When it comes to talking about my children I could write non-stop for weeks and still not run out of funny or inspiring stories to tell. What I have to write about today isn't something I ever want Levi, or any of my children to read about themselves. Levi knows he has a disability and as he gets older we will reveal more about his condition when we feel led to do so. One way we will know when he is ready is when he starts asking more questions. Levi doesn't care to know too much about his past regarding his condition or anything prior to being adopted. He rarely asks questions but when he does we sit him down to have a talk and as soon as we give him the answers he wants he is happy and ready to move on. Logan on the other hand asks questions all the time. He asks less as he gets more comfortable with us but his special need is currently much more obvious than Levi's.
I will probably remove this post well before Levi discovers I'm writing a blog about my children and putting in specific posts about his disability. I'm not trying to hide anything from my children but there are just certain topics that have to be explained in a more child friendly matter. You'll see what I'm talking about later.
I'm telling this story to the best of my knowledge. I'm using my wife as reference but anything before we adopted him at the age of 4 is what we were told from his foster home.
Levi was born on March 24th, 2005. We don't know anything about his parents except for the fact that they loved him very much. The first reason we know this is because they kept him so long. He was 6 months old when he was abandoned but he only weighted 8 pounds. This tells us that his parents didn't want to abandon him but realized he was dying and couldn't afford medical care. The second reason we know they loved him is because of where he was abandoned. Going through the adoption process we found that there are generally two ways a child is normally abandoned in China. One is to take them to the most secluded area possible so nobody will see you. Somebody would do this so they don't get caught and their love for that child is trumped by the punishment for committing the crime. If you are caught abandoning a child it is punishable with up to 5 years of prison. Parents that abandon their children in public areas really want their children to be found and will take the extra risk of getting caught. Because Levi was found on the front steps of a Police station in Henan tells us that his parents really wanted him to be found and really wanted him to get medical care.
There is also the possibility that his biological parents found out that he had a disability before he was born, in that case they could have easily aborted him because abortion is legal all the way up to birth. We like to believe that Levi's biological parents loved him a lot and only did what they had to because it was the only way to save his live.
Regardless, Levi made his way to an orphanage that really couldn't take care of him so he ended up making his way to an amazing foster home called New Hope. http://www.hopefosterhome.com/ This is where Levi met Logan (Our second adopted Son) and this is eventually where we found him.
The amazing people at New Hope were able to find the correct doctors to care for Levi. There are a lot of medical terms that I could use to explain his disability but here are the basics in layman's terms: Levi was born with half a heart... now that's pretty bad but it gets even worse because only half of that heart works. Crazy he made it 6 months. It was even worse than that because his heart had holes in it and good blood was leaking into the bad blood so not only did he have horrible circulatory system but the oxygen rich blood wasn't so rich of oxygen.
Before we even found out about Levi, New Hope was able to send him to Singapore to have two life saving surgeries performed by an amazing Dr. Shankar. We knew he was going to have to have a third and final childhood surgery that would install a device called a fontan. The plan was to get him home before this surgery was performed but because his health was declining so quickly it had to be done prior to the adoption. The surgery was extremely successful but Levi had a horrible recovery. He was very touch and go and we didn't know about a lot of this at the time. But over all he was in the hospital for the surgery for 6 months. Levi spent a majority of his first 4 years alive in a hospital. Crazy to find this out considering his happy, cheerful self today.
The Fontan: Let me help draw out for you. Picture your heart as a circle. In this imaginary circle draw a cross to split the circle into 4 even parts or pie pieces. These represent the 4 ventricles of a normal human heart. The two ventricles on the left side of your heart pull old blood, lacking of oxygen, from your body and push it to your lungs and back to the right two ventricles. The two ventricles on the right side assist with pulling the good oxygen rich blood from the lungs and push it to the body and the blood eventually makes a full circle back to the left two ventricles. Because Levi's left two ventricles were basically none existent and doing nothing but bad things to him, New Hope had the fontan procedure done that basically built a bypass to go around the two left ventricles and go straight to the lungs. And because one of Levi's right ventricles doesn't work, Levi's body is working with a single ventricle, were the normal human heart has 4.
The link below has some studies regarding the ongoing life of a Fontan Patient.
http://www.childrensheartfoundation.org/node/314
Levi is going on 5 years post surgery. He has beaten the first statistic where a large majority of Fontan patients will slowly or rapidly decline and ultimately the Fontan will fail along with the heart. I don't like to think or say what this means to the patient but everybody knows what happens to your body or life without a functional heart. Getting past the 10 year mark will be another great milestone for Levi as most of my reading points to the fact that any major issues will occur in that time. But regardless, the life expectancy of the Fontan and their patients are 30 years.
At the time that I'm writing this I'm 35 years old and consider myself a young adult. I'm still discovering my potential and have great expectations of building my family, and myself. The fact that Levi my never make it to my age is humbling.
We constantly see children with the same or similar disabilities as Levi move on to Heaven at a much younger age. Sometimes it's because of complications from a surgery or issues that were brought on because of common sickness that people with a healthy heart can shrug off with a little time.
I know that God can completely heal his heart and I truly believe he will. I think Levi will live an extremely long and healthy life because God has a lot planned for this 8 year old. That's why he is part of this family because God gave Levi parents that could truly care for him the way he needs to be taken care of.
Thursday, December 26, 2013
Tuesday, November 12, 2013
Funny Story
I know I haven't gone into details of either of my children's disabilities or special needs but I do have a funny story that I would like to share concerning a mishap on my part regarding an item that is frequently used when we go out into public.
Levi, our first son, has a disability that requires us to make sure he doesn't get sick. What can be the slightest cold to most people can be (and has been) a big deal if Levi picks it up. So during the winter seasons, or what we like to call Sick Season, we don't go out in public very much. When we do leave the safety of our home we use hand sanitizer in excess. It's crazy how fast we can go through a small bottle of purell, so that's why we carry several small bottles. We also have a couple of larger bottles and don't even get me started on sanitary wipes.
A couple of weeks ago, when the leafs in North GA had just started changing into their pretty fall colors, we decided to take a trip to an apple orchid in the GA mountains of Ellijay. We planned it on a weekday afternoon to miss the crowd. To say that there was barely anybody there is a complete understatement. We saw a total of one other family that afternoon.
When we arrived and were getting out of the car I was doing my usual activities which is generally putting on the backpack full of medical supplies, diapers and spare cloths. The spare cloths are a "just in case" for the children but we rarely go anywhere without this backpack. But before I put the backpack on and started helping Tiffany with the other stuff, I reached deep into one of the backpack pockets to grab my pocket sized bottle of hand sanitizer. This is generally my personal bottle that I use every time I touch something in public. The rest of the family generally uses the pump bottle of sanitizer on the side of the backpack I'm carrying.
So we're walking around and enjoying the sites and we take a quick hay ride back to the petting zoo because we know the boys are going to love that. As soon as we get off the hay ride I reach into my pocket for my trusty little bottle and I put a liberal sized glob of sanitizer in my hand and start rubbing it in and notice the consistence is a little different that what I'm use to. I just think to myself, "it must be a new formula". I then shrug it off to make our way to the petting zoo.
After paying an extensive amount of time playing with all of the animals in the petting zoo we were able to rinse our hands at a sink just outside of the gate. Then we all applied our sanitizer and once again I noticed the consistency of the goo that I was putting in my hands just wasn't right. I also started noticing that everything I touched was extremely slippery. Once again I shrugged it off and continued having fun.
As the fun is winding down and we're about to leave we spent a little time taking pictures of the boys sitting on old John Deer tractors and I went to apply more hand sanitizer. As I applied the sanitizer the bottle almost slipped out of my hands because my hands were just that slippery. That's when I finally took the time to really look at this bottle of sanitizer and that's when I realized... One thing I haven't mentioned yet is, in this magical backpack full of cloths, diapers and medical supplies are the supplies that we carry for Logan's special needs. And one of those supplies is a bottle of personal lubricant that is the exact same sized as hand sanitizer and somehow that is what I grabbed at the beginning of our trip. When I got out of the car and started preparing for the afternoon I thought I put a bottle of hand sanitizer in my pocket but instead I put a bottle of Astroglide in there. So the whole afternoon I had been lubricating my hands instead of sanitizing them. It's an easy mistake to make but it's one I'll never make again.
Needless to say, when I told Tiffany and the boys they all laughed at me. Logan laughed so hard he almost fell off his tractor. Hopefully these are memorize my children will never forget.
Levi, our first son, has a disability that requires us to make sure he doesn't get sick. What can be the slightest cold to most people can be (and has been) a big deal if Levi picks it up. So during the winter seasons, or what we like to call Sick Season, we don't go out in public very much. When we do leave the safety of our home we use hand sanitizer in excess. It's crazy how fast we can go through a small bottle of purell, so that's why we carry several small bottles. We also have a couple of larger bottles and don't even get me started on sanitary wipes.
A couple of weeks ago, when the leafs in North GA had just started changing into their pretty fall colors, we decided to take a trip to an apple orchid in the GA mountains of Ellijay. We planned it on a weekday afternoon to miss the crowd. To say that there was barely anybody there is a complete understatement. We saw a total of one other family that afternoon.
When we arrived and were getting out of the car I was doing my usual activities which is generally putting on the backpack full of medical supplies, diapers and spare cloths. The spare cloths are a "just in case" for the children but we rarely go anywhere without this backpack. But before I put the backpack on and started helping Tiffany with the other stuff, I reached deep into one of the backpack pockets to grab my pocket sized bottle of hand sanitizer. This is generally my personal bottle that I use every time I touch something in public. The rest of the family generally uses the pump bottle of sanitizer on the side of the backpack I'm carrying.
So we're walking around and enjoying the sites and we take a quick hay ride back to the petting zoo because we know the boys are going to love that. As soon as we get off the hay ride I reach into my pocket for my trusty little bottle and I put a liberal sized glob of sanitizer in my hand and start rubbing it in and notice the consistence is a little different that what I'm use to. I just think to myself, "it must be a new formula". I then shrug it off to make our way to the petting zoo.
After paying an extensive amount of time playing with all of the animals in the petting zoo we were able to rinse our hands at a sink just outside of the gate. Then we all applied our sanitizer and once again I noticed the consistency of the goo that I was putting in my hands just wasn't right. I also started noticing that everything I touched was extremely slippery. Once again I shrugged it off and continued having fun.
As the fun is winding down and we're about to leave we spent a little time taking pictures of the boys sitting on old John Deer tractors and I went to apply more hand sanitizer. As I applied the sanitizer the bottle almost slipped out of my hands because my hands were just that slippery. That's when I finally took the time to really look at this bottle of sanitizer and that's when I realized... One thing I haven't mentioned yet is, in this magical backpack full of cloths, diapers and medical supplies are the supplies that we carry for Logan's special needs. And one of those supplies is a bottle of personal lubricant that is the exact same sized as hand sanitizer and somehow that is what I grabbed at the beginning of our trip. When I got out of the car and started preparing for the afternoon I thought I put a bottle of hand sanitizer in my pocket but instead I put a bottle of Astroglide in there. So the whole afternoon I had been lubricating my hands instead of sanitizing them. It's an easy mistake to make but it's one I'll never make again.
Needless to say, when I told Tiffany and the boys they all laughed at me. Logan laughed so hard he almost fell off his tractor. Hopefully these are memorize my children will never forget.
Saturday, October 26, 2013
How I Met Your Mother
Before I get to writing about special needs children or my children in general I would like to first explain how my family came to be, so I'm going to start from the beginning.
On April, Friday the 13th, 2003 Tiffany and I were setup on a blind date. I had just turned 25 years old and Tiffany was a few months younger at 24. Our mutual friend and match maker, April, had setup us up and she was doubling with her boyfriend on our first day for a fun night out on the town. I had never even seen a picture of Tiffany nor did I know much about her but regardless, I was still extremely excited about this date.... Tiffany on the other hand... not so much. She had just gotten out of a long relationship and wasn't really looking forward to this date. In fact, I found this out later, but the only reason she went on the date was because April promised she would buy Tiffany and new outfit if she didn't like me. One other thing I should mention is that we had already planned our second date not even knowing how the first would go. We all had tickets to Six Flags for a full day of Sunday fun. This was a bad idea but looking back at it, it's probably one of the reasons we eventually got married and grew our family.
With out going into to too much detail I'm happy to say our first date went horrible. When April, her date Nathan and I we went to pick Tiffany up she was nowhere near ready. I think she was relaxing in the bathtub when her little sister answered the door. After waiting on her for a while the date eventually started and I could tell right away that Tiffany had no desire to be there. When I asked her questions about herself she found a way to tell the answer to April instead of me. I'm pretty sure she was trying to scare me away by ordering expensive drinks, taking a sip and then pushing them away with the excuse of "I don't like it" just to order something different. We made three stops that night and it pretty much got worse as the night when on. I have to say, I'm no Don Juan so I probably wasn't helping out with the situation. I was as awkward as a cow on a crutch. By the last stop I could see a small glimpse of her having fun, not so much with me... Her and April had a few laughs together though. When I dropped her off that evening I walked her to her door and said good night. That was it, am I'm sure Tiffany was thinking that was the last she would ever hear from me. She was also probably excited about her new outfit April was going to buy her.
Mid day Saturday I was hanging out at my house and I kept thinking about our plans to go to Six Flags the next day. I mean, I really didn't want to hang out with Tiffany all that much, but for some strange reason I felt the need to give her a call. Maybe she would let me take her out for dinner, just her and myself. So I gave her a call. I could hear the shock in her voice when she answered her phone and heard me on the other end. I told her I felt the date the night before was a disaster and I still wanted to go to Six Flags. I wanted some one-on-one time with her before we decided to go (or not to go) on a second date. I went and picked her up and we went to a shoe store where she helped me pick out some shoes. We then went and saw the Adam Sandler movie Anger Management. That evening when I dropped her off I gave her the most awkward first kiss of all times. I still kick myself to this day, but I was no good at this "first kiss" thing. I was over thinking it because I hadn't experienced many first kisses in a relationships, nor did I want to. I told her good night, leaned in to give her a kiss, closed my eyes and gave her an extremely fast peck on what I was pretty sure were her lips. I was in my car backing out of her driveway before she could even get her eyes back open.
Even with all of the awkwardness and the horrible first date, once we met on that Friday the 13th night, it was very rare for anybody to see us separately again.
Everything moved extremely fast from that point. 3 months after we met we were engaged. 6 months after that we were married. We were and still are truly in love with each other. She is my one and only and I thank God multiple times every day for her.
This is just the beginning of the life God has laid out for us. Now, ten years later, I can look back and see we have been trough a lot of trials and tribulations that may have easily ripped others marriages apart, but I'm thankful for each and every bump in our road because it has built this family into the one it is today. I can honestly say I love my wife more today than I did yesterday. It's been an ongoing adventure and I can't wait to see what's next.
Tuesday, October 22, 2013
Intro
My name is Eric Michael and I am the father of three boys, two of which have special needs. I've been journaling about my experiences as a father for a while and I feel like I might be able to help others in similar situations by writing in a more public fashion.
First, I want to state that I am not a professional when it comes to special needs. I'm a Husband First and a Father next. During the day my co-workers call me a Windows Server Engineer and I'm as knowledgeable about my Children's specific disabilities and needs as I am my profession, so I can make plenty of statements with confidence for our particular situation but when it comes to other needs I will use the help of external links produced by professionals or other parents with experience pertaining to those needs.
If you would like to give suggestions regarding topics or articles please leave comments. I invite constructive comments and will welcome all suggestions.
First, I want to state that I am not a professional when it comes to special needs. I'm a Husband First and a Father next. During the day my co-workers call me a Windows Server Engineer and I'm as knowledgeable about my Children's specific disabilities and needs as I am my profession, so I can make plenty of statements with confidence for our particular situation but when it comes to other needs I will use the help of external links produced by professionals or other parents with experience pertaining to those needs.
If you would like to give suggestions regarding topics or articles please leave comments. I invite constructive comments and will welcome all suggestions.
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