Sunday, August 30, 2009

Cleaning as related to Emily's health | gwacemom on Momaroo

Cleaning as related to Emily's health | gwacemom on Momaroo

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Oh my, what a week! | gwacemom on Momaroo

Oh my, what a week! | gwacemom on Momaroo

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One ex wife, one sick baby, one bad holiday! | gwacemom on Momaroo

One ex wife, one sick baby, one bad holiday! | gwacemom on Momaroo

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Ignorance makes me sick | gwacemom on Momaroo

Ignorance makes me sick | gwacemom on Momaroo

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Girls and their piercings

like to think of myself as an understanding mom. While I don't wish to be the "cool" mom, I do like to think my kids can come and talk to me about difficult things. I can remember growing up my friend's mothers were very uptight about discussing sex and birth control while my mom tended to go the polar opposite. She embarrassed me plenty of times with how frank she was with her discussions.
Keeping that thought in mind, I like to see myself somewhere in the middle. I do not sit down with my daughter and discuss the proper way in which to kiss a boy nor do I shy away when the topic of sex comes up. I answer as honestly and as openly as I can and pray that this is just one of those "for the future" type conversations.
Having said all that, this post has nothing to do with sex. It has to do with piercings. Being a somewhat forward thinking mom, I don't mind some piercings. W is almost fourteen and has requested that I allow her to pierce her belly. While I know some mother's would say no, I honestly had no problem with it.
What I do have a problem with is the whole lip, eyebrow, tongue thing. For me the belly is something that is easily hidden and kind of cute when you are out in your swimsuit. I will admit that I pierced my belly a few years ago and I love it. With that in mind, I approved.
Today W throws me for a loop. She gets into the car and the first thing she says is "now mom, don't freak out, just listen to the whole story". This is not my first time at this particular rodeo, so I prepare for the worst. Thankfully, my worst was much worse than her story. It seems W has this great friend that knows someone (don't you just love these kinds of stories), that does body piercings. "You see mom, her cousin does this like for a living and like wouldn't charge me anything, so I was like thinking....now don't get mad, but I was kinda hoping that, and remember it won't cost anything, well um...could I get my lip pierced?" "Since it won't cost anything, no money will be lost if like I don't like it. So you see mom, I am really saving you money by letting her cousin do it. So, like can I do it tomorrow?"
I had to remain totally still for a few minutes because I wanted to laugh, but knew that she would be upset if I did. My response was as follows; "Well, W, that is just great that your friends cousin has such a great profession, but there is no way in you know where that you are getting your lip pierced. In reality you are saving me nothing because I wouldn't pay for something so stupid in the first place, but thanks for thinking of me." We had the typical, "buy why?" conversation which ended with me sounding just like my own mother when I kept repeating, "because I said so that's why".
Am I just getting old or are their other mother's that think this whole piercing fascination has gotten out of hand?

Funding for disabilities in school

Okay, I came into the middle of a conversation about school funding for certain disabilities and thought, "perfect, am I a lightening rod for this type of stuff now?"
One woman was voicing her opinion on how she felt that her school district alloted too much of their funding towards children with autism. I am unsure why she chose that particular disability, but I do know that it is often the chosen disability to disagree on. As the mother of a child with a disability I figured this was going to turn awkward for me and I would have to remove myself from the situation soon enough.
I sat back and listened to these women discuss why each had the opinion that they had. One was the mother of an autistic child and she took quite a firm stance that funding in her area was not enough, while the other was making claims that the school district covered everything from nannies to horse riding. If that is the case, I am moving to that area immediately.
Now, one would assume I would fall to the side of the mother with the autistic child, but in all honesty, I fall somewhere in the middle. My dearest friend has a child that is autistic and we have often discussed her daughter's education. J is a beautiful young girl and considered somewhat high functioning for an autistic child. High functioning is somewhat of a misnomer when it comes to autism, however. It is highly doubtful that J will ever have the ability to live totally on her own. At the age of 13 she has the IQ of around a 4 year old. For my friend, her desire is that the school teach J basic life skills. As she has often said, J will not need to know Algebra, she will not be attending college. What is most important to her is that they teach J how to count money, balance a checkbook, sign her name, etc.
This is why I say I fall into the middle of this arguement. I would find it a waste of resources to try and teach J how to do Algebra or get her to understand a novel's meaning, but I do not feel that J should be cast aside and forgotten simply because she does not function at a higher level.
As the parent of both non-disabled and disabled children, I can see both sides of this coin. Parents are angry that much needed funding is being utlized in a manner that is not beneficial to their children simply because they have no problems and parents with disabled children are seeing many of their resources being stripped away.
So, what is the answer? Is it a waste of funding or do you feel the children should be taught all the same things as non disabled children even if they do not have the capability to learn at the same level? If you were a parent of a disabled child, would you rather they focus on teaching that child the basic life skills necessary for them to lead as productive life as possible or would you want them to push your child to see how far they could excel?
I never had to excuse myself from the discussion. I simply remained quiet and listened to it get more and more heated. In the end both parties agreed to disagree and moved on. It left me pondering these questions, however, so now I leave them for you to ponder. Have fun!

Princess can have Down syndrome too

Okay, I will confess...I stole that from a t-shirt that my daughter has. I discovered it at a website several months ago and she simply had to have it.
See, the fact of the matter is, E is a princess to us no matter what. She is her daddy's little girl and perfect in every way. I had never really thought about those parents I would see that had a child with a disability although if I were honest, I would admit that often I would feel pity. Pity for what I guess I assumed their poor lives much be like without having any firsthand knowledge as to what the reality of the situation might be. I now know how those parents felt and I would love to find each and every one of them and apologize. Pity has no place in our home. Our daughter was a gift not a curse.
Statistically she is a gift that more than 85% of the mothers facing the same outcome would have done away with. I believe it is close to 89% that choose to terminate when a diagnosis of Down syndrome is made. While I judge no one for the decisions they make regarding their own lives and those of their unborn child, that statistic still makes me sad.
We did not know prior to E's birth there was a problem. I had declined the testing simply because for me, it wouldn't have changed the outcome. It would have stressed me out those last few months, but my daughter was coming to be either way. Someone asked me once would I have preferred to know before hand and I answered a resounding, NO. While it might have had me better educated on the subject, the stress factor alone made me glad this was a surprise. I will admit to spending the first few weeks in the NICU with every book on the subject I could get my hands on, but the things that could have been wrong and weren't, would have had me totally freaked by the time she was born.
E is eighteen months old, she isn't quite walking yet and her vocabulary is not where I would like it, but she is undeniably a princess. Our life is fantastic, she is the light of our world and please if you ever see us out and about, just smile, don't pity. Life here in Holland really isn't that bad!

Down syndrome is not a four letter word

When McCain announced his choice for running mate I will admit, I was excited. Not necessarily because I cared for his choice, but because I knew that Palin had recently given birth to a child with Down syndrome. My thoughts were that with putting her in the spotlight, it might open a dialogue on a subject not many people are overly familiar with. Well, I guess the old saying be careful what you wish for is true. A dialogue has started and it is not a very pretty one.
In the days following the news, I have read so much misinformation with regards to Down syndrome. I have almost reached a point that I am turning off the computer and tv and avoiding newspapers. From the rumors that the child is not really hers because who would have a "special needs" child without the benefit of a NICU, to how could a mother to a "special needs" child dare to go back to work only four days after giving birth. I also read yesterday that she should not run simply because of all the extra work this "special needs" baby requires. In reading all these things I just sit and wonder. Has any of these people even seen this child much less know his health conditions??
The fact is that not every child born with Down syndrome require time in the NICU. Some do, not because of the Down syndrome, but because of other health issues that often are associated with the syndrome. My daughter spent 25 days in the NICU following her birth, but her Down syndrome was not the reason. She had other issues that needed to be resolved which most likely would have been there even if she had not been born with enhanced genes. The NICU that my daughter resided in had over 30 infants at any given time while we were there. Out of those 30, only 2 had Down syndrome.
I do not know if this woman is qualified to hold the office of Vice President, I have not had the opportunity to research and make an informed decision. What I do know is this, she was blessed with a beautiful child that happens to have Down syndrome. That, in my opinion, does not rule her out from accomplishing anything. I know many women that have a child with enhanced genes and those women have accomplished great things. To read that simply because her child has a disability she is somehow less qualified is absurd.
Down syndrome is not a death sentence. People grow up and often live perfectly normal lives. Children are mainstreamed in schools now instead of automatically being placed in Special Education. Gone are the days where the family simply hides the child away in an institution. I would be willing to bet that many of you have been in the presence of a child with Down syndrome at the store or at the mall and were completely unaware. They are not branded with a big "D".
I guess what I am trying to say is this...do not discount anyone simply because their child was born with a disability. Learn a bit more about the subject before you make broad assumptions. Down syndrome is a very misunderstood issue. I should know, prior to my daughter's birth I had no clue about it at all. When I was given the news I had every stereotypical picture in my head that you could ever imagine. The reality of the situation is this, however, my daughter looks much like her siblings. She has her daddy's skin coloring and her mammas eyes. She is a happy child most of the time, but take away a toy and she will become a bear. She loves playing outside, she loves Blues Clues. She does not look like "Corky" from that show in the early 90's. She looks like my little girl, beautiful, adventurous, and the most wonderful gift I could have ever received.
I was in the midst of obtaining my degree so that I could enter law school when my daughter was born. While for the moment those plans are on hold, it has nothing to do with her Down syndrome. I needed the break and wanted to make sure that the direction of my life had not changed. I will go back to school and I will get my law degree. I will complete all those things in spite of the fact that I have a "special needs" child. If there is one thing my daughter has taught me it is life goes on no matter what obstacles are put in your path.
Again, I have no idea if Palin is qualified for the position. I simply know that having a child with Down syndrome does not mean she isn't.

"Special Needs"

Monday, 01 September 2008

I have seen those two words so often in the past few days. Since the VP nominee has a "special needs" child it seems everyone has an opinion on why she should or should not be running. Me personally, I have no opinion to share about her ability to run, but I have many on people's perception of having a child with Down syndrome.
The biggest discussion revolves around how a mother with a (and I quote, because I do not use this terminology) "down's baby" must surely be too busy to focus on anything else. I have a daughter with Down syndrome and aside from the fact that she sees a few more doctors than any of my other children, she is a perfectly normal toddler. She does not require any more nor any less attention than any of my other children. Yes, she had health issues that needed to be addressed her first year of life. Two separate hospitalizations that added up to 11 days total. Yes, there are other children born with Down syndrome that might require much more time in the hospital, but the point is, NOT all of them do.
I keep reading about her "special needs" child and I am beginning to hate those words. I do not look at my daughter and think of her in that manner. She is my daughter, she gets cranky, she has happy times...she is NORMAL. I somehow find the time to raise my other children, maintain my home, have a relationship with my husband, and care for my "special needs" daughter. Oh, and amazingly enough, I find the time to blog about things that are bugging me.
I know many children with disabilities and their mothers all seem to find the time to have a life. Sometimes it is not easy, but is it always easy when the child is healthy?
In my eyes all my children are special and only one of them has Down syndrome. I just wish that those political blogs would actually take the time and research what life is like with a child with Down syndrome. I think that most would be shocked at how normal life really is for the family. Walk a day in my shoes and then write your story. I am willing to bet it would have a very different ending.

Why I hate the R word

On March 3, 2007 the most amazing thing happened. My beautiful daughter was born three weeks early. My husband and I awoke in the middle of the night and headed out to the hospital. We had no idea at that time that I would not be coming home for at least two weeks and that our beautiful little girl would spend almost a month there.
Emily was born around 4am and not a soul mentioned a problem. She looked perfect and we were quite happy. A few hours later we discovered that the doctors feared she had Down syndrome. Our world as we knew it suddenly just stopped. Between hubby and I, this made baby number eight and the first with any hint of problems. I honestly didn't even know what Down syndrome was. I mean I had heard of it, had seen children that had it, but to actually define it...I was clueless.
Fast forward to today. It has been almost 18 months of absolute wonder and awe. Emily has gone through no less than three surgeries for different things. The most serious being to repair the two holes in her heart. She is growing leaps and bounds and has no ongoing medical issues. Quite honestly, she is a perfectly normal 18 month old.
Unfortunately, the R word has become quite a popular word in our world today. Yes, there is a strong chance that Emily might be slower than some children (although as of yet, that is not the case). She might do things slower than other children, she might even be slower to learn, but does that mean she has to be labeled with such a disgusting word? My own daughter was guilty of using the word on occasion until she learned that it was hurtful to others.
Sadly, due to some misinformed people in the movie industry, there is a new movie out that celebrates the use of this word. It saddens me that my sons and daughters will be out in public and see the T-shirt being sold as a plug for the movie. The shirt glorifies the use of the R word and I just get sick inside.
Sorry, I had to rant. My daughter has a name and it doesn't start with R. There are millions of children just like her and they are beautiful people that deserve respect. Please think twice next time you use the word. It hurts.

Saturday, August 8, 2009

Down syndrome and myths

I have been very blessed to have met many people that do not view Emily as "that kid with Down syndrome". I like to think it is because that is not how we choose to define her. In our world she is simply, Emily. Yes, Down syndrome is a part of who she is just as much as the color of her eyes is a part of her.

I have read the statistics and I know that 9 out of 10 people would not have made the choice to have Emily had they been aware of her diagnosis. It makes me a bit sad, but I totally understand that this life isn't for everyone. I will never look at someone that chooses to terminate and tell them "you are wrong". I would most likely offer you the most up to date information in a quest to make sure you have all the knowledge necessary before making such a decision, but I would stand behind whatever decision you made.

I have often said that in my wildest dreams I never imagined myself as the mother of a child with a disability. I have also often said that now I can't imagine my life without her. The first year of her life was probably one of the most difficult years our family has ever endured. A month in the NICU following her birth, monthly visits to see her cardiologists, heart medications, a hospitalization for a rare infection, and finally an open heart surgery. Not exactly a trip to Disneyland, but a year in my life I wouldn't trade for anything.

The way I look at it is this; before having Emily I would have of course said that I would want nothing more than to have a healthy child with no disability. Having actually held this sweet angel in my arms for almost two years I can't imagine her any other way. She is the light of our world and I am so blessed to have her.

I understand the fear that some have. Trust me, I have the same fears. What if she is never able to live on her own? What if her heart gives her trouble in the future? What if someone laughs at her in school? However, the same questions could be asked for each of my children. I went to school with a young man that had a promising future in football. One evening he was involved in a near fatal car accident. In one short moment his world changed forever. He suffered a severe head injury that hindered his speech and his thought process. He also was never able to participate in sports again. My step father was 62 when he died suddenly from a blood clot that traveled from his leg to his lungs, causing him to suffocate. He had never had a serious medical problem prior to his death. Whitney came home a few years ago from school crying because a few of her friends decided to be less than nice to her.

The fact of the matter is, none of us really know what our future holds. I hear all the questions; "what will happen to her when you die?" "What about your future after the other children are grown and gone?" "How will you travel in your retirement years?" My answers are always the same; I don't know what will happen to Emily upon our death. I don't know what would happen to any of my children upon our deaths. I know that their is family in place set to take them on if something tragic happened while they are young. I know that between her seven brothers and sisters IF she were to need a home as an adult and we were not here to provide her with one, they would all be more than willing to take on that responsibility. Notice I said responsibility and not burden? Emily is not a burden to any of us. I know some people say that my other children didn't sign on for the care of their disabled sibling, my children would tell you something very different.

When the other children are grown and gone Matt and I plan on having a beautiful condo at the beach. If necessary, there will be a room for Emily. I believe with all my heart that it won't be necessary. Emily is being raised to be an independent individual. I always plan on her doing whatever she puts her mind to. I worry more about a few of the other kids and their futures than I do about Em's. Matt and I will travel the world when we are older. If Emily is by our side, so much the better. Who wouldn't want to show their child the world?
Emily has Down syndrome. She doesn't have some horrific disease. She is not a manipulative sociopath and she doesn't project evil out onto society. She is a beautiful little girl and I am proud to be called her mommy. For those idiots of the world that can't or won't see her for the wonderful human being that she is, I only have this to say; you are missing out on something great.

(This was in response to the vile hatred that was put up in response to a comment on Momlogic.)

Tuesday, August 4, 2009

A move perhaps

Having been very happy at my momaroo blog, I felt that I needed a place that was really mine and mine alone. Matt knows that blog and reads it often. I need somewhere that is just mine, where I can write my frustrations and thoughts without fear of repurcussions. Welcome to that blog.

I hope that my friends from xanga and momaroo are able to follow me here. I will continue to blog my everyday life over there, but will reserve this one for those post that are just too much.

So, a little about me. I am 21 for the nineteenth time and quite happy about that. I am married to a man I really love, but lately have been having some difficulties that don't seem to go away. Between us we have eight children. They range in age from 18 down to 2. It is a wild ride. At the moment 7 of the children reside in our home. Only the 18 y/o is not here.

I hope to be able to come here and really put my heart on the line. Without the fear of the "wrong" person reading this, I am expecting to find a freedom in my writing that has been lacking.

Welcome to the blog. Hope to see you again.