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My Three Sons

3/25/2015

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    Most of my entries typically deal with situations and issues that arise in my own personal life. I haven't addressed many topics regarding my children because I've never wanted them to feel like they are on display. But this morning I shot a quick picture of the boys as we were getting ready to head to school. Our oldest, Michaela, was already in the car waiting when I snapped this photo.
    You can tell that they are brothers. When we are out with the entire family, all seven of us, we receive many comments of the obviousness of the relationships of our kids. It is still cold here in NW Pennsylvania, but from the coats you probably can't tell that two of the three boys have Marfan syndrome. From L-R here are the heights and ages: Corban - age 10 - 5' 3", Dylan - age 9 - 5' 1", & Andrew - age 6 - 4' 5". Corban, the oldest boy, does not have Marfan syndrome while the two younger boys do.
    All three will pass their respected grades this year (5th, 3rd, and 1st) and have similar dreams as many of their friends. Dylan is doing exceptionally well in school this year getting straight A's thus far. We have always encouraged him to use his mind and apply himself in his school work because, just like his father, he will have some limitations due to Marfan's. Amanda and I have started to guide Andrew the same way, but he just started school not to long ago.
    When I look at my three sons, and also two daughter, I see my children. I don't see the genetic condition. I don't call them my " Two Marfan sons". They are "My Three Sons". Marfan syndrome has limited some of the things that I could do and even things presently that I wish I could do, but I am defined by who I am as a person, not the limitations that are part of my life.
    Do Dylan and Andrew have as smooth as a road as Corban physically? No. Each year we visit the Pediatric Cardiologist, Pediatric Opthamologist, and their Geneticist. Each of these specialists live nearly 100 miles away, but we make it a priority to have them examined each year. They also have a wonderful local PCP who takes the time to learn more about Marfan syndrome to best treat the boys.
    In February, Amanda and I went to Children's Hospital in Pittsburgh for an appointment for myself to the boys' geneticist. After the appointment, Amanda and I went to the cafeteria for lunch. This was the first time we had eaten there. While we were eating we looked at each other and said that their is a high probability that over the course of the next 10 years we will be dining there more often as Dylan or Andrew will probably need heart surgery. That's a hard thought and reality as a parent. My parents went through that when I was 18, and I know that it will be hard when my boys need major surgery.
    With that said, I wouldn't trade my three sons for any others. They are God's gift to me and Amanda. I love them as much as the three children who don't suffer with Marfan's and I know that God has a perfect plan for their Marfan syndrome lives. With mom and dad and God, they will thrive regardless of Marfan's.   
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13 Years Later . . .

3/18/2015

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    As I shared in my post last week, Amanda and I were able to go to the Canadian side of Niagara Falls this past weekend. Just the two of us. Its been since 2001, on our honeymoon, that we have been able to go to the Falls alone. We have taken four other trips to the Falls since 2001, but always with the kids.
    It was odd with it only being the two of us. Going out for an evening alone is a rarity - let alone three days and two nights. We didn't schedule any activities for those days, but the one place that Amanda had her heart set on finding was an Italian Eatery that we went to on our honeymoon. We both absolutely loved their food and wanted to enjoy it again. For those that don't know, Amanda's maiden name was "Campitelli" so Italian food is something that she grew up enjoying. (I didn't know what Manicotti was until I met her family)
    We couldn't remember the name of the place, but when we were driving around looking for a familiar sign or storefront, Amanda spotted Mama Mia's. After parking the car, we went inside to double-check that this was the place. The inside looked different then when we were there 13 years ago, but after Amanda asked some questions about what it "used" to look like we knew we had found the right place. It wasn't until the next day that our final lunch at the Falls was at Mamma Mia's.
    The food was just as memorable as it was during our honeymoon. Thirteen years ago I had Alfredo, but on this trip I had Eggplant Parmesan. It was wonderful! Amanda had the classic dish of Spaghetti and Meatballs and incredible Italian bread, with oil on the side, was available for our dining pleasure as well. A wonderful meal with my wonderful wife of 13 years. (Our anniversary is in June just FYI)
    As many of you know, I have been working on a book for the last two years and am really trusting that it will be published later this year. Within the book I have a chapter entitled "Loved with Scars" and I address my concerns about finding a wife who will love me for who I am. A wife that isn't going to care if I have the scars of surgery or if more surgeries were to follow in ours lives.
    Amanda not only accepted the scars I had prior to our marriage, but she's been beside me for three other heart procedures and one brain surgery! She's never left my side through some very tumultuous seasons of life. She loves me regardless of the over five feet of scars on my chest and back and over a dozen other scars where tubes and wires have been removed due to surgeries.
    She loves me for who I am. My concerns as a teenager and early 20 something of wondering if someone could be "Loved with Scars" has been answered with a resounding yes. You and I (and Amanda) are each unique and special. We all have our different quirks and limits. It is true that you shouldn't judge a book by its cover. My cover looks pretty worn and I know that my shirtless chest will never be on the cover of GQ magazine, but I am so glad that Amanda looked beyond that and saw who I truly was deep down inside regardless of my Custom Scars. Spending that time in Mama Mia's on Saturday was another reminder that for over 13 years I have been UNCONDITIONALLY "Loved with Scars."   
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Still the same with Ice

3/13/2015

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Amanda and I were able to drive up yesterday, Thursday, to the Canadian side of Niagara Falls. My parents graciously agreed to take care of all five kids so we could have some time for just the two of us. Sometimes you just need to get away for a couple days to recharge.

The falls are incredible to view with massive chunks of ice everywhere. Ice chunks that are huge! But even with the ice all around, the water still flows over the falls into the basin below.

I told Amanda today that I had an idea for this blog that relates to Niagara Falls. You see the water coming over the falls, primarily the American side, is being restricted by the ice. Yes the water does make it to the basin below, but it's flow isn't as easy. It has some icy obstacles. That's the same with those of us with some type of physical limitation. We want to flow in the way that seems normal and easy, but sometimes we have an iceberg in the way that doesn't allow the flow of our life to run smoothly.

For some the iceberg is only there for a season. For others it is always there. My iceburg or ice chunk will always limit my flow but despite of that I will continue to move forward. Never give up when things are tough-even when the icebergs in life disrupt your flow.

I know it's a short blog, but my priority is to go to supper with my wife right now. (I think you understand)

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I Can't Finish

3/6/2015

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    With Easter arriving in a month things always start to get a little busier at the church. We are trusting that the snow will actually melt by the end of the month and that the spring flowers will make their way up through the ground. It also means that we need to access the storage shed behind the church. A few items are kept inside that we will be needing for our Easter Egg hunt in three weeks as well as a handful of other Easter related items.
    The problem is that the shed hasn't been accessed since we put away the Christmas decorations in early January. So for two months the snow has been accumulating to and in front of the shed door.
    In 2010 snow shoveling almost killed me as my aortic valve tore while shoveling snow. I don't have to worry about anything tearing anymore, but when I have to shovel snow it just physically exhausts me. I know that my medications have a lot to do with that, but I just wish that I could just shovel and never grow tired.
  
    On Wednesday I decided that I was going to start to dig out toward the shed in order to get access to our Easter items. I know that there are many men in the church who would dig this out in a heartbeat if I'd ask, but I just wanted to see what I could do. With shovel in hand, I made my way about halfway down the sidewalk, but I just couldn't finish. The snow needed to be shoveled in layers because of the ice and weight of the snow. I wanted to complete the task, but my body just said to stop. I have learned with Marfan syndrome that when your body says stop, you need to stop. (I also know that when I don't heed what my body tells me I suffer some painful consequences)
      Even though I could only do half of the sidewalk, I don't look down on myself or believe I am a failure. I know what my limitations are and I usually flow with them. Do I wish that I could have finished the task? By all means! It really isn't that long of a shoveling distance, but I knew that my part in its shoveling was only to make it close to halfway.
    I would have never known how much I could do if I hadn't even tried. Even though I couldn't finish it, I gave my best to try.
    That is really the same with how God looks at each one of us when it comes to our faith. If we don't even try to make progress, don't even start, then we will never know how far God wants us to go. I don't look at the snow still covering the sidewalk as a failure to complete a task, but as a measure of how much I can do. Until you take the steps of action in life and in your faith you will never know what you can accomplish. (even if it's only half a sidewalk)
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Laying in a Snow Hole

3/2/2015

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I can't believe that March is upon us and we still have so much snow on the ground. I finally received the piece to fix our snow blower on Saturday, so I was able to easily remove the 6 inches of snow from the driveway yesterday afternoon. It was so much easier than shoveling and I'm not afraid that I will drop over dead from a heart attack in the process!

After the driveway was cleared, I went to back porch to rock on the glider and watch the snow fall. Our dog, Mack, a chocolate lab, came up on the porch with me in order to receive some loving. After a few minutes Corban came around the house and we both tried to sled ride in the deep snow. We didn't have much success, and 30 minutes later Corban went inside.

I stayed outside and found a nearly 4 foot snow bank. I then got the snow shovel and dug down to the ground and made myself a little hole to lay in. Mack kept on charging in trying to lick me and lay on me, but other than that I just laid in my snow hole and watched the snow fall. It was quiet and calm. A nice break from the busyness of life.

As I sat in my snow hole I also thanked God for the life and the home that He blessed our family with. Its only been by His strength and provision that we have been blessed with so much.

If you haven't laid in a snow hole lately to contemplate on your blessings you still have time this winter. (if you live in an area where snow is) Just make sure you can get out of the hole once you've laid in it because I would hate to know that my suggestion led to your hypothermia. (Just sayin')

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    Steve Henry

    This is a place where you can find hope without feeling ashamed of your Custom Scars.

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