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!

The Great Wolf Vacation

20140726-104914-38954735.jpgKnowing that we only had KC home a few weeks before starting work, and since it’s been a year since we have had a family vacation, I knew we needed some time to enjoy each other and to focus on the kiddos. Deciding on a vacation for this family isn’t easy. We are limited by so many things, but primarily by Benjamin’s needs. Disney is too hot in July, a cabin on the lake is rarely accessible, and flying is a challenge I am not ready for, so after googling “vacations for kids with disabilities” and finding The Great Wolf Lodge, I was intrigued.

My mom kept Rush for us so we could focus more on Benjamin and the girls, and so I could involve Benjamin more in the daily activities. I can’t imagine trying to juggle Rush and Benjamin in the water. I think Rush was just fine staying with Nana.

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We arrived Monday and I couldn’t have been more excited. Starting the day off with a bang, KC and Lennon went to ride slides. Isla wanted to stay In the little pool with us, so with her “assistance” I started to discretely change Benjamin into his trunks and swim diaper while he was stretched across my lap. (1st mistake) Benjamin had more in the diaper than expected so I asked Isla to grab the wipes. After 5 min, a woman next to us grabbed the bad and handed it to me so I could look. No luck, Isla had taken the wipes out in the car. (2nd mistake) With no choice, I strategically cleaned him with another diaper, working hard not to spread or drop anything, while keeping Benjamin completely covered. Starting off with a scene of a too long Benjamin spread across my lap, while fussing at Isla, and sweating, we definitely attracted some attention.

Knowing that The Great Wolf Lodge was listed in the Top 10 of vacations for people with disabilities, I guess I was expecting to see other families like ours. Instead, we had our normal adjustment period getting comfortable with the stares, as well as, children AND ADULTS splashing acting like they were completely oblivious that my son is hooked up to a machine. Believe me, they stared long enough to know. :) I covered the vent with a few towels and we never had a problem. The stares never bother me; however, this day, I was angry and upset. I don’t know if I was mad at the stares, angry with the splashing, or furious with a disorder that doesn’t allow Benjamin to run, splash around, and play with the other kids. Things like this rarely affect me, but here I sat in the pool holding Benjamin splashing with his arms, while my eyes filled with tears. I fought them back never letting Benjamin see me upset or anyone else.

A little while later, my guardian angel nudged a woman to speak to me. She didn’t really know what to say, just how happy she was to see us with Benjamin in the pool and she loved seeing how much fun he was having. With tears in her eyes, she mentioned how it reminds her how fragile life truly is, but that she was so impressed with what we were doing. Those few minutes reminded me of all the wonderful things this life offers us and completely made me forget about my previous pity party in the Zero Entry Pool. I wish I could of explained to her what she did for me that day, but sharing my feelings verbally is not one of my strong points.

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The rest of our trip was a blast. We ventured out to Fort Worth to watch the Longhorns mosey through town, took some pictures with Cowboys, and visited Lego Land. KC and I even took turns riding the slides that Lennon was too small to ride. Benjamin saw his first 3D short movie, fell in love with a monkey ballon animal, and participated in story time at the Lodge. (He even clapped on cue with the little dance).

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The Great Wolf Lodge was a great experience. The waterpark was awesome, the rooms were clean and large enough for the fam, the floor lamp worked perfectly as a feeding pole, and the staff was extremely nice. There were only a few negatives to The Great Wolf Lodge…
1. Very few handicap accessible parking spots. However, on the last day, we realized we could park at the conference center entrance for easier parking and it was closer to our room. (Realized on the LAST day)
2. Our last afternoon in the pool, a child had “an accident” ending our pool time a little early. Glad I missed seeing this.
3. It was a little crowded.

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I am so thankful for this vacation. Since Rush has been born and we have been fighting with Colic (so bad that a doctor gave me a pamphlet for a fussy baby support group), I feel like I haven’t given enough attention to Lennon, Isla, and Benjamin. KC and I were quickly reminded of Lennon’s creativity, Isla’s humor, and Benjamin’s love of life. Though I may have my moments, at the end of the day, it’s easy to see how truly blessed we are.

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If you happen to watch the Amazing Race (Asian version), keep an eye out for the family. We might have been caught in the background while they were filming in Fort Worth, Texas. :)

Initiation Staycation

Question: What do you do when your kids are unsure about moving to a new place?

Answer: You take them to every fun activity you can think of in the first week, until you are exhausted. My family has been here to help and tonight after my mom gave Isla a banana not knowing that I had already told her she couldn’t have one, she told my mom “she (me) may fire you.”

It has been one week since we officially moved. In that one week, we have visited the splash park and pool,

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Experienced the Children’s Museum

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Toured the Zoo (Benjamin’s first boat ride)

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Hung out with family

Rode bikes in the street

Had sleepovers

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Ran through the sprinklers

Played at the neighbors (the girls have asked every neighbor if they could go to their house)

All followed by promises of the movies and fishing. (Chuckie Cheese was checked off the list a month ago.)

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(Isla’s first contact with a character)

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We have landed in a wonderful neighborhood and between Lennon, Isla, KC, and Barkley, we are well on our way to getting to know everyone. :). So far I think our Initiation Staycation is a huge success.

The Miracles To Milestones Playground

20140707-081223-29543617.jpgWe have officially moved, but not before we could play on the wonderful new playground. I made sure we were able to have a few minutes to play, or we were breaking in. ;).

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Driving there, pulling up, and unloading Benjamin was a little emotional for many reasons. 1. We did it. We finished this project just in time for our big move. 2. When I think about how supportive everyone has been, it makes my heart smile. 3. We are now moving from a community that has loved and embraced Benjamin and our family. Moving wasn’t the easiest decision.

Well, the playground was a hit with this family. Lennon’s feet barely touched the ground while she repeatedly scaled the entire playground. I spun Isla so many times that I can’t believe she didn’t get sick. Benjamin loved all the toys that were at his reach especially the musical toys and the steering wheels, and I couldn’t have been happier as I watched Benjamin play side by side with his sisters. We also put Benjamin on a slide for the first time. Benjamin is sensitive to the heat and since it was midday, the slide was warm and he was not happy.

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Mom on the other hand was teary eyed. It’s one of those activities that I do for me more than for Benjamin. :) I just want to make sure he has every chance to experience life as his sisters did. Next time, we will try under better weather conditions, and hope for better results.

I can’t thank this community enough. This community donated, spread the word, gave words of encouragement, and worked hard for three days to make this a reality. The Parish couldn’t have been more supportive providing the location, the foundation, and a fantastic group of hard working people.

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I know the kids and families will love it. I hope it is all that they expected and more. I hope and pray that Benjamin has had as much of an effect on the community as he has had in our family. We have been blessed and we are glad to share our blessings with the Miracles To Milestones Playground.

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Overwhelmed

Overwhelmed: to have a strong emotional effect on.

In the past month, we have bought a house, sold a house, moved, finished a playground, and graduated. I have been on the phone for hours changing addresses, changing companies, and arranging healthcare. I have been happy, sad, stressed, excited, anxious, and overwhelmed in a good way and in a not so good way. At least once a day I have to stop, breathe, and pray…pray for peace and calmness, but also pray in thanks for everything we have been given.

Last night, KC officially finished his residency, so we had a wonderful night out and my first night away from the kiddos in a long time. I am so proud of him, and it was so wonderful to be able to give my undivided attention to KC, since usually my attention is divided into 5. Before we headed home today, we were lucky enough to spend time with our friends over breakfast, then we were able to see a movie for our anniversary (a movie that was not a cartoon). :)

On our drive home, I reached over to KC and mentioned how lucky and blessed we are. I said we have a great life, great marriage, great kids, great jobs, and the list continues. Now, at no point do I think our life is perfect, but I think that since Benjamin has been born, I see things a little clearer. I thank Benjamin all the time for saving me, for bringing me closer to God, and for changing my life. I am definitely a work in progress, but with a much clearer goal. KC and our children are my life, and it’s crazy how much I miss them when I am away from them.

Though our life has definitely not turned out as we planned, I know it is His plan and therefore, I will try to keep my focus on being overwhelmed with the wonderful and joyous things in our life while trying to avoid being overwhelmed with earthly issues. All clouds have silver linings, and rainbows follow storms. It’s just crazy how sometimes we have to be negatively overwhelmed before we realize that we are also wonderfully overwhelmed.

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Me and the Boys

This week, my girls have been spending some quality time in the country with my family. They have been very busy with basketball camp, swimming, driving their Hummer around, and riding the four wheeler in the woods. At first, Isla was not sure about basketball camp, asking “Can I just watch Lennon at basketball camp because I don’t know anything about that?” She quickly learned a few things including how to shoot the ball. She is unable to get the ball to the goal, but Isla felt fully accomplished throwing the ball in the air and having one of the helpers put it in the goal for her. She clapped for herself every time. Lennon just couldn’t wait to call me to tell me that she could dribble AND run at the same time. I’m pretty proud since after all my years of basketball and three state championships, I still find that difficult. :)

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So this week, it has been me and the boys. They have spent more time together, but also more time one-on-one with me.

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Yesterday we were able to lay around in our pj’s all day. A rainy day was perfect for brotherly bonding.

What started off sweet…

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Quickly turned to this…

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And this…

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But ended with this…

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I love how Benjamin was reaching for Rush when he fell asleep. (Or maybe for his pacifier)

This morning we woke up and started to get ready for church. A small part of me wanted to give up and stay home, but I knew we could make it. With KC in residency, I have to do a lot of things on my own. This is something I was aware of going in and when making the decisions to have these four precious kiddos. Most of the time I feel like things are under control, but I always miss him knowing things would be easier if I wasn’t alone. Today, I was reminded I am never alone. Not only were we offered assistance from the moment we pulled up to the moment we left, I sat in church and was reminded that God is always with me. How else would I be able to do this?! He keeps me calm, sane, and patient through my most difficult times, and today, he stopped the rain before I had to load up the kids after church. I think he also gives KC comfort when he does have to be away from us, knowing that we are taken care of.

After mass, a close friend offered to help us get to the car. (Her hands are also full with a two year old and 5 month old) When I refused, she then offered to fluff my cape. :) I’m honored, but any parent that brings their kiddos to church is a superhero, we just stand out a little more.

Thank you God for reminding me today that I am never alone and for holding my hand on this journey. :)

Ground Breaking Breakthroughs

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Last November, when we started to get the fundraising going, it seemed like the groundbreaking for the new playground was so far off. Sometimes I can’t believe it, but now if I need a reminder, all I have to do is drive to the East Bank Bridge Park. Last weekend, the old equipment was removed, and dirt was brought in. Equipment should be delivered next week, and the community build begins June 2nd. I’m so proud of this community for supporting us and supporting this project.

Not only has there been a ground breaking at the playground site, there has also been a breakthrough at home. Today, like every other, we placed Rush next to Benjamin for some brotherly bonding. All previous attempts haven’t been too successful, and I can’t say I blame Benjamin. Rush has been quite a fussy little guy. He was fussy enough for me to have him checked out by the doctor, and at home we frequently hear Lennon say “oh my gosh!” and Isla say “Momma, feed him.” With no answer other than an extremity sensitive stomach, it looks like things might finally be looking up. (I sadly had to give up caffeine)

Lowering Rush close to Benjamin, I touched Rush’s lips to Benjamin’s head as if he was kissing him. This is nothing new, but not once has Benjamin had a positive reaction. He has even cried over this gesture before. After doing this a few times, I held Rush next to Benjamin, and Benjamin started to click his tongue. (This is how he shows kisses since he can’t smack his lips consistently.) After “kissing” at Rush a few times, he dropped his glasses (the glasses actually belong to his nurse, but he LOVES them) and reached for the ones on her face. He then took them off and went to hand them to Rush. He not only did this once, but twice. :) This is a huge deal, much bigger than just a pair of glasses. Benjamin takes everyone’s glasses, if he drops them and you don’t return them, he cries, and he definitely doesn’t share them. He usually has at least two in his hands, which means his nurse has to bring at least three pairs a day so she can see to work. I was shocked and excited. I guess Benjamin has realized Rush isn’t going anywhere, so they might as well get along. Benjamin is going to be such a great big brother, and Rush will be his “little Buddy.” :)

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