For Our Salvation

Dear Benjamin,

I was so blessed to be part of another retreat this weekend, but this time as a team member. I was there to serve others and in turn was served as well. It’s always nice to have quiet time with God, and a chance to recharge in my faith without the craziness of daily life. On that Holy ground is where I have a chance to listen, and so far, I always receive just what I need. 

There are things in our lives that can help us carry on, there are things in our lives that can motivate us, but there are also things that stick with us enough to change our lives on a daily basis. I once again received a life changing moment this weekend. 

Though we find ourselves “coping” appropriately I guess, I still have the occasional why questions? I believe it’s only human nature, and I find myself asking this question less and less, but it’s nice to finally hear a firm answer to a question that I already really knew the answer. 

Why do things happen in life that cripple us, why do things happen in our life that bring us to our knees, why must we experience such sadness and loss… Why do we not always receive the miracle we think we need? Because, as Father Marks says…

God gives us the “Healing that is most beneficial for our salvation.”  

This is such an amazing statement that I feel is so comforting in a time when questions can occasionally arise. It’s a reminder of what is truly important, not our time here, but instead our eternal life when I will be reunited with you again. Having my special angel in Heaven, makes me want to work even harder to be by your side again. 

Your sisters continue to miss you, each one dealing with things a little differently. Isla loves to talk about the good times with you, while Lennon is still a little sad to share her memories. Lennon has shown us a few times recently that she is fearful we might leave her as well, so hold her close and please whisper comforting thoughts in her ears.  

Rush apparently has nothing but great memories. A few months ago, while we were at Christ the King, I noticed your thank you note I sent after the funeral on a bulletin board. I held Rush up and showed him your pictures. His face immediately changed, and he pointed and started smiling and laughing. I immediately knew he remembered you. I pray he is able to hold on to those memories forever. 

Thank you once again for changing my life, and thank you for helping to lead me to the path that leads to you. 


  Today was just another day in the grieving and healing process. I first wake up to pictures of you three years ago during your first hospital stay. Hospital stays were difficult for so many reasons, but today, I would do anything to be stuck in a hospital with you. 

  Today, we went to purchase a new van. Having your little sister soon, there is no more room for a baby in our semi-converted van. It was God’s intervention that we bought it in the first place, and we have had so many great memories in that van. After moving houses and passing along equipment, this was one of our last things to move past. While KC was handling paperwork, I went outside to clean out the van, never expecting the impact it would have on me. I sat on the floor where your chair sat and cried like a baby. So many great trips… to Minnesota, to the beach, family visits, sporting events, watching parades, and our daily activities. Though I know it’s only a material thing, it feels like I am moving one step further away from you. I know we couldn’t keep it forever, but making the jump was tough. 

  But today, i must focus on the positive. I can’t wait for your sisters’ reactions. They have always been mesmerized by the “magic” van doors, they can now enter on either side, there will now be much needed space between them 😃, we now have room to carry their friends, and I know we will have many more memories made in our new van. I will focus on their excitement, and of course a little of mine. I did tear up a little four years ago when I had to make the decision to be a “mini-van mom.” 😂 I think it’s a little cooler now than they were previously.  

Today, though tough, I remind myself that you will never be forgotten no matter what we must pass along. You are alive and well in our hearts while watching over all of us, patiently waiting for us to be reunited again.  

Today, like everyday, I miss you more than yesterday. 

Thank You Benny

Today, though sad you are not here with us, I want to thank you. This past weekend we attended the MTM-CNM Conference. Going this year wasn’t an easy decision only five months after you passed away, but I am so thankful we decided to go. Two years ago, the conference for us was all about what KC, you, and I needed. This year, it was all about your sisters. 

We arrived a few days before the majority did to sightsee and enjoy the city. While waiting on the hotel shuttle, I turned around to find Lennon and Isla with their heads pressed against the window happily yelling, “I see a kid with a tube!” We stopped and I allowed them to introduce themselves to the family, a family like ours two years ago with a precious one year old. The girls couldn’t have been more excited and immediately went to talk to and love on this precious little boy. While introducing ourselves, I fought back tears. Tears of excitement, tears of joy, but also tears of sadness knowing that we were the family that had most recently lost their child. I wanted you there with us. 

Two years ago, I looked around knowing that there was a chance that one of these children wouldn’t return, I just never thought it would be you. You were beautifully honored throughout the weekend, and I am so grateful for that. 

Overall I handled my self relatively well with little “waterworks.” I was just so happy to see old friends and to see how all the kiddos had grown and improved. You would have loved it. 

What made me the happiest and most proud all week was watching Lennon and Isla. The way they treat others, love others, care about others is truly amazing. You can definitely see your spirit in them and I thank you for that. Everywhere I turned, Isla had someone’s head on her shoulder, Lennon was snuggled next to someone else, playing peek a boo with the younger kiddos, or enjoying someone’s company during arts and crafts. Children with siblings with special needs are just that, “special.” I look forward to watching Lennon and Isla grow up always having and hopefully showing what you left with them. They may occasionally need a nudge from you. :)  

I thank you for introducing me to wonderful people, beautiful families, and amazing children. I thank you for teaching me love and faith. Most importantly, I thank you for all you have taught your sisters. They cried this weekend because they missed you, then they cried when they had to leave their new friends. Only you could have taught them such compassion and love for others. 

Isla who doesn’t always express her feelings well, said “I wish we could stay here.” I asked why, and she replied, “’cause I like the shirts.” :)  Earlier that day, one of the girls asked, “what are we going to do if the new baby needs a tube?”  I replied, “We will love her and care for her just as we did for Benjamin.”  Her response, “I hope she has one.” ☺️ Apparently, you left great memories for Lennon and Isla. 

Seeing you through Lennon and Isla can definitely make such a difficult time a little brighter. Thank you Benny.

Psalm 68:27 There is the little tribe of Benjamin, leading them… 

Filling Our Home

The past four and a half months have brought a roller coaster of emotions. We have had many ups and many, many downs, but mostly moments that can’t be described as either, and I think sometimes those can be the toughest. Those are the days you don’t want to talk or leave the comforts of your family or home.   This is when the kids, or KC, or a friend with a little nudge from Benjamin and God, has offered just what I needed to help pull me out of “the funk” as I call it, never leaving me to dwell there too long and reminding me how blessed we are to have had this journey with Benjamin. 

Everyone’s favorite question… “How are we doing?” My true feeling, “I don’t know.” I am not sure what is to be expected, or how we should be feeling. I don’t think anyone ever does. What I do know is that we continue to fill our home with love, laughter, faith, and wonderful memories, so I guess we are doing what we need to do to move forward. 

And filling our new home is exactly what we will be doing. About a month after Benjamin left us, KC and I found out we were expecting another baby. This baby, along with the other children, have been our silver linings when sometimes you feel like you are surrounded in a world with grey clouds. This week, I wasn’t surprised to hear we were expecting another girl. I felt that I knew early on what Isla and Rush would be, and about six months ago, I started having dreams of another little girl. At the time, I thought I was crazy, maybe we still are. 😜

We are so excited to welcome another member to our family and I know that this little girl, along with Lennon, Isla, and Rush, will have the most amazing and devoted guardian angel to watch over them until we are reunited again.  

Today I stared at a painting of Benjamin’s hands and feet. I am still in awe of the things that someone that tiny can accomplish in such a short period of time. It really makes you think about your own life, its direction, and what will be left when you leave… other than a ton of kids. 😊 

Anger and Forgiveness

Since Benjamin’s death, I have been angry. Angry at myself because for the first time, I wasn’t able to save him.  I had saved him so many times, and had become so comfortable with it, that I naively thought I should be able to handle most situations.   I kept running through my head what I should’ve done differently, and it had consumed me to the point to where it was hard for me to think of how happy he truly was. I had done my best to try to overcome this, but it became too much for me to deal with alone. I had never forgiven myself, and couldn’t see through the guilt to begin healing. I needed a reminder that I wasn’t alone, and that Someone had been with me through all of this, Someone who I don’t have to protect, Someone who I don’t feel like I have to be pretend to be happy for, and Someone who has always been there and will never leave. I have a wonderful husband and family, but trying to protect them while trying to deal with my own issues became over whelming. I had to completely lean on God. We have heard the old saying, “God doesn’t give us more than we can handle,” but I much prefer the newer saying, “God doesn’t give us more than we can handle if we lean on him.”  

A week ago, for the first time since Benjamin’s death, I cried hysterically. It was a therapeutic crying and apparently a crying that I needed.  After completely falling apart, I was put into a moment that I was able to freely explain exactly how I felt and how angry I was not just at myself but with God. And as bad as that sounds, I believe God is okay with that. In the middle of my confessing of how angry I was, a feeling of a weight being lifted gradually came over me.  At that time the song played that has become Benjamin’s theme song, “Great Are You Lord,” and at that moment, I knew I was headed in the right direction. For over a month, I had asked for a sign from Benjamin, begging him to let me know he was okay even though I knew he was. This was my sign, and I couldn’t imagine a more perfect one. Benjamin had led me to be a better person never needing to udder a word, and he continues to guide and watch over me today.  
I know I will have my bad days and this healing process will continue, but for the first time in months, when I think of Benjamin, the first thing that pops in my head is a vision of him smiling and clapping his hands while Lennon and Isla would sing and dance. I am moving past the anger and spending more time being thankful for three unbelievable years with Benjamin.   I am so thankful for an understanding God who is okay with our frustration, anger, and questions, and I am so thankful for my sign from Benjamin.   


Welcome Spring


 Yesterday was one month since our Little Buddy left us, and it felt like one month since the sun had peeked through the dark clouds. (Literally and figuratively)  Yesterday though, Benjamin offered another Beautiful Distraction on a day that could have easily left me feeling sad, depressed, and lonely. It was a day where it was too beautiful to lock yourself inside and feel sorry for yourself.  Instead, we spent all day outside making wonderful memories with the kids and focusing on our family. (And the reason why our house was a mess) :)



The girls and their friends spent part of the afternoon selling their old things (sorry neighbors), raising money for The Smiles Park. What a way to honor Benjamin on such a beautiful Spring Day.  

Today, I was able to take more donations to The Civitan Club. One month after our Little Buddy left, our wonderful friends and family have donated over $11,000. It brings tears to my eyes thinking about how generous people have been in Benjamin’s honor. 

Continuing His Work

About six weeks ago, we scheduled a time to meet with The Cross radio station. The Cross generously volunteered to donate a portion of the funds raised during their fundraising week to the Smiles Park.  Unfortunately, our meeting was scheduled for three days after Benjamin passed away. The day before, I text the Civitian Club to see if they were still going. I think none of us really knew how to handle this, but deep down I knew that Benjamin would want this playground built, so I agreed to meet. At this point, I had no idea how I would be able to talk, or leave the comfort of my house and family, but I knew it’s what Benjamin would have wanted. 

Our time talking went well, until I was asked about the recent events.  I lost it for a moment, took a little time to breath, and continued on.  Though it was tough, I felt very proud to be able to help Benjamin continue his work.  Though Benjamin will never be able to enjoy The Smiles Park, it makes my heart smile knowing that so many other children will, and many of them will remember Benjamin because of it. :)  

I left that day with a feeling of comfort that I didn’t have before. Whether it was getting out of the house, or doing what I knew Benjamin would have wanted, or the prayers and wonderful words of comfort and honesty I received from the radio station, I am able to look back and carry that with me knowing because of God and Benjamin, I am stronger than I think…strong enough to continue with his work. 

JGS Shootout

In January, I attended the JGS Priests’ Shootout. Benjamin wasn’t feeling well and couldn’t go, but I wanted to make sure the school knew how thankful we were. This was such an awesome event for such a great cause, The Smiles Park. Benjamin really had an impact on the kids the week before, and it was evident by how they all showed support for the playground.


The school asked for donations for the playground to attend the game, and after the totals were in, JGS raised $1,400!! This far exceeded my expectation, but I wasn’t surprised with such a generous community. 

This school, church, and community have been so wonderful to our family. We are so thankful for the sweet messages, food, flowers, prayers, and the continued support for the Smiles Park.  The Smiles Park has been one of Benjamin’s Beautiful Distractions for me. 



Silence Broken by Beautiful Distractions

For almost three years, I had only been in my own home on one occasion without the swishing of the vent, the occasional alarm, and the sounds of Benjamin with his toys.  Now, I am left with silence during the day. A silence that can be so painful that I have to hold my fingers in my ears to avoid it.  I have never had alone time, nor did I want it. I was so dependent on Benjamin’s presence.  

Grieving has been a confusing  process. I assumed I would cry all day everyday, but I don’t. Most of the time I feel numb…not sad, or happy, or worried, or anxious… Just numb. I’m numb until a trigger happens. Then, I feel completely heartbroken.  

I’ve had my numbness broken by a few occasions…having to return Benjamin’s equipment, occasionally wanting to rush home to hang out with him, panicking during day thinking I missed his feeding time, and when I realize there is no reason to rush home to see him after picking up the kids from school or gym.  The feelings of anger and sadness come rushing back, as well as, the selfish feelings of missing him even though I know that he is in a wonderful state in a wonderful place. 

Along with the numbness, I have so many fears and concerns…1. Will people forget about  him? 2. Will I forget the little things about him… His squishy cheeks and the feel of his beautiful hair?  3. Will I feel numb forever, or will I turn into a sobbing mess?  4. Will I always have this pain in my heart? 5. Will Lennon and Isla be able to remember how awesome Benjamin was? 

In the silence, all I can do is pray. Pray for strength not only for me, but also for my kids and husband. Pray that we will continue to live by the lessons Benjamin taught us. Pray that others will also be renewed by Benjamin’s story. Pray that one day, the silence won’t be so painful. 

Benjamin has been able to occupy some of our time with what we call “Benjamin’s beautiful distractions.”  The heaviest snowfall in years only a few days after Benjamin’s procession to Heaven was not coincidence. Our new favorite song coming on the radio right when you think you might want to fall apart is not coincidence. A sweet note or gift being dropped by the house on those days where I am so afraid of the silence that awaits me is not coincidence. Just like Benjamin took care of us when he was alive, he is still caring for us today. We are so honored to have our own little guardian angel watching over us and occasionally telling us “it will all be ok” with “Benjamin’s Beautiful Distractions.”

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.