Wednesday, April 29, 2009

Motherhood... a Divine Calling

With Mother's Day just around the corner I thought I would talk about what motherhood means to me. Today I met a woman who tried to conceive for 20 years!! She decided not to try medical intervention. She told me that she felt that if it was meant to be then it would happen. She decided to leave it in the Lord's hands. Well... here she was in her 40's and she finally got pregnant. What an inspiration! How many of us take this gift for granted?

I was blessed with four wonderful pregnancies and consequently four beautiful children. Although my first pregnancy and delivery were not a walk in the park, overall it was a positive experience and I delivered a healthy baby boy. That's all a mother asks for in the end. My husband and I were blessed with good fertility and did not have any problems getting pregnant. That is something I never took for granted. It seems like all my life I have been surrounded by friends who have trouble getting pregnant and I never understood it. It made me mad to see these wonderful women who would make awesome parents not be given the opportunity. It made me even MORE mad to see people who did not even want kids get pregnant before my eyes. That was probably the hardest thing for me to understand.

Motherhood is a divine calling and a blessing given to women. We are born with the divine nature that enables us to be loving, kind, gentle, and nurturing with our babies. I see my daughter, who is only 6, already wrapping her dolls in blankets and doing other things that the boys definitely don't do. The differences are so evident. Even those women who don't have children of their own will be given the opportunity to be a part of a child's life. It might be a niece or nephew, a neighborhood kid, or perhaps a child from church. They will have a hand in raising that child and giving them all the love and support that they have to give.

I have a friend who recently adopted a beautiful baby boy (this will make it her second son) and in many ways I think this will be such a special Mother's Day for her. I have to admit that I was a bit jealous seeing her with such energy and being able to enjoy those tender first days and weeks that you can't ever get back. I just remember how tired I was after each of my babies and it definitely took me some time to recuperate. Adoption is definitely one of the greatest gifts someone can give. It's an unselfish act and takes so much courage and love. I can not imagine having to face such a decision. However, I am so glad that so many do and that moms like my friend are given this precious gift and opportunity to be a mother. I know in my heart that these babies were sent from heaven and it doesn't matter HOW they got here, they BELONG here and one only has to see the miracle of adoption to see it. I am so happy for my friend, and I know that she is going to be such a wonderful mom to him.

This post is dedicated to all the wonderful moms out there who don't think twice about putting others before themselves.... who dedicate their time and effort in making sure that their kids are fed, bathed, taught, and loved.... who juggle home, school, spouses, and such.... who wear so many hats I can't even name them all.... and lastly, who are the unsung heroes of the world!!!
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Being a mother is the hardest
job there is....you don't get
a paycheck, praise, or even a
break....but I wouldn't trade
it for anything in the world!
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Wednesday, April 22, 2009

Wilson's Disease Diet That Works

I thought it was time to talk about Wilson's again. Since it seems like things are going well for our daughter I thought I would share what we are doing and save some of you the hassle of months and months of research. I am definitely willing to share what I have found. :)

The first thing you need to do is educate yourself on what foods are high in copper. Since I have a medical background I can understand some things that perhaps others can't as far as units of measurement, metabolic pathways, and other things I sometimes take for granted. However, I have found numerous sites that offer tables, charts, and other important information that can be very useful in making it all make sense. The important thing to remember is that sometimes it's not the food that contains the copper, but the way it is processed that makes it dangerous. We were fortunate to get a diagnosis so early and so my daughter has made a smooth transition. She treats anything with chocolate, mushrooms, dried fruit, etc... like poison.

I want to refer you to the mayo clinic website. That is the first site I visited and it has a lot of information concerning Wilson's Disease. This is the link:
http://www.mayoclinic.com/health/wilsons-disease/DS00411

Another website that is fabulous:
http://www.gicare.com/Diets/Copper-Restriction.aspx

yet another:
http://www.wilsonsdisease.org/copper.html

I could go on, but I think you get the idea. There are tons of websites out there and they all have valuable information. All you have to do is google "Wilson's Disease" or "Low Copper Diet" and you will find many more.

One thing I am going to do is meet with a nutritionist soon. I will update you all on what I find out. I think that it's important to make sure that my daughter has a well-balanced diet not lacking in essential nutrients and vitamins.

This is the diet we are currently following: we avoid certain foods such as chocolate, leafy green vegetables such as spinach, mushrooms, nuts except peanuts, beans, shellfish, organ meats or anything that might contain it such as cheap hotdogs, Ovaltene, instant breakfast or "meal-replacement" drinks, whole wheat products, and we refer to charts often if we are unsure.

The good and bad about this condition is that since there isn't an "allergic" reaction to these foods it is easy for the parent AND child to forget or "break the rules" once in a while. I have to admit that on special occasions I sometimes will let her have a bite of chocolate or have a chocolate chip cookie. I don't want her to rebel and go overboard in the future. The main reason I have been so strict in following the diet is because I know how addictive certain foods can be. It's easier for her if she learns now to retrain her palate. I can't even imagine if I had to avoid chocolate. It's one of my favorite things in life and it's a drug of sorts for PMS and other conditions. However, I have learned some substitutions such as carob for her. She loves carob malt balls. They are a little treat we get for her when she is craving chocolate.

Right now my daughter is not on any medicine. I know that zinc seems to work for some people who have trouble controlling the copper absorption. That is something to definitely check into. Another thing that is worth checking is the copper level in the tap water. They don't recommend consuming more than 100 mcg/L of copper. You can either look at the water report or call your water company and get your water tested. We are lucky in our area to have good water with low copper levels. However, we don't take chances and we use only filtered water for drinking. It's yet another precaution that doesn't require too much effort and it's worth the time.

I will try and remember to update you all on the nutritionist information. I am eager to find out if we are lacking in any vitamins or nutrients for our daughter. She is doing great and is growing up so tall. I am optimistic that she will continue to be healthy. Her liver enzymes are improving and I like the fact that for now we are not having to take any drugs for her condition. I am so thankful for the prayers and best wishes on her behalf. They are definitely being heard. I am also thankful for the inspiration and dedication of the doctors we have today.
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Wilson's Disease is not curable,
but it is definitely treatable.
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Thursday, April 16, 2009

Confessions of an Autism Community

I got this idea from a show I watched on television. There is a woman who wrote a book about confessions from mothers and what they REALLY think and feel. I thought it was very enlightening and therapeutic. I thought I would do the same thing except post some things I have heard others say or things I have felt myself (keeping it all anonymous of course) so that everyone can look at it and see that you're not alone and that it's okay to vent sometimes. :)
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"Sometimes I wish I could go to jail for a day to get a break."
..............................
"I love my children to death.... but sometimes I wish I would have waited longer to have kids."
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"My child is so overweight that I feel ashamed and guilty."
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"I know people judge me by my children's actions and that makes me so mad."
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"Sometimes I go into the bathroom and cry."
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"Most days I feel overwhelmed and unappreciated."
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"I have to admit that there are times when I wonder what it would be like to have normal children."
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"Why can't everyone see that I am just trying my best to raise my children in a world that can't understand autism!"
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"I wish that my best friends could wear my shoes just for a day."
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"I love looking at the world through the eyes of my child."
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"I have sent my child to school drugged with Tylenol and/or decongestant before."
..............................
"I have to admit that I cringe when others tell me that their 'normal' children do the same thing."
..............................
"Maybe I'm a bit too touchy, but when my son says hello and it is not reciprocated I get very upset."
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"One of my worst fears is that I will die and leave behind my autistic child with someone who just wouldn't understand him like I do."
..............................

Those are just a few of the things I could recall. Feel free to "vent" if you want. I think it's important for all moms to realize that we are all trying the best that we can to raise our children in this crazy world of ours. No one feels perfect. We all have our struggles we deal with on a daily basis. Parents of children with special needs have some of the same feelings and struggles. However, it's amplified by our own internal voices and insecurities. My prayer is that those things will be reconciled and that we can focus on what's REALLY important.
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I know you and you know me
We are as different as the sun and the sea
I know you and you know me
And that's the way it is supposed to be.
(Primary Song: "We Are Different")
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Thursday, April 9, 2009

Autism Society of America Walk

Today I went to an Autism Walk in my city with a friend who also has a child in the "autism spectrum". I have to admit that I was rather disappointed in the numbers that came. I was expecting crowds of people, and I think there might have been less than 100 people there. The cost was $30 and we got a cute shirt with the Frog mascot on it. I was glad to see families there and there were a few people from our school. I wish there would have been more. How can we expect support if WE don't support one another. That's the main motivation for this post.

Tomorrow they are meeting with legislators to discuss the need for more funding for Autism research. It's important that we all do what we can to let our representatives know that we can no longer be ignored! The numbers are rising each day and some still say there is not an epidemic. They want to dismiss it as "an increase in awareness and testing".... that is so wrong! Let's say for a moment that the numbers are increasing because of better screening methods. If that's the case, then show me all the adults with autism! Well... no matter what they say, the numbers are still increasing and so we STILL need to do something about it. Right???? It's insane to say that we aren't doing anything because there is no proof that the numbers are actually increasing. For the record: the number of autism cases are on the rise and no matter what the cause is, it definitely has MY attention.

http://www.autism-society.org

April is Autism Awareness Month and I wanted to make sure to post the link to useful information. The link above has wonderful ideas and suggestions of things you can do to support the cause. I hope you take the time to check it out.

The formal symbol for Autism Society is the puzzle piece. You can purchase shirts, bracelets, and other products online. The money they make goes towards increasing public awareness, research, and cost of advertising. The important thing to remember is that even if you don't have a child with autism, chances are that you will know someone or that your child will know someone who does. The statistics are 1:150 and some say it's actually more prevalent than that.

The first step towards finding an answer and/or a cure for Autism is awareness. It's a real condition that affects so many people. It's not something that goes away, although the symptoms seem to improve in some cases. I believe that some parents feel like giving up. I don't want that to happen!!! We can't just give up now. We need to fight harder than ever. We have to do it for our children, our grandchildren, and our posterity.
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Now is the time to fight!!!
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Thursday, April 2, 2009

Angels and Demons

Right now I am reading a book entitled "Angels and Demons" and it's written by the same author as The DaVinci Code, which I thoroughly enjoyed. In the book they mention how in the old days they would kill people who called themselves "scientists" and taught things that contradicted principles taught in church. These people were considered crazy. Just imagine for a second a world in which we still believed the world was flat, or one in which the sun was NOT the center of the universe, or perhaps that illnesses were a direct result of God's wrath. Those are things that used to be the "norm" in thinking. Of course, NOW we know all that is not true.

Reading the book made me think about all the changes and modern-day miracles that have been discovered and/or invented. It also made me feel sad about some of the changes that we are experiencing that aren't so good. There are so many things that are going through my mind right now. The first thing is the rise in mental illness in children. The other thing is the changing of medicine. Lastly, is the breaking down of the family unit as we know it today. I will first talk about the rise in mental illnesses in children. Why is it on the rise? That is definitely a good question we need to ask. All you have to do is turn on the t.v. and you will be bombarded by commercials for medications to treat depression, ADD/ADHD, anxiety, etc....the list is endless. It seems like every year we hear more and more of mental illness with children and that kind of scares me. What is going on? What's different about today that is making it harder for parents and kids? The obvious things to me are entertainment, food, and amount of exercise. The other things I thought about were morals taught at home, stable home environment, time spent with family and friends, school, and perhaps the music we listen to. All those things contribute to the type of person we become. It also can explain why there are so many problems with children today. Can that alone explain the rise? I don't think so. There are definitely environmental factors at play.

How is medicine changing? Well... instead of learning to cope with problems we are encouraged by the medical community to pop a pill instead. Instead of learning what the root of our symptoms are, we are given medicine. Instead of preventing illness we are sometimes causing it by the way we live. All these things are so frustrating to me. It seems logical to me that they should teach about alternative medicine in medical school, but they clearly don't. It's considered "quackery" and basically dismissed by doctors. I think if something works, then why not learn more about it? If I was a doctor and my patients were telling me that something was working for them I would totally encourage it and possibly suggest it to future patients as an alternative. However, it's been my experience that there are a lot of narrow-minded individuals in the medical community. As long as the pharmaceutical companies continue to brainwash the doctors and "buy" them with extravagant gifts this is not going to change anytime soon.

The last thing and most important change I have noticed is the breakdown of the family unit. Not only are people waiting longer to have kids, but it seems like a lot of parents don't take parenting very seriously. It's rare to see a family sitting together having a meal these days. That is so sad. I know a lot of mothers who choose to work just to maintain a lavish lifestyle. I think a child would much rather have a mother's time than the latest styles of clothing or electronic game that just came out. This year I am a Room Parent for my daughter's kindergarten class and it's so sad to see how many parents don't take their child's education seriously. It's almost like they expect others to raise their children and educate them as well. The schools are not a substitute for what should be taught in the home. As a matter of fact, I have learned the hard way that I have to work much harder these days to undo what they ARE taught in schools sometimes..... it's not always good.

Sometimes I feel like a pioneer in my own right as it pertains to the medical care of members of my family. There are a few people in my life that totally agree with my thought process and provide more insight. There are others that totally disagree and feel I am insane. At times I feel a bit like the scientists of old who tried to prove their theories and ideas but found a great deal of resistance. In my heart I am a scientist. Although I don't work full-time in a laboratory anymore, I still have it in my blood. I have a innate curiosity about how things work. My laboratory has morphed into my home office and the computer. It includes books, sessions with doctors, and the laboratory results I have organized into files. I also have witnesses and testimony of other parents. It has been a very positive experience for me. It will be my life-long journey and although I don't get a paycheck, I do get a much greater reward..... seeing my children happy, healthy, and strong.
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Sometimes truth is stranger
than fiction.
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Saturday, March 28, 2009

Lessons Learned From a Roller Skating Day

My older sons have what's called "Fun Friday" at school. If they have a good week and earn enough points they get to participate in an activity ranging from going to the movies to being able to play with their Nintendo DS. This week they went to a local skating rink for their reward. It was so much fun!

The last time we went skating with the kids they could barely stay up on their feet. However, I was so proud of them because they would keep getting up and try again. It was especially frustrating for my #2 because his balance was not very good and he wanted to go fast. My oldest did much better and tried to help as much as he could. However, he also had some difficulty staying on his feet so it was kind of comical seeing them out in the rink together. Well....THIS time, it was so different. I was so proud of my boys. My oldest did great and even participated in some of the games they did. My #2 put on his skates and immediately stepped into the rink and skated so fast I thought he was going to not be able to stop. My heart kind of skipped a beat and I ALMOST stepped out into the rink to catch him. Now I am so glad that I didn't. He was so proud of himself and made sure I was watching him. I truly enjoyed watching him. He looked like he was born with skates on his feet. It was amazing!!

I was thinking that there were some major life lessons to be learned from this experience. The first thing is that we should NEVER give up. We can't succeed unless we first fail and that's a hard lesson to learn. It would have been easy for my kids to just give up after all the falls and bruises they had experienced. There were probably around 60 kids there and I did not see a single child sitting or without skates. Some preferred to skate on the carpet while others circled the rink. I thought it was amazing seeing some of those kids who could barely talk skating like "pros" and I was so proud of them.

The second lesson to be learned is that sometimes we need to LET them fall. That is so hard as a parent. I once heard a talk at church and they related the story of how the mommy eagle takes care of her young. It was pretty amazing. The eaglets have to learn to fly and it's not instinctive. Sometimes when a young eaglet is fearful of taking its first flight away from the nest, a parent will withhold food to force it out. That's the way we need to be as parents. I am sure many of you have seen the movie Finding Nemo and that's the lesson that many parents learn the hard way. We will only push our children away or prevent them from reaching their potential if hover over them or make it too easy.

There is another story that I heard at church and it was of a man who asked the Lord to tell him what he should do to be strong and do His will. The Lord replied, "You see that huge boulder over there? I want you to push it." The man kind of hesitated and then decided to do as he was told. He went over and pushed with all his might and the boulder did not budge. He did this for a period of weeks. Finally, he got frustrated and asked, "Lord, I have pushed and pushed this boulder and it has not budged one inch. Why have you asked me to do this thing?" The Lord replied, "When you started you were weak. Now look at you. Your muscles are toned and you are stronger because of the work you have done. The fact that you were obedient in spite of your hesitation in the beginning has also blessed you with faith. Go now, you are now prepared." When I first heard this story I didn't have any children and so I did not comprehend the impact it would have later in my life. Now I totally get it! We only get stronger if we have challenges or obstacles in our lives. If everything was handed to us on a "silver platter", or if we never had to make choices then there would be no way we could grow

The last thing I want to say about our skating experience is that we should not underestimate our children's potential. My children amaze me all the time. They can comprehend things that even some adults don't get. They have taught me more than I can even begin to explain. My #2 has such a sweet spirit. He can be so loving and so empathetic at times. He is extremely tenderhearted and that can be very challenging when others are not so nice to him. Don't ever let a "label" limit your child's potential. There are so many examples of very successful people in history who were told they could not do it. There is a great site: http://www.child-autism-parent-cafe.com
and I urge you to visit it and share it with your autistic child. It has a list of famous people with autism and Asperger Syndrome. Famoust people with Autism: Daryl Hannah, an American actress best known for her roles in Splash, Blade Runner and Kill Bill was diagnosed as a child as being "borderline autistic", Christopher Knowles, an American poet, and Matthew Laborteaux, actor on Little House on the Prairie. Famous people with Asperger: Satoshi Tajiri, creator of Pokémon, Dan Aykroyd, comedian and actor, Richard Borcherds, mathematician specializing in group theory and Lie algebras, Dawn Prince-Hughes, PhD, primate anthropologist, ethologist, and author of Songs for the Gorilla Nation, and Gary Numan, British singer and songwriter.
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Don't ever tell a child they can't.
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Sunday, March 22, 2009

Time to Count My Blessings

There is a song that we sing at church entitled "Count Your Blessings" and the first verse goes like this:
When upon life's billows you are temptest tossed
When you are discouraged thinking all is lost
Count your many blessings name them one by one
And it will surprise you what the Lord has done.

That was the inspiration for this post. I see others and how hard they have it and thought that I truly have nothing to complain about. Although I don't always have it easy and I have my own struggles, there is always someone out there with much heavier burdens. I felt today I would post a "Top 10 List" of my many blessings. I hope it will inspire you to do the same.

#1) I truly have a wonderful supportive husband who loves me and the children. He is a very kind and gentle soul who has NEVER EVER raised his voice to me or showed how upset he was at me. He has NEVER EVER said an unkind word to me. I don't ever take him for granted and I know that he is my soul mate.

#2) I am so grateful for my parents and only brother. They all helped shape me into the person that I am today and there are no words to express my gratitude. My parents introduced me to the church and my brother (although younger) always looked out for me and loved me unconditionally.

#3) I have the most beautiful kids who are full of life!! They know how to live life to its fullest. They each have something special to offer to our family and I can't imagine my life without any of them. I am so glad that I decided to have more than just two children!

#4) Believe it or not, I consider all of my challenges with Wilson's Disease and Autism Spectrum disorders a blessing. I have been able to help so many people and have learned so much about myself through the process. I have met some wonderful people and that alone has been a great blessing in my life.

#5) I have to say that my faith and church are one of the greatest blessings in my life. It has given me strength and faith during some of my lowest points in my life. Also, knowing that I am sealed to my family for all time and eternity is something that is priceless.

#6) All the beautiful things around me that make me smile... including the color pink. It has always been my favorite color and I am so excited to say that my daughter shares that with me. Her room and clothes HAVE to have pink and that's alright by me. :)

#7) Music is truly a blessing in my life. I have been blessed with the gift of song and my father introduced me to the keyboard at a very early age. I loved listening to him play and I know that had an impact on my life. I sing at church, at home, and anytime I can. I also love to play the piano. It is definitely an outlet for me and lets me exercise my creativity. I can not imagine my life without music.

#8) Chocolate, chocolate, chocolate!! I am so thankful that I don't have Wilson's Disease because I can't imagine not being able to eat it. I love brownies and fudge. I love milk chocolate with anything! I also have some very fond memories of making chocolate chip cookies with my children.

#9) My heritage. I am from Puerto Rico and I believe that my background has had a lot of influence on many aspects of my life. I am passionate, loyal to friends, trendy, and love to give hugs. I also know Spanish and being bilingual has definitely been a blessing in my life.

#10) My health. I am able to run and play with my children. I know how fragile our bodies are and how things can change in an instant. That is why I value my health and consider it a great blessing in my life.

I hope I have inspired you all to do the same as I did. No matter what your circumstances are or what trials your may be going through, there are countless blessings to be thankful for. There is another blessing in my life that I must add. I guess it will be my #11... and that is my wonderful friends. I am blessed with great friends that I can depend on. I feel like Heavenly Father knew that I could not do it alone in this world, and so he sent me the most beautiful angels and they have surrounded me all my life. I feel like the luckiest person in the world.
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So amid the conflict, whether great or small
Do not be discouraged; God is over all.
Count your many blessings; angels will attend
Help and comfort give you to your journey's end.
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