Today is a sad day in the United States. Someone has taken the lives of many innocent children and adults. I pray for God's love to shine down on the families of the victims. May he surround them with light and love.
I have not posted about RACK this week because I have been fighting with my back. I am in a great deal of pain and I have been working on healing. However, we did do RACK each day and I want to acknowledge it and share it with you all.
Days 8-14
Donated clothes, coats, and snowsuits
Hot chocolate to a cold bell ringer
Rice to a friend who needed it to finish a Christmas gift
Coins on some parking meters
Donated food
Helped Marine's shop for Toys for Tots
Gave the Salvation Army $20
May the spirit of Christmas and God's love bring you peace and happiness.
Friday, December 14, 2012
Thursday, December 6, 2012
Rack, days 5, 6 and 7
I have had a bad week. We are still doing RACK but honestly it has been hard. I am grouchy, the kids are on each others nerves, and I finally figured out today why Destiny has been so out of sorts. Because she is autistic she is reliant on a schedule. Well, she has started speech and special education last week so our schedule is off. I have also been working a weird schedule so to her everything is out of control. We just need to survive a few more weeks and then it will calm down again. Anyway, I am not making excuses for why I am running late on rack, but more explaining (excuse in disguise).
Yesterday was my birthday and I was really tired so we took the day off. I told the kids we have to make up that day and have to do 2 in one day to make up for it. So today we made up some boxes of treats and dropped them off at a tire store. Tomorrow Brittni is going to post inspirational quotes on the bathroom mirrors in the girls bathroom at school. Cameron is going to put change in a bag on the vending machines at school. Teenagers are our future. We need them to have some Christmas cheer. Hopefully at least one of them will remember the real meaning of Christmas!!
Yesterday was my birthday and I was really tired so we took the day off. I told the kids we have to make up that day and have to do 2 in one day to make up for it. So today we made up some boxes of treats and dropped them off at a tire store. Tomorrow Brittni is going to post inspirational quotes on the bathroom mirrors in the girls bathroom at school. Cameron is going to put change in a bag on the vending machines at school. Teenagers are our future. We need them to have some Christmas cheer. Hopefully at least one of them will remember the real meaning of Christmas!!
Tuesday, December 4, 2012
Day 4 of RACK
Yesterday me and my little elves decided to go buy a coffee (ok, strawberry redbull for me) and we were going to pay for the person behind us. However, noone ever showed up behind us. Instead we bought a gift card and drove to the house of a friend I haven't talked to in a while and we left it on her garage door. Hopefully she found it. She really is a wonderful mom and I hope she knows how much others look up to her.
Today we are going to leave some coins on the machines in the dollar store. You know the machines, the ones that your kids always want your quarters for??? Yeah, those ones. Now they don't have to ask, little elves will do the work for those busy parents.
Today we are going to leave some coins on the machines in the dollar store. You know the machines, the ones that your kids always want your quarters for??? Yeah, those ones. Now they don't have to ask, little elves will do the work for those busy parents.
Sunday, December 2, 2012
Day 2 of Rack
We were a very busy family yesterday so I didn't make it here to post how Rack went. Yesterday was the 1st real day of Rack. Each of the three kids took two $1 into the dollar store with a note to enjoy a little Christmas fun and left them in the toy aisle. The kids really enjoyed it but what they really wanted was to watch someone find it. Unfortunatly we had to go but they were excited. We then took them to the mall to pick up something from the craft store for a secret Christmas gift, then to lunch. After a late lunch/early dinner we went to the Caldwell Night Light parade. It was a beautiful day with beautiful people. The only thing missing was Alley. I always feel a little piece of me is missing when she is not there.
Today I bought some candy canes. We taped them to the cards we made that said Merry Christmas You've been RACK'ed. Random Acts of Christmas Kindness. We then drove to Wal-Mart. While my husband ran in to pick up Destiny's prescription I drove the kids around the parking lot. They got to pick out 3 random cars each to put the card and candy cane on. The way they chose was cute. Cameron chose because he thought the car was "cool" and Brittni seemed to choose more of the family looking cars and Destiny, well, she was just random. That pretty much tells you about my kids. Cameron could probably tell you the make, model and probably the year of the three cars he chose because he really likes cars. Brittni is a very family oriented girl so she made sure to choose cars she thought might have children. And Destiny.....well, she is about as random as you get. The only thing she could tell you about her cars is that they were at the Wal-Mart Mommy works at. :) Tomorrow is a new day and brings a new adventure.
Today I bought some candy canes. We taped them to the cards we made that said Merry Christmas You've been RACK'ed. Random Acts of Christmas Kindness. We then drove to Wal-Mart. While my husband ran in to pick up Destiny's prescription I drove the kids around the parking lot. They got to pick out 3 random cars each to put the card and candy cane on. The way they chose was cute. Cameron chose because he thought the car was "cool" and Brittni seemed to choose more of the family looking cars and Destiny, well, she was just random. That pretty much tells you about my kids. Cameron could probably tell you the make, model and probably the year of the three cars he chose because he really likes cars. Brittni is a very family oriented girl so she made sure to choose cars she thought might have children. And Destiny.....well, she is about as random as you get. The only thing she could tell you about her cars is that they were at the Wal-Mart Mommy works at. :) Tomorrow is a new day and brings a new adventure.
Friday, November 30, 2012
RACK-1 day early
I am trying to bring the real meaning of Christmas back to my family. I talked my children into celebrating RACK with me each day of December leading up to Christmas. Today as I sat with my daughter, Destiny, and watched her eat lunch I realized that not very many people are as lucky as I am. Although she spilled her drink, her syrup and basically most of her plate, I got to spend time with my daughter. She might not remember this day but I know that if I had not gone she would have remembered that. I have not missed a game, a practice, a fieldtrip, etc. for my children (unless one parent was at one and another parent at the other). I decided why wait until tomorrow to start RACK? After we finished eating I left our waitress a $10 tip. I hope it brought a smile to her face.
Sunday, July 29, 2012
A little rainbow
Sometimes life can be pretty brutal. Our family has been through a lot and it is very difficult to keep a smile on and a positive attitude. When we had a bake sale at work for Destiny's JDRF walk many people came up to me and told me that they would never have guessed that I was going through something so difficult. I take that as a compliment. What they don't know is that Diabetes is just the tip of the iceberg. Destiny has complete lack of bladder and bowel control. She has epilepsy, a cognitive disorder, vision problems, sensory issues, headaches, muscle spasms, lack of coordination, tingling of her fingers, back pain, severe mood swings, and sensitivity to heat. Each doctor sees her for a different symptom but none of them will look at the big picture and help me to understand what the problem is that is causing the symptoms. We are going to see a developmental pediatrician and he is probably going to diagnose her as being on the autism spectrum. I found one doctor to listen to me and he feels she has a problem with her central nervous system. He sent me to a doctor that he thought could help me. That doctors response???? "You know she is autistic, right?" I was floored. She deserves good care whether or not she is autistic. I told him that what I wanted was for a doctor to see my daughter as a person, not as a medical record. She is human. She has feelings. She knows she is a bright beautiful girl trapped in her own body.
I believe that she has changed my life. She makes me see things from a different perspective. She has taught me compassion and true love. I only wish others around us could learn the same things. I believe that children learn a lot from their parents. I think we say things and don't realize that we just passed that on to our children. A good example of that is today Destiny said, "I sure hope they don't re-elect Obama." How would she know what her views were on Obama unless she heard them from someone else in her life? The same goes for children that have either gone to school with my daughter or have played with her elsewhere. I know that my daughter is different. I just believe that we need to teach our children that different is ok. Children have made fun of my daughter and made very rude comments to her that she internalizes. She starts to believe what they say. With that being said I want to make a few things clear......
1. Destiny did not get Type 1 Diabetes because she ate too much sugar or because of an unhealthy diet.
2. Destiny does not CHOOSE to be different.
3. None of the things that are wrong with Destiny define who she is.
4. She is just a little girl who wants nothing more than to have friends and fit in......just like every other child.
And then there are the angels in my life. I start to get down on life and on mankind in general. I tell God that I am resentful and although I know that life is not fair, I don't like it. And then he shows me there are angels who walk among us every day. We just have to have our eyes open enough to see them.
A manager I work with came in and asked me to use 3 words to show how my day was going. I said, "St. Lukes" "angry" "frustrated". And he said something to me that I didn't want to really hear but now I know he was one of my angels. He told me that life is frustrating. That the medical field can make anyone angry. That just hearing St. Lukes can make anyone upset. However, he believes that I should be proud of myself. He says that what I do every single day most people could never do their whole lives. He says I am a mom that most people wish they had. He told me to remember that every time I am fighting for my daughter. To remember that what I am doing is commendable and honorable.
Then I go to the Canyon County Fair to see Brittni's blue ribbon (and best of show ribbon). We meet up with my mom and dad and son. My mom tells me their is a guy selling cell phone holders that thinks he has one that will fit Destiny's insulin pump. We go over to check them out because my mom says they are only about $10. We walk up and he asks to see her pump. Then he asks what color she wants. Pink of course. He walks over to a box, picks out a pink holder and brings it over. It fits like a glove. I was excited and so was Destiny. I asked how much. He said it was $10 but he would sell it for $5. I started digging out the money and he said "You know what? Forget it. It's on me." I tried to argue because after all, I would have paid the $10. I believe he was sad that Destiny had such a devastating disease. With some tears in his own eyes he says to me "It's my company and I say its on me." Wow. My husband shook his hand and told him thanks. I couldn't, I was crying. After all, God just showed me another angel.
I believe that she has changed my life. She makes me see things from a different perspective. She has taught me compassion and true love. I only wish others around us could learn the same things. I believe that children learn a lot from their parents. I think we say things and don't realize that we just passed that on to our children. A good example of that is today Destiny said, "I sure hope they don't re-elect Obama." How would she know what her views were on Obama unless she heard them from someone else in her life? The same goes for children that have either gone to school with my daughter or have played with her elsewhere. I know that my daughter is different. I just believe that we need to teach our children that different is ok. Children have made fun of my daughter and made very rude comments to her that she internalizes. She starts to believe what they say. With that being said I want to make a few things clear......
1. Destiny did not get Type 1 Diabetes because she ate too much sugar or because of an unhealthy diet.
2. Destiny does not CHOOSE to be different.
3. None of the things that are wrong with Destiny define who she is.
4. She is just a little girl who wants nothing more than to have friends and fit in......just like every other child.
And then there are the angels in my life. I start to get down on life and on mankind in general. I tell God that I am resentful and although I know that life is not fair, I don't like it. And then he shows me there are angels who walk among us every day. We just have to have our eyes open enough to see them.
A manager I work with came in and asked me to use 3 words to show how my day was going. I said, "St. Lukes" "angry" "frustrated". And he said something to me that I didn't want to really hear but now I know he was one of my angels. He told me that life is frustrating. That the medical field can make anyone angry. That just hearing St. Lukes can make anyone upset. However, he believes that I should be proud of myself. He says that what I do every single day most people could never do their whole lives. He says I am a mom that most people wish they had. He told me to remember that every time I am fighting for my daughter. To remember that what I am doing is commendable and honorable.
Then I go to the Canyon County Fair to see Brittni's blue ribbon (and best of show ribbon). We meet up with my mom and dad and son. My mom tells me their is a guy selling cell phone holders that thinks he has one that will fit Destiny's insulin pump. We go over to check them out because my mom says they are only about $10. We walk up and he asks to see her pump. Then he asks what color she wants. Pink of course. He walks over to a box, picks out a pink holder and brings it over. It fits like a glove. I was excited and so was Destiny. I asked how much. He said it was $10 but he would sell it for $5. I started digging out the money and he said "You know what? Forget it. It's on me." I tried to argue because after all, I would have paid the $10. I believe he was sad that Destiny had such a devastating disease. With some tears in his own eyes he says to me "It's my company and I say its on me." Wow. My husband shook his hand and told him thanks. I couldn't, I was crying. After all, God just showed me another angel.
Sunday, July 1, 2012
I am going to share some personal things here that I normally wouldn't share in the fear that Destiny may some day read this. First a disclaimer: I love my daughter more than words could ever say and I don't want anyone to get confused about that. I also would not change her for the world. I am happy with how she is and I believe she makes me a better person.
Destiny has always been a difficult child. I guess the only way to explain it is that she has always been extreme. She is either EXTREMELY happy or EXTREMELY angry. There really is no happy median with her. When she was little and we would take her to McDonalds she would play with all the other kids and have a blast. Then about 3 years old she started to pull away from others. By the time she started Kindergarten she began to isolate. There are times she still tries to socialize and says she wants friends but it seems that she does not have the skills to be able to make or keep friends. She gets very angry and lashes out by yelling and scratching and even pulls her own hair and scratches her own skin. I am always on constant alert trying to avert a bad situation before it gets too out of hand. Sometimes I am successful, and others not so much.
When I took Destiny to the Dr. here a couple weeks ago I mentioned that we were taking her to a developmental pediatrician. She asked me why and I tried to give her a few examples without hurting Destiny's feelings. I also mentioned that the school is wanting to put her into special education next year. The doctor looked at me and said she thought all of that was ridiculous because Destiny seemed fine to her. I must say that I lost it. I told her I felt that she could not determine what was in the best interest of my child when she got to spend 10 minutes with her a couple times a year. I explained that Destiny does not feel comfortable with her so she pretends to be invisible and never even talks to her. She may look "normal" to her but her behaviors tell a different story. I would never change my daughter because I feel that she has taught me a lot of things about life. However, I feel that my daughter would benefit from some programs only available to children with a confirmed diagnosis.
Am I wrong to push for a diagnosis for my daughter or should I accept that my daughter at almost 9 years old is just a "late bloomer" and someday she will finally be toilet trained, that she will someday be able to make and keep age appropriate friendships, that she will one day wake up and be able to read and function normally in society? I'm not sure of the right answer but I am sure willing to fight to find an answer, right or wrong.....
Destiny has always been a difficult child. I guess the only way to explain it is that she has always been extreme. She is either EXTREMELY happy or EXTREMELY angry. There really is no happy median with her. When she was little and we would take her to McDonalds she would play with all the other kids and have a blast. Then about 3 years old she started to pull away from others. By the time she started Kindergarten she began to isolate. There are times she still tries to socialize and says she wants friends but it seems that she does not have the skills to be able to make or keep friends. She gets very angry and lashes out by yelling and scratching and even pulls her own hair and scratches her own skin. I am always on constant alert trying to avert a bad situation before it gets too out of hand. Sometimes I am successful, and others not so much.
When I took Destiny to the Dr. here a couple weeks ago I mentioned that we were taking her to a developmental pediatrician. She asked me why and I tried to give her a few examples without hurting Destiny's feelings. I also mentioned that the school is wanting to put her into special education next year. The doctor looked at me and said she thought all of that was ridiculous because Destiny seemed fine to her. I must say that I lost it. I told her I felt that she could not determine what was in the best interest of my child when she got to spend 10 minutes with her a couple times a year. I explained that Destiny does not feel comfortable with her so she pretends to be invisible and never even talks to her. She may look "normal" to her but her behaviors tell a different story. I would never change my daughter because I feel that she has taught me a lot of things about life. However, I feel that my daughter would benefit from some programs only available to children with a confirmed diagnosis.
Am I wrong to push for a diagnosis for my daughter or should I accept that my daughter at almost 9 years old is just a "late bloomer" and someday she will finally be toilet trained, that she will someday be able to make and keep age appropriate friendships, that she will one day wake up and be able to read and function normally in society? I'm not sure of the right answer but I am sure willing to fight to find an answer, right or wrong.....
Friday, June 15, 2012
Life and Diabetes is a Roller Coaster
This last week as given us many changes. Destiny seen her endocrinologist last Friday and he made some insulin changes. Then Monday we saw the Neurologist and we took away a medicine. Then Tuesday we saw the Urologist who gave us another medicine. With all that going on, we have had some life changes.
My cousin passed away. No, we weren't close as adults but we were as kids. We were raised together and I am very sad. I am sad for his children and for his parents who have lost 2 of their children recently. I am sad for his sister. I am sad for my grandmother who shouldn't have to bury her grandchildren.
We got a call last night that we needed to go see my husbands grandma. You just have to know this woman to know that good things just flow from her. We have been told that she only has a week or so to live. We went right away and the sight was very hard for me. Someone I have always known to have this beautiful smile, always have make-up on, her hair done and ready to have visitors has slipped into a shell of herself. I held her hand and told her it would be okay. I only hope she knows that we want her to feel better. We love her.
When we get home from visiting Grandma B, I am emotionally tired. We get ready for bed and Destiny's blood sugar is 126. How much more perfect can you get before bed??? Then an hour later she wakes me up screaming. She isn't feeling well and ends up puking in her bed. Her blood sugar is 287. I hesitate giving her insulin because the stress from being sick will make it go up and then she will drop. However, I give her the insulin and decide to keep a close eye. At 3 she was 256 so I gave her more insulin. I then had to get ready for work. I really thought about calling in, I really did. But I decided that since inventory is only 2 weeks away that I had better go in.
I was there only about 3 1/2 hours when I got a text from my teenage daughter that Destiny had woke up and her blood sugar was 52. Brittni and Cameron take turns watching Destiny. Cameron gets the fun time and picks on her and Brittni gets to do the responsible stuff and give her meds and check her sugars. I think they can handle it when her blood sugars are normal, even when she starts to drop a little low they will call and let me know. They have a list of instructions and they are very responsible kids. With that being said, I think it is too much to ask a teenager to make adult decisions for her sister. 52 is too low for Brittni to feel comfortable making decisions. Especially when Destiny was staring at her blankly and wouldn't respond.
I left work and came home and Destiny has been better most of the day. My only concern is that Destiny is severely constipated (typical for her) and I need to remedy the situation. I have tried it all. I gave her some new meds when I got home and I have not seen any improvement yet. Cross your fingers and hope the roller coaster of life and diabetes is going to take a short break. Just a small one. One long enough to be able to enjoy a little time with my beautiful family.
My cousin passed away. No, we weren't close as adults but we were as kids. We were raised together and I am very sad. I am sad for his children and for his parents who have lost 2 of their children recently. I am sad for his sister. I am sad for my grandmother who shouldn't have to bury her grandchildren.
We got a call last night that we needed to go see my husbands grandma. You just have to know this woman to know that good things just flow from her. We have been told that she only has a week or so to live. We went right away and the sight was very hard for me. Someone I have always known to have this beautiful smile, always have make-up on, her hair done and ready to have visitors has slipped into a shell of herself. I held her hand and told her it would be okay. I only hope she knows that we want her to feel better. We love her.
When we get home from visiting Grandma B, I am emotionally tired. We get ready for bed and Destiny's blood sugar is 126. How much more perfect can you get before bed??? Then an hour later she wakes me up screaming. She isn't feeling well and ends up puking in her bed. Her blood sugar is 287. I hesitate giving her insulin because the stress from being sick will make it go up and then she will drop. However, I give her the insulin and decide to keep a close eye. At 3 she was 256 so I gave her more insulin. I then had to get ready for work. I really thought about calling in, I really did. But I decided that since inventory is only 2 weeks away that I had better go in.
I was there only about 3 1/2 hours when I got a text from my teenage daughter that Destiny had woke up and her blood sugar was 52. Brittni and Cameron take turns watching Destiny. Cameron gets the fun time and picks on her and Brittni gets to do the responsible stuff and give her meds and check her sugars. I think they can handle it when her blood sugars are normal, even when she starts to drop a little low they will call and let me know. They have a list of instructions and they are very responsible kids. With that being said, I think it is too much to ask a teenager to make adult decisions for her sister. 52 is too low for Brittni to feel comfortable making decisions. Especially when Destiny was staring at her blankly and wouldn't respond.
I left work and came home and Destiny has been better most of the day. My only concern is that Destiny is severely constipated (typical for her) and I need to remedy the situation. I have tried it all. I gave her some new meds when I got home and I have not seen any improvement yet. Cross your fingers and hope the roller coaster of life and diabetes is going to take a short break. Just a small one. One long enough to be able to enjoy a little time with my beautiful family.
Saturday, June 9, 2012
Exhausted
Yesterday Destiny had an appointment with her Pediatrician/Endocrinologist. I am very lucky that he does both. Her A1C was a 7.7 I wasn't very happy with it but he tried to reassure me and tell me what a rock star I was. I didn't feel like a rock star. I want her A1C to be around 7.0 Progress, not perfection I guess. We made some pretty drastic changes in her insulin. I am not sure what other children's numbers are but she seems to get a lot of insulin for such a little girl.
For those of you that speak diabetes here are her numbers:
From midnight until 9 am her basal is 1.15 per hour
From 9 am until midnight her basal is 1.3 per hour
Her insulin to carb ratio is 1:8 unless it is after 9 at night which is then 1:10
How does this compare to others her age? No idea. It seems like a lot to me.
Because we jumped the insulin so much I had to do 2 hour checks just to make sure she didn't go low. So every 2 hours last night my alarm would go off and I would drag my tired butt out of bed and check her and then reset my alarm for 2 more hours. I am so exhausted I can barely think. The good news is that all night she did great and her numbers were wonderful. This morning her blood sugar was 79 and I will take that as a success!!!
I also asked him to refer us to a developmental pediatrician and I didn't think he would do it but he did. I am so excited. Now maybe I can get her "Officially" diagnosed with aspergers. It is obvious to everyone but without that diagnoses from the doctor I can't get her services. Strange but true. Last year when I talked to him about some problems we were having with Destiny (still wetting and pooping her pants, falling behind in school, no social skills, etc.) he told me that she was just a late bloomer and that I shouldn't be worried. I am glad he finally changed his mind. After all, she is almost 9.
I am crocheting Destiny a blanket. When picking out the yarn yesterday with my older daughter, Brittni, we had a realization. I couldn't just buy just any yarn. Destiny has a lot of sensory issues and therefore can't have just any material on her skin. And she has what I call OCD so you have to make sure it is the right color and the right texture. We must have done well because Destiny was very excited when we got home with it. I knew I couldn't take her with me to pick it out because she would have become very overwhelmed in the aisle with so many choices and it would have become a huge fight. I let her pick out the design of the blanket and then I did a different one. I hope she doesn't notice. Funny how she is so OCD about some things and other things she doesn't even notice.
For those of you that speak diabetes here are her numbers:
From midnight until 9 am her basal is 1.15 per hour
From 9 am until midnight her basal is 1.3 per hour
Her insulin to carb ratio is 1:8 unless it is after 9 at night which is then 1:10
How does this compare to others her age? No idea. It seems like a lot to me.
Because we jumped the insulin so much I had to do 2 hour checks just to make sure she didn't go low. So every 2 hours last night my alarm would go off and I would drag my tired butt out of bed and check her and then reset my alarm for 2 more hours. I am so exhausted I can barely think. The good news is that all night she did great and her numbers were wonderful. This morning her blood sugar was 79 and I will take that as a success!!!
I also asked him to refer us to a developmental pediatrician and I didn't think he would do it but he did. I am so excited. Now maybe I can get her "Officially" diagnosed with aspergers. It is obvious to everyone but without that diagnoses from the doctor I can't get her services. Strange but true. Last year when I talked to him about some problems we were having with Destiny (still wetting and pooping her pants, falling behind in school, no social skills, etc.) he told me that she was just a late bloomer and that I shouldn't be worried. I am glad he finally changed his mind. After all, she is almost 9.
I am crocheting Destiny a blanket. When picking out the yarn yesterday with my older daughter, Brittni, we had a realization. I couldn't just buy just any yarn. Destiny has a lot of sensory issues and therefore can't have just any material on her skin. And she has what I call OCD so you have to make sure it is the right color and the right texture. We must have done well because Destiny was very excited when we got home with it. I knew I couldn't take her with me to pick it out because she would have become very overwhelmed in the aisle with so many choices and it would have become a huge fight. I let her pick out the design of the blanket and then I did a different one. I hope she doesn't notice. Funny how she is so OCD about some things and other things she doesn't even notice.
Friday, June 8, 2012
Why Blog Now?
The reason I decide to start this blog is pretty simple. I post funny things my daughter says on facebook. I also post some sad things that happen. Last month, right about Mothers Day, a friend at work was telling me that I should journal the things that happen in my life and then think about writing a book. I decided that was the most amazing thing I had ever heard. It would be a book about how life has thrown so many curve balls at my family but we are still going. I want to show how we have dealt with it and how we stay so happy. Many people ask how I can be so happy with so many negatives in my life. That is why I started this blog, so that Linda (my friend who gave me the journal) wouldn't be the only one to understand why my life is so amazing and maybe I would help others understand how we have made it through.
I think I need to explain my daughter a little bit. She is the youngest of 4. She has 2 older sisters and 1 older brother. I noticed at a young age that she was different. She was always a little slow to do things but we decided it was because she had her siblings to do it for her. I called her quirky. Not sure that is even a word but its a good description of her. She has her own imaginary world. Her imagination is huge. She never played with toys, all the things she played were in her head. She would laugh at her own jokes that no one else even understood. She could play for hours outside by herself. I guess I just thought this was just her personality. She never learned to use the bathroom consistently. Her doctor would tell me she was a late bloomer. After being diagnosed with Type 1 diabetes at the age of 4 we babied her a little too much. At least that is what I thought. We sent her off to Kindergarten and I thought she was doing well. She always had a ton of homework but I thought the schools were just piling it on. One day I got a note from the teacher saying that my daughter does nothing in class and just wanders around. I didn't believe her and I got really angry. I am not sure what the note I sent back said but I am sure it was not very nice. The teacher offered to let me come into the classroom and observe. I spent almost every single day in class with her after that. I realized then that there was a huge problem.
The problems continued into 1st grade and that year I just about pulled her out of school. Once they even left her in the classroom by herself and she didn't know where to go so she went outside and sat by herself until the end of the school day. They never noticed she was gone. In 1st grade we did some testing and found out she has epilepsy and has "irregular brain spikes every 10-15 SECONDS" Yep, seconds. Imagine trying to think and being interrupted every 10-15 seconds. She was falling behind and I asked for help and the teacher said, "she is behind but she is a good girl and doesn't interrupt my class." We never got the help I was seeking. The teacher told me that Destiny totally isolates herself from others and does not know how to interact with children. I tried to watch her with an open mind and realized it was very true. She doesn't understand how to read non verbal clues from people. She doesn't understand personal space. She can't even talk to someone her own age because they don't have any idea what she is talking about. She has aspergers.
Destiny doesn't understand scarcasm at all. If you say it she thinks you mean it. This is why my life is so entertaining. Although her brain does not work like the rest of ours, her brain is incredible. Add that to her imagination and you get Destiny. The funniest girl I know. An example, you ask??? Ok, here goes.
Destiny had to do a school report on goods and services. She had to write down a local business and then draw a picture of the good or service they provide. Destiny wrote down "CableOne". For those of you that don't know what that is, it provides us with our cable, Internet and phone. Destiny drew a picture of a dog. I ran that through my head for quite some time before I questioned her about it. I really wanted to figure it out on my own. She said it was a new thing that CableOne was getting in to. Puzzled I asked her how she knew about this. She said she heard it on the commercial. Now I knew it was a miscommunication and I asked her exactly what the commercial said. She so sweetly and honestly looked at me and said "CableOne, doing business with the big dogs."
My stomach hurt from laughing so hard. And even as I typed it I was laughing. You don't realize how many metaphors we use in life and how some people just don't understand them. Why would you say you were doing business with big dogs if you gave us cable, Internet and phones??? Destiny still thinks I am wrong, she swears they are walking dogs now.
I think I need to explain my daughter a little bit. She is the youngest of 4. She has 2 older sisters and 1 older brother. I noticed at a young age that she was different. She was always a little slow to do things but we decided it was because she had her siblings to do it for her. I called her quirky. Not sure that is even a word but its a good description of her. She has her own imaginary world. Her imagination is huge. She never played with toys, all the things she played were in her head. She would laugh at her own jokes that no one else even understood. She could play for hours outside by herself. I guess I just thought this was just her personality. She never learned to use the bathroom consistently. Her doctor would tell me she was a late bloomer. After being diagnosed with Type 1 diabetes at the age of 4 we babied her a little too much. At least that is what I thought. We sent her off to Kindergarten and I thought she was doing well. She always had a ton of homework but I thought the schools were just piling it on. One day I got a note from the teacher saying that my daughter does nothing in class and just wanders around. I didn't believe her and I got really angry. I am not sure what the note I sent back said but I am sure it was not very nice. The teacher offered to let me come into the classroom and observe. I spent almost every single day in class with her after that. I realized then that there was a huge problem.
The problems continued into 1st grade and that year I just about pulled her out of school. Once they even left her in the classroom by herself and she didn't know where to go so she went outside and sat by herself until the end of the school day. They never noticed she was gone. In 1st grade we did some testing and found out she has epilepsy and has "irregular brain spikes every 10-15 SECONDS" Yep, seconds. Imagine trying to think and being interrupted every 10-15 seconds. She was falling behind and I asked for help and the teacher said, "she is behind but she is a good girl and doesn't interrupt my class." We never got the help I was seeking. The teacher told me that Destiny totally isolates herself from others and does not know how to interact with children. I tried to watch her with an open mind and realized it was very true. She doesn't understand how to read non verbal clues from people. She doesn't understand personal space. She can't even talk to someone her own age because they don't have any idea what she is talking about. She has aspergers.
Destiny doesn't understand scarcasm at all. If you say it she thinks you mean it. This is why my life is so entertaining. Although her brain does not work like the rest of ours, her brain is incredible. Add that to her imagination and you get Destiny. The funniest girl I know. An example, you ask??? Ok, here goes.
Destiny had to do a school report on goods and services. She had to write down a local business and then draw a picture of the good or service they provide. Destiny wrote down "CableOne". For those of you that don't know what that is, it provides us with our cable, Internet and phone. Destiny drew a picture of a dog. I ran that through my head for quite some time before I questioned her about it. I really wanted to figure it out on my own. She said it was a new thing that CableOne was getting in to. Puzzled I asked her how she knew about this. She said she heard it on the commercial. Now I knew it was a miscommunication and I asked her exactly what the commercial said. She so sweetly and honestly looked at me and said "CableOne, doing business with the big dogs."
My stomach hurt from laughing so hard. And even as I typed it I was laughing. You don't realize how many metaphors we use in life and how some people just don't understand them. Why would you say you were doing business with big dogs if you gave us cable, Internet and phones??? Destiny still thinks I am wrong, she swears they are walking dogs now.
Wednesday, June 6, 2012
So lets fast forward a couple of years to our second JDRF Walk for a Cure. For those of you that don't know, it is where we raise money and walk. All proceeds go to JDRF and it is a great day that is the one day of the year that it is cool to have diabetes. Anyway, I was trying to decide what a good team name would be. We just walked with her name the first year. In 2008 while I was looking for a team name Destiny was sitting by me and just chit chatting. She said that she couldn't wait until she got older so she didn't have to have diabetes any more. My heart sank. I explained to her that she would never grow out of it, that she would live with it for the rest of her life. She looked so sad and said, "Yeah, I know mom, it was just my dream." So that is how our team name of Destiny's Dream was born.
So far this blog has been kindof sad. I am just laying the foundation for what life is like in our house. I went through a terrible time in my life and I wasn't sure how I was going to get out. In July of 2007 I lost my friend to breast cancer. In August 2007 I lost my sister in a car accident. I never recovered from that and only a few months later in May 2008 is when Destiny was diagnosed. My life was falling apart. A month later my oldest daughter began having seizures. I will admit that I blamed God. How could HE do this to me??? How could HE do this to my children??? Several people tried telling me I needed to ask for his forgiveness. Several people tried telling me he wouldn't give me more than I could handle. I call BS on both of those. Years later I finally get it. I turned my back on God but he never left my side. He understood the pain I was in and walked by my side waiting for me to allow him back in. He did not do this to me or my children. Life did this to us. And that's ok. As angry as I was at first I finally came to a realization a couple weeks ago that I would like to share....
I had someone tell me that a person I thought I was close to told them that my life was terrible and that they are thankful they don't have my life. I believe they were trying to show sympathy. However, I was very offended. Let me tell you why. Four years ago I would have said I had the worst life and that I couldn't do it and all that jazz. Now, I have an 8 year old Type 1 diabetic child that also suffers from severe epilepsy, she has kidney problems, still has accidents in her pants, has eye problems, kidney reflux and aspergers. And I have the best life ever. She has taught me so many things. Here are just a few.
1. Life is precious. Enjoy it while you can.
2. Say what you mean because its very confusing to guess what someone is trying to tell you.
3. Compassion.
4. Life is fun. You just have to look at it from a childs point of view.
5. Compassion.
6. Life is simple, it is adults that make it complicated.
7. Compassion.
8. Life does not revolve around me...I know, hard to believe.
This is just a few and I will add more when I think of them. But as you can see, my life is not terrible. I have an amazing life with a child who is funny and innocent and enjoys the small things in life. I am just sad that not everyone in the world could spend 10 minutes in my shoes. Then they would realize that my life is NOT terrible, it is actually pretty AMAZING!!
So far this blog has been kindof sad. I am just laying the foundation for what life is like in our house. I went through a terrible time in my life and I wasn't sure how I was going to get out. In July of 2007 I lost my friend to breast cancer. In August 2007 I lost my sister in a car accident. I never recovered from that and only a few months later in May 2008 is when Destiny was diagnosed. My life was falling apart. A month later my oldest daughter began having seizures. I will admit that I blamed God. How could HE do this to me??? How could HE do this to my children??? Several people tried telling me I needed to ask for his forgiveness. Several people tried telling me he wouldn't give me more than I could handle. I call BS on both of those. Years later I finally get it. I turned my back on God but he never left my side. He understood the pain I was in and walked by my side waiting for me to allow him back in. He did not do this to me or my children. Life did this to us. And that's ok. As angry as I was at first I finally came to a realization a couple weeks ago that I would like to share....
I had someone tell me that a person I thought I was close to told them that my life was terrible and that they are thankful they don't have my life. I believe they were trying to show sympathy. However, I was very offended. Let me tell you why. Four years ago I would have said I had the worst life and that I couldn't do it and all that jazz. Now, I have an 8 year old Type 1 diabetic child that also suffers from severe epilepsy, she has kidney problems, still has accidents in her pants, has eye problems, kidney reflux and aspergers. And I have the best life ever. She has taught me so many things. Here are just a few.
1. Life is precious. Enjoy it while you can.
2. Say what you mean because its very confusing to guess what someone is trying to tell you.
3. Compassion.
4. Life is fun. You just have to look at it from a childs point of view.
5. Compassion.
6. Life is simple, it is adults that make it complicated.
7. Compassion.
8. Life does not revolve around me...I know, hard to believe.
This is just a few and I will add more when I think of them. But as you can see, my life is not terrible. I have an amazing life with a child who is funny and innocent and enjoys the small things in life. I am just sad that not everyone in the world could spend 10 minutes in my shoes. Then they would realize that my life is NOT terrible, it is actually pretty AMAZING!!
When I think back to the day she was diagnosed it seems like a foggy dream. I know it happened and I can tell you many details about it but it feels like I wasn't even there, just an observer, not a participant. I remember spending the week in the Children's Hospital and trying to learn everything we needed to know. We learned enough to keep our daughter alive and the rest would come later. I even remember how I thought that maybe I should give her up for adoption because there was no way in the world I would be able to care for a child with so many needs. It embarrasses me that I even thought that someone else could be a better mother to her than I could. I now know that no one could take better care of her than me. I am her pancreas and I do the best job I can.
What I don't remember is how we celebrated my son, Cameron's 10th birthday. His birthday is May 22nd. We were still in the Children's Hospital. I remember calling him in the morning to tell him Happy Birthday and that I loved him before he went to school. What I don't remember is if he ever got a birthday present or a birthday cake. I am sad about that.
I am sad that diabetes does not just effect Destiny. It touches the lives of all of us. It has made us miss birthdays, softball banquets, volleyball parties, team dinners, CNA testing, and much more. I understand how it looks to my other children. It looks like I favor Destiny, like I spend more time with her than with them. I can't imagine how it feels to them. What they don't know, and I don't know how to tell them......I think they are amazing. They have given up time, parties, friends, and most of all, a piece of their heart, for their sister. My oldest wrote an essay about how Destiny is her hero. Well, Destiny does what she has to do to stay alive. My other children are my heroes because they give up so much of their lives for their sister for no other reason than because they love her. We always say Family Comes First and my children live that every day. I love them so much!!!
What I don't remember is how we celebrated my son, Cameron's 10th birthday. His birthday is May 22nd. We were still in the Children's Hospital. I remember calling him in the morning to tell him Happy Birthday and that I loved him before he went to school. What I don't remember is if he ever got a birthday present or a birthday cake. I am sad about that.
I am sad that diabetes does not just effect Destiny. It touches the lives of all of us. It has made us miss birthdays, softball banquets, volleyball parties, team dinners, CNA testing, and much more. I understand how it looks to my other children. It looks like I favor Destiny, like I spend more time with her than with them. I can't imagine how it feels to them. What they don't know, and I don't know how to tell them......I think they are amazing. They have given up time, parties, friends, and most of all, a piece of their heart, for their sister. My oldest wrote an essay about how Destiny is her hero. Well, Destiny does what she has to do to stay alive. My other children are my heroes because they give up so much of their lives for their sister for no other reason than because they love her. We always say Family Comes First and my children live that every day. I love them so much!!!
Tuesday, June 5, 2012
On May 21, 2008 Destiny's life changed forever. And so did the rest of the world. Destiny had been very sick for almost a month. She had been to the doctor three times and I kept being told she just had the flu. I finally took her into the emergency room. They told me she was dehydrated and thought she had the flu. They were going to run some tests and let us go soon. Yeah right. Stan went off to work and left me at the hospital with Destiny. Soon the nurses came in and started giving Destiny meds through the IV but wouldn't tell me what it was. They said I needed to talk to the Dr. An hour later the Dr. came in, pulled up a chair and held my hand. He began telling me how Destiny was starting to slip into a coma and if I had not brought her in she might not have made it. Her blood sugar was really high and apparently she had Type 1 diabetes. I was dumbfounded. To tell you the truth, I don't really remember much of what was said to me. I just remember looking down from above and seeing myself fall apart while this doctor held my hand and told me it would be ok. He left to call an ambulance to have Destiny transported to the Childrens Hospital. Two nurses came in and sat with me until the amublance got there. Our lives had changed forever.......
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