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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Playground Play date

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Last weekend, we had a quick trip to Luling for a family Christmas, doctor appointment, and to cheer on our the Neville Tigers and Destrehan Wildcats. (Way to go Neville!!!) No trip would be complete without a visit to the Miracles To Milestones Playground.

Saturday morning, we jumped up, stayed in our pj’s, had breakfast with Aunt Sally, then rushed over to the playground. As I drove up, I was pleasantly surprised. Tears filled my eyes as I sat in awe at the amount of cars parked and the number of kids running and playing. It was perfect.

The kids played, Benjamin drove the cars, I ran him up and down the ramps, played the musical instruments, rocked in the boat, and rocked in the egg. KC asked Benjamin if he wanted an egg, and he nodded yes. 😍

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To Ms. “I Understand”

Wednesday morning started off like any other. Get the kids up and off to school, while feeding and changing Rush, and talking to Benjamin and his nurse. All was uneventful until I had to make a call to a billing company I have called 10 times in the last 10 months. TODAY, they decided that they were NOT allowed to share any information with me since KC is listed as primary. My husband is awesome, but has no idea about Benjamin’s medical insurance or billing. As my frustration built, the nice lady on the phone stated “I understand your frustration.” (Here I must explain how my husband and I compare our tempers. Him: Short fuse, small bomb. Me: Long fuse, large bomb) I cried and yelled all while apologizing saying, “I know this is not your fault,” but this is what I would really like her to “understand.”

To Ms. “I Understand”,

You don’t understand nor will you ever understand. Just like I don’t understand your situation. I understand training has taught you to attempt in a scripted way to sympathize with the client, but this technique has it all wrong. You don’t understand that I’ve spent hours on the phone with the same company since February dealing with this bogus claim. You don’t understand that I am the only person that deals with the billing of my son’s account, and if you want anything done you better talk to me.

Let’s see if you can understand. Do you understand how it feels to have a son live and rely on electricity? Do you understanding how crazy it can be not only do your job, but apparently everybody else’s? (Maybe) Do you understand what it feels like leaving your house, fearing if anything happens, you will never be able to live with yourself? Do you understand how it feels to watch parents play with and carry their two-year-old, knowing your son isn’t comfortable being held and it makes it difficult for him to breath? Do you understand that going on vacations takes months to plan not because of finances, but because you have to spend all that time trying to find activities that your child can actually enjoy? Do you understand how it feels to “hunker down” for the Holidays in fear of catching another cold or worse the flu, while everyone else is out celebrating ? Do you understand what it’s like to not get a good nights sleep in years? Do you understand what it’s like to have saved your son’s life so many times you can’t even count? Do you understand what it’s like to always keep smiling even though little bit of you is just angry? Do you understand how hard it is to find a Christmas gift for a kid that can barely lift his arm? Do you understand how it feels to watch little ones like your son gain their angel wings way too early, and know that your son could be next? Of course you don’t.

But I also don’t expect you to understand what a difference he has made my life. I don’t expect you to understand how Benjamin has saved me and made me a better person. (Expect maybe for this call) I don’t expect you to understand how truly happy he is despite his lack of movement. I don’t expect you to understand the love that we have for such an amazing little boy, but the frustration that I have dealing with companies that take time away from him.

Just like I don’t expect you to understand my situation, I don’t understand your situation either. I don’t understand situations of abuse, hunger, or neglect. I don’t know what you have been dealt in your life. So let’s stop trying to “understand,” and just be there for one another trying to help each other get along in a world that can be so difficult at times. I don’t find our situation any more difficult than anyone else’s, but I am pretty sure you can’t “understand” mine. We are not just an account number or a patient, we are a family that works very hard on a daily basis to stay happy, healthy, full of faith, and sane.

Sincerely,

Hillary
Ms. “I will never understand, therefore, I lean on Him.”

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“Sometimes being a brother is even better than being a superhero.” Marc Brown

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Civitan Smiles Park

IMG_0597.JPGThe second day building the Miracles To Milestones Playground, I was contacted by the West Monroe Civitan Club. They had started the process, and were about to release to the public their plans for an inclusive playground in West Monroe, LA. Talk about God’s timing. KC and I had talked about eventually trying to do this again in North Louisiana, but I had asked for a little bit of a break first. :) It was bittersweet playing one day on the playground we had worked so hard to build , but I knew it was time to get back at it again. After all, Benjamin, Lennon, Isla, and Rush still need a place to play. Promoting and gaining attention in a community that isn’t familiar with our family is tough, but the Civitan Club is doing an awesome job on their own. I am hoping Benjamin’s sweet face can persuade a few. :)

The past few weeks, there have been so many reminders of why I do this. A few weeks ago, I took Rush and Benjamin for flu shots. While in the waiting room, a very sweet lady started a conversation. After a few minutes, the dreaded question came up. “What’s wrong with him?” (This reminded me of the time I was asked this question by a man in a hospital gown. Should have asked him the same question.). Usually, I respond with his name and diagnosis, fearful of offending someone, but today, I replied, “Nothing is wrong with him. His name is Benjamin and he has a rare genetic disorder, but he is very bright and happy.” I could obviously tell she felt horrible, which wasn’t my intention. My intention was to educate. She was an older person who didn’t grow up in a time where many people with disabilities worked, invented, created, had families, and were given a chance to succeed. She completely agreed with my answer and we continued to talk about a member of her family she had lost, a child with a disability. With advances in medicine, a disability will eventually affect everyone.

Another reminder was with the passing of Amendment One. I
am sure people would not have voted for an amendment that protected money to send them to a nursing home instead of staying in the comfort of their own home, but because of the lack of knowledge, it passed. Knowledge is power.

And lastly, people do not know Benjamin in our new area…yet. At this time, we are back to the sad looks, the hushing of children’s questions, and the lack of understanding of how happy and smart our little Benjamin truly is. I know it will take time, but I think my adjustment time lasts longer than Benjamin’s. I have always known how happy Benjamin is, but today it was solidified in a course I took on positive behaviors. It is statically shown that “Healthier People are only slightly happier than sick people.” Though I might not like the terminology, it says enough, and since Benjamin isn’t in any pain, I think that puts him as happier than others. :)

All of this shows how important it is for all playgrounds to be inclusive. I need Benjamin’s peers to vote correctly to not only take care if him, but to take care of us too. I need them to learn how awesome all kids are, and that just because you can see Benjamin’s disability, doesn’t make him any less awesome than any other kid. I need them to want to get to know him and other kids that may be different from them as well. Lots of needs, but I think this is a great start.

It was also stated today that “Happiness is greater following spending money on others,” so if only for selfish reasons, donating to this playground is beneficial to all. :)

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Fall Update

This has probably been the longest break I have taken from writing since Benjamin joined the family. Today, I tried to figure out why. I don’t write just to fill up the page. I write to either get things off my chest, reason out a problem, vent, or share an experience. So, why haven’t I written?! Is it because we have been crazy busy, or because things have been running smoothly, or because as time goes on, I occasionally become numb to the real highs and the extreme lows? I’m still not sure, but I think I am due for an update.

Lennon: First grade, spends four hours a week in gymnastics and loves it, thinks two boys in her class are really cute, runs the neighborhood any chance she gets, and is really learning to read and spell. (No more secret spelling between mom and dad. Such a sad moment.)

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Isla: PreK4, almost knows all her letters, takes ballet but not for long, she doesn’t like to sweat, comes up with her own songs and tunes, loves the neighbors and their supply of snacks, and is just fine tripping over all the toys on the floor in her room.

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Rush: 6 months, started a Mother’s Day out two days a week (whoohoo), sits up, about to start crawling, loves to eat, and finally moved past the colic stage.

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Dad: Working hard, loving the job, and finally is able to spend more time with the family.

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Me: Stay at home Mom, loving the time with my little boys during the day, chauffeuring two little girls in the afternoons, cleaning, organizing, working out (finally starting to take better care of myself, and preparing for the handling of Benjamin’s growing body), and once again, working with the West Monroe Civitan Club to build a new inclusive playground.

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Barkley: Moved back in the house preparing for winter, licking up after Rush, and helping me clean the floors.

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Benjamin: Benjamin has been awesome. He is learning how to use a communication device that will talk for him, he is expanding on his sign language, and is loving life.

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We are happily and easily adjusting to life in North Louisiana. We are really excited about the cooler weather, and that they actually have closer to four seasons here. :) Happy Fall Y’all!