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.

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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.

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Our Vatical Valentines

IMG_1634In the dictionary, vatic is defined as “characteristic of a prophet.” It is a perfect adjective to describe the estimated 30 men that showed up on our doorstep on Valentine’s Day.

Thursday, I received a call from one of the men from the retreat that sang in church on Sunday. They had read our story, and asked if a few guys could come pray over Benjamin. My response, “Of course!” Not only, do we want as many people as possible on Benjamin’s side, but also because I think Benjamin has an unbelievable affect of others that should be shared. So Saturday, I was prepared for a “few” gentlemen to stop by.

When I opened the door, I fought back tears. There were so many trucks (North Louisiana :) ) parked outside and more people walking up (we live in an amazing neighborhood.) They filed in introducing themselves, bringing food, flowers, and a keyboard and they kept on coming. I didn’t count, but our home was full, full of prophets…our Vatical Valentines.

We prayed, sang, laid hands, and cried over Benjamin. When I heard they would be singing, I can’t lie, I was nervous. Nervous I would fall apart again, with the ugly cry, but the moment could not have been more perfect. A moment I will never forget, and I am sure they won’t either. I can’t thank them enough for what they did for me not only today, but this week. I know I wasn’t able to verbally express my feelings well, (that has never been one of my strengths) but I hope they were able to see and feel my gratitude. Moving to a new town this past year, at times it’s easy to feel a little alone, but I know I should never have that feeling again.

After writing the other night, Benjamin has been more himself and so have I. I know it’s from all the prayers that have been said in our name this week. God pushed me to write that night, and God pushed others to pray…and in good timing…God’s timing. These men, our families, and our friends helped drag me from the valley I was in, back up to the peak where it is easy to see how blessed we truly are.

I can’t think of a verse more perfect for what we witnessed today than Mark 12:31: The second is this: ‘Love your neighbor as yourself.’ There is no commandment greater than these.”

We ended our wonderful day with a quick dinner at Nonna’s (only kids there) before KC headed to work.

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Rush stayed home with his big cousin. :) He snuck his first icing treat yesterday when I wasn’t looking.

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Happy Valentine’s Day.

His Breath In Our Lungs

The past few weeks have been tough. It’s tough getting over having to save your child, it’s tough getting over watching him slowly heal, it’s tough seeing him get a stomach virus that completely dehydrated him, it’s tough staying in the hospital, it’s tough missing your kiddos and husband, and it’s tough having to continue with life like nothing has happened. I have always considered myself a positive, glass half full, optimistic person, but the last few weeks have been difficult to overcome.

I feel selfish for feeling down, especially since Benjamin is still with us, but sometimes I just want to be sad, angry, frustrated, and overwhelmed. I want my husband to automatically know when his non-emotional wife needs to be emotional. I want just a few mornings in a row where I don’t have to listen to alarms going off while watching the nurse suction him repeatedly. I want my son to breathe.

Sometimes, we need a good reminder that we are not alone, and I can’t focus on things that “I want.”

Sunday we had a beautiful Mass. It was the day when the men returned from a retreat full of energy and faith. The music was upbeat, and the kids and I were able to sing many verses without looking at the words since we sing many of them in the car. It was an emotional service, and not just for me. I wasn’t the only one with tears. I was completely fine and composed throughout mass until Communion, and the chorus sang, “It’s Your breath, in our lungs.” I sat down in the pew and cried. (The ugly cry). This chorus may not normally seem to be so touching, but to a Mom who watched her son struggle for a breath, these words were healing. These words reminded me that even when I watch Benjamin fight, he is not fighting alone. It reminds me that Benjamin belongs to God, and that his weakened body is given to me temporarily, before Benjamin returns to run to Him. Though this moment was a moment of healing, if I allow it, the healing lasts only briefly, and I am once again swallowed with sadness the next morning when the alarms are blaring and the suction machine sounds like a construction zone.

So, for now, I take a moment at a time, my husbands listens and consoles, and I try to remember how blessed I am. KC continues to remind me that no matter what happens in the future, Benjamin is here today because of the excellent care he has been given. He has already exceeded many people’s expectations. I WILL be thankful for every moment we have, and I WILL fight the selfish feelings that can consume me. I am so thankful for what God has taught me through my children, and will continue to rely on His breath in our lungs.

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(Isla and Benjamin hanging out in the bean bag at the Mardi Gras Parade: Isla told us just to go catch some beads for her.)

Checking Out The Facilities

IMG_1468With a mixture of a little pneumonia and severe diarrhea, Benjamin thought it was necessary to check out the facilities in our new hometown. We checked in yesterday, and he has been receiving fluids continuously. Hopefully we will be home soon, but I want to make sure he is ready first. We have been very happy here. Starting over with a new hospital and new doctors is very nerve wracking, but Benjamin has been well cared for here at St. Francis. I know he is feeling a little better, because he keeps signing for wheels on the bus. :)

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He Still Has Work To Do

Sparing the details, Wednesday I frantically arrived home after a call about Benjamin. Usually by the time I arrive, it’s handled, but today wasn’t that day. The motionless, grey body I walked in on showed no signs of Benjamin except for his beautiful eyes and brown hair. After a few minutes, the color returned and Benjamin started to move again. It has taken him a few days to recover, but I think we are on track to a full recovery. We have had many scary moments in the past, but this was my first time to call for 911. Thankfully, we were able to cancel the request.

So what now…how do we recover from that? When asked how I do this, I replied, “Because you have to, because I have to greet Lennon and Isla at the door with a ‘How was your day at school?’ and a big smile.” Though most of my moments are filled with thankfulness that Benjamin is still here, every once in a while I dwell on what might have been? What if I had been farther away? What if he had gone without oxygen one more minute? But I also think about what Benjamin is feeling. Is he tired of this? Does he feel like I failed? It is just so hard to get the vision of what he looked like out of my head. For a minute, I thought that I had lost him.

Apparently, it’s not Benjamin’s time. He still has work to do, and I will do what I can to get his message out. This week on International Day of Acceptance for People with Disabilities, KC and I took Benjamin to Jesus the Good Shepherd School to talk about Benjamin’s different abilities and the Smiles Park Project. I knew Benjamin would be a hit communicating through his Communication device, but I was worried how the kids would attend to me. Benjamin and I both talked on the topics, and I then opened the floor for questions, not knowing if they would have any. I was pleasantly surprised at not only how many had questions, but how many had fantastic questions. Kids are so smart, attentive, caring, and truly interested in people with different abilities, and this gave them a great, safe platform to ask questions. I left impressed and confident that the kids we talked to that day would show compassion and love to Benjamin and kids like him in the future. I’ve had many parents tell me how excited the kids were to see Benjamin, and it brought tears to my eyes.

This Tuesday, for Catholic Schools Week at JGS, the local Priests will come together for a basketball shootout. The money raised at this basketball exhibition will go towards the Smiles Park Project. We are so lucky to have had the girls’ schools past and present support their brother and the idea of all-inclusive playgrounds. With donations, will come awareness, and with awareness, comes acceptance. WE PLAY AS ONE!

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