It is not logical but for a few years I was embarrassed that I had to file for Social Security Disability. I had felt like a failure. My first few years with RSD were beyond difficult so that when I had my SCS give me my life back I valued the ability to work. When my health began to decline again I fought hard to keep working. Then after one surgery it became obvious that I simply couldn't do it all. Something had to drop and that felt like I had failed. I gave up working and driving.
I do not like to bring attention to my RSD. I know, then why do I blog about it? I don't like to talk about MY RSD but I do understand that I need to advocate for awareness about RSD. I also do not like calling attention to my pain when I am in a flair. I have been known to lie when asked about my pain, claiming that I was fine when in fact I was suffering. I remember one particular day back when I used to work. My RSD was flaring but I couldn't call out sick. I waited at my desk till everyone left to go to lunch, explaining that I couldn't go with them because I had to catch up on some work. Reality was that I didn't want anyone to see me limping. Once the office was clear I limped to the kitchen to warm up my lunch but on my way back to my desk a co-worker saw me and was concerned. He asked "Are you okay? Why are you limping?" I knew his concern was sincere. I just couldn't bring myself to explain the whole story of my RSD to him, so I lied. "I'm fine! I'm not limping." Then I forced myself to walk so slowly and put some weight on my leg for a few steps till he turned around and walked into the kitchen. I wanted to cry from the pain and the sadness of life with RSD. I didn't want RSD to define me!
Allowing myself to claim disability was a scary change of life. What was I supposed to do now? What are you supposed to do when you are used to working 40 hours a week, having the independence to drive yourself around, and the extra money that comes from working then that is all taken away from you? Social security doesn't pay much. It is not like I was suddenly a stay at home mom and I finally had time to go get my nails done or go to the gym for a few hours of exercise. My choice is not to be a stay at home Mom. I couldn't work but I also couldn't take care of the home either. Everything became harder for me and I felt lost again. My days were spent waiting until Gabriel came home from school so I could spend time with him. I was lonely, bored and in pain. I felt sorry for myself and that is not a productive feeling when you have RSD. I was in a rut for the longest time not knowing how to be disabled.
It has been hard to rediscover my purpose. My purpose is about becoming as healthy as possible so I can be the best Mom I can be. I have set my eyes on the simple. Be an awesome wife, a great Mom, and be as healthy as I possibly can be. Taking care of the house, my family and friends while finding time to write in my blog all come secondary to my primary responsibilities of Wife/Mother/Self. The term disabled hurts because it is a reminder of what I am unable to do. I would rather think of my abilities. Sometimes I do such a great job of ignoring my disability that others in my life forget my status. This is both a complement and a problem at the same time. It is something I still struggle with. The only solution I can see is that I have to continue to be me and hope that people will take into consideration that I am being strong whenever I can. Accept what I can give and respect how I do it. My only wish is that more people will accommodate my disability without me stating what I am unable to do.
Saturday, July 27, 2013
Friday, July 19, 2013
Attachment Parenting - principal #5.
Ensure safe sleep physically and emotionally.
While researching on the internet for advice in transitioning Lucas out of our bed and into his own I happened across a site called Attachment Parenting. I never heard of this parenting philosophy before. Surprisingly it matches the way we are raising our children. The site will say "the essence of Attachment Parenting is about forming and nurturing strong connections between parents and children." Isn't that why we want to become parents? To create a strong bond, a meaningful relationship with our children? A child is the most precious gift that life has to offer. From the moment of conception this tiny human depends on it's mother to nourish and protect it. When an infant is born it depends on it's parents to decipher every cry and coo. They are tiny human's with emotions and needs. Attachment Parenting isn't a new philosophy it is a return to maternal instinct.
I had nursed Lucas for his first year. When he would cry my breasts would swell and ache responding to his cry for hunger. My body gave a physical response to my child's cry. That is natural! What is not natural is allowing your infant to cry when they need something from their parents. I get that most people will say "They need to learn to self soothe." My response is this "How many 20 year olds do you know that still need to be cuddled to have their needs met? None, because in time everyone learns to self soothe." My question is, "Why does a 6 month old need to learn how to self soothe?" Most of the time the answer to this question has to deal with the Mother's need. It can be very difficult to find the balance between taking care of yourself and your child when those needs conflict. Balance is necessary to keep a happy healthy and loving family environment. While caring for your child you must also care for yourself. I think that is why we often resort to the "cry it out" method.
That is why I tried the "cry it out" method when Gabriel was a baby. It was exhausting always needing to walk and bounce him till he could fall asleep. I needed time for myself. When I did try to let him cry it out I felt so guilty and it destroyed Leo to listen to his baby cry. Many people told me that I shouldn't feel guilty because I was doing what I needed to do, I was teaching my baby how to fall asleep without me. After a week we gave it up. The way Leo and I felt, if my baby needed me then he was going to get me. Eventually Gabe did learn to fall asleep without me. Before he was 2 years old he was sleeping in his own bed. He could still come to our bed if he had a bad day and needed a night time cuddle or if he had a bad dream and needed to be reassured.
I did try the cry it out method with Lucas also. Again it was about MY need for a break. Lucas was a very needed and dependent child. He not only needed me to cuddle him to put him to sleep but the cuddle needed to be tight while I rocked and bounced him. My back was aching and I was exhausted. Crying it out didn't work for Lucas, he would cry for an hour and that is not healthy. What did work was giving him what he needed to fall asleep and then ever so gently laying him in his crib. When he would wake for his midnight feeding I would go through the same routine. It wasn't easy but I kept telling myself that in the scope of his life this is just a small piece of time and what is important is filling his need. Between 13-21 months old he was sleeping through the night in his own crib. At 21 months is when he figured out how to climb and fall out of his crib. He still needed the security of his crib but we had to transition him into a toddler bed for safety. This transition resulted in his sudden need to co-sleep.
Hindsight is 20/20. Of course my boys needed my arms to fall asleep! Gabriel needed the natural aspects of the Attachment Parenting, resulting in the fact that today Gabe and I have a strong Mother and Son bond. Knowing what we now know about Lucas' issues it is obvious that he needed that emotional and sensory input that is provided by Attachment Parenting. I cannot imagine how much harder it would be for Lucas if he did not get that reassurance and comfort that has been provided by co-sleeping.
There are times like last night when Gabe needs the closeness that comes when you get to be cuddled and fall asleep in Mommy's arms. I am happy that my 10year old still occasionally feels the need to sleep inside his Mommy's arms. I am also confident that Lucas is ready to transition out of the family bed but only if we do this in a loving and supportive way. I believe that any attempt to let him cry it out or force the issue could make his speech backslide.
Personally I am happy that I have found a site that promotes the same parenting style I have always believed in. I never judge other's parenting styles as long as the children are happy, healthy and well loved. There are 8 simple and basic principals to the Attachment Parenting philosophy http://www.attachmentparenting.org/principles/principles.php
1. Prepare for pregnancy, birth and parenting.
2. Feed with love and respect.
3. Respond with Sensitivity.
4. Use nurturing touch.
5. Ensure safe sleep, physically and emotionally.
6. Provide consistent and loving care.
7. Practice positive discipline.
8. Strive for balance in personal and family life.
While researching on the internet for advice in transitioning Lucas out of our bed and into his own I happened across a site called Attachment Parenting. I never heard of this parenting philosophy before. Surprisingly it matches the way we are raising our children. The site will say "the essence of Attachment Parenting is about forming and nurturing strong connections between parents and children." Isn't that why we want to become parents? To create a strong bond, a meaningful relationship with our children? A child is the most precious gift that life has to offer. From the moment of conception this tiny human depends on it's mother to nourish and protect it. When an infant is born it depends on it's parents to decipher every cry and coo. They are tiny human's with emotions and needs. Attachment Parenting isn't a new philosophy it is a return to maternal instinct.
I had nursed Lucas for his first year. When he would cry my breasts would swell and ache responding to his cry for hunger. My body gave a physical response to my child's cry. That is natural! What is not natural is allowing your infant to cry when they need something from their parents. I get that most people will say "They need to learn to self soothe." My response is this "How many 20 year olds do you know that still need to be cuddled to have their needs met? None, because in time everyone learns to self soothe." My question is, "Why does a 6 month old need to learn how to self soothe?" Most of the time the answer to this question has to deal with the Mother's need. It can be very difficult to find the balance between taking care of yourself and your child when those needs conflict. Balance is necessary to keep a happy healthy and loving family environment. While caring for your child you must also care for yourself. I think that is why we often resort to the "cry it out" method.
That is why I tried the "cry it out" method when Gabriel was a baby. It was exhausting always needing to walk and bounce him till he could fall asleep. I needed time for myself. When I did try to let him cry it out I felt so guilty and it destroyed Leo to listen to his baby cry. Many people told me that I shouldn't feel guilty because I was doing what I needed to do, I was teaching my baby how to fall asleep without me. After a week we gave it up. The way Leo and I felt, if my baby needed me then he was going to get me. Eventually Gabe did learn to fall asleep without me. Before he was 2 years old he was sleeping in his own bed. He could still come to our bed if he had a bad day and needed a night time cuddle or if he had a bad dream and needed to be reassured.
I did try the cry it out method with Lucas also. Again it was about MY need for a break. Lucas was a very needed and dependent child. He not only needed me to cuddle him to put him to sleep but the cuddle needed to be tight while I rocked and bounced him. My back was aching and I was exhausted. Crying it out didn't work for Lucas, he would cry for an hour and that is not healthy. What did work was giving him what he needed to fall asleep and then ever so gently laying him in his crib. When he would wake for his midnight feeding I would go through the same routine. It wasn't easy but I kept telling myself that in the scope of his life this is just a small piece of time and what is important is filling his need. Between 13-21 months old he was sleeping through the night in his own crib. At 21 months is when he figured out how to climb and fall out of his crib. He still needed the security of his crib but we had to transition him into a toddler bed for safety. This transition resulted in his sudden need to co-sleep.
Hindsight is 20/20. Of course my boys needed my arms to fall asleep! Gabriel needed the natural aspects of the Attachment Parenting, resulting in the fact that today Gabe and I have a strong Mother and Son bond. Knowing what we now know about Lucas' issues it is obvious that he needed that emotional and sensory input that is provided by Attachment Parenting. I cannot imagine how much harder it would be for Lucas if he did not get that reassurance and comfort that has been provided by co-sleeping.
There are times like last night when Gabe needs the closeness that comes when you get to be cuddled and fall asleep in Mommy's arms. I am happy that my 10year old still occasionally feels the need to sleep inside his Mommy's arms. I am also confident that Lucas is ready to transition out of the family bed but only if we do this in a loving and supportive way. I believe that any attempt to let him cry it out or force the issue could make his speech backslide.
Personally I am happy that I have found a site that promotes the same parenting style I have always believed in. I never judge other's parenting styles as long as the children are happy, healthy and well loved. There are 8 simple and basic principals to the Attachment Parenting philosophy http://www.attachmentparenting.org/principles/principles.php
1. Prepare for pregnancy, birth and parenting.
2. Feed with love and respect.
3. Respond with Sensitivity.
4. Use nurturing touch.
5. Ensure safe sleep, physically and emotionally.
6. Provide consistent and loving care.
7. Practice positive discipline.
8. Strive for balance in personal and family life.
Tuesday, July 16, 2013
Recharge Your Batteries!
Well it is time again to recharge my battery. Today is slightly different. Today is the last day of using my current charger. Tonight I have an appointment for the St. Jude Medical rep to come and exchange chargers with me. Two months ago I received a letter from the company that they were recalling the chargers because of batteries overheating, causing some burns. If you receive a letter saying your car's engine is being recalled because it could overheat and catch fire you would drive it back to the dealership immediately. Imagine if something similar was under your skin. Not a pleasant thought right? I am eager for this replacement and yet I pray that everything works smoothly. There is a chance that IF my battery is too far under my skin that this new charger will not work with my battery. If that is the case then I need to discuss my options with my Neurosurgeon. 1. Keep my charger and risk the potential of one day it burning my flesh. 2. Surgery to reposition my battery. Obviously neither option is the perfect choice.
Friday, July 12, 2013
Kids Crafts!
We have tied dyed and made our own soap crayons. While fun to create neither one quite turned out the way we expected.
Tie Dye T's.
I picked a night when Gabe's best friend was sleeping over to pull out this activity. I figured they needed something other than video game's and Yu-Gi-Oh to do. They both thought this sounded like a fun idea and were very eager to create their own shirts. This wasn't a great activity for Lucas, his attention span ranges from 5-10 minutes for activities. I occupied Lucas with finger painting and having the neighbor boy come over to play outside. The first few shirts we dyed came out okay but the kids lost interest with how long they had to wait. So I cut the time dramatically down and the colors came out as if they were a bleached out version...not nice. Leo bought more colors and I have the shirts put off to the side so we can re-do the tie dye. I have an idea to plan a second (time consuming) activity while we are waiting for the shirts to process. I am crossing my fingers that we will get a cool effect from tie dying over the tie dye. I am also interested in finding other ways for the boys to decorate their shirts but when I was at the craft store they only had girly stuff.
Take a look -
The Soap Crayons.
I thought this would be a fun idea. We have bought them in the past and they have proved to entertain the kids with less water being splashed out of the tub. So when I read that I could make them at home I thought "Why not?" I should have known this was not going to work out right. The first thing that went wrong was when my ShopAtHome order substituted my nameless brand of soap flakes for Tide's powder soap. Still, I thought let's try this and see what happens. The process is simple. One cup of soap flakes, one tablespoon hot water (we needed 3-4tablespoons), and food coloring. Mix until it thickens then create your shapes. I had pulled out two cookie cutters and told Gabe to use his imagination. We had 5 different Tupperware containers for each color; yellow, light blue, dark blue, green and purple. Lucas loved when we were mixing. He didn't create anything although he did ask me to use the purple soap to create Diesel 10. Gabe and I made some regular shaped crayons, one finger shaped crayon, a cookie cutter star and teddy bear, a rainbow and some Yu-Gi-Oh creatures. The clean up process was simple...the backyard hose to wash out the soap. One small issue was when I had to tell Lucas that we couldn't play with the crayons right away because they needed 2 days to harden. When the night finally came to play with the soap crayons in the bath the kids were so excited! Quickly the excitement died away when the crayons didn't really work in the tub. The dye did not write but it did color the water. The soap proved to be a little itchy on Lucas' delicate skin. I might try the project again after I research different recipes or if I find the perfect soap option.
Take a look -
What's next!
Gabe's Lemonade Stand.
Today @ 1pm! We make the Lemonade from scratch. Gabe has to make signs to post and promote. At 50cents per cup he learns the value of his time, the product and his salesmanship. He needs to handle the money making change as needed. At the end of the sale he gets to count his money and of course spend it!!! This is a summer time project that is truly giving him lemons and asking him to make lemonade.
Self Contained EcoSystem
I am researching the supplies we need to create our self contained ecosystem. I need to find; a few drops of dechlorinator, aquatic plants, snails, fish, crickets, pill bugs, earthworms, aquarium gravel, soil and gather some basic household stuff. Here is a link to what we want to do. http://cranberrycorner.blogspot.com/2010/07/summer-fun-ecosystem-edition.html Gabe loves science and I think this could become a great family project. It will be interesting to see how long this mini self contained ecosystem can last.
Yesterday, Gabe finished his first Summer Reading book "The Infinity Ring" so our next step will be a book report. I also have plans to put his imagination to work this August by creating a math game from his YuGiOh cards. More great projects/activities/crafts to come...
Tie Dye T's.
I picked a night when Gabe's best friend was sleeping over to pull out this activity. I figured they needed something other than video game's and Yu-Gi-Oh to do. They both thought this sounded like a fun idea and were very eager to create their own shirts. This wasn't a great activity for Lucas, his attention span ranges from 5-10 minutes for activities. I occupied Lucas with finger painting and having the neighbor boy come over to play outside. The first few shirts we dyed came out okay but the kids lost interest with how long they had to wait. So I cut the time dramatically down and the colors came out as if they were a bleached out version...not nice. Leo bought more colors and I have the shirts put off to the side so we can re-do the tie dye. I have an idea to plan a second (time consuming) activity while we are waiting for the shirts to process. I am crossing my fingers that we will get a cool effect from tie dying over the tie dye. I am also interested in finding other ways for the boys to decorate their shirts but when I was at the craft store they only had girly stuff.
Take a look -
 |
| The color bowls |
 |
| The boys shirts |
 |
| The other shirts - after the boys got bored. |
The Soap Crayons.
I thought this would be a fun idea. We have bought them in the past and they have proved to entertain the kids with less water being splashed out of the tub. So when I read that I could make them at home I thought "Why not?" I should have known this was not going to work out right. The first thing that went wrong was when my ShopAtHome order substituted my nameless brand of soap flakes for Tide's powder soap. Still, I thought let's try this and see what happens. The process is simple. One cup of soap flakes, one tablespoon hot water (we needed 3-4tablespoons), and food coloring. Mix until it thickens then create your shapes. I had pulled out two cookie cutters and told Gabe to use his imagination. We had 5 different Tupperware containers for each color; yellow, light blue, dark blue, green and purple. Lucas loved when we were mixing. He didn't create anything although he did ask me to use the purple soap to create Diesel 10. Gabe and I made some regular shaped crayons, one finger shaped crayon, a cookie cutter star and teddy bear, a rainbow and some Yu-Gi-Oh creatures. The clean up process was simple...the backyard hose to wash out the soap. One small issue was when I had to tell Lucas that we couldn't play with the crayons right away because they needed 2 days to harden. When the night finally came to play with the soap crayons in the bath the kids were so excited! Quickly the excitement died away when the crayons didn't really work in the tub. The dye did not write but it did color the water. The soap proved to be a little itchy on Lucas' delicate skin. I might try the project again after I research different recipes or if I find the perfect soap option.
Take a look -
 |
| Ramirez boys being crafty |
 |
| Lucas mixing the purple soap |
 |
| Start mixing |
 |
| The work space |
 |
| Finished! |
What's next!
Gabe's Lemonade Stand.
Today @ 1pm! We make the Lemonade from scratch. Gabe has to make signs to post and promote. At 50cents per cup he learns the value of his time, the product and his salesmanship. He needs to handle the money making change as needed. At the end of the sale he gets to count his money and of course spend it!!! This is a summer time project that is truly giving him lemons and asking him to make lemonade.
Self Contained EcoSystem
I am researching the supplies we need to create our self contained ecosystem. I need to find; a few drops of dechlorinator, aquatic plants, snails, fish, crickets, pill bugs, earthworms, aquarium gravel, soil and gather some basic household stuff. Here is a link to what we want to do. http://cranberrycorner.blogspot.com/2010/07/summer-fun-ecosystem-edition.html Gabe loves science and I think this could become a great family project. It will be interesting to see how long this mini self contained ecosystem can last.
Yesterday, Gabe finished his first Summer Reading book "The Infinity Ring" so our next step will be a book report. I also have plans to put his imagination to work this August by creating a math game from his YuGiOh cards. More great projects/activities/crafts to come...
Monday, July 8, 2013
Sunday chatter
If you are a frequent church goer with a small child you attend mass prepared to keep your small one entertained. My personal tricks involve fruit snacks and toy trains but if those fail to keep him occupied Leo or I will take Lucas out for a walk in the Gathering Space. Our focus has always been to keep Lucas in his seat. I know most parents try to keep their little one quiet but that has never been our issue until yesterday. We were sitting in the front row on the left side of the church. Lucas was in the pew playing with his trains when suddenly he started making car and train noises! He sounded louder than usual but only because everyone was quietly praying along with Father Justin. Leo and I watched Lucas with huge smiles on our faces. We didn't try to stop him either. Lucas making the car sound is like an answered prayer. I started to cry while listening to this small miracle. What 3 year old doesn't make engine noises when playing?! Up until 2 weeks ago Lucas did not know how to use his voice to make these noises. It started one day when we were in the backyard and he pushed his pretend lawnmower making lawnmower noises. Leo rushed over to get me to pay attention and we both held on to each other in total awe of the moment. We know we still have a long way to go to resolve his Apraxia/Dyspraxia but at this moment in time we are enjoying our victories.
Friday, July 5, 2013
Summer time fun!
Summer is in full swing. I am cooking on the grill more days than in the kitchen. The boys spend more days in the swimsuits than fully dressed. Attitudes are more relaxed and the kids are exhausted by bedtime. Gabe even likes Summer School!!!
As I am typing this post I am sitting outside on my patio set watching the boys run around the yard splashing each other. While some people might complain about the heat I enjoy it as it warms my bones. I still need to be cautious of the humidity, stress, and those days when I simply over tax my body. At least in the summer I don't worry about flairs due to the weather (or as humidity applies I don't worry as much). An added benefit is that the summer months are typically less stressful. All things considered, Summer is a time for fun!
Yesterday was the Fourth of July. We spent two hours at the beach, had dinner and ice cream then we took the kids to the movies instead of watching fireworks. At the movie theater we had an interesting experience. Lucas had been doing great that day with using the potty. We had on the same swimmy diaper most of the day "Why change it if it hasn't been peed in?" In the truck I told Leo I was going to change Lucas into a real diaper as soon as we went into the theater. As we were walking in the parking garage Leo says "Why is Lucas walking weird?" Then he noticed it. The drip down Lucas' leg. Our first thought was "No big deal. Take him back to the truck and change him into clean shorts. We have plenty of time before the movie starts!" I lift Lucas up, taking off his swim shorts as he is standing at the edge of the truck. When I take off his swim diaper my foot gets splashed with pee! I am talking about as if someone dumped a cup of warm water on your foot but in reality it is pee! I am so glad I had cheap flip flops on! Lucas' shirt and body was soaked with pee. We checked his car seat and it was damp. The diaper bag was packed with an extra pair of shorts but not a shirt. Leo looks up at me and says "Target is across the street. Lets go buy him a clean outfit and we should be able to be back in time for the movie!" It worked! We were back in time for the movie. Despicable Me 2. As a family we laughed and had a great time. We also have the funny story of how Lucas' diaper splashed my foot with pee. Isn't that what summer is all about?
How does your family enjoy the Summer? Do you use it as a chance to spend more time together?
As I am typing this post I am sitting outside on my patio set watching the boys run around the yard splashing each other. While some people might complain about the heat I enjoy it as it warms my bones. I still need to be cautious of the humidity, stress, and those days when I simply over tax my body. At least in the summer I don't worry about flairs due to the weather (or as humidity applies I don't worry as much). An added benefit is that the summer months are typically less stressful. All things considered, Summer is a time for fun!
Yesterday was the Fourth of July. We spent two hours at the beach, had dinner and ice cream then we took the kids to the movies instead of watching fireworks. At the movie theater we had an interesting experience. Lucas had been doing great that day with using the potty. We had on the same swimmy diaper most of the day "Why change it if it hasn't been peed in?" In the truck I told Leo I was going to change Lucas into a real diaper as soon as we went into the theater. As we were walking in the parking garage Leo says "Why is Lucas walking weird?" Then he noticed it. The drip down Lucas' leg. Our first thought was "No big deal. Take him back to the truck and change him into clean shorts. We have plenty of time before the movie starts!" I lift Lucas up, taking off his swim shorts as he is standing at the edge of the truck. When I take off his swim diaper my foot gets splashed with pee! I am talking about as if someone dumped a cup of warm water on your foot but in reality it is pee! I am so glad I had cheap flip flops on! Lucas' shirt and body was soaked with pee. We checked his car seat and it was damp. The diaper bag was packed with an extra pair of shorts but not a shirt. Leo looks up at me and says "Target is across the street. Lets go buy him a clean outfit and we should be able to be back in time for the movie!" It worked! We were back in time for the movie. Despicable Me 2. As a family we laughed and had a great time. We also have the funny story of how Lucas' diaper splashed my foot with pee. Isn't that what summer is all about?
How does your family enjoy the Summer? Do you use it as a chance to spend more time together?
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