Wednesday, September 29, 2010
Tuesday, September 28, 2010
I am so thankful today.
I was not yesterday. Yesterday I felt sorry for myself and for Jackson and all he has to go through. I was angry and depressed all day. I wanted nothing more to just crawl back into bed and not face the day or the blisters or the diaper changes that revealed my sons raw hiney. I just hated everything and even said out loud several time "I HATE EB!!!!!!!!!!" I really do hate it but what gives me the right to feel sorry for me???
Around 4 yesterday afternoon while I was lying on the couch feeling sorry for myself I decided that was it. I got up and told Jason "I guess I need to snap out of it and stop feeling so damn sorry for myself." He just smiled at me. He knew I was going to realize that eventually and just let me come to it on my own. Some days we just move on like normal and some days I need that slap!
Today I am so thankful for everything in my life. Not just the normal stuff like my husband, my kids, our health and our jobs. I am really truly thankful for things like the ability to hug and hold Jackson, my ability to dress him in normal clothing, put him in a car seat, and even just to feed him. I am just so thankful for the little things that we get to enjoy with Jackson. Even though EB really sucks no matter the type or the severity,at least we have some things to be thankful for. Do we have to be super careful? Yes, but at least WE CAN do some things. Some EB babies are covered from head to toe with bandages and they wake up and go to bed in pain. Hugs, clothes and food are all things those babies hope for.
Although Jackson's wounds make me sad everyday I just realized that I have to stop feeling sorry for me. Really how is feeling sorry for me going to do any good? How is it going to do Jackson any good? It's not. Not at all. Of course I can be sad for Jackson sometimes but not to the point where it is going to slow him down. From the looks of it, this kid is not going to take EB lying down. I am sure he will have his days where he screams "I HATE EB!" just like his mommy BUT I bet he laughs at himself when he is done. That is just who he is. I can tell already. I am so thankful for that!!!!!
A BIG thanks to Courtney for helping me to realize that we have so much to be thankful for. Courtney is an awesome mother and I just pray that one day I have the same strength and faith that she does. The way she carries on her life with her amazing son Tripp is a true inspiration. To make a long story short, Tripp has junctional EB and has been having a rough time lately. Please say a prayer for Courtney, her husband Randy and Tripp. I know I do, everyday.
I was not yesterday. Yesterday I felt sorry for myself and for Jackson and all he has to go through. I was angry and depressed all day. I wanted nothing more to just crawl back into bed and not face the day or the blisters or the diaper changes that revealed my sons raw hiney. I just hated everything and even said out loud several time "I HATE EB!!!!!!!!!!" I really do hate it but what gives me the right to feel sorry for me???
Around 4 yesterday afternoon while I was lying on the couch feeling sorry for myself I decided that was it. I got up and told Jason "I guess I need to snap out of it and stop feeling so damn sorry for myself." He just smiled at me. He knew I was going to realize that eventually and just let me come to it on my own. Some days we just move on like normal and some days I need that slap!
Today I am so thankful for everything in my life. Not just the normal stuff like my husband, my kids, our health and our jobs. I am really truly thankful for things like the ability to hug and hold Jackson, my ability to dress him in normal clothing, put him in a car seat, and even just to feed him. I am just so thankful for the little things that we get to enjoy with Jackson. Even though EB really sucks no matter the type or the severity,at least we have some things to be thankful for. Do we have to be super careful? Yes, but at least WE CAN do some things. Some EB babies are covered from head to toe with bandages and they wake up and go to bed in pain. Hugs, clothes and food are all things those babies hope for.
Although Jackson's wounds make me sad everyday I just realized that I have to stop feeling sorry for me. Really how is feeling sorry for me going to do any good? How is it going to do Jackson any good? It's not. Not at all. Of course I can be sad for Jackson sometimes but not to the point where it is going to slow him down. From the looks of it, this kid is not going to take EB lying down. I am sure he will have his days where he screams "I HATE EB!" just like his mommy BUT I bet he laughs at himself when he is done. That is just who he is. I can tell already. I am so thankful for that!!!!!
A BIG thanks to Courtney for helping me to realize that we have so much to be thankful for. Courtney is an awesome mother and I just pray that one day I have the same strength and faith that she does. The way she carries on her life with her amazing son Tripp is a true inspiration. To make a long story short, Tripp has junctional EB and has been having a rough time lately. Please say a prayer for Courtney, her husband Randy and Tripp. I know I do, everyday.
Monday, September 27, 2010
Thursday, September 16, 2010
A few things.....all about Peanut
I do not have much time today. I really should not even be here now but I need a break from this crazy project I am doing for work.
- Jackson is rolling over. He is rolling from his back to his belly. When he gets onto his belly he screams. He HATES being on his belly.
- Jackson is cutting teeth. Yuck. Last night was terrible and he was up every. single. hour. My new best friend is Hylands Teething Tablet! Thanks Angie!
- I am super happy to tell you all that we are going to Ohio in December. Jackson will be seen by a team of doctors that know all about EB. Cincinnati Childrens EB clinic is one of very few EB clinics in the country. I have talked to a few people that have been already and they LOVE LOVE LOVE it. Often the parents know way more than any local doctor about EB. Even though Dr. W is amazing and takes very good care of my children, he asks me questions about EB and how to care for Jackson. EB is just SO RARE that there are not many people that know about it, much less specialize in it.
Now for the fun part- getting it all approved with our health insurance. We will be seeing several different specialists and each requires a separate co-pay. Hopefully since we are double covered we won't have to pay a penny. Going out of town in December is crazy enough!
- Speaking of EB being rare, an EB friend of ours is doing a fundraiser in order to raise money and awareness for EB. Head on over to Chris' Dunk Tank page and vote for an idea or submit an idea of your own! Chris will be doing whatever crazy dare wins in October during EB Awareness Week.
- Jackson is rolling over. He is rolling from his back to his belly. When he gets onto his belly he screams. He HATES being on his belly.
- Jackson is cutting teeth. Yuck. Last night was terrible and he was up every. single. hour. My new best friend is Hylands Teething Tablet! Thanks Angie!
- I am super happy to tell you all that we are going to Ohio in December. Jackson will be seen by a team of doctors that know all about EB. Cincinnati Childrens EB clinic is one of very few EB clinics in the country. I have talked to a few people that have been already and they LOVE LOVE LOVE it. Often the parents know way more than any local doctor about EB. Even though Dr. W is amazing and takes very good care of my children, he asks me questions about EB and how to care for Jackson. EB is just SO RARE that there are not many people that know about it, much less specialize in it.
Now for the fun part- getting it all approved with our health insurance. We will be seeing several different specialists and each requires a separate co-pay. Hopefully since we are double covered we won't have to pay a penny. Going out of town in December is crazy enough!
- Speaking of EB being rare, an EB friend of ours is doing a fundraiser in order to raise money and awareness for EB. Head on over to Chris' Dunk Tank page and vote for an idea or submit an idea of your own! Chris will be doing whatever crazy dare wins in October during EB Awareness Week.
Wednesday, September 15, 2010
Monday, September 13, 2010
Welcome to Holland By Emily Perl Kingsley
Jason and I ran across this the other day when reading another EB parents blog. We both think that this is the best way to describe how we feel. It was written by Emily Perl Kingsley. Emily has been a writer for Sesame Street since 1970. She has a son with Down Syndrome. you can read more about her on her Wiki Page.
WELCOME TO HOLLAND- by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
WELCOME TO HOLLAND- by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Friday, September 10, 2010
Thursday, September 9, 2010
4 Years ago today I became a Mrs!!!
I am so proud that Jason chose me to spend the rest of his life with. Everyday is even better than the last when you are spending it with the love of your life.
I love you honey!
I love you honey!
Wednesday, September 8, 2010
Friday, September 3, 2010
Thursday, September 2, 2010
Never a dull moment....
It is always crazy busy around here with 4 kids. Sometimes I barely remember to brush my own hair. Every once in a while the kids like to add a little more mayhem to the mix. This week we have:
While running around like aninsane monkey three year old, Jace is having asthma attacks. I just mentioned to someone at the beginning of the week that he has not had a real attack in about a year. The next day he had an attack. Have you ever tried making an insane monkey three year old take a breathing treatment? It is NO FUN!
While all this with Jace was going on Jason started noticing a lump on Jackson’s chest. Basically it is on his breast. I did some google searches and thought it was due to witches milk. It is very common for boy and girl babies both to develop a tiny little breast bud while nursing. The increased amount of estrogen from mommy can sometimes cause this, no big deal. We left it alone. Then late Tuesday afternoon Jason tells me to take another look at it and thinks that it might be forming a small head on it. I freaked and called the doctor. Of course they thought it was witches milk as well. When I mentioned that it was beginning to look like a pimple they freaked as well. Wednesday morning we took him in to the Dr. W and low and behold, Jackson has a staph infection. Just the thought of having to take Jackson to the ER was giving me major anxiety. ER’s can be very dangerous for babies with EB. EB is so rare and people just don’t know what to do.
Luckily Dr. W was able to drain it in his office and put him on antibiotics. The draining was no fun at all but Jackson is a trooper. He maybe cried for 2-3 minutes. He is a tough guy!!! We are back home now and are running a 10 day course of antibiotics, keeping an eye on it and praying that it goes away!
We are hoping this is not the start of something with Jackson. Staph can be very serious (as I am sure you remember from Kara!). Kids with EB are much more prone to infection due to all the open sores on them. The strange thing about this spot is that there were no blisters or open sores in that area, ever.
They are guessing he may had had a small open pore there and the staph just made its way in there. Poor guy!
The really strange thing is- I just told someone earlier in the week that we have been able to keep Jackson infection free. A few days later, infection! No joke. I can’t make this stuff up people. I am just done making any comment whatsoever concerning my children’s health!
There is never a dull moment around here but I love my crazy life! If thing get a little crazy I like to call my juggling act cardio. It makes me feel better.
- Jace acting like he has been raised by baboons
- Jace having asthma attacks
- Jackson developing a staph infection.
That's right folks, no dull moments!
So let’s start with the baboon boy. For some reason my little sweet three your old son has turned into a wild animal. It is all we can do not to drop him off at the zoo and RUN! Some say it is because of Jackson (new baby in the house, no attention, blah blah bla) but I don’t think so. I think if it were Jackson then Jace would have been acting out more in the beginning, which he was but he got better and now worse again. I would like to think that it is just his age and this shall soon pass. If not you can you PLEASE pass me a drink.
see the resemblance???
While running around like an
While all this with Jace was going on Jason started noticing a lump on Jackson’s chest. Basically it is on his breast. I did some google searches and thought it was due to witches milk. It is very common for boy and girl babies both to develop a tiny little breast bud while nursing. The increased amount of estrogen from mommy can sometimes cause this, no big deal. We left it alone. Then late Tuesday afternoon Jason tells me to take another look at it and thinks that it might be forming a small head on it. I freaked and called the doctor. Of course they thought it was witches milk as well. When I mentioned that it was beginning to look like a pimple they freaked as well. Wednesday morning we took him in to the Dr. W and low and behold, Jackson has a staph infection. Just the thought of having to take Jackson to the ER was giving me major anxiety. ER’s can be very dangerous for babies with EB. EB is so rare and people just don’t know what to do.
Luckily Dr. W was able to drain it in his office and put him on antibiotics. The draining was no fun at all but Jackson is a trooper. He maybe cried for 2-3 minutes. He is a tough guy!!! We are back home now and are running a 10 day course of antibiotics, keeping an eye on it and praying that it goes away!
We are hoping this is not the start of something with Jackson. Staph can be very serious (as I am sure you remember from Kara!). Kids with EB are much more prone to infection due to all the open sores on them. The strange thing about this spot is that there were no blisters or open sores in that area, ever.
They are guessing he may had had a small open pore there and the staph just made its way in there. Poor guy!
The really strange thing is- I just told someone earlier in the week that we have been able to keep Jackson infection free. A few days later, infection! No joke. I can’t make this stuff up people. I am just done making any comment whatsoever concerning my children’s health!
There is never a dull moment around here but I love my crazy life! If thing get a little crazy I like to call my juggling act cardio. It makes me feel better.
Wednesday, September 1, 2010
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