give you comfort. Know that one of those angels is Benjamin.

  2. Hillary… Our love and prayers are with you! Your beautiful words bring tears to my eyes. I’ve been following and you and KC have been such loving, caring and supportive parents. God obviously gave you great grace. I was hoping to come to the funeral, but we are doing PT admission interviews all day on Friday. Please know that we are praying for God’s comfort in this time as you celebrate Benjamin’s life and all those he touched! Love, Dr Fell

  3. Our thoughts and prayers are with you and your family. Benjamin touched all of our hearts forever.
    Hugs and prayers,
    John & Nora Urban

  4. Hillary, I am so thankful to have stumbled upon Miracles to Milestones by accident today through a Facebook post. You and your family are such an inspiration to our community, and we are fortunate to have you here. My husband is a patient of your husband’s, (we love him, by the way), but we did not know your story until reading your posts today. You are a wonderful mother and you are making a difference in so many lives, including mine. We are so sorry for the loss of Benjamin, and pray that God will bless your family with continued strength and that your memories of Benjamin will bring you peace,

  5. I am so sorry for your loss. You may not remember me but, I met you and the kids at a ULM game. I fell in love with Lennon and Isla and had more fun playing with them instead of watching the game. I actually gave Isla my necklace because she liked it. May God bless you and bring you peace.

  6. Hillary and KC, our thoughts and prayers are with you and your family. Y’all are so courageous and inspirational. God knew who to send his Angel to.

  7. I wish your family great peace and healing. I am so very sorry for your loss. My three year old son also has DNM2, though not as severe as your dear boy. Thank you for sharing your story here. You and your family are inspirational! All the best! Kari

  8. Hi Hillary, I want to first say how sorry I am for you and your family’s loss. My deepest condolences are with you guys during this most difficult time. My husband and I actually lived across the street from you guys (next to Megan and Jye) in Luling. We moved to another subdivision in Luling in March 2013. Benjamin’s story is amazing. What an amazing and strong little boy! You truly are an inspiration to other women and mothers out there. Sending my thoughts and prayers to you and your family. I wish we would have had the pleasure of meeting you and your amazing family!

  9. I have never met you but heard your story this week.
    After spending time on your blog, and shedding many tears, I am truly inspired by you! Your peace and strength are definitely a product of your faith. I will be praying for your family in the days to come as you grieve the loss of your precious baby Boy.

  10. Hillary and KC,
    Very sorry to hear this news. You and KC have done an incredible job while Benjamin’s was in your care. Your faith, strength, and courage are an inspiration to everyone’s paths you have crossed! Lives have been touched by Benjamin’s more than you will ever know. It’s a great feeling to know he is in good hands now with no more suffering and struggling. I pray that you and your family find peace and comfort in this time of sorrow!
    You are in my thoughts and prayers!

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