To enjoy this conversation thoroughly you must first envision 4 ½ year old Emma, tiny as can be, with crazy hair, Tweety Bird jammies on and a voice like a chipmunk (Alvin, Simon or Theodore, you choose!). She is lying on a pillow beside me trying to go to sleep. She isn’t in her bed because she feels sick to her stomach and is certain that she will throw up at any moment. With that in mind, read on…
Emma: Mama, what did you want to be when you were a kid?
Mama: Well, I wanted to be a princess, a veterinarian, a teacher and a mother.
E: Wow, you got to be a mama and then you turned into a teacher too!
M: Yes, something like that.
E: Mama, do wolves really blow down houses?
M: No, honey that’s only in stories. Would you like me to tell you the story of the Three Little Pigs and the Big Bad Wolf?
E: I know that story but you can tell me.
I tell the story and am interrupted several times. Emma adds her own touch to the story telling how the wolf knocks on the pig’s door as a pizza man. I tell my version and our conversation continues.
E: Mama, what do you think wolves taste like?
M: I don’t know, maybe like ground beef.
E: Are wolves real?
M: Yes, they are real.
E: Well, I don’t want to eat one!
E: Mama, do dogs puke?
M: Yes, they can throw up when they are sick.
E: Ewwwww! What does their puke look like?
M: Well, I suppose it looks like whatever kind of dog food they have eaten.
E: Would it have meat in it?
M: I guess if the dog ate meat it would have some in it. Do you know how to tell if a dog is sick?
E: No.
M: Well, if he is feeling good and is happy his nose is cold and wet. If the dog is sick his nose is warm and dry.
E: Well, I check our cats' noses all the time and they aren’t cold or wet, so that means they are sick.
M: No, it doesn’t work that way with cats.
E: Oh, well it should.
M: Emma, aren’t you tired yet?
E: No, not yet.
M: Want me to tell you a story?
E: Yes!
I proceed to make up a story about a princess named Princess Emma who is 4 years old, has big blue eyes and dark blond hair. Her fairy godmother gives her three wishes. She loves the story and our conversation continues.
E: Are princesses real?
M: Yes, there are real princesses.
E: Wow that’s neat. You wanted to be a princess when you were a kid like me?
M: Yep, I sure did. Do you know what you want to be when you are big?
E: Hmm, I hafta fink. I guess I just want to be a normal person.
M: What is a normal person?
E: You know, a normal person.
M: Do you want to get married and have children?
E: Yes, like a normal person!
M: How many children do you want to have?
E: (raises 10 fingers) This many!
M: Wow! That’s a lot of children!
M: Do you want boys or girls or some of both?
E: I want this many boys (shows five fingers) and this many girls (shows the other five fingers).
M: That’s a lot of kids. Do you know what you would name them?
E: Well, the boys I would name Garrett, Garrett, Garrett, Garrett, and Garrett.
M: What you name the girls?
E: Anna, Anna, Anna, Anna, and Anna.
M: Well, what if you wanted only one boy to come and you called and they all came because their names were all Garrett?
E: You’re silly Mama! One would be Junior, one would be Garrett, one would be Boy, and the other two would be Garrett.
M: Oh that makes much more sense!
M: Are you getting tired yet Emma?
E: Yes, are you done talking to me?
M: If you want me to be. Let’s go to sleep now and maybe your tummy will feel better in the morning.
You have to love conversations with little ones. It’s amazing to see what goes on in their minds. I cherish those conversations because I know that before long my little ones won’t be so little anymore. I hold onto these times and hope that I can ingrained them in my mind so I never forget.
Thursday, January 27, 2005
Tuesday, January 25, 2005
A Six Month Check Up
Today we went for Anna's six month check and for Isabella's 2 year check. Bella was great, sat so still and acted incredible all the while the doctor was checking her out. He was slightly concerned about her speech but because I wasn't terrible concerned he decided to let it ride for now. He did tell me that if I decided I wanted her hearing checked down the line that he would send us to the audiologist. I think she'll be fine though. I believe she is playing catch up from being so sick all last year. She has made remarkable strides just in the last couple months with her speech so I'm not overly worried.
Anna had her check up today and 3 shots. Bless her heart, you have to feel sorry for the little waif when she has no fat on her little bones to stick those shots into. Oh how she screamed! But in the end it is better to scream a moment or two now and avoid the possible sicknesses that the shots are there to protect against.
Anna weighed in at 11 pounds 12 ounces. She has "officially" fallen off the growth chart. We knew at the gastro she wasn't on it but now since it was at the peds offices it is official. The gastro is going to run some tests to check for malabsorption issues. I guess we'll see. Our ped said that he wants weight checks on her each month between now and her 9 months check. I am hoping between the two doctors we can find out some answers. She is miserable and it breaks my heart not to be able to do anything for her. It reminds me of Garrett and that is very hard for me. Maybe we'll have some answers soon though.
We have a terrific ped who loves the kids but that is another post entirely. It's nice to find doctors that love your children especially when you are seeing so much of them. This guy is great and we are very fortunate that almost all the specialists we have gone to are just as wonderful. That makes the constant trips that much easier to stomach... for me and for all the kids.
Anna had her check up today and 3 shots. Bless her heart, you have to feel sorry for the little waif when she has no fat on her little bones to stick those shots into. Oh how she screamed! But in the end it is better to scream a moment or two now and avoid the possible sicknesses that the shots are there to protect against.
Anna weighed in at 11 pounds 12 ounces. She has "officially" fallen off the growth chart. We knew at the gastro she wasn't on it but now since it was at the peds offices it is official. The gastro is going to run some tests to check for malabsorption issues. I guess we'll see. Our ped said that he wants weight checks on her each month between now and her 9 months check. I am hoping between the two doctors we can find out some answers. She is miserable and it breaks my heart not to be able to do anything for her. It reminds me of Garrett and that is very hard for me. Maybe we'll have some answers soon though.
We have a terrific ped who loves the kids but that is another post entirely. It's nice to find doctors that love your children especially when you are seeing so much of them. This guy is great and we are very fortunate that almost all the specialists we have gone to are just as wonderful. That makes the constant trips that much easier to stomach... for me and for all the kids.
Saturday, January 22, 2005
As Angry As A Wet Hen
Last night Kaylie, my oldest daughter, went to a slumber birthday party. It was at one of her best friend's house. She had been so excited to go, counting down the days until she would see her friend. This girl used to be homeschooled, was in our support group and did everything with Kaylie. This year her mother decided to put her into public school. I thought it was a very good decision. Some kids are homeschool material, some are not.
This little girl is always in need of the limelight. She is constantly doing things to make people watch her. She has to be the center of attention at all times. Her mother is divorced and remarried to a great guy. Problem here is that she doesn't allow Daddy #2 any say in how she is raised. This man has been part of her life since she was a baby but has no say in her upbringing at all. That is a shame. The second major downfall these parents have is that the mother believes that her children should be free to "express" themselves however they need to. They shouldn't be inhibited. Oh, please! Children need to be taught there is a time and place for all emotions and that sometimes you have to restrain yourself! What a disservice she is doing for her children.
That brings me to my ire. I called the mother this afternoon to make sure the party was over and it was time to get Kaylie. I asked how the party went. She said to me, "Oh, it was great. They had a problem at first but it got worked out and then everyone had a good time". I didn't think much of it as this girl normally has a problem or two accepting that she won't be the center of attention at all times. I told the mom I was happy things went well and that I would be there shortly to gather up Kaylie.
When I picked her up I asked her what had happened. She said that there was a disagreement on the seating arrangement (the birthday girl wanted Kaylie to get out of her seat and Kaylie wouldn't). The birthday girl then proceeded to start to hit Kaylie in the head. Another girl, who Kaylie said she didn't really like, started to hit her as well. She then threw a large rubbermaid lid at Kaylie, hitting her in the head. The girl then treated Kaylie horribly for the rest of the time she was there. She also hit some of the other girls when they didn't do what she wanted. Kaylie said that the mom only came to help her when she started to cry. She asked the girls to apologize and then did nothing else! I asked Kaylie if the mom made her apologize too and she said no because she didn't do anything wrong. She did apologize later to the second girl because when she got hit in the head she threw down something that was in her hands to get up and it hit the girl in a sore she had on her leg. Kaylie said she was sorry for hurting her.
I was livid! So there was a problem that got fixed?! The problem was that two girls were beating up my child and no one had the decency to tell me what was really going on. I guess there is an up side to all of it. I have long since hoped that Kaylie's friendship with this girl would fade out. Kaylie told me in the car on the way home that she didn't want to be friends with her anymore. That she wasn't really a true friend. I hate for her to have to experience something like this but I guess it is a life lesson. I have always had a problem with how this girl treats people and I am glad that my daughter can see how she really is.
I decided not to call the mother. We are just going to let all of it die out. Kaylie says she won't take her calls anymore and won't be mailing or emailing the girl at all. It's sad but I'm glad that the decision was Kaylie's and not mine. If I had just made the decision for her she would have resented me. This way she sees the truth of the situation. It's a hard pill to swallow but will go down smoother with the nice cup of hot cocoa that I made for her.
This little girl is always in need of the limelight. She is constantly doing things to make people watch her. She has to be the center of attention at all times. Her mother is divorced and remarried to a great guy. Problem here is that she doesn't allow Daddy #2 any say in how she is raised. This man has been part of her life since she was a baby but has no say in her upbringing at all. That is a shame. The second major downfall these parents have is that the mother believes that her children should be free to "express" themselves however they need to. They shouldn't be inhibited. Oh, please! Children need to be taught there is a time and place for all emotions and that sometimes you have to restrain yourself! What a disservice she is doing for her children.
That brings me to my ire. I called the mother this afternoon to make sure the party was over and it was time to get Kaylie. I asked how the party went. She said to me, "Oh, it was great. They had a problem at first but it got worked out and then everyone had a good time". I didn't think much of it as this girl normally has a problem or two accepting that she won't be the center of attention at all times. I told the mom I was happy things went well and that I would be there shortly to gather up Kaylie.
When I picked her up I asked her what had happened. She said that there was a disagreement on the seating arrangement (the birthday girl wanted Kaylie to get out of her seat and Kaylie wouldn't). The birthday girl then proceeded to start to hit Kaylie in the head. Another girl, who Kaylie said she didn't really like, started to hit her as well. She then threw a large rubbermaid lid at Kaylie, hitting her in the head. The girl then treated Kaylie horribly for the rest of the time she was there. She also hit some of the other girls when they didn't do what she wanted. Kaylie said that the mom only came to help her when she started to cry. She asked the girls to apologize and then did nothing else! I asked Kaylie if the mom made her apologize too and she said no because she didn't do anything wrong. She did apologize later to the second girl because when she got hit in the head she threw down something that was in her hands to get up and it hit the girl in a sore she had on her leg. Kaylie said she was sorry for hurting her.
I was livid! So there was a problem that got fixed?! The problem was that two girls were beating up my child and no one had the decency to tell me what was really going on. I guess there is an up side to all of it. I have long since hoped that Kaylie's friendship with this girl would fade out. Kaylie told me in the car on the way home that she didn't want to be friends with her anymore. That she wasn't really a true friend. I hate for her to have to experience something like this but I guess it is a life lesson. I have always had a problem with how this girl treats people and I am glad that my daughter can see how she really is.
I decided not to call the mother. We are just going to let all of it die out. Kaylie says she won't take her calls anymore and won't be mailing or emailing the girl at all. It's sad but I'm glad that the decision was Kaylie's and not mine. If I had just made the decision for her she would have resented me. This way she sees the truth of the situation. It's a hard pill to swallow but will go down smoother with the nice cup of hot cocoa that I made for her.
The Road Not Taken
My favorite poem of all time is Robert Frost's "The Road Not Taken". Even before I made the choices that I have made it was my favorite poem. In light of those choices, though, it makes even more sense for me to love that poem. It speaks volumes about how I feel about my life, my choices and how things have turned out for me. I can't imagine my life any other way. I love my husband, my children, my home, everything. I can even take the lumps with the good. If I had chosen the other "road" I wouldn't have all that I do. I can't fathom that life. I thank God for steering me in the right direction.
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that, the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
Robert Frost
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that, the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
Robert Frost
The Library
I got to go to the library today… by myself. This is a feat short of a miracle! I don’t often go anywhere without my entourage in tow. I normally take the kids everywhere with me. But today was Saturday and Mike was home so I sneaked off when the baby took a morning nap. It was nice.
I like going to the library for many reasons. It brings back great memories from my childhood. We didn’t go often but I loved to go to the library. I loved to check out books, bring them home and immerse myself in them. I could live another life when I read books. It was an escape I guess. I stopped going to the library for many years, not because I didn’t want to go, but because I never made the time to go.
I remember the first time I found myself back in a library after so many years. I immediately felt at home. The smell of the books overwhelmed me. I had forgotten that books have a distinctive smell to them. I missed that smell and wondered why it had taken me so long to get back to where I felt so peaceful. I remember just standing there, taking deep breaths and smiling. I walked the aisles and ran my finger down the spines of the books. I took out a couple and leafed through them. Some of the books were newer but some were old. The crackle of their pages still echoes in my mind. I wandered around just taking it in, thinking about what I might actually want to take home with me. There was so much to choose from. I chose some books and checked them out. I took them home and lingered over each one of them. I was happy to have found my way home again to the books that helped me escape the pains of my childhood, that helped me explore avenues I never knew existed and that helped me to have peace in a not so peaceful world.
Today as I wandered up and down the aisles I really explored the library. This one is much smaller and they don’t have near as many books as the libraries that I have gone to in the past. The feeling was still there and I thoroughly enjoyed my short trip. I pondered what to check out, read some dust covers and fingered the spines of a lot of books. There were so many that I knew I would really love but I know my limits. When I get a great book I find myself completely immersed in the story and I tune out everything around me until I can finish the book. When you have so many children, or even one for that matter, you can’t sit and ignore them all day just so you can enjoy a good book. What kind of mother would I be to completey ignore my children all day? So I decided that I would find a few that I found "easy" reading and a couple that I could just pick up and read a bit here and there.
I haven’t been to the library in a while to pick out books for myself. I’m glad I got to go today. I can’t wait to delve into them and find myself in another place and time. Adventures without having to give up what is most important to me… how can you beat that?
I like going to the library for many reasons. It brings back great memories from my childhood. We didn’t go often but I loved to go to the library. I loved to check out books, bring them home and immerse myself in them. I could live another life when I read books. It was an escape I guess. I stopped going to the library for many years, not because I didn’t want to go, but because I never made the time to go.
I remember the first time I found myself back in a library after so many years. I immediately felt at home. The smell of the books overwhelmed me. I had forgotten that books have a distinctive smell to them. I missed that smell and wondered why it had taken me so long to get back to where I felt so peaceful. I remember just standing there, taking deep breaths and smiling. I walked the aisles and ran my finger down the spines of the books. I took out a couple and leafed through them. Some of the books were newer but some were old. The crackle of their pages still echoes in my mind. I wandered around just taking it in, thinking about what I might actually want to take home with me. There was so much to choose from. I chose some books and checked them out. I took them home and lingered over each one of them. I was happy to have found my way home again to the books that helped me escape the pains of my childhood, that helped me explore avenues I never knew existed and that helped me to have peace in a not so peaceful world.
Today as I wandered up and down the aisles I really explored the library. This one is much smaller and they don’t have near as many books as the libraries that I have gone to in the past. The feeling was still there and I thoroughly enjoyed my short trip. I pondered what to check out, read some dust covers and fingered the spines of a lot of books. There were so many that I knew I would really love but I know my limits. When I get a great book I find myself completely immersed in the story and I tune out everything around me until I can finish the book. When you have so many children, or even one for that matter, you can’t sit and ignore them all day just so you can enjoy a good book. What kind of mother would I be to completey ignore my children all day? So I decided that I would find a few that I found "easy" reading and a couple that I could just pick up and read a bit here and there.
I haven’t been to the library in a while to pick out books for myself. I’m glad I got to go today. I can’t wait to delve into them and find myself in another place and time. Adventures without having to give up what is most important to me… how can you beat that?
Friday, January 21, 2005
The mind of a 2 year old
The mind of a 2 year old is always busy. It is busy thinking of ways to entertain the 2 year old body and soul that goes with that little mind. It never tires of thinking of new and interesting things to occupy said 2 year old. The mind of a 2 year old can be a very dangerous thing!
Case in point:
Yesterday while I was cleaning the kitchen I thought that Isabella was out of harms way. She was in the next room watching The Wiggles, or so I thought. I needed to go to the bathroom so I left the kitchen, went through the livingroom on my way down the hall to the bathroom. On her way out of the bathroom Isabella spies me and starts talking nonstop in her Japanese (how she is fluent in Japanese I'm not sure but low and behold that is what she speaks!). She is very proud of herself for some reason. She is telling me all about what adventure she has just experience. Of course I couldn't understand a word of it but I could see that it involved water as she was soaked from head to toe. I also could see that she has clumps of wet toilet paper stuck to various parts of her body. I immediately groan as I hate wet toilet paper almost as much as I hate reaching into a sink full of dirty dish water. I started praying that the child had not experimented with the toliet again as I find that to be so disgusting as well.
As I continued down the hall I can hear the water running in the bathroom sink. When I approach the bathroom I can clearly see what fun Isabella was having while she played in the bathroom. She had taken half a roll of toilet paper, torn it in pieces and put it in the sink. She then proceeded to turn on the water at full blast and gleefully play in the rising water. Why she decided she was done I don't know but I do know that she had been playing for quite a while. The water was spilling over it's banks, cascading down the cabinets and pooling on the floor. Luckily I caught it when it was only an inch in depth. I could have been much worse. Unfortunately I didn't catch it before it started to seep out of the bathroom and onto the hall carpet. As I step to go into the bathroom the water that had soaked into the carpet pooled up around my foot. I wasn't happy.
After cleaning up the water, washing the floor and finding a heater to start drying the carpet I contemplated whether or not to discipline Isabella. She meant no harm but needs to know she can't play in the bathroom. Of course by the time I was done her mind was off the bathroom and on to big and better things. She was "loving" the cat and watching The Wiggles. Dancing around, singing in Japanese, and smiling the biggest smile told me that I couldn't spank her. She was only being 2. Sometimes their minds tell them to do something and they just have to obey. That's what 2 year olds do. She gets in trouble for being naughty all the time I figured this one could slide... afterall, don't we all wish we could fill the sink and play in the water from time to time?
Case in point:
Yesterday while I was cleaning the kitchen I thought that Isabella was out of harms way. She was in the next room watching The Wiggles, or so I thought. I needed to go to the bathroom so I left the kitchen, went through the livingroom on my way down the hall to the bathroom. On her way out of the bathroom Isabella spies me and starts talking nonstop in her Japanese (how she is fluent in Japanese I'm not sure but low and behold that is what she speaks!). She is very proud of herself for some reason. She is telling me all about what adventure she has just experience. Of course I couldn't understand a word of it but I could see that it involved water as she was soaked from head to toe. I also could see that she has clumps of wet toilet paper stuck to various parts of her body. I immediately groan as I hate wet toilet paper almost as much as I hate reaching into a sink full of dirty dish water. I started praying that the child had not experimented with the toliet again as I find that to be so disgusting as well.
As I continued down the hall I can hear the water running in the bathroom sink. When I approach the bathroom I can clearly see what fun Isabella was having while she played in the bathroom. She had taken half a roll of toilet paper, torn it in pieces and put it in the sink. She then proceeded to turn on the water at full blast and gleefully play in the rising water. Why she decided she was done I don't know but I do know that she had been playing for quite a while. The water was spilling over it's banks, cascading down the cabinets and pooling on the floor. Luckily I caught it when it was only an inch in depth. I could have been much worse. Unfortunately I didn't catch it before it started to seep out of the bathroom and onto the hall carpet. As I step to go into the bathroom the water that had soaked into the carpet pooled up around my foot. I wasn't happy.
After cleaning up the water, washing the floor and finding a heater to start drying the carpet I contemplated whether or not to discipline Isabella. She meant no harm but needs to know she can't play in the bathroom. Of course by the time I was done her mind was off the bathroom and on to big and better things. She was "loving" the cat and watching The Wiggles. Dancing around, singing in Japanese, and smiling the biggest smile told me that I couldn't spank her. She was only being 2. Sometimes their minds tell them to do something and they just have to obey. That's what 2 year olds do. She gets in trouble for being naughty all the time I figured this one could slide... afterall, don't we all wish we could fill the sink and play in the water from time to time?
Things I Love
Things I Love
My husband
My children
The distant roll of thunder on a summer’s evening
Spring flowers just beginning to bloom
Cool, crisp autumn nights
The silence of snowfall
A gentle rain on the rooftop
The dew on the grass on a summer’s morning
A toddler’s squeal of delight followed by peals of laughter
Counting the stars on a crystal clear night
Watching the sunrise, it’s rays of light touching the dark and bringing new life to the day
Watching the sunset, the colors painting the sky sealing the day in a beautiful way
A rainbow, God’s symbol of Hope
The smell of a baby’s head
Tiny baby fingers wrapped tightly around mine
The beauty and innocence of a sleeping child
The nuzzle of a cat as she circles your legs, marking you as her territory
Flowers for no reason
A good foot massage
The color pink
Puppies and kitties and all baby animals
Laughing so hard you cry
A friend you can tell anything to and know that she’ll still be your friend
Mozart’s Piano Concerto #21
A good night’s sleep
My faith
Yards and yard of new fabric
Slipping into fresh, cool sheets at night
A warm, fuzzy towel
Listening to the ocean waves hit the shore while sitting on the beach with the cool morning breeze blowing my hair
Moonlit walks on the beach with my husband
Silly pet names that no one understands except us
A long, warm bath
Sleeping with the windows open on a cool fall night and snuggling under the blankets to keep warm
A phone call from someone I haven’t heard from in a long time
The smell of fresh brewed coffee
A warm cup of cocoa
A good book that I just can’t put down until I have reached the very last page
A nice clean house
A movie that will make me laugh, cry and move me so I never forget it
Having the door opened for me
A gentle kiss on my hand
Beautiful blue eyes
The smell of fresh laundry
The power and beauty of a waterfall
Watching my children play, laugh and grow
Seeing my husband grow in his spirituality and faith
Having my husband brush and dry my wet hair
My Lord and Savior, Jesus Christ
My husband
My children
The distant roll of thunder on a summer’s evening
Spring flowers just beginning to bloom
Cool, crisp autumn nights
The silence of snowfall
A gentle rain on the rooftop
The dew on the grass on a summer’s morning
A toddler’s squeal of delight followed by peals of laughter
Counting the stars on a crystal clear night
Watching the sunrise, it’s rays of light touching the dark and bringing new life to the day
Watching the sunset, the colors painting the sky sealing the day in a beautiful way
A rainbow, God’s symbol of Hope
The smell of a baby’s head
Tiny baby fingers wrapped tightly around mine
The beauty and innocence of a sleeping child
The nuzzle of a cat as she circles your legs, marking you as her territory
Flowers for no reason
A good foot massage
The color pink
Puppies and kitties and all baby animals
Laughing so hard you cry
A friend you can tell anything to and know that she’ll still be your friend
Mozart’s Piano Concerto #21
A good night’s sleep
My faith
Yards and yard of new fabric
Slipping into fresh, cool sheets at night
A warm, fuzzy towel
Listening to the ocean waves hit the shore while sitting on the beach with the cool morning breeze blowing my hair
Moonlit walks on the beach with my husband
Silly pet names that no one understands except us
A long, warm bath
Sleeping with the windows open on a cool fall night and snuggling under the blankets to keep warm
A phone call from someone I haven’t heard from in a long time
The smell of fresh brewed coffee
A warm cup of cocoa
A good book that I just can’t put down until I have reached the very last page
A nice clean house
A movie that will make me laugh, cry and move me so I never forget it
Having the door opened for me
A gentle kiss on my hand
Beautiful blue eyes
The smell of fresh laundry
The power and beauty of a waterfall
Watching my children play, laugh and grow
Seeing my husband grow in his spirituality and faith
Having my husband brush and dry my wet hair
My Lord and Savior, Jesus Christ
Friday, January 14, 2005
Happy Birthday Bella!
Happy birthday my sweet Bella! Today you are two! How did that happen? It seems like just yesterday that I was holding you in my arms. Today I am lucky if you will sit still long enough for me to love on you. You are so active and crazy! You are the light of our lives. You keep us laughing. You brighten every day. Our lives are so much better and happier because you are a part of our family. I can't imagine life without you. I thank God each and every day for you and your naughty little laugh and your toothy smile. You are my sunshine! I love you! Happy Birthday my big 2 year old!
Thursday, January 13, 2005
Married to a Star
Well, I think he is anyhow. My husband was on the radio this morning. In the next town over they have an AM news talk station. They interviewed my husband this morning because he is on the Drug Task Force. He and his boss were on the radio for about 30 minutes this morning. The interview was about how drugs have infiltrated our community and what citizens can do to help. They talked about signs to look for, who to contact and the effects on our community. I thought they did a pretty good job. The kids thought it was really cool to hear their Daddy on the radio.
I didn't tell all of them that he would be on the radio but had them all come to our bedroom to listen. Upon entering my bedroom Kaylie says, "Hey, it sounds like someone is impersonating Daddy!" I laughed and laughed and told her that it WAS Daddy. When they first heard his voice they lit up like light bulbs. It was priceless. They wanted to call in to the program and say "We love you Daddy!" They were disappointed when I wouldn't let them. I tried to explain that this was an important, serious interview and that we needed to let him talk to the people about the seriousness of drugs in our community. They seemed to understand but still wanted to call in to tell him they love him. How sweet is that?
Ahh, 30 minutes of fame on the local AM station has brought Mike a lifetime of fame in his children's eyes. It doesn't get much better than that!
I didn't tell all of them that he would be on the radio but had them all come to our bedroom to listen. Upon entering my bedroom Kaylie says, "Hey, it sounds like someone is impersonating Daddy!" I laughed and laughed and told her that it WAS Daddy. When they first heard his voice they lit up like light bulbs. It was priceless. They wanted to call in to the program and say "We love you Daddy!" They were disappointed when I wouldn't let them. I tried to explain that this was an important, serious interview and that we needed to let him talk to the people about the seriousness of drugs in our community. They seemed to understand but still wanted to call in to tell him they love him. How sweet is that?
Ahh, 30 minutes of fame on the local AM station has brought Mike a lifetime of fame in his children's eyes. It doesn't get much better than that!
Wednesday, January 12, 2005
My Hope
I have written about three of the six children so far. Stories on the other three will be coming. They each are so funny in their own ways. Kaylie is a mother hen, Savannah is a ham and Emma, gosh, what can you say about Emma… everything she does is so cute.
It’s amazing to me that six children can come from the very same two parents and they can be so different. They each have their own personalities, their own likes and dislikes, their own quirks. They amaze me each and every day. I am so blessed to be the mother of such wonderful children. Sometimes I wonder what I did to deserve them.
Do you ever wonder if you are doing things right with your children? Even though I "think" I am a good mother I sometimes struggle with the decisions I have made in dealing with certain issues that arise. I want my children to be disciplined, to be respectful, to know right from wrong. But more importantly I want my children to always look back on their childhood and remember how much fun it was growing up in our household. I want them to know they were always loved, wanted and appreciated. I never felt that way when I was growing up and I those things for my children more than anything!
I have tried to instill good values, strong beliefs and a deep love of God and their faith. My oldest child is only 11 and the youngest is almost 6 months so I know I have so much time left to teach these things and to affect their lives in a positive way. Time goes so fast though and I find that I feel almost panicked when I look at Kaylie and see how much she has grown and is changing. I wonder what I could have done differently to insure that she looks back on childhood and smiles. They have had such hard times with medical issues (Garrett and Emma particularly) and I just want them to be able to look past the doctor appointments, the tests, the medicines and hospitals and see that I tried.
I love my husband and children more than anything in this world. I strive each day to help make at least one positive memory for the day. I want my children to always know how much they are loved and cherished and how I hoped, prayed and worked to help make their childhood the best that I could.
It’s amazing to me that six children can come from the very same two parents and they can be so different. They each have their own personalities, their own likes and dislikes, their own quirks. They amaze me each and every day. I am so blessed to be the mother of such wonderful children. Sometimes I wonder what I did to deserve them.
Do you ever wonder if you are doing things right with your children? Even though I "think" I am a good mother I sometimes struggle with the decisions I have made in dealing with certain issues that arise. I want my children to be disciplined, to be respectful, to know right from wrong. But more importantly I want my children to always look back on their childhood and remember how much fun it was growing up in our household. I want them to know they were always loved, wanted and appreciated. I never felt that way when I was growing up and I those things for my children more than anything!
I have tried to instill good values, strong beliefs and a deep love of God and their faith. My oldest child is only 11 and the youngest is almost 6 months so I know I have so much time left to teach these things and to affect their lives in a positive way. Time goes so fast though and I find that I feel almost panicked when I look at Kaylie and see how much she has grown and is changing. I wonder what I could have done differently to insure that she looks back on childhood and smiles. They have had such hard times with medical issues (Garrett and Emma particularly) and I just want them to be able to look past the doctor appointments, the tests, the medicines and hospitals and see that I tried.
I love my husband and children more than anything in this world. I strive each day to help make at least one positive memory for the day. I want my children to always know how much they are loved and cherished and how I hoped, prayed and worked to help make their childhood the best that I could.
Isabella's Heart
What can I say about Isabella? She is our 5th child, our 4th daughter and the center of attention in our house. She lights up the room when she walks in. She has a naughty little laugh and a twinkle in her eye. She is constantly into everything, busy all the time and quite a handful. Most nights I am exhausted by the time she goes to bed. She is far more work than all the first four children combined. But she is our "Bella", our silly angel that keeps us on our toes and keeps us laughing. I don’t know how we got through life before she came along.
Bella was born a couple weeks early after a very hard pregnancy. For about 11 weeks I was on bedrest with her. She wanted to come into the world so badly! She weighed 9 pounds 5ounces and was so chubby. We promptly named her "Chunky" and the name has stuck. I imagine that we will have to change that before she gets much older or we may give her a complex! She doesn’t quite fit her name now as she has slowed down in her growth and now is only in about the 25% for height and weight. Not tiny, but definitely not chunky. She is meaty though and we love to squeeze on her.
Bella was born with a hole in her heart. We didn’t know it prior to birth but when she started having problems as a newborn we were referred to our cardiologist for a check up. Poor Isabella would literally turn the color of an eggplant. Her oxygen levels would dip and she would get blue lips and a purple body. It was very scary. She also had severe reflux so she would spit up and then choke causing even more breathing issues. She slept with us at night and during the day slept in a playpen in the living room so we could monitor her breathing. It was a tense time for us.
When we went to the cardiologist we found that she was born with a congenital heart defect. A common one but one that we had not dealt with. We were told that the hole would close on it’s own and that she would have no further problems once that happened. At her year check up it had indeed closed but the doctor could still hear a murmur and so we were told to have her rechecked in another year’s time. Today was that yearly visit. I thoroughly expected to be released from the cardiologist’s care today. Unfortunately I was wrong.
Today we did an EKG and an Echo. She showed slightly irregular waves on the EKG, she had a low oxygen saturation level, and her echo showed that she has a moderate mitral valve defect. Garrett has a mitral valve defect as well so we know all about them. Depending on how severe the defect is determines the course of action. Some people never even know they have a defect and thus never need any kind of treatment. Garrett does notice his and has to take antibiotics for dental work, severe cuts, stitches, etc. Bella will have to do the same. Not that a mitral valve defect is major but because it is moderate instead of minor we will have to return for further monitoring. Because she shows irregular waves and low oxygen levels the defect is a bit more to worry about.
As we were leaving the doctor told me that in July when we go back for Anna (the baby) we will try to get all the kids appointments to start coinciding so that we aren’t running crazy trying to get to appointments. It is such a relief because the office is 60 miles from our house. We do so much running to doctors that if I can whittle down the amount of time we spend on the road and in the office it will be that much easier on the kids and on me. I know they tire of going to appointments, I can’t say I blame them. I know that I get tired of running everywhere and then sitting for hours in doctors’ offices, hospitals and labs. It’s not a fun life to lead but they make the best of it and try not to complain much. They are such troopers!
Bless Isabella’s heart (literally!), I hope that it doesn’t slow her down any. She is so full of life that it will be hard on her if her heart somehow makes her have to take it a bit easier. It is so hard on Garrett when he starts getting breathless, when his heart aches and when it races or skips beats. Bella looks like she may be headed in that same direction. I hope she handles it with the grace that Garrett does. She will have him to look up to and to follow his lead. At least she isn’t going it alone.
Bella was born a couple weeks early after a very hard pregnancy. For about 11 weeks I was on bedrest with her. She wanted to come into the world so badly! She weighed 9 pounds 5ounces and was so chubby. We promptly named her "Chunky" and the name has stuck. I imagine that we will have to change that before she gets much older or we may give her a complex! She doesn’t quite fit her name now as she has slowed down in her growth and now is only in about the 25% for height and weight. Not tiny, but definitely not chunky. She is meaty though and we love to squeeze on her.
Bella was born with a hole in her heart. We didn’t know it prior to birth but when she started having problems as a newborn we were referred to our cardiologist for a check up. Poor Isabella would literally turn the color of an eggplant. Her oxygen levels would dip and she would get blue lips and a purple body. It was very scary. She also had severe reflux so she would spit up and then choke causing even more breathing issues. She slept with us at night and during the day slept in a playpen in the living room so we could monitor her breathing. It was a tense time for us.
When we went to the cardiologist we found that she was born with a congenital heart defect. A common one but one that we had not dealt with. We were told that the hole would close on it’s own and that she would have no further problems once that happened. At her year check up it had indeed closed but the doctor could still hear a murmur and so we were told to have her rechecked in another year’s time. Today was that yearly visit. I thoroughly expected to be released from the cardiologist’s care today. Unfortunately I was wrong.
Today we did an EKG and an Echo. She showed slightly irregular waves on the EKG, she had a low oxygen saturation level, and her echo showed that she has a moderate mitral valve defect. Garrett has a mitral valve defect as well so we know all about them. Depending on how severe the defect is determines the course of action. Some people never even know they have a defect and thus never need any kind of treatment. Garrett does notice his and has to take antibiotics for dental work, severe cuts, stitches, etc. Bella will have to do the same. Not that a mitral valve defect is major but because it is moderate instead of minor we will have to return for further monitoring. Because she shows irregular waves and low oxygen levels the defect is a bit more to worry about.
As we were leaving the doctor told me that in July when we go back for Anna (the baby) we will try to get all the kids appointments to start coinciding so that we aren’t running crazy trying to get to appointments. It is such a relief because the office is 60 miles from our house. We do so much running to doctors that if I can whittle down the amount of time we spend on the road and in the office it will be that much easier on the kids and on me. I know they tire of going to appointments, I can’t say I blame them. I know that I get tired of running everywhere and then sitting for hours in doctors’ offices, hospitals and labs. It’s not a fun life to lead but they make the best of it and try not to complain much. They are such troopers!
Bless Isabella’s heart (literally!), I hope that it doesn’t slow her down any. She is so full of life that it will be hard on her if her heart somehow makes her have to take it a bit easier. It is so hard on Garrett when he starts getting breathless, when his heart aches and when it races or skips beats. Bella looks like she may be headed in that same direction. I hope she handles it with the grace that Garrett does. She will have him to look up to and to follow his lead. At least she isn’t going it alone.
Tuesday, January 11, 2005
Princess Anna
Anna is the baby of the family. She is 5 1/2 months, almost 6 months old. She rules the roost. Unfortunately not because she bats her little eyelashes to get what she wants. She cries and cries and cries. It is exhausting. It is very reminescent of Garrett. That scares me.
Last week we went to two gastroenterologist appointments. One for Garrett the other for Anna. Anna has been sick since she was born. She has led a hard life so far too. Bless her heart she is a sweet baby when she's not in pain. Some days though she is in so much pain that all she does is cry.
A little history on Anna. When I was pregnant with her I had a wonderful pregnancy. The three previous pregnancies were very hard on me and on the babies. We fully expected to be on bedrest and to be miserable but was pleasantly surprised when I felt wonderful the entire way through the pregnancy. Still, we saw a specialist because of the previous congenital birth defects of the other kids, the problems I faced in previous pregnancies and of course because of my diseases. We were surprised when the doctor found fluid building around Anna's heart while she was in utero. The pregnancy was so easy (barring typical pregnancy discomforts and the rounds of insulin shots for gestational diabetes) that we fully expected her to be perfect in every way. As the pregnancy progressed we found that the fluid was increasing instead of absorbing into her system. At 36 weeks we did an amniocentisis to make sure her lungs were developed so that she could be delivered. They were and because she was beginning to deteroriate inside we delivered her on July 21, 2004. She came into the world lips quivering, puckered out and tears in her eyes. She was a pathetic sight! She was healthy size weighing 6 pounds 10 oz. We did tests to check her heart and to make sure that the fluid was gone. It was and we thought we were going to see great improvement.
Although the fluid was gone a hole was found in her heart. Many newborns are born with holes in the heart that close on their own. Our next youngest, Isabella, was born with this defect. However the kind of hole that Anna has won't close on it's own. She has atrial septal defect with a left to right shunt (or a right to left, can't remember right this second). This means that the blood flows back into the wrong chamber. We were instructed to go to the cardiologist. Luckily we have an excellent cardiologist that takes care of three of our other kids (one occasionally and two more regularly). He was wonderful in helping us understand this new defect (we have other heart defects but not this particular kind). We will go to see how her heart is doing at a year and decide if she needs surgery to close the hole or if they will let it be.
In the course of her short life she has also suffered from many respiratory problems and horrible bowel problems. This brings me back to the visit to the gastro. I asked our pediatrician to send us to our gastro because Anna has had mucus in her stools for months. She also suffers sometimes from stools that are foamy or jelly like. We have tried just about everything (including watching what I eat and drink since she is nursed) but to no avail. At the end of our ropes we consulted the gastro who treats Garrett and Emma. He is wonderful. Of course we had only seen him a couple days prior for Garrett so he wasn't happy to see us in his office for another child! He said that he sees entirely too much of us. I told him I happened to agree!
We are looking into various problems but have started by putting her on an antibotics for anaerobic bacteria. He is hoping that maybe they have gotten out of balance and by correcting them we may find her to get better. Unfortunately I haven't seen any improvement at all. I guess we'll be doing the blood and stool work afterall. I hate to think of putting her through that. She has already had blood taken before and that was miserable.
She is so tiny. The doctor thinks she has malabsorption issues as well. She is only 11 1/2 pounds and is almost 6 months old. He is concerned about her weight but hasn't classified her as "failure to thrive" or "poor growth" yet. She is doing the things she should for her age but is the size of a two month old. Cute, but concerning. Regardless of how the antibotics do we are to go back in a month for a weight check to make sure she is growing. I don't know what they will do if she doesn't.
It pains me to have so many children who are sickly. That suffer through so much. I have had people ask why I have more children when there is a risk of having problems. I once said to someone that my children are a blessing, not only for me but for everyone they come in contact with. Because we go to so many doctors we come in contact with so many people. We are able to share our lives with those people. We share our joy for life and our positive attitudes. I think that many people are blessed just by knowing my kids. The are fabulous children. They are polite, happy and very upbeat. They have faced so much and come out on top. They are an inspiration to me. I strive to live the way they do... with a smile on my face, a song on my lips and unfaltering trust in God.
I have been very blessed and feel so thankful even on our worst days. I wouldn't trade it for anything in the world!
Last week we went to two gastroenterologist appointments. One for Garrett the other for Anna. Anna has been sick since she was born. She has led a hard life so far too. Bless her heart she is a sweet baby when she's not in pain. Some days though she is in so much pain that all she does is cry.
A little history on Anna. When I was pregnant with her I had a wonderful pregnancy. The three previous pregnancies were very hard on me and on the babies. We fully expected to be on bedrest and to be miserable but was pleasantly surprised when I felt wonderful the entire way through the pregnancy. Still, we saw a specialist because of the previous congenital birth defects of the other kids, the problems I faced in previous pregnancies and of course because of my diseases. We were surprised when the doctor found fluid building around Anna's heart while she was in utero. The pregnancy was so easy (barring typical pregnancy discomforts and the rounds of insulin shots for gestational diabetes) that we fully expected her to be perfect in every way. As the pregnancy progressed we found that the fluid was increasing instead of absorbing into her system. At 36 weeks we did an amniocentisis to make sure her lungs were developed so that she could be delivered. They were and because she was beginning to deteroriate inside we delivered her on July 21, 2004. She came into the world lips quivering, puckered out and tears in her eyes. She was a pathetic sight! She was healthy size weighing 6 pounds 10 oz. We did tests to check her heart and to make sure that the fluid was gone. It was and we thought we were going to see great improvement.
Although the fluid was gone a hole was found in her heart. Many newborns are born with holes in the heart that close on their own. Our next youngest, Isabella, was born with this defect. However the kind of hole that Anna has won't close on it's own. She has atrial septal defect with a left to right shunt (or a right to left, can't remember right this second). This means that the blood flows back into the wrong chamber. We were instructed to go to the cardiologist. Luckily we have an excellent cardiologist that takes care of three of our other kids (one occasionally and two more regularly). He was wonderful in helping us understand this new defect (we have other heart defects but not this particular kind). We will go to see how her heart is doing at a year and decide if she needs surgery to close the hole or if they will let it be.
In the course of her short life she has also suffered from many respiratory problems and horrible bowel problems. This brings me back to the visit to the gastro. I asked our pediatrician to send us to our gastro because Anna has had mucus in her stools for months. She also suffers sometimes from stools that are foamy or jelly like. We have tried just about everything (including watching what I eat and drink since she is nursed) but to no avail. At the end of our ropes we consulted the gastro who treats Garrett and Emma. He is wonderful. Of course we had only seen him a couple days prior for Garrett so he wasn't happy to see us in his office for another child! He said that he sees entirely too much of us. I told him I happened to agree!
We are looking into various problems but have started by putting her on an antibotics for anaerobic bacteria. He is hoping that maybe they have gotten out of balance and by correcting them we may find her to get better. Unfortunately I haven't seen any improvement at all. I guess we'll be doing the blood and stool work afterall. I hate to think of putting her through that. She has already had blood taken before and that was miserable.
She is so tiny. The doctor thinks she has malabsorption issues as well. She is only 11 1/2 pounds and is almost 6 months old. He is concerned about her weight but hasn't classified her as "failure to thrive" or "poor growth" yet. She is doing the things she should for her age but is the size of a two month old. Cute, but concerning. Regardless of how the antibotics do we are to go back in a month for a weight check to make sure she is growing. I don't know what they will do if she doesn't.
It pains me to have so many children who are sickly. That suffer through so much. I have had people ask why I have more children when there is a risk of having problems. I once said to someone that my children are a blessing, not only for me but for everyone they come in contact with. Because we go to so many doctors we come in contact with so many people. We are able to share our lives with those people. We share our joy for life and our positive attitudes. I think that many people are blessed just by knowing my kids. The are fabulous children. They are polite, happy and very upbeat. They have faced so much and come out on top. They are an inspiration to me. I strive to live the way they do... with a smile on my face, a song on my lips and unfaltering trust in God.
I have been very blessed and feel so thankful even on our worst days. I wouldn't trade it for anything in the world!
Monday, January 10, 2005
Garrett
Last week was the first full week of the new year. We rang it in as we always do... going to various doctor appointments. We only had two that we went to and one that we canceled. We have only one scheduled for next week, a break the following week and two the last week of the month. Not the way I had hoped to be starting 2005.
Our appointments last week were at the gastroenterologist. The first one was for Garrett, my only son, who is 9. He has led a hard life already. Ever since he was a tiny baby he has suffered horribly. When he was an infant we could hardly hold him because he would scream in pain. Of course we didn't know then he was in such horrible pain and wondered why he cried so much. Our older daughter, then two, never cried in that manner. I often questioned what I was doing wrong. I continually beat myself up thinking I was a horrible mother who couldn't console her child. Little did I know that four years later I would find the reason why this poor child was the way he was.
When Garrett was four and in preschool his major symptoms started. He got these horrible stomach pains that resulted in his inability to even move. He was incompacitated. He would cry for hours on end. It was horrible. I pleaded with the doctor to do something, anything. Finally I insisted he send us to a specialist. When we went to the gastro doctor he set up a sonogram for Garrett. He found that his kidney was 5x the size that it should be. He set us up to have surgery on the kidney almost immediately. Of course the urologist assured me that all Garrett's problems would be gone. Unfortunately he was worse. When we went for his follow up appointment after his surgery I explained that he wasn't better, that the kidney was secondary to whatever else was going on in his body. She told me I didn't know what I was talking about and that she had "cured" him. We never went back to her. We did however go back to our gastro. He continued to work with us trying to find out what was going on. Unfortunately the tests he ran all came back negative leaving us with so many unknowns.
By this time I had been diagnosed with porphyria, but even before the diagnosis had really suspected it not only for myself but for my son as well. Much to our dismay though the tests to check for porphyria in children are not absolute and the disease is very hard to pinpoint before puberty. We decided to treat Garrett as though he has a positive diagnosis for the disease. Fortunately he had a little break from the disease and he had about a year's worth of symptom-free days. Many people took that as a sign that Garrett was "cured" and that the problems he had before no longer existed. We got many "see, you were just overreacting" type comments. Not so much from the doctors, as they know that this particular disease can have flares, but we did have many from well meaning family members and friends.
That leads us to now. Garrett had been "flaring" for many months, getting worse and having a very hard time with it. Unfortunately his bowels are really affected this time around. He has a problem with encopresis. This is where his bowels just "leak". Sometimes he has now idea that he has had this problem until we tell him that he needs to go change his pants because he smells. It breaks my heart to tell him that because you know he is extremely embarrassed and that he just wants crawl under a rock. He sometimes cries because he just wants to be normal. Like I said before, it breaks my heart.
With his flares he ends up with horrible stomach pains and sometimes headaches. Sometimes he is unable to eat for days. This makes the symptoms worse as his body needs the carbs that foods supply to help stave off the attack. It's a never-ending circle. You can't eat because you are in so much pain but you need to eat to help stop the pain. How do you cope with that?
All this brings us to the appointment on Monday. Garrett's doctor, while loving to see all of us in his office because the kids are so lively and entertaining, was disappointed that we are back to square one again and in his office. Actually we have slipped even further back than square one. He put Garrett on Myralax, a drug we are very familiar with since Emma, who is 4 1/2 had been on it for almost 3 years. She suffers from bowel problems too, but that is another post altogether. Of course we know that this medicine will only help slightly as it can't help the stomach, heart, kidney and headache problems. It can however help to keep Garrett cleaned out and maybe avoid having so many accidents. I know that alone will help Garrett's self-esteem and give him back some of the confidence that he needs.
Garrett is such a wonderful son. I couldn't ask for any better. I wonder sometimes why he has to suffer so much with his physical problems and then his learning problems on top of that. He has lived a lifetime in his short nine years. A lifetime that I wouldn't wish on anyone. I have tried my hardest to make sure he has a wonderful life outside of those issues. I know these issues will help make him stronger. I pray though that he knows when he is pushed to his limits that he always has his family and more importantly God to rely on. Surely with all we have been through so far the angels have been there holding not only his hand but mine as well.
Seems I have run out of room and time to post about our second gastro appointment. We went for Anna, the baby who is 5 1/2 months old. I will post about that later. This post turned out to be about Garrett and I want to leave it that way.
Our appointments last week were at the gastroenterologist. The first one was for Garrett, my only son, who is 9. He has led a hard life already. Ever since he was a tiny baby he has suffered horribly. When he was an infant we could hardly hold him because he would scream in pain. Of course we didn't know then he was in such horrible pain and wondered why he cried so much. Our older daughter, then two, never cried in that manner. I often questioned what I was doing wrong. I continually beat myself up thinking I was a horrible mother who couldn't console her child. Little did I know that four years later I would find the reason why this poor child was the way he was.
When Garrett was four and in preschool his major symptoms started. He got these horrible stomach pains that resulted in his inability to even move. He was incompacitated. He would cry for hours on end. It was horrible. I pleaded with the doctor to do something, anything. Finally I insisted he send us to a specialist. When we went to the gastro doctor he set up a sonogram for Garrett. He found that his kidney was 5x the size that it should be. He set us up to have surgery on the kidney almost immediately. Of course the urologist assured me that all Garrett's problems would be gone. Unfortunately he was worse. When we went for his follow up appointment after his surgery I explained that he wasn't better, that the kidney was secondary to whatever else was going on in his body. She told me I didn't know what I was talking about and that she had "cured" him. We never went back to her. We did however go back to our gastro. He continued to work with us trying to find out what was going on. Unfortunately the tests he ran all came back negative leaving us with so many unknowns.
By this time I had been diagnosed with porphyria, but even before the diagnosis had really suspected it not only for myself but for my son as well. Much to our dismay though the tests to check for porphyria in children are not absolute and the disease is very hard to pinpoint before puberty. We decided to treat Garrett as though he has a positive diagnosis for the disease. Fortunately he had a little break from the disease and he had about a year's worth of symptom-free days. Many people took that as a sign that Garrett was "cured" and that the problems he had before no longer existed. We got many "see, you were just overreacting" type comments. Not so much from the doctors, as they know that this particular disease can have flares, but we did have many from well meaning family members and friends.
That leads us to now. Garrett had been "flaring" for many months, getting worse and having a very hard time with it. Unfortunately his bowels are really affected this time around. He has a problem with encopresis. This is where his bowels just "leak". Sometimes he has now idea that he has had this problem until we tell him that he needs to go change his pants because he smells. It breaks my heart to tell him that because you know he is extremely embarrassed and that he just wants crawl under a rock. He sometimes cries because he just wants to be normal. Like I said before, it breaks my heart.
With his flares he ends up with horrible stomach pains and sometimes headaches. Sometimes he is unable to eat for days. This makes the symptoms worse as his body needs the carbs that foods supply to help stave off the attack. It's a never-ending circle. You can't eat because you are in so much pain but you need to eat to help stop the pain. How do you cope with that?
All this brings us to the appointment on Monday. Garrett's doctor, while loving to see all of us in his office because the kids are so lively and entertaining, was disappointed that we are back to square one again and in his office. Actually we have slipped even further back than square one. He put Garrett on Myralax, a drug we are very familiar with since Emma, who is 4 1/2 had been on it for almost 3 years. She suffers from bowel problems too, but that is another post altogether. Of course we know that this medicine will only help slightly as it can't help the stomach, heart, kidney and headache problems. It can however help to keep Garrett cleaned out and maybe avoid having so many accidents. I know that alone will help Garrett's self-esteem and give him back some of the confidence that he needs.
Garrett is such a wonderful son. I couldn't ask for any better. I wonder sometimes why he has to suffer so much with his physical problems and then his learning problems on top of that. He has lived a lifetime in his short nine years. A lifetime that I wouldn't wish on anyone. I have tried my hardest to make sure he has a wonderful life outside of those issues. I know these issues will help make him stronger. I pray though that he knows when he is pushed to his limits that he always has his family and more importantly God to rely on. Surely with all we have been through so far the angels have been there holding not only his hand but mine as well.
Seems I have run out of room and time to post about our second gastro appointment. We went for Anna, the baby who is 5 1/2 months old. I will post about that later. This post turned out to be about Garrett and I want to leave it that way.
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