“When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.”
I know you have all heard the expression, "Feeling alone in a crowded room." That is how I feel when it comes to this disease. Especially, when it comes to Ashton. Making choices for me isn't easy, but at least I am making them for myself and I don't really allow myself to think about if it is right or wrong, I just concentrate on what I feel is best. It isn't so cut and dry when it comes to making huge life decisions for your child.
You know, if it was a cut knee, I could put a bandaid on it. As mothers, we just want to fix things. When facing a problem, our first thought is, "How do I fix it?" With FAP, you don't have a ton of options and you can't really ever "fix it." Most days that is just not acceptable to me. It's hard and I struggle and my heart aches.
Ashton had his second colonoscopy/endoscopy this week. In January, he had 20 polyps in his colon, total. They removed all of them. It has been 11 months and he now has many. They stop counting at 50, so he has 50 plus. They removed 8 of the larger ones to biopsy and we should get those results back in a week or so. We pray that there is no cancer at this time. His doctor felt good about those that she removed though. However, we had to have that talk that I've been dreading. At this point, it's timing. The clock is ticking and we are now gambling. For some reason, for me, this has been just like finding out the first time...all over again. "Lord, I'm not ready." He's telling me to get ready though and I don't like it.
We've decided to wait for the biopsy results and if there is no change, we will wait 6 months for his next colonoscopy. That gives him a break from it and it gives me time to think. The goal is to get Ashton through high school before surgery is needed, but if he starts having any symptoms or a polyp changes, we will do what we have to do.
On our way home from Ashton's procedures Monday, Ashton asked me if he could give this disease to his kids. It was such a smart question for his age and I was so glad that he was thinking that far ahead, yet I found myself really sad when I had to answer him. I gave him the facts - his children have a 50/50 percent chance of having the disease. However, I gave him the positive side of it. There are so many new medical discoveries every day, there are ways of changing genetics and testing for those things and there are other ways of having a child. Imagine being 14 years old and already having to wonder if you will have to make those decisions one day. Through my insecurities in all of this, my goal is to make him BRAVE!
Information about Familial Adenomatous Polyposis at:
http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Wednesday, December 30, 2009
Tuesday, December 1, 2009
Not yet defeated...
This post will be mainly for those of you with F.A.P. and for parents of children with F.A.P. Also, I should add, this is only my opinion.
Please, please make sure you get a second opinion and that you talk to your gastroenterologist and a surgeon. I suggest talking to several doctors before speaking to your surgeon and making a surgical decision. You truly want to have ALL the information beforehand.
A few things that you might want to ask, that I did not, are:
1.) Can I get polyps in my J-Pouch, K-Pouch (or whatever you might have) after my large intestine is removed and my pouch is created?
2.) If you have stomach polyps, what TYPE of polyps do you have and what are your chances that those polyps will turn into cancer? F.Y.I. - the second leading cause of death in anyone with F.A.P. is stomach cancer.
3.) Is F.A.P. in every cell of my body? The correct answer should be yes. This means that your skin and bones can also form tumors. Any of you with Gardner's Syndrome understands that is true already, but just ask the question anyway. You need to have your liver and thyroid checked on a regular basis and, if you are a woman, your reproductive organs.
These are questions that I did not ask and now I wish I did. Would it have affected my decision making process? Maybe, I can't look back now. Something that I want everyone to understand, is that this disease does not wait for you to decide it's time. It is an aggressive disease that isn't understood completely by doctors, so you have to stay on top of it. They do not know what causes the gene to mutate and they still do not understand how to prevent it or cure it. So, having said that, please understand how important it is to stay one step ahead of it. I'm only one person, but I hope to find a way to educate more people about this disease.
Having said all that, Ashton goes for another colonoscopy/endoscopy soon. Please keep him in your prayers. We had our first dental visit today after finding out that Ashton had Garnder's. He does have several problems with his teeth, but the dentist is hopeful and optimistic that we are ahead of the game and everything is able to be fixed. Right now we only have two teeth to be concerned with. YAY! Next step, braces!
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Monday, November 2, 2009
Compassion in all things.
Compassion - a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.If there is one thing that I want my children to learn in this lifetime, it is compassion for others. Compassion has been heavy on my heart for a while now. That word, feeling, emotion, act is so important to everything else in our lives. It sets us apart from those that don't have it in every way. You can love someone enough to have compassion for them, you can be mad at someone and have compassion for them, you can not even know someone and feel compassion for them. Through compassion, we find forgiveness for others and ourselves.
I've come to a place where I finally felt compassion for my circumstances and it made me realize how much more I feel for the people around me. Thanks to all of you that compassionately loved me and cared for me over the last 6 months.
This post is for one of my good friends. You deserve compassion as much as anyone else. Accept that your life is equally as important. You are not destined to live a life without compassion for your circumstances. Remember, the biggest giver of compassion, is Him.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Friday, September 4, 2009
Oh coffee....
"Coffee isn't a drug, it's a vitamin!"
One thing that I absolutely miss right now is coffee!! It doesn't matter how I drink it, coffee is just not my friend. So, I have to settle for smelling it when Bill is making it here at home or I'm grabbing a Green Tea Frapp at Starbucks.
I am doing so much better since my last surgery. Take down/ileostomy reversal surgery was July 9th, 7 1/2 weeks ago. The first couple of weeks after the surgery were tough. I was in the bathroom around 15 - 18 times a day. I was taking close to 8 hot baths a day. I was using creams and Tuck's pads for the "butt burn." I had major, major cramping from everything trying to wake up and start moving again. I will also add, for those of you approaching this surgery, I did have problems holding it at night. So, I would wear a pad to bed. I won't lie, that is the most...I'm looking for the word, depressing, irritating, sad thing. I really had a hard time dealing with that.
Week 3 was a good week and I needed it! I started taking 2 Lomotil at night and that got me through the night. My cramping stopped finally. I still have gas pains, but the bad cramping wasn't there.
That brings me to my next subject, food. For the first 4 weeks, I introduced foods slowly and I think that really helped me. I didn't eat anything too bulky. I had white rice, mashed potatoes, yogurt, soup and oatmeal. That is pretty much what my diet was. Then, slowly, I started adding other foods. At 7 weeks, I still am not eating very much red meat. I eat a lot of chicken and tuna. I just started adding fruits and vegetables, but I make sure I'm going to be home when I eat them. Fruits and veggies will make you go to the restroom more. I should also add, that any time I add a new food, I make sure I'm going to be home. Also, if you try a food once and it doesn't work, try it again at a later time. It could just be the day.
I'm 100% lactose intolerant. I have switched to soy, lactose free and rice milk. Believe it or not, I actually enjoy dairy better that way. I wish I would of done it years ago! You can find just about anything at Whole Foods. The kids are even eating and drinking those things because they like it.
About week 5, my hair started falling out in handfuls! It scared me because it was so much. I did find out that was because of the stress of the surgeries on my body, the fact that I'm anemic and the "lack of" my diet and the foods I'm eating right now. I started a daily vitamin (double the dose for now) and that has improved how much hair loss I have and has increased how well I feel. I could see a huge difference 3 days after I started the vitamin. My doctor said she would give me all these different meds and pills for the issues I was having, but I really want to do it naturally because I will face these issues the rest of my life. Potassium is something else that I always have problems with. Not easy for me because I don't like bananas, but I did find out that grapes are a great source of potassium as well. So, I'm working on that.
Something else that can be a pain is carbonation. Carbonation causes gas and for several months, you won't be able to pass gas unless you are on the toilet. Some people will always have to sit on the toilet to pass gas because they can't tell the difference. The gas can also be painful, so I watch my intake of anything carbonated. Gum has the same effect, but not as bad. So, I usually just suck on hard candy. Using a straw can cause the same problem.
I have found that marshmallows and eating ice help thicken things up. Strange, huh? It works though. Tucks pads and hot baths are the best things for your sore bottom and until your control is better at night, try the Lomotil or Immodium before you go to bed. I don't eat after 7:00 at night either. You will learn in time how long it takes your body to pass food through and that is a huge help! It may not be the same for everyone either. Accidents will happen, so don't get discouraged. Just remember your pouch is growing right now and it will learn to hold more and you will learn to hold it better.
Emotionally, I have good days and bad. A normal day for me consists of using the restroom 6 to 8 times. However, on the days that I go more then that, I get frustrated. So, when you have a really good day, enjoy it and remember that there will be another!!!
For more information about Familial Adenomatous Polyposis: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
I am doing so much better since my last surgery. Take down/ileostomy reversal surgery was July 9th, 7 1/2 weeks ago. The first couple of weeks after the surgery were tough. I was in the bathroom around 15 - 18 times a day. I was taking close to 8 hot baths a day. I was using creams and Tuck's pads for the "butt burn." I had major, major cramping from everything trying to wake up and start moving again. I will also add, for those of you approaching this surgery, I did have problems holding it at night. So, I would wear a pad to bed. I won't lie, that is the most...I'm looking for the word, depressing, irritating, sad thing. I really had a hard time dealing with that.
Week 3 was a good week and I needed it! I started taking 2 Lomotil at night and that got me through the night. My cramping stopped finally. I still have gas pains, but the bad cramping wasn't there.
That brings me to my next subject, food. For the first 4 weeks, I introduced foods slowly and I think that really helped me. I didn't eat anything too bulky. I had white rice, mashed potatoes, yogurt, soup and oatmeal. That is pretty much what my diet was. Then, slowly, I started adding other foods. At 7 weeks, I still am not eating very much red meat. I eat a lot of chicken and tuna. I just started adding fruits and vegetables, but I make sure I'm going to be home when I eat them. Fruits and veggies will make you go to the restroom more. I should also add, that any time I add a new food, I make sure I'm going to be home. Also, if you try a food once and it doesn't work, try it again at a later time. It could just be the day.
I'm 100% lactose intolerant. I have switched to soy, lactose free and rice milk. Believe it or not, I actually enjoy dairy better that way. I wish I would of done it years ago! You can find just about anything at Whole Foods. The kids are even eating and drinking those things because they like it.
About week 5, my hair started falling out in handfuls! It scared me because it was so much. I did find out that was because of the stress of the surgeries on my body, the fact that I'm anemic and the "lack of" my diet and the foods I'm eating right now. I started a daily vitamin (double the dose for now) and that has improved how much hair loss I have and has increased how well I feel. I could see a huge difference 3 days after I started the vitamin. My doctor said she would give me all these different meds and pills for the issues I was having, but I really want to do it naturally because I will face these issues the rest of my life. Potassium is something else that I always have problems with. Not easy for me because I don't like bananas, but I did find out that grapes are a great source of potassium as well. So, I'm working on that.
Something else that can be a pain is carbonation. Carbonation causes gas and for several months, you won't be able to pass gas unless you are on the toilet. Some people will always have to sit on the toilet to pass gas because they can't tell the difference. The gas can also be painful, so I watch my intake of anything carbonated. Gum has the same effect, but not as bad. So, I usually just suck on hard candy. Using a straw can cause the same problem.
I have found that marshmallows and eating ice help thicken things up. Strange, huh? It works though. Tucks pads and hot baths are the best things for your sore bottom and until your control is better at night, try the Lomotil or Immodium before you go to bed. I don't eat after 7:00 at night either. You will learn in time how long it takes your body to pass food through and that is a huge help! It may not be the same for everyone either. Accidents will happen, so don't get discouraged. Just remember your pouch is growing right now and it will learn to hold more and you will learn to hold it better.
Emotionally, I have good days and bad. A normal day for me consists of using the restroom 6 to 8 times. However, on the days that I go more then that, I get frustrated. So, when you have a really good day, enjoy it and remember that there will be another!!!
For more information about Familial Adenomatous Polyposis: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
New Beginnings
"All I really need to know I learned in Kindergarten."
I can't believe that all my babies are now in school. They grow up way too fast! How many times have we said that, but don't they grow so fast? Diapers and bottles and baby food....they all seem like yesterday.
If you would of asked me a year ago, I would of said that I really wanted one more. Bill would of agreed. Then, July 4th I guess it was, I remember suddenly realizing how nice and special this phase of life is. My children are independent and are so much fun to have conversations with. I can leave home without making sure that I have everything I need in the diaper bag. I can actually carry a fancy purse, if I wish. No more lugging the stroller around or bulky car seats. It's amazing how we suddenly realize that we are enjoying this new place that we find ourselves at. Not that I don't have baby fever moments, but that's just it, they've become moments and not days or months! We are having so much fun.
I was so nervous the first week that school started. In all honesty, I wasn't worried about how Emma would do, I knew she would be fine. I was worried about me! I think Bill was too because he must of called me a dozen times the first day of school. I've only been without Emma a handful of times since she was born, so it felt like I lost a limb....or two.
Her first day was wonderful! She had so much fun. I don't even think she was really ready to come home when it was time. She has a very sweet teacher, so we are happy about that. Believe it or not, I survived the first day too. The first week seemed to go by so slow. The days seemed to last forever. This week has been a different story though. You would not believe how much I get done! Even on the days when I have the day care kids, I can get things knocked out. I've even found time to read and decorate. Amazing, huh?
We have been super busy this school year though. All the kids are doing different sports and activities, so I feel like I live in the car, but we are loving it! Wouldn't trade this time for anything.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
I can't believe that all my babies are now in school. They grow up way too fast! How many times have we said that, but don't they grow so fast? Diapers and bottles and baby food....they all seem like yesterday.
If you would of asked me a year ago, I would of said that I really wanted one more. Bill would of agreed. Then, July 4th I guess it was, I remember suddenly realizing how nice and special this phase of life is. My children are independent and are so much fun to have conversations with. I can leave home without making sure that I have everything I need in the diaper bag. I can actually carry a fancy purse, if I wish. No more lugging the stroller around or bulky car seats. It's amazing how we suddenly realize that we are enjoying this new place that we find ourselves at. Not that I don't have baby fever moments, but that's just it, they've become moments and not days or months! We are having so much fun.
I was so nervous the first week that school started. In all honesty, I wasn't worried about how Emma would do, I knew she would be fine. I was worried about me! I think Bill was too because he must of called me a dozen times the first day of school. I've only been without Emma a handful of times since she was born, so it felt like I lost a limb....or two.
Her first day was wonderful! She had so much fun. I don't even think she was really ready to come home when it was time. She has a very sweet teacher, so we are happy about that. Believe it or not, I survived the first day too. The first week seemed to go by so slow. The days seemed to last forever. This week has been a different story though. You would not believe how much I get done! Even on the days when I have the day care kids, I can get things knocked out. I've even found time to read and decorate. Amazing, huh?
We have been super busy this school year though. All the kids are doing different sports and activities, so I feel like I live in the car, but we are loving it! Wouldn't trade this time for anything.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Wednesday, July 8, 2009
Daring to Win
"Yesterday I dared to struggle, today I dare to win."
Tomorrow is Stage 2, ileostomy reversal. I can not believe I made it through these last 12 weeks. We are stronger than we give ourselves credit for. When I think of strong women, I think of women that have a sword in hand and go boldly against the army. I've decided that is not what strength is. Strength is not being afraid to be vulnerable and let it all hang out there. It is asking for help when you know you need it.
As you can see, I've added a picture of my little friend. Before this last surgery, my vanity made me despise that piece of small intestine hanging out. Oh how it has helped me through the healing part. I'm so glad I had it the last 12 weeks while I was healing internally. Just like life, right when you are getting comfortable with your less than favorable circumstances, things get better. I just started feeling alright about having the stoma and bag and now it is time to get rid of it.
Back to the picture though. I wanted to remember it. I never want to forget where I came from along the way. I also wanted to show those of you that will soon have the surgery. I know this part was one of the things I wanted to see because I was so concerned.
I also added a picture of my box of goodies that my little friend needs. You don't leave home without them and you keep a couple of weeks worth of supplies on hand. That box has been my life for 3 months. I guess I should get started on my liquid diet and magnesium citrate. Thank goodness it is going in my bag this time and I will never have to do it again! What a relief.
Thank you from the bottom of my heart for you support, calls, visits, gifts and prayers. I'm a very lucky girl.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Monday, June 29, 2009
Once
"Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are."We only live life once. Think about that for a second. Think about only being able to hug one of your loved ones just once. Knowing that you would never be able to hug them again, would you give them a side hug or would you wrap your arms tenderly around them and squeeze them as passionately as you could? I know I would hug them as hard and as long as my body would allow me to. I would treasure that precious moment that I was given for eternity. Sadly, not all of us live our lives that way. We are given one life. One life to live to fullest. One life to love those in our lives and one life to love ourselves.
I wish that we as human beings did not have to suffer in order to learn such things, but most of us do. I definitely did. This is where my recent trials have brought me. Sometimes life has to wake us up from our sleeping state of being and plunge us through the dark into the light, which is life...our life. Pain reminds us what it feels like to be pain free. Sadness reminds us what it feels like to be happy. Feeling alone reminds us what it feels like to be surrounded by the people that love us. It not only reminds us, it changes us. The blue sky looks clearer, the green grass smells fresher. We wake up.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Monday, May 4, 2009
Pain is temporary
"Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever."
It has been 14 days since my surgery. Today was the first day that I could tolerate or had the energy to sit here long enough to type this. I won't lie to you about where I've been, where I am or where I'm headed.
I had no idea what I was truly getting myself into with this surgery. You can do tons of research, talk to people that have been through it and get as knowledgeable as you think you can, but it isn't like going through it. I was so optimistic and I was so sure that I was strong enough to beat this, but I found out real quick how fast your walls can come crumbling down. I don't write this to discourage anyone that may be facing this surgery, but I write this as an honest woman that is suffering.
First, let me tell you where I've been. My surgery was almost 6 hours long. I can't tell you how good I felt going into it knowing that I had an army of people in the waiting room. I had no idea how much I was loved or how important I was to those around me. Amazing how we walk so blindly through life sometimes. We are much harder on ourselves than anyone else is on us. I take that with me. I don't remember a whole lot about the first couple of days. I remember few faces or conversations. In fact, I don't even remember walking the second day because I was so incredibly drugged. On the third day, I start to remember things. Morphine is easily addictive, especially when you add it with other pain medications. You may not crave it after only a few days, but your body does. Someone said to me in the hospital that I looked like a Heroine addict while I was trying to come off of it and my response was, "I feel like one." My body would shake and ache like I had the flu, I would feel sick to my stomach, I would be incredibly cold but pouring with sweat. My pain wasn't tolerable at that time and I chose a bad time to stop the Morphine, but I'm glad I did it and switched to something else. That was my first stepping stone. Even though today, it is still hard to count my blessings. Because I had such a horrible time with the Morphine, I tried not to take anything the 5th and 6th day at the hospital and then day 1 and 2 at home. By day 2 at home, I was in MUCH pain. Not only that, but I had a new phobia....eating. I couldn't take the smallest bite without fear that it would get stuck somewhere between my throat and my bag. There is a chance that you can get a blockage from certain foods when you are wearing the bag, but I wasn't educated well in the eating department and I didn't realize that the chances of blockages were small. I went almost 2 days without eating and then my body gave out. Unfortunately, it decided to give out in the 25 minutes that I was actually alone with Emma. Bless her little heart. She was such a big girl. I'm very proud of her. Not only was my pain sending me over the edge, I wasn't sleeping due to it and my hormones were out of control. I had thoughts like I never have before. Some of those are still too hard to deal with and some I'm still struggling with. I spent 4 more days in the hospital. It was definitely needed. I needed to get my pain under control, I needed to be reassured that I was okay, I needed education on food and I needed some sleep.
My first three days at home weren't much easier. I am going to be very graphic during the next couple of paragraphs, so please don't read on if you don't have the stomach. My first day at home, my bag exploded on me while I was sitting on the couch. Nothing like having liquid poop pour all over you. Bill and I had never put a bag on ourselves because I've had hospital nurses and home health care nurses to do that. I still have a very hard time looking at my stoma and it makes me weak in the knees when I think about it. So, Bill and I tried our hardest to change it...3 or 4 times. Then, we called in the home health care nurse and she tried several times to get a bag to stick, but my skin had a reaction to the adhesive on the bag and my skin was becoming raw with blisters...therefore, the bag wouldn't hold. Your skin has to be completely dry in order for it to hold properly. We ended up at the ER to have a stoma nurse help me get one on because you just can't go without one. That isn't really an option. I was in a lot of pain at that point and very tired. We were in the ER until 4am, but it was worth it, because she was able to get one to stick. Later that next day, I broke out in a horrible rash. I still have it and I have no idea from what. I'm hoping my nurse can tell me today. It didn't start out itching, but now it does. I'm pretty sure it is from the adhesive as well. We'll see...
The days are hard right now. I can only eat 5 to 10 bites every 2 hours - while I'm healing and my digestive tract is learning how to handle food again. I have to empty my bag every hour to 2 hours. If it is too thin, I have to take medication so that it doesn't dehydrate me. I don't have an appetite, but I have to eat. Nothing smells good, tastes good or feels good. Whenever I'm not eating, I feel sick due to my stomach being empty and then I feel sick after I eat because it is full. I have a bag, but I still have to go to the restroom to relieve all the mucous that my small intestine is creating. That is like having a bowel movement. I don't always have control of that and I lose it all over myself. Control is getting better though, except when I sleep. I hear that will be an issue the rest of my life though, losing control while I'm relaxed and sleeping that is.
I can't tell you how undesirable I feel, how gross. I know in my head that I don't smell, but I'm still terrified that I have a horrible odor. I started to push everyone away and then everyone called me out on it. I don't know how to ask for help with this. I feel very alone and very helpless still. Each day gets a little better and I know that it won't always be this way, but each day presents a new challenge right now. I know that you all try to be helpful and tell me that it will get better, things will change, it won't always be this way.....but my body, mind and heart ache right now. I mourn the life that I had before this surgery. I took so many things for granted.
My goal - to make it through the next 10 weeks and get this bag off!!
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
It has been 14 days since my surgery. Today was the first day that I could tolerate or had the energy to sit here long enough to type this. I won't lie to you about where I've been, where I am or where I'm headed.
I had no idea what I was truly getting myself into with this surgery. You can do tons of research, talk to people that have been through it and get as knowledgeable as you think you can, but it isn't like going through it. I was so optimistic and I was so sure that I was strong enough to beat this, but I found out real quick how fast your walls can come crumbling down. I don't write this to discourage anyone that may be facing this surgery, but I write this as an honest woman that is suffering.
First, let me tell you where I've been. My surgery was almost 6 hours long. I can't tell you how good I felt going into it knowing that I had an army of people in the waiting room. I had no idea how much I was loved or how important I was to those around me. Amazing how we walk so blindly through life sometimes. We are much harder on ourselves than anyone else is on us. I take that with me. I don't remember a whole lot about the first couple of days. I remember few faces or conversations. In fact, I don't even remember walking the second day because I was so incredibly drugged. On the third day, I start to remember things. Morphine is easily addictive, especially when you add it with other pain medications. You may not crave it after only a few days, but your body does. Someone said to me in the hospital that I looked like a Heroine addict while I was trying to come off of it and my response was, "I feel like one." My body would shake and ache like I had the flu, I would feel sick to my stomach, I would be incredibly cold but pouring with sweat. My pain wasn't tolerable at that time and I chose a bad time to stop the Morphine, but I'm glad I did it and switched to something else. That was my first stepping stone. Even though today, it is still hard to count my blessings. Because I had such a horrible time with the Morphine, I tried not to take anything the 5th and 6th day at the hospital and then day 1 and 2 at home. By day 2 at home, I was in MUCH pain. Not only that, but I had a new phobia....eating. I couldn't take the smallest bite without fear that it would get stuck somewhere between my throat and my bag. There is a chance that you can get a blockage from certain foods when you are wearing the bag, but I wasn't educated well in the eating department and I didn't realize that the chances of blockages were small. I went almost 2 days without eating and then my body gave out. Unfortunately, it decided to give out in the 25 minutes that I was actually alone with Emma. Bless her little heart. She was such a big girl. I'm very proud of her. Not only was my pain sending me over the edge, I wasn't sleeping due to it and my hormones were out of control. I had thoughts like I never have before. Some of those are still too hard to deal with and some I'm still struggling with. I spent 4 more days in the hospital. It was definitely needed. I needed to get my pain under control, I needed to be reassured that I was okay, I needed education on food and I needed some sleep.
My first three days at home weren't much easier. I am going to be very graphic during the next couple of paragraphs, so please don't read on if you don't have the stomach. My first day at home, my bag exploded on me while I was sitting on the couch. Nothing like having liquid poop pour all over you. Bill and I had never put a bag on ourselves because I've had hospital nurses and home health care nurses to do that. I still have a very hard time looking at my stoma and it makes me weak in the knees when I think about it. So, Bill and I tried our hardest to change it...3 or 4 times. Then, we called in the home health care nurse and she tried several times to get a bag to stick, but my skin had a reaction to the adhesive on the bag and my skin was becoming raw with blisters...therefore, the bag wouldn't hold. Your skin has to be completely dry in order for it to hold properly. We ended up at the ER to have a stoma nurse help me get one on because you just can't go without one. That isn't really an option. I was in a lot of pain at that point and very tired. We were in the ER until 4am, but it was worth it, because she was able to get one to stick. Later that next day, I broke out in a horrible rash. I still have it and I have no idea from what. I'm hoping my nurse can tell me today. It didn't start out itching, but now it does. I'm pretty sure it is from the adhesive as well. We'll see...
The days are hard right now. I can only eat 5 to 10 bites every 2 hours - while I'm healing and my digestive tract is learning how to handle food again. I have to empty my bag every hour to 2 hours. If it is too thin, I have to take medication so that it doesn't dehydrate me. I don't have an appetite, but I have to eat. Nothing smells good, tastes good or feels good. Whenever I'm not eating, I feel sick due to my stomach being empty and then I feel sick after I eat because it is full. I have a bag, but I still have to go to the restroom to relieve all the mucous that my small intestine is creating. That is like having a bowel movement. I don't always have control of that and I lose it all over myself. Control is getting better though, except when I sleep. I hear that will be an issue the rest of my life though, losing control while I'm relaxed and sleeping that is.
I can't tell you how undesirable I feel, how gross. I know in my head that I don't smell, but I'm still terrified that I have a horrible odor. I started to push everyone away and then everyone called me out on it. I don't know how to ask for help with this. I feel very alone and very helpless still. Each day gets a little better and I know that it won't always be this way, but each day presents a new challenge right now. I know that you all try to be helpful and tell me that it will get better, things will change, it won't always be this way.....but my body, mind and heart ache right now. I mourn the life that I had before this surgery. I took so many things for granted.
My goal - to make it through the next 10 weeks and get this bag off!!
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Thursday, April 16, 2009
Goodbye For Now
"It's not what you look at that matters, it's what you see."
I can not believe how fast these 4 weeks have flown by! It has gone by like the speed of light. I feel like I have not accomplished near what I needed to, but there are only so many hours in the day. I know the question that everyone has been asking is, "How are you doing with the surgery right around the corner?" Well, I don't really know. All I can tell you is that I'm ready. My bag is packed and ready to go. I don't even think Bill is going to have to tie me down and take me, like I thought he would. You shouldn't hold your breath on that one though, Tuesday morning at 4am may come with a different emotion.
This will probably be my last post for a few weeks, so I wanted to leave you with a few things to think about. Actually, do yourself a favor and do more than think about them, give them a try.
Today, hug your spouse and your children or loved ones....tight. Tell them 100 times how wonderful they are and what they mean to you. Tomorrow, tell them a 101 times. I have two boys and one dramatic little girl and I know some days it seems hard to do. I have a teenager that challenges me at every turn, an 8 year old that is demanding my attention at this phase in his life and he will try just about anything to get it. I have a daughter that is jealous of the other two and the dog when it comes to my time. Add that all into a day and you might think that you don't have the time or energy to get it all in. We take for granted how blessed we are to have healthy, happy kids, whether they have a smart mouth on them or not. Sometimes we miss those little moments because the house is dirty and the dishes aren't done. We assume that they must know how we feel about them because we are their parents. Also, I know that sometimes I assume because they are getting older, they don't need me as much.
The big things in life have now become the small things in my life. None of us knows at what moment we won't have another because tomorrow isn't promised to us, only today. If you struggle with the big things, ask God for a change of heart and I have no doubt that he will answer your prayer. Like the quote above says, it's a matter of how you look at it. Let your heart feel different today and let your eyes focus on the meadow instead of the mountain. When the kids won't listen or your boss is being tough, when your paycheck isn't stretching far enough and your car needs new tires.....remember that taking those situations away is only relief for the moment, but looking at your situation with a different set of eyes is a cure.
"Humility is perfect quietness of heart, It is to expect nothing, to wonder at nothing that is done to me, to feel nothing done against me. It is to be at rest when nobody praises me, and when I am blamed or despised. It is to have a blessed home in the Lord, where I can go in and shut the door, and kneel to my Father in secret, and am at peace as in a deep sea of calmness, when all around and above is trouble."
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Tuesday, April 7, 2009
In the Beginning
"A journey may be long or short, but it must start at the very spot one finds oneself."
I thought my journey started in December when we found out about this disease, was I ever wrong! I think for the past 4 months I have been packing my bags and getting ready for the trip. I'm sure many of you would agree that we think the journey begins at the very moment that our circumstances did, but I don't see it that way now.
I woke up this morning and there was light. Just so you all know, my light has always been pink. Hence, the name of the blog. Since I was a little girl and we would sing, "This Little Light of Mine," I imagined that my little light was bright pink. This is going to be emotional to explain because trying to describe how I feel today isn't easy. There isn't one word that is grand enough to express my emotions. It has been so dark and cloudy lately, I could not see a grain sized speck of light. I think it was because I know the hard part is coming and I haven't accepted my circumstances yet. Therefore, there is no relief to be found. I've just had a big ball of anticipation growing inside of me.
I have to say again, that I would not be in the place that I am today if I didn't have the support and kind words of friends and family. I've said before that I deal with low self image on a regular basis. Isn't that one of the hardest struggles to defeat? I have let the opinions of only a few people dictate who I thought I was over the years. As I began to accept those false thoughts, I started to accept negative thoughts about life. I began to think that I deserved certain things that happened to me and instead of fighting, I backed down. You never want to accept defeat. Today when I saw the light coming in through the clouds, I started to see myself again. It's a cloudy day and there is a chance of rain, but the rain smells so good because I can breathe again. I decided to put negative opinions that other's have aside because that is not who I am. I have let those negative influences tell me that I'm not good enough, kind enough, generous enough, smart enough or loved enough. I shed that layer of skin and put on a whole new one. It is so easy to loose sight of the bigger picture. Life can be so humbling and circumstances remind us of who we are or who we want to be. We can't sit around and wait to become the person that we are destined to be, we have to jump in and get started. My journey began today as I traded in the scared little girl card for a strong, faithful woman deck! Acceptance is GOOOOD! It is comfortable and fits well, like a great pair jeans.
There is a song on my playlist right now that is a powerful and moving song. If you haven't heard it before, I'm posting the link so you can listen to it. I'll also give you the words. This song says everything about my new beginning and maybe yours...
http://www.youtube.com/watch?v=Aley9_d8vrE
Today I found myself
After searching all these years
And the man that I saw, he wasn't at all who I thought he'd be
I was lost when you found me here
And I was broken beyond repair
Then you came along and you sang your song over me
It feels like I'm born again
It feels like I'm living
For the very first time
For the very first time
In my life
Make a promise to me now
Reassure my heart somehow
That the love that I feel is so much more real than anything
I've a feeling in my soul
And I pray that I'm not wrong
That the life I have now, it is only the beginning
It feels like I'm born again
It feels like I'm living
For the very first time
For the very first time
It feels like I'm breathing
It feels like I'm moving
For the very first time
For the very first time
I wasn't looking for something that was more
Than what I had yesterday
Then you came to me and you gave to me
Life and a love that I've never known
That I've never felt before
It feels like I'm born again
It feels like I'm living
For the very first time
I'm living for the first time
It feels like I'm breathing
It feels like I'm moving
For the very first time
I'm living for the first time
In my life
I thought my journey started in December when we found out about this disease, was I ever wrong! I think for the past 4 months I have been packing my bags and getting ready for the trip. I'm sure many of you would agree that we think the journey begins at the very moment that our circumstances did, but I don't see it that way now.
I woke up this morning and there was light. Just so you all know, my light has always been pink. Hence, the name of the blog. Since I was a little girl and we would sing, "This Little Light of Mine," I imagined that my little light was bright pink. This is going to be emotional to explain because trying to describe how I feel today isn't easy. There isn't one word that is grand enough to express my emotions. It has been so dark and cloudy lately, I could not see a grain sized speck of light. I think it was because I know the hard part is coming and I haven't accepted my circumstances yet. Therefore, there is no relief to be found. I've just had a big ball of anticipation growing inside of me.
I have to say again, that I would not be in the place that I am today if I didn't have the support and kind words of friends and family. I've said before that I deal with low self image on a regular basis. Isn't that one of the hardest struggles to defeat? I have let the opinions of only a few people dictate who I thought I was over the years. As I began to accept those false thoughts, I started to accept negative thoughts about life. I began to think that I deserved certain things that happened to me and instead of fighting, I backed down. You never want to accept defeat. Today when I saw the light coming in through the clouds, I started to see myself again. It's a cloudy day and there is a chance of rain, but the rain smells so good because I can breathe again. I decided to put negative opinions that other's have aside because that is not who I am. I have let those negative influences tell me that I'm not good enough, kind enough, generous enough, smart enough or loved enough. I shed that layer of skin and put on a whole new one. It is so easy to loose sight of the bigger picture. Life can be so humbling and circumstances remind us of who we are or who we want to be. We can't sit around and wait to become the person that we are destined to be, we have to jump in and get started. My journey began today as I traded in the scared little girl card for a strong, faithful woman deck! Acceptance is GOOOOD! It is comfortable and fits well, like a great pair jeans.
There is a song on my playlist right now that is a powerful and moving song. If you haven't heard it before, I'm posting the link so you can listen to it. I'll also give you the words. This song says everything about my new beginning and maybe yours...
http://www.youtube.com/watch?v=Aley9_d8vrE
Today I found myself
After searching all these years
And the man that I saw, he wasn't at all who I thought he'd be
I was lost when you found me here
And I was broken beyond repair
Then you came along and you sang your song over me
It feels like I'm born again
It feels like I'm living
For the very first time
For the very first time
In my life
Make a promise to me now
Reassure my heart somehow
That the love that I feel is so much more real than anything
I've a feeling in my soul
And I pray that I'm not wrong
That the life I have now, it is only the beginning
It feels like I'm born again
It feels like I'm living
For the very first time
For the very first time
It feels like I'm breathing
It feels like I'm moving
For the very first time
For the very first time
I wasn't looking for something that was more
Than what I had yesterday
Then you came to me and you gave to me
Life and a love that I've never known
That I've never felt before
It feels like I'm born again
It feels like I'm living
For the very first time
I'm living for the first time
It feels like I'm breathing
It feels like I'm moving
For the very first time
I'm living for the first time
In my life
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Wednesday, April 1, 2009
Thank Goodness for Support
"Courage, sacrifice, determination, commitment, toughness, heart, talent, guts. That's what little girls are made of; the heck with sugar and spice."
I found that quote the other day. While it is cute, it also meant something else to me. It reminded me that we are none of those things alone. I'm the worst at not asking for help, which is why my friends and family have been so wonderful by not making me ask.
I know this saying is old, but you find out who is really there for you in times like this. You are able to see the side of people that you normally wouldn't see. Every day has taught me something new about someone else, not just myself.
I prayed that God would meet my needs during this time...and he has. He gave me peace within myself and he also met my needs by surrounding me with people that could help before I even knew what I needed.
There are a couple of people that I talk to on a daily basis right now that give me encouragement and support through their words. There are the few that I call and cry to, when I need to. There is someone that I call when I just don't want to talk about it and they know that I need to sit and talk about Grey's Anatomy instead...because I'm so elated that Meredith and McDreamy are getting married and will hopefully have little McMer-Der's - yes, I think the writers on the show should use that one. There are people that have helped me with the things I need for the hospital, offered help at the hospital, after I'm home, help with my kids, with meals.....there are little acts of kindness that I'm sure people had no idea would mean so much, but it did. I didn't want anyone to feel like they had to be there during my surgery...it is going to be a long day, but everyone that has decided to be there, it has put me more at ease. You all know who you are and there isn't a big enough thank you in the world that could express how thankful I am for all of these things. So many people would think that it has to suck to me right now, but I think it would suck not to be me.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Saturday, March 28, 2009
A Good Cry
"There is nothing quite so satisfying, and so healing, as a good cry."
Isn't that the truth! I've only cried a couple of times since we found out everything. They were quick cries and not significant. I would quickly stop myself because I didn't want anyone to see me...especially not my husband or kids. I had to be STRONG! Do we really even understand the true meaning of that word? I think I was being more strong willed...and not strong. I know that Ashton is watching me as I move through this and we don't know yet if Sage and Emma have the same disease and will need the same treatment. I wanted to be strong for them, but I forgot that they needed to see me be real. As I said before, I moved through the days for a while. I, in my mind, was still healthy and invincible. It wasn't until my appointment with the surgeon that I began to realize that this was all reality and it was happening......even when I was trying so hard to ignore it. Even as I sit here and type, I can't get the thought out of my head that if anyone reads this, all they are going to see is me whining and feeling sorry for myself....or needing attention.
As we were driving home from the surgeon's office, I was reading the thick packet that Dr. Mac gave me about my surgery, recovery, 2nd surgery, hospital stay, healing, ileostomy bag and food. Basically, all the information I needed to be prepared. I think it was page 10 that was finally too much! I threw the papers in the air, got mad and then cried like I have never cried. My poor husband didn't know what to do with me and you could see it in his face and you could hear it in his voice. I think he tried to reason with me any way he could. I WAS NOT going to do this....nope! "WHY ME GOD?" That cry hurt! I couldn't breath, I was gasping for air through the tears. I could feel myself getting louder and louder and my stomach was killing me. After I came home, I went to our bedroom to try to calm down and get myself together.....because it really was all about keeping myself together, right? Each one of my kids and my husband came in one at a time to lay with me. Another moment that I get to take with me in my memories. That was my first step to healing. They say that you have to take it day by day, but I have to take it thought by thought. It's hard to keep those negative feelings away. I swear I'm in prayer at least 90 percent of the day because of what I'm feeling or what I'm thinking. It was that great big cry that helped me to release my anger, sorrow, fear and confusion and help me accept my circumstances. Sometimes a good cry can be so cleansing and healing.
Information about Familial Adenomatous Polyposis at: http://hopkins-gi.nts.jhu.edu/multimedia/database/intro_84_FAP-Book.pdf
Isn't that the truth! I've only cried a couple of times since we found out everything. They were quick cries and not significant. I would quickly stop myself because I didn't want anyone to see me...especially not my husband or kids. I had to be STRONG! Do we really even understand the true meaning of that word? I think I was being more strong willed...and not strong. I know that Ashton is watching me as I move through this and we don't know yet if Sage and Emma have the same disease and will need the same treatment. I wanted to be strong for them, but I forgot that they needed to see me be real. As I said before, I moved through the days for a while. I, in my mind, was still healthy and invincible. It wasn't until my appointment with the surgeon that I began to realize that this was all reality and it was happening......even when I was trying so hard to ignore it. Even as I sit here and type, I can't get the thought out of my head that if anyone reads this, all they are going to see is me whining and feeling sorry for myself....or needing attention.
As we were driving home from the surgeon's office, I was reading the thick packet that Dr. Mac gave me about my surgery, recovery, 2nd surgery, hospital stay, healing, ileostomy bag and food. Basically, all the information I needed to be prepared. I think it was page 10 that was finally too much! I threw the papers in the air, got mad and then cried like I have never cried. My poor husband didn't know what to do with me and you could see it in his face and you could hear it in his voice. I think he tried to reason with me any way he could. I WAS NOT going to do this....nope! "WHY ME GOD?" That cry hurt! I couldn't breath, I was gasping for air through the tears. I could feel myself getting louder and louder and my stomach was killing me. After I came home, I went to our bedroom to try to calm down and get myself together.....because it really was all about keeping myself together, right? Each one of my kids and my husband came in one at a time to lay with me. Another moment that I get to take with me in my memories. That was my first step to healing. They say that you have to take it day by day, but I have to take it thought by thought. It's hard to keep those negative feelings away. I swear I'm in prayer at least 90 percent of the day because of what I'm feeling or what I'm thinking. It was that great big cry that helped me to release my anger, sorrow, fear and confusion and help me accept my circumstances. Sometimes a good cry can be so cleansing and healing.
Information about Familial Adenomatous Polyposis at: http://hopkins-gi.nts.jhu.edu/multimedia/database/intro_84_FAP-Book.pdf
Wednesday, March 25, 2009
I Love Cupcakes
"We must adequately face our grief, but we must also accept our new set of circumstances and begin to move on. How do we move through grief and toward acceptance? Most of us have never taken a course in 'How to Handle Disappointment.' We simply stumble through the emotions and pain, hoping to find joy once again."
Let me tell you the single hardest part of where I am at right now. I don't have any pain. They want me to have this drastic surgery and I feel fine.....completely fine. I like to think that if I was in pain, it would be easier to accept. I guess I will never know.
I went to see the surgeon last week. Dr. Mac is a funny and encouraging guy. I'm happy to have him as my surgeon. I'm sure Bill would agree. I dreaded that appointment for days before I went. I knew he was going to confirm what I already knew and honestly, I didn't want to hear it again. I was extremely concerned that he was going to tell me that I either had to wear a bag on the outside permanently or even temporarily. Either way, I was not having it! I went in with that attitude too.
Dr. Mac explained the entire surgery to Bill and I, answered all our questions and then told me that I would benefit from wearing the bag for 12 weeks while my J-Pouch (colon made from my small intestines) and my new rectum (made from the same) were able to heal where they were sewing it to my anus. I also want to tell you how happy I am that I get to keep my anus. Some of us are not so lucky. I've never been a farting girl, but it is nice to know that I could if I wanted to!
I agreed to the bag for 12 weeks. He's very convincing. To this day, I am still disgusted with the fact that I am going to have my intestine stitched to a hole in my stomach so that my poop will fall into a bag on the outside of my body. Being able to see and touch my small intestine on a daily basis is not my idea of excitement! I know there are worse things in life, but I don't think you can truly understand how gross that is until you are faced with it yourself.
It has brought up some funny stories though. One of my daycare parents came to pick up his son one day. He also happens to be our landlord. Anyhow, I was telling him that I was irritated by this woman that walks her dog every morning and allows him to poop on my grass. There was still unclaimed poop at the edge of my lawn. His solution was that I walk down to her house after I have my bag on and squirt some poop on her lawn. That image and the fact that I could do it....gag!! HORRIBLE! I got a good laugh out of it though. That was the first comment that had been made that didn't include me crying during or after.
My surgery is set for Tuesday, April 21, 2009 at 7:30. I gave all of that information because I am counting down the days until it comes. It is not an eager countdown, but a count of how many days I have until life changes for a while. I've told several people that I may gain 20 pounds before I go in for surgery...and it may very well be from cupcakes! I plan to eat anything and everything now!
Let me tell you the single hardest part of where I am at right now. I don't have any pain. They want me to have this drastic surgery and I feel fine.....completely fine. I like to think that if I was in pain, it would be easier to accept. I guess I will never know.
I went to see the surgeon last week. Dr. Mac is a funny and encouraging guy. I'm happy to have him as my surgeon. I'm sure Bill would agree. I dreaded that appointment for days before I went. I knew he was going to confirm what I already knew and honestly, I didn't want to hear it again. I was extremely concerned that he was going to tell me that I either had to wear a bag on the outside permanently or even temporarily. Either way, I was not having it! I went in with that attitude too.
Dr. Mac explained the entire surgery to Bill and I, answered all our questions and then told me that I would benefit from wearing the bag for 12 weeks while my J-Pouch (colon made from my small intestines) and my new rectum (made from the same) were able to heal where they were sewing it to my anus. I also want to tell you how happy I am that I get to keep my anus. Some of us are not so lucky. I've never been a farting girl, but it is nice to know that I could if I wanted to!
I agreed to the bag for 12 weeks. He's very convincing. To this day, I am still disgusted with the fact that I am going to have my intestine stitched to a hole in my stomach so that my poop will fall into a bag on the outside of my body. Being able to see and touch my small intestine on a daily basis is not my idea of excitement! I know there are worse things in life, but I don't think you can truly understand how gross that is until you are faced with it yourself.
It has brought up some funny stories though. One of my daycare parents came to pick up his son one day. He also happens to be our landlord. Anyhow, I was telling him that I was irritated by this woman that walks her dog every morning and allows him to poop on my grass. There was still unclaimed poop at the edge of my lawn. His solution was that I walk down to her house after I have my bag on and squirt some poop on her lawn. That image and the fact that I could do it....gag!! HORRIBLE! I got a good laugh out of it though. That was the first comment that had been made that didn't include me crying during or after.
My surgery is set for Tuesday, April 21, 2009 at 7:30. I gave all of that information because I am counting down the days until it comes. It is not an eager countdown, but a count of how many days I have until life changes for a while. I've told several people that I may gain 20 pounds before I go in for surgery...and it may very well be from cupcakes! I plan to eat anything and everything now!
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
This is not what I signed up for!!
"None of us knows what the next change is going to be, what unexpected opportunity is just around the corner, waiting a few months or a few years to change all the tenor of our lives."
This was the first chapter and the first quote in my new book. Do you know that I read that quote 20 times or more? Over and over and over again. The part that I kept reading was simply this, "None of us knows." None of us. Not just that "I" don't know...none of us knows. The next few days that I read this book, I analyzed so many parts of my life. I wish I could tell you that it was romantic, but it wasn't. Talk about a big, fat pity party! I was done feeling mad, now I was just sad, lonely and probably still a little bitter. Let me tell you people, sad, lonely and bitter are NEVER good company to keep. However, I'm learning now that I am grieving.....deeply. I thought about every harsh word that I said to my children or my husband....parents, friends....extended family. I thought about why I did such stupid things. I was quite disgusted with myself.
Even after I came back into the light in the past 2 years - God's light that is, it is still hard to look at myself. Ask any person in my household, I get dressed in the dark...with only the closet light on. I'm still trying to see the growing person that others around me see. I had to decide at that moment to forgive myself as I had been forgiven. I couldn't carry all that BLAH with me on this unexpected journey that I was getting ready to take. What most of us don't realize either, is that we are being prepared for change before we even see it coming. The one thing that I kept telling myself, the only blessing I could see at the time, was that this was perfect timing because Ashton and I were both treatable. We have time to treat it and monitor and manage the other areas that this disease affects. I, by no means, signed up for this but IT IS my life. I had to decide whether I was going to fight or surrender. I didn't know how to do that. I soon learned that fight and surrender came from the same place. I had to surrender my circumstances to God, so that he could help me fight.
I couldn't pray for a couple of weeks.....remember the sad, lonely and bitter company that I was keeping? When we went to church that Sunday, I almost cried walking in. Just because you are in church, doesn't mean that you always feel God there. That Sunday was emotional. I felt like every person that looked at me knew that I was diseased in some way. I had to move past it and jump in. The first thing that our pastor came up and said was this, "The need to pray is greatly on my heart this morning. I don't usually interrupt worship, but I feel the need today." He said this beautiful prayer that was MY prayer. I'm sure I wasn't the only one that needed it that morning, but it spoke to my spirit. All his prayer said is, "I don't have the words, but you know my heart." I couldn't pray because I didn't know what I needed or maybe I needed too many things and didn't know where to start. Over the next several days, it became clear what my heart was asking for. I thought I needed healing and courage. NOPE! I needed peace. You can't get through situations like this without peace. Does that mean that I am not concerned about the outcome of what is about to happen or that I don't have bad days, no. My next phase was just me going through the motions and I lived in that stage for a while.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
This was the first chapter and the first quote in my new book. Do you know that I read that quote 20 times or more? Over and over and over again. The part that I kept reading was simply this, "None of us knows." None of us. Not just that "I" don't know...none of us knows. The next few days that I read this book, I analyzed so many parts of my life. I wish I could tell you that it was romantic, but it wasn't. Talk about a big, fat pity party! I was done feeling mad, now I was just sad, lonely and probably still a little bitter. Let me tell you people, sad, lonely and bitter are NEVER good company to keep. However, I'm learning now that I am grieving.....deeply. I thought about every harsh word that I said to my children or my husband....parents, friends....extended family. I thought about why I did such stupid things. I was quite disgusted with myself.
Even after I came back into the light in the past 2 years - God's light that is, it is still hard to look at myself. Ask any person in my household, I get dressed in the dark...with only the closet light on. I'm still trying to see the growing person that others around me see. I had to decide at that moment to forgive myself as I had been forgiven. I couldn't carry all that BLAH with me on this unexpected journey that I was getting ready to take. What most of us don't realize either, is that we are being prepared for change before we even see it coming. The one thing that I kept telling myself, the only blessing I could see at the time, was that this was perfect timing because Ashton and I were both treatable. We have time to treat it and monitor and manage the other areas that this disease affects. I, by no means, signed up for this but IT IS my life. I had to decide whether I was going to fight or surrender. I didn't know how to do that. I soon learned that fight and surrender came from the same place. I had to surrender my circumstances to God, so that he could help me fight.
I couldn't pray for a couple of weeks.....remember the sad, lonely and bitter company that I was keeping? When we went to church that Sunday, I almost cried walking in. Just because you are in church, doesn't mean that you always feel God there. That Sunday was emotional. I felt like every person that looked at me knew that I was diseased in some way. I had to move past it and jump in. The first thing that our pastor came up and said was this, "The need to pray is greatly on my heart this morning. I don't usually interrupt worship, but I feel the need today." He said this beautiful prayer that was MY prayer. I'm sure I wasn't the only one that needed it that morning, but it spoke to my spirit. All his prayer said is, "I don't have the words, but you know my heart." I couldn't pray because I didn't know what I needed or maybe I needed too many things and didn't know where to start. Over the next several days, it became clear what my heart was asking for. I thought I needed healing and courage. NOPE! I needed peace. You can't get through situations like this without peace. Does that mean that I am not concerned about the outcome of what is about to happen or that I don't have bad days, no. My next phase was just me going through the motions and I lived in that stage for a while.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
P-O-O-P!
Unless you are a mother, father, daycare provider or diaper company, I understand how you could easily be offended by that word. There are many words that have become a second language to me since December 30th, 2008. Some of those words are colon, rectum, anus and POOP! At my recent surgeon visit, Bill and I actually giggled at how many times poop was said between us and my surgeon. When I first started explaining this disease to people, I would try to stay away from most of those words. Now they just seem to fall out of my mouth like I was saying the most beautiful words in the English language.
Let me back up a bit. It is amazing how in a matter of moments - notice I said moments and not seconds, your life goes from being somewhat easy to understand to forever changed. Whether that is a good thing or a bad thing, I'm sure we don't know at that moment. In my moment, I took my 13 year old son to get a new pair of glasses. I can remember everything that we talked about that morning......or argued about because his idea of fashion and mine are very different. I remember what Bill, Ashton and myself were talking about in the lobby while we waited for the eye doctor. Then, I remember feeling the knot on his head and being somewhat alarmed by it, but I told myself it was probably a big cyst or that was the way his skull grew. I wasn't worried. I will never forget that day and when someone asks me how this all started, the first thing I think of is Ashton telling me that he kissed a girl for the first time the night before.
I won't take you back through the rest of the process of us learning that Ashton had Familial Adenomatous Polyposis/Gardner's Syndrome. Those days were filled with doctor's appointments, phone calls, research and learning my family history. I didn't have time for anything else, besides getting my son healthy. When I worried, I looked up more things on the Internet.....which only led to more worry. Sadly, Ashton will have to become familiar with all those same words......colon, rectum, anus and POOP. At 13 he has been poked and examined in places that no 13 year old boy could ever imagine or should have to and he has handled it with his head held high. People always ask me how Ashton is handling things or how he is dealing with me finding out that I have it.......or how I'm being strong for him. What most people don't know is that Ashton is who I look up to. He's the one that reminds me that this is just something we have to do and that when his surgery day comes, he's going to do it for him, not for me. He wants to live, not die from this disease too early in his life. So often we think we are teaching our children, but they are teaching us.
There is something different in the way you feel about saving your child and saving yourself. There was a difference for me anyway. Ashton was my first love. My little "oops" that changed my path in life. I was willing to do anything to keep him healthy. However, when the time came that I found out I had the disease, I had done way too much research. I knew exactly what it meant. While I was so set on doing everything possible to keep Ashton from having cancer, I wasn't willing to do the same things for myself. I had the same thoughts that any other woman would. I need to stay on top of this and get the treatment so that I will be here for my family and my future family.....but at the same time, I wanted to live out my years with my colon, rectum and anus right where it was. I didn't want to worry about POOP.
I was given a book shortly after I found out. The title is, "Thrive, don't simply Survive - Passionately Live the Life You Didn't Plan." I was resentful of this book and my situation in the beginning. I wasn't mad at God because I truly believe that God uses situations to change our lives and the lives of others. I don't think I'm being punished for my faults because even the best of us have faults. I got mad at life. Why me? Why now? Why my child? Then, why me came again. I didn't have time to be sick myself. I needed to take care of my son and this was just a major road block to my goal! I know any mother would agree that in our family, we come last. I was going to have to put myself first and I still have not learned how to do that. My pride and vanity began to take over.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
Let me back up a bit. It is amazing how in a matter of moments - notice I said moments and not seconds, your life goes from being somewhat easy to understand to forever changed. Whether that is a good thing or a bad thing, I'm sure we don't know at that moment. In my moment, I took my 13 year old son to get a new pair of glasses. I can remember everything that we talked about that morning......or argued about because his idea of fashion and mine are very different. I remember what Bill, Ashton and myself were talking about in the lobby while we waited for the eye doctor. Then, I remember feeling the knot on his head and being somewhat alarmed by it, but I told myself it was probably a big cyst or that was the way his skull grew. I wasn't worried. I will never forget that day and when someone asks me how this all started, the first thing I think of is Ashton telling me that he kissed a girl for the first time the night before.
I won't take you back through the rest of the process of us learning that Ashton had Familial Adenomatous Polyposis/Gardner's Syndrome. Those days were filled with doctor's appointments, phone calls, research and learning my family history. I didn't have time for anything else, besides getting my son healthy. When I worried, I looked up more things on the Internet.....which only led to more worry. Sadly, Ashton will have to become familiar with all those same words......colon, rectum, anus and POOP. At 13 he has been poked and examined in places that no 13 year old boy could ever imagine or should have to and he has handled it with his head held high. People always ask me how Ashton is handling things or how he is dealing with me finding out that I have it.......or how I'm being strong for him. What most people don't know is that Ashton is who I look up to. He's the one that reminds me that this is just something we have to do and that when his surgery day comes, he's going to do it for him, not for me. He wants to live, not die from this disease too early in his life. So often we think we are teaching our children, but they are teaching us.
There is something different in the way you feel about saving your child and saving yourself. There was a difference for me anyway. Ashton was my first love. My little "oops" that changed my path in life. I was willing to do anything to keep him healthy. However, when the time came that I found out I had the disease, I had done way too much research. I knew exactly what it meant. While I was so set on doing everything possible to keep Ashton from having cancer, I wasn't willing to do the same things for myself. I had the same thoughts that any other woman would. I need to stay on top of this and get the treatment so that I will be here for my family and my future family.....but at the same time, I wanted to live out my years with my colon, rectum and anus right where it was. I didn't want to worry about POOP.
I was given a book shortly after I found out. The title is, "Thrive, don't simply Survive - Passionately Live the Life You Didn't Plan." I was resentful of this book and my situation in the beginning. I wasn't mad at God because I truly believe that God uses situations to change our lives and the lives of others. I don't think I'm being punished for my faults because even the best of us have faults. I got mad at life. Why me? Why now? Why my child? Then, why me came again. I didn't have time to be sick myself. I needed to take care of my son and this was just a major road block to my goal! I know any mother would agree that in our family, we come last. I was going to have to put myself first and I still have not learned how to do that. My pride and vanity began to take over.
Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis
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