I try very hard to show as many people as possible what incredible blessings my sons are- how EASY we actually have it in our lives. I have enlightened some, annoyed a few and shared the wonder of Casey and Connor with countless people. There are days I realize that my efforts and the efforts of families like mine are just not doing enough fast enough to make people realize that being afraid of Down syndrome is foolish.
Today I read that a couple in Portland, Oregon, was awarded nearly 3 MILLION dollars in a wrongful BIRTH suit. Let's look at that again- WRONGFUL. BIRTH!
This couple decided to have genetic testing done during the pregnancy and the child was not found to have Down syndrome. It turns out she does, in fact, have Down syndrome. She has mosaic down syndrome. The difference between mosaic DS and trisomy 21, which C&C have, is that in mosaic DS not every cell is affected- only some have the extra 21st. In trisomy 21 ALL cells have the extra 21st chromosome.
Had the couple known ahead of time they would have aborted their child. Since they didn't know they feel like they are stuck with this little girl.
I am really angry that the case was not thrown out, that a jury sided with them and felt sorry enough for their "burden" that they awarded them ANY money at all. I am angry about the precedent set by this case. But mostly I am angry that this little girl seems unwanted, unappreciated and viewed as a burden rather than a blessing.
WHAT???
What is this world coming to when people do not recognize the value of a human life? I am disgusted. I am angry. I am outraged.
I'm so, so sad.
How dare these people call themselves parents. They aren't. They are greedy, pathetic jerks.
If raising your child is such a chore why not give her to a family that would LOVE to raise her? Why not just admit you are not loving enough or compassionate enough to look at your own flesh and blood and LOVE her regardless of the number of chromosomes she has.
A real mother looks at her child and sees perfection. A REAL mother doesn't need money to "deal" with the burden of knowing her child should have been killed prior to birth.
Apparently the parents have received death threats. Let me cry for them. Nope. I have ZERO sympathy. It's no more than they offered their daughter. They would have slaughtered her before birth had they known she didn't meet their definition of perfect.
90%+ of babies diagnosed before birth with Down syndrome are aborted. KILLED. MURDERED. SLAUGHTERED.
Why?
Because they aren't "perfect"??
What's perfect? I'm not perfect though I don't have any extra chromosomes. I am not even close to perfect. I am flawed. This post proves it. I have an angry heart today. But THOSE people- those disgusting excuses for parents need to realize they aren't perfect either. FAR FROM IT. They are flawed and yet there are many who love and support them regardless of their MANY shortcomings. It's unfortunate their daughter isn't lucky enough to be afforded the same unconditional love.
There are people in my life who think I should ignore things like this. That I should not be affected by stories such as these that PROVE that my kids are less valued in society. How can I ignore this? How am I supposed to know that there are so many who look at me with PITY thinking I am BURDENED by my sons? How can I ignore the fact that as a parent of children with DS I am FORCED to fight for them- to ensure that they are given a fair shake? HOW can I sleep soundly knowing that there are juries out there that feel so strongly that a child should have been killed before birth that they award her parents $3 million in compensation now that they are stuck with her? Things like this serve only to reinforce the view of the majority that children with disabilities are worth LESS than those that don't have any disability.
I've said this before but I feel that it bears repeating- how many rapists, serial killers, drunk drivers, dead beat parents, child abusers, molesters, robbers, or drug addicts have Down syndrome?? How many adults with DS are sitting on death row for killing? So, really, where's the perfection in that??
Casey and Connor may have extra chromosomes. They may not talk yet, we may FIGHT for every damn milestone they hit but they are the most amazing little men I have ever met. They smile at everyone they meet. They see an old man in a store that most people would look past and they SMILE. They reach out to touch him, to say HI, to see the man that so many forget to love. I have seen this behavior time and time again. They make people smile. All the adults and teens I have met with DS are the same way- they see the people the rest of the world would deem unworthy of a smile, a kind word and big hug. What's MORE PERFECT than unrestrained love? What's MORE perfect than a person who sees the beauty that most of us forget to notice.
Normally, I can let things like this just go but not today. I am so sick about this. Not just sick but absolutely FRIGGIN FURIOUS! MY KIDS ARE NOT WORTH LESS THAN SOMEONE WITHOUT DOWN SYNDROME!! THAT LITTLE GIRL DESERVES A LIFE FULL OF LOVE AND NURTURING!! Sometimes I really hate this world.
And as I write that- I turn around and look at my miracle men and I am reminded that my corner of the world is perfect. My little piece of paradise is far, far better because of who my sons are and I adore, love and am blessed by every last chromosome in those little bodies.
And to anyone who is too ignorant to see the joy and beauty of my life I feel SORRY for YOU. I PITY YOU. You don't need to pity ME. My life is better than you could ever imagine.
Saturday, March 10, 2012
Sunday, February 26, 2012
Wonderful things are happening!
What a whirlwind these past few weeks have been! Casey and Connor began participating in Special Olympics Young Athletes and I am ecstatic! This is a wonderful opportunity to get the boys to be more active, to be more social (not that they really need the help in that arena) and for Matt and I to meet other parents who share in the blessings we do. This past Saturday they had a basketball themed day and they seemed to enjoy rolling the balls and catching. Both are still getting used to being around so many new people and they do tend to cling to their volunteers. Overall they are doing great and I think they will grow to love this activity!
C and C on a trampoline at the first session of Young Athletes.
Casey has started walking almost exclusively now. He does still crawl when he wants to get somewhere fast but for the most part he is upright and trucking. It is such a wonderful sight to watch my little miracle man going strong! We go to BJ's about once a week and he wants to walk all over the HUGE warehouse store. So... we let him. We have been waiting a very long 26 months for this milestone and we are encouraging him as much as possible. It is so heartwarming to see the pride and joy on his face when he is walking and exploring. It makes me a little teary. LOVE IT!
Connor is starting to make some strides in the walking department. He had a spiral fracture in his left tibia when he was 18 months old and he had to wear a cast for 1 month and I think that has caused more of a delay than just the low muscle tone but he is showing a lot of interest in keeping up with his very busy brother. Lord help me find the right pair of running shoes for when both of these boys are walking! It will certainly be an adventure! Connor managed about 7 steps a few times tonight so I know he's not far off from being far more mobile than he is now. SMILES!
We have been working on some spoon feeding now and Casey and Connor enjoyed some vanilla pudding the other night. It was everywhere but they are making progress using a spoon. I guess they just refuse to eat anything that looks like it may be remotely healthy- pudding they'll dig in and actually find their mouths. I'm calling it a win!
Casey LOVES vanilla pudding! I think some even made it in his mouth!!
Connor is not quite as enthusiastic but he did eat it eventually!
Well, that's about all the update I have for tonight. I am pretty tired after a busy day. The baby is growing well (and quickly!) and I am starting to feel the drag of being close to the 3rd trimester!
As always, thanks for reading and visiting and feel free to email or comment! I LOVE hearing from you! meghan_wilkinson10808@yahoo.com
=)
C and C on a trampoline at the first session of Young Athletes.
Casey has started walking almost exclusively now. He does still crawl when he wants to get somewhere fast but for the most part he is upright and trucking. It is such a wonderful sight to watch my little miracle man going strong! We go to BJ's about once a week and he wants to walk all over the HUGE warehouse store. So... we let him. We have been waiting a very long 26 months for this milestone and we are encouraging him as much as possible. It is so heartwarming to see the pride and joy on his face when he is walking and exploring. It makes me a little teary. LOVE IT!
Connor is starting to make some strides in the walking department. He had a spiral fracture in his left tibia when he was 18 months old and he had to wear a cast for 1 month and I think that has caused more of a delay than just the low muscle tone but he is showing a lot of interest in keeping up with his very busy brother. Lord help me find the right pair of running shoes for when both of these boys are walking! It will certainly be an adventure! Connor managed about 7 steps a few times tonight so I know he's not far off from being far more mobile than he is now. SMILES!
We have been working on some spoon feeding now and Casey and Connor enjoyed some vanilla pudding the other night. It was everywhere but they are making progress using a spoon. I guess they just refuse to eat anything that looks like it may be remotely healthy- pudding they'll dig in and actually find their mouths. I'm calling it a win!
Casey LOVES vanilla pudding! I think some even made it in his mouth!!
Connor is not quite as enthusiastic but he did eat it eventually!
Well, that's about all the update I have for tonight. I am pretty tired after a busy day. The baby is growing well (and quickly!) and I am starting to feel the drag of being close to the 3rd trimester!
As always, thanks for reading and visiting and feel free to email or comment! I LOVE hearing from you! meghan_wilkinson10808@yahoo.com
=)
Tuesday, February 14, 2012
Happy Valentine's Day!
Today is a day that you are supposed to celebrate the love in your life. I celebrate the love I feel for my family every single day. I am so blessed with a wonderful husband, 2 beautiful and amazing little boys and every other person in my family is outstanding! It's a great life I lead.
In honor of Valentine's day, I made monkey see and monkey do heart shaped pancakes this morning. Apparently they were the wrong shape and therefore not suitable for eating. The dog loved them. I guess in addition to food preferences there are now shape preferences to contend with. Good times!
Never said they were pretty!!
During the boys nap time I made a new piece of wall art for our home- also along the Valentine's Day theme. I was inspired by something I saw on Pinterest. (shocking, I know!) and went to investigate the blog where it originated. You can see her version here: http://simplystoked.blogspot.com/2011/02/book-heart-art.html Adorable, right??
I decided to add my own little twist to the project and this is what I came up with:
I love how it turned out. Now I just have to figure out where to hang this!
Two more things before I go:
1. A great picture of Matthew holding our miracle men. Nothing says "LOVE" to me like watching my husband be the awesome father that he is. Every time he holds our boys my heart smiles.
And finally... A good friend of mine's daughter Kristen made a beautiful video about what her brother Alex means to her. Alex also has Down syndrome. Kristen is a freshman in college and she is already changing the world in amazing ways. I am honored to know her and her family. If you look closely, you'll see a few good shots of my miracle men. Be prepared though- GET THE KLEENEX ready!
In honor of Valentine's day, I made monkey see and monkey do heart shaped pancakes this morning. Apparently they were the wrong shape and therefore not suitable for eating. The dog loved them. I guess in addition to food preferences there are now shape preferences to contend with. Good times!
Never said they were pretty!!
During the boys nap time I made a new piece of wall art for our home- also along the Valentine's Day theme. I was inspired by something I saw on Pinterest. (shocking, I know!) and went to investigate the blog where it originated. You can see her version here: http://simplystoked.blogspot.com/2011/02/book-heart-art.html Adorable, right??
I decided to add my own little twist to the project and this is what I came up with:
I love how it turned out. Now I just have to figure out where to hang this!
Two more things before I go:
1. A great picture of Matthew holding our miracle men. Nothing says "LOVE" to me like watching my husband be the awesome father that he is. Every time he holds our boys my heart smiles.
And finally... A good friend of mine's daughter Kristen made a beautiful video about what her brother Alex means to her. Alex also has Down syndrome. Kristen is a freshman in college and she is already changing the world in amazing ways. I am honored to know her and her family. If you look closely, you'll see a few good shots of my miracle men. Be prepared though- GET THE KLEENEX ready!
Monday, February 13, 2012
These are the days...
I have been thinking a lot lately about changing the blog. When I first started this blog it was so important to me to have a place to write about C&C and all the things I was feeling being a new mother and being new to the world of Down syndrome. Back then it was really all-consuming. As time has passed I find I am now used to this life and celebrating it rather than coping with it I feel like I need to change things HERE to reflect the change I feel in my heart.
I still want to share things about DS but I find it to be less of a focus in my life- it is taking a back seat to raising two very active little boys, getting ready for baby #3, and living life to the fullest and in the best way possible.
That said, I want to start including more things about what we as a family enjoy. I am an avid crafter and reader, Casey and Connor are just getting ready to begin Special Olympics Young Athletes, we love cooking (and eating) and just being together. So, in order to REALLY show people who don't know how normal my life is- I want to share just that. The normal, every day stuff with a nice mix of information about Down syndrome, other disabilities and things to raise awareness. AND of course- TONS of great things about my miracle men- after all- Casey and Connor are the real stars in our world.
Connor and Casey say HI!
I hope you will continue on our journey with us and grow to like the changes. I feel good about this.
I have been keeping really busy the last few weeks trying to get ready for Reagan. I have been crafting like crazy and trying to organize the house so we have room for a whole other person. This is no small feat. Casey and Connor have SO MUCH STUFF! I decided to combat this problem by assembling cube shelves for the living room. I was inspired by friend Jeannette and her awesome living room where everything has a place and her little boy Adam can find anything he wants to play with easily. What a difference!
BEFORE: A huge jumble of toys in a 55 gallon tote.
AFTER: Everything has a place and I am LOVING it!
So, with that tackled, I got to work on some pieces for the nursery. Reagan's room will be Gray and Pink! Thus far I have made the following:
This is a small side table I painted. It has butterflies on it each featuring a different quality or value I want to instill in our new daughter. Too many girls are brought up believing that they should be princesses or (this one makes me shudder) a DIVA. In our house, we want Reagan to grow up knowing the importance of honesty, integrity, faith, love, fun, strength and more. This table will serve as a reminder to her that life is about more than superficial things, that a strong moral foundation is a gift no one can take away.
These are just some simple letters I painted with white acrylic paint and used rub on transfers to spell her first, middle and last names. I added some pre-painted wood embellishments I found at Pat Catan's for $.33/each. I love how they turned out.
My final project was inspired by something I found on Pinterest. If you aren't using Pinterest- you are missing out. I am beyond addicted but always inspired by ideas I see there. This is a great example.
I turned THIS:
Into THIS super cute storage cabinet!
Enough of my crafting. I'll leave you with a Casey and Connor update- they are both tackling going DOWN the stairs. It's pretty fantastic and I am ALMOST past the utter terror I feel watching them go down the stairs. Ehh, what's a few more gray hairs?
Blessings.
As always- emails welcome at meghan_wilkinson10808@yahoo.com
I still want to share things about DS but I find it to be less of a focus in my life- it is taking a back seat to raising two very active little boys, getting ready for baby #3, and living life to the fullest and in the best way possible.
That said, I want to start including more things about what we as a family enjoy. I am an avid crafter and reader, Casey and Connor are just getting ready to begin Special Olympics Young Athletes, we love cooking (and eating) and just being together. So, in order to REALLY show people who don't know how normal my life is- I want to share just that. The normal, every day stuff with a nice mix of information about Down syndrome, other disabilities and things to raise awareness. AND of course- TONS of great things about my miracle men- after all- Casey and Connor are the real stars in our world.
Connor and Casey say HI!
I hope you will continue on our journey with us and grow to like the changes. I feel good about this.
I have been keeping really busy the last few weeks trying to get ready for Reagan. I have been crafting like crazy and trying to organize the house so we have room for a whole other person. This is no small feat. Casey and Connor have SO MUCH STUFF! I decided to combat this problem by assembling cube shelves for the living room. I was inspired by friend Jeannette and her awesome living room where everything has a place and her little boy Adam can find anything he wants to play with easily. What a difference!
BEFORE: A huge jumble of toys in a 55 gallon tote.
AFTER: Everything has a place and I am LOVING it!
So, with that tackled, I got to work on some pieces for the nursery. Reagan's room will be Gray and Pink! Thus far I have made the following:
This is a small side table I painted. It has butterflies on it each featuring a different quality or value I want to instill in our new daughter. Too many girls are brought up believing that they should be princesses or (this one makes me shudder) a DIVA. In our house, we want Reagan to grow up knowing the importance of honesty, integrity, faith, love, fun, strength and more. This table will serve as a reminder to her that life is about more than superficial things, that a strong moral foundation is a gift no one can take away.
These are just some simple letters I painted with white acrylic paint and used rub on transfers to spell her first, middle and last names. I added some pre-painted wood embellishments I found at Pat Catan's for $.33/each. I love how they turned out.
My final project was inspired by something I found on Pinterest. If you aren't using Pinterest- you are missing out. I am beyond addicted but always inspired by ideas I see there. This is a great example.
I turned THIS:
Into THIS super cute storage cabinet!
Enough of my crafting. I'll leave you with a Casey and Connor update- they are both tackling going DOWN the stairs. It's pretty fantastic and I am ALMOST past the utter terror I feel watching them go down the stairs. Ehh, what's a few more gray hairs?
Blessings.
As always- emails welcome at meghan_wilkinson10808@yahoo.com
Sunday, February 5, 2012
Hello again...
Sorry for the gap between posts but there has been much going on around the Wilkinson household. First, I want everyone to know that we found out on January 20th, that our June baby is going to be a beautiful little GIRL! We are ecstatic and can't wait to meet her. We have decided her name will be Reagan Delaney. All results from her ultrasound look great and everything is measuring perfectly. While we did not get any prenatal testing with this pregnancy I feel like everything is so different this time around. She is much more active than her brothers were at this point and though the boys showed no soft markers for Down syndrome on any ultrasound I am feeling confident our little princess will be born without an extra chromosome. It's a gut feeling and I could definitely be wrong (it has been known to happen on occasion) I will love her regardless of her chromosome count if I am wrong. It doesn't matter. She is already adored- so much.
Casey and Connor are making huge strides every week. Connor is finally opening up verbally a little- he now says baby and he is beginning to walk more to keep up with his brother. Casey says dada and no and yay- though they both throw out words every once in a while that surprise both of us- Casey said down and Connor said toes but only once each.
This week both of our miracle men went down the stairs for the first time. That was a heart pounding experience for mom, believe me!
I never have posted much about the feeding issues we have with C&C but they are both incredibly picky eaters and refuse about 95% of what we offer them. They like crackers and toast and dry cereal. Rounding out their diet is yogurt and applesauce and an occasional chicken nugget but that is rare and only Casey eats those. Connor has lost some weight and we are constantly trying to figure out what they may eat. It turns out Casey is a HUGE fan of the chocolate chip cookie. See pictures below.
Connor is not a fan of the chocolate chip cookie. Note how clean he is after throwing said cookie to the dog.
And the search continues for more foods that these two will eat. It's an adventure.
In other areas of our lives- On January 24th, Declan Simon, a good friend of my family died. He had battled cancer for a long time but was taken by a staph infection he got while in the hospital. It was a big loss for many including my mom who had known him for many, many years. Declan was a good hearted man, a devout Catholic, an amazing drummer, a great father and friend and most importantly an outstanding person. He was also a big advocate for Down syndrome, volunteering at many events hosted by the Up Side of Downs. He was very much looking forward to the Buddy Walk this year. He adored Casey and Connor and they adored him. Declan was laid to rest wearing his blue and yellow Buddy Walk/ Down syndrome awareness bracelet. He is greatly missed.
Finally, I want to take this opportunity to let you all know about a very special little girl who lives just one town over from my family. Her name is Quinn and she is 5 months old. Quinn has Junctional Epidermolysis Bullosa. I first learned of EB on the blog "EB"ing a Mommy- http://randycourtneytripproth.blogspot.com/ - Tripp Roth was an inspiration to many and his mother, a true hero in every sense of the word. I cannot fathom what Quinn and her family are going through with this awful disease but I want them to know that they are not alone and that there are people praying for them. Please keep them in your prayers. Locally, there will be a spaghetti dinner to benefit this little angel. If you would like to help and are not in the area to attend the dinner you can send a donation to:
Quinn R. Seymour Benefit
℅ Knights of Columbus
P.O. Box 2189
Hudson, OH 44236
Every. Single. Dollar. Helps. I realize that times are tough but having a child with extreme medical issues trumps most financial concerns the majority of us have. If you can help- please do. If you can't help financially share her story and hopefully someone you know can help. Thanks so much. If you would like to learn more about Quinn she has a Caring Bridge page that can be viewed here: http://www.caringbridge.org/visit/quinnseymour . You will have to create a Caring Bridge login to view but worth it to follow her story. She is stunningly beautiful.
Ok friends, thank you for reading. Thank you for sharing in our journey. Every view of our blog warms my heart. Emails and comments ALWAYS welcome to meghan_wilkinson10808@yahoo.com
xoxo.
Casey and Connor are making huge strides every week. Connor is finally opening up verbally a little- he now says baby and he is beginning to walk more to keep up with his brother. Casey says dada and no and yay- though they both throw out words every once in a while that surprise both of us- Casey said down and Connor said toes but only once each.
This week both of our miracle men went down the stairs for the first time. That was a heart pounding experience for mom, believe me!
I never have posted much about the feeding issues we have with C&C but they are both incredibly picky eaters and refuse about 95% of what we offer them. They like crackers and toast and dry cereal. Rounding out their diet is yogurt and applesauce and an occasional chicken nugget but that is rare and only Casey eats those. Connor has lost some weight and we are constantly trying to figure out what they may eat. It turns out Casey is a HUGE fan of the chocolate chip cookie. See pictures below.
Connor is not a fan of the chocolate chip cookie. Note how clean he is after throwing said cookie to the dog.
And the search continues for more foods that these two will eat. It's an adventure.
In other areas of our lives- On January 24th, Declan Simon, a good friend of my family died. He had battled cancer for a long time but was taken by a staph infection he got while in the hospital. It was a big loss for many including my mom who had known him for many, many years. Declan was a good hearted man, a devout Catholic, an amazing drummer, a great father and friend and most importantly an outstanding person. He was also a big advocate for Down syndrome, volunteering at many events hosted by the Up Side of Downs. He was very much looking forward to the Buddy Walk this year. He adored Casey and Connor and they adored him. Declan was laid to rest wearing his blue and yellow Buddy Walk/ Down syndrome awareness bracelet. He is greatly missed.
Finally, I want to take this opportunity to let you all know about a very special little girl who lives just one town over from my family. Her name is Quinn and she is 5 months old. Quinn has Junctional Epidermolysis Bullosa. I first learned of EB on the blog "EB"ing a Mommy- http://randycourtneytripproth.blogspot.com/ - Tripp Roth was an inspiration to many and his mother, a true hero in every sense of the word. I cannot fathom what Quinn and her family are going through with this awful disease but I want them to know that they are not alone and that there are people praying for them. Please keep them in your prayers. Locally, there will be a spaghetti dinner to benefit this little angel. If you would like to help and are not in the area to attend the dinner you can send a donation to:
Quinn R. Seymour Benefit
℅ Knights of Columbus
P.O. Box 2189
Hudson, OH 44236
Every. Single. Dollar. Helps. I realize that times are tough but having a child with extreme medical issues trumps most financial concerns the majority of us have. If you can help- please do. If you can't help financially share her story and hopefully someone you know can help. Thanks so much. If you would like to learn more about Quinn she has a Caring Bridge page that can be viewed here: http://www.caringbridge.org/visit/quinnseymour . You will have to create a Caring Bridge login to view but worth it to follow her story. She is stunningly beautiful.
Ok friends, thank you for reading. Thank you for sharing in our journey. Every view of our blog warms my heart. Emails and comments ALWAYS welcome to meghan_wilkinson10808@yahoo.com
xoxo.
Monday, January 16, 2012
Update on Team Amelia
The public outcry over the treatment of the beautiful little girl deemed unworthy of kidney transplant based on her mental development is staggering. Nearly 17,000 people have signed a petition demanding that Children's Hospital of Philadelphia reconsider their decision to deny young Amelia a kidney.
I just read a report on CBSPhilly.com that included a statement from the hospital. 'CHOP has issued a statement saying it cannot comment on individual cases due to medical privacy laws, but reaffirms that it does not discriminate “in any way.”' and further reports indicate that the hospital has contacted Amelia's family to arrange a meeting to discuss her daughter’s case further.
It just goes to show you what THOUSANDS of angry parents and friends can accomplish when they speak out for what is right. Allowing Mia to have this procedure is the ONLY right answer.
Denying a patient a medical procedure based on mental development or difficulties is in direct violation with the United Nations Convention on the Rights of Persons with Disabilities. In Article 25 it states that parties are to “recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.”
Further, Article 10 is about the right to life and reaffirms that “every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”
I will be interested to see if CHOP actually stands by their original decision or if Amelia is given the life saving transplant that would never be denied a typical child. It still disturbs and disgusts me that in 2012 we are still so in the dark ages when it comes to people with cognitive delays and disabilities. There are so many stereotypes to overcome- so much ignorance to combat and stories like this one show just how many people are willing to stand up and demand better- to demand a change.
The fact that strangers all over the world are fighting not only for this ONE child but for ALL children that may one day be denied gives me hope that we are moving in the right direction.
If you haven't signed the petition for Amelia yet you can do so here: http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive
As always, I welcome all comments either to the blog or to my email address meghan_wilkinson10808@yahoo.com
I just read a report on CBSPhilly.com that included a statement from the hospital. 'CHOP has issued a statement saying it cannot comment on individual cases due to medical privacy laws, but reaffirms that it does not discriminate “in any way.”' and further reports indicate that the hospital has contacted Amelia's family to arrange a meeting to discuss her daughter’s case further.
It just goes to show you what THOUSANDS of angry parents and friends can accomplish when they speak out for what is right. Allowing Mia to have this procedure is the ONLY right answer.
Denying a patient a medical procedure based on mental development or difficulties is in direct violation with the United Nations Convention on the Rights of Persons with Disabilities. In Article 25 it states that parties are to “recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.”
Further, Article 10 is about the right to life and reaffirms that “every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”
I will be interested to see if CHOP actually stands by their original decision or if Amelia is given the life saving transplant that would never be denied a typical child. It still disturbs and disgusts me that in 2012 we are still so in the dark ages when it comes to people with cognitive delays and disabilities. There are so many stereotypes to overcome- so much ignorance to combat and stories like this one show just how many people are willing to stand up and demand better- to demand a change.
The fact that strangers all over the world are fighting not only for this ONE child but for ALL children that may one day be denied gives me hope that we are moving in the right direction.
If you haven't signed the petition for Amelia yet you can do so here: http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive
As always, I welcome all comments either to the blog or to my email address meghan_wilkinson10808@yahoo.com
Friday, January 13, 2012
RISE UP and FIGHT!
I settled down to relax for the evening next to my husband. The boys are in bed and we were going to watch the final episode of Extreme Makeover Home Edition. I got on my phone to check FaceBook on a commercial and was sickened and dumbfounded by a story I read about Amelia, a young girl who has Wolf-Hirschhorn Syndrome.
Amelia needs a life saving kidney transplant. She has a family donor. She was DENIED this operation because she has mental retardation.
Wait! What? Back up!!
Am I missing something? Is it not 2012??
Sadly, I am learning that this is not an unusual occurence in the world. If a patient's IQ is not high enough they can and routinely ARE denied transplants. HOW IS THIS LEGAL?
Just because a doctor does not understand the value of a child's life with a disability does not mean she doesn't have a HIGH QUALITY OF LIFE! Just because some arrogant jerk thinks her life is worth less because she is not as high on the IQ scale as another child he is willingly sentencing her to death.
The last I checked GOD is the only GOD. Just because you wear a white coat does not make you a GOD- not even close! This doctor who decided Amelia is not worthy is a MURDERER. He is WILLFULLY killing a beautiful child because HE is ignorant!
I am sick over this.
I sit here, thinking of my beautiful boys who are technically "retarded" based on a medical definition. I wonder what I would do if for some reason one of them needed a transplant to save their life and they were denied. I know what I would do. I would FIGHT. I would RISE UP and DEMAND better! I would take their story to every person I could think of and I would make sure that every media outlet, every politician, every parent and patient's rights group knew about their situation. Amelia may not be my daughter but as the mother of two children with disabilities this hits closer to home than I can express. I would rip the very heart from my chest and somehow give it to my child to ENSURE he would live. For Amelia- I will fight just as hard. I will fight and speak out for this sweet girl because SHE CAN'T speak for herself.
Who should be the one who determines who lives and who dies. Easy. God. Not a doctor. NOT a team of doctors. NOT SOME HOSPITAL.
Help save Amelia. Help her family. Help kids like Casey and Connor who may one day be in this same boat and will need THIS case as a precedent setter.
SPEAK OUT and RISE UP! Fight for Amelia. Fight for all the kids who can't do it themselves.
To read more about Amelia visit here: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/
To learn more about Wolf-Hirschhorn Syndrome visit here: http://www.wolfhirschhorn.org/about-wolf-hirschhorn-syndrome
This is SAD. But more than sadness I feel anger- RAGE! This may be about a little girl I have never met. But next time it could be MY sons. It could be any one of the hundreds of children I have met in the Ds community. I WILL NOT allow myself to sit idly by while this happens.
Stand and fight with me. Children's Hospital of Philadelphia has a FaceBook page. If YOU are disgusted- write them there. Share your outrage! https://www.facebook.com/ChildrensHospitalofPhiladelphia
Amelia needs a life saving kidney transplant. She has a family donor. She was DENIED this operation because she has mental retardation.
Wait! What? Back up!!
Am I missing something? Is it not 2012??
Sadly, I am learning that this is not an unusual occurence in the world. If a patient's IQ is not high enough they can and routinely ARE denied transplants. HOW IS THIS LEGAL?
Just because a doctor does not understand the value of a child's life with a disability does not mean she doesn't have a HIGH QUALITY OF LIFE! Just because some arrogant jerk thinks her life is worth less because she is not as high on the IQ scale as another child he is willingly sentencing her to death.
The last I checked GOD is the only GOD. Just because you wear a white coat does not make you a GOD- not even close! This doctor who decided Amelia is not worthy is a MURDERER. He is WILLFULLY killing a beautiful child because HE is ignorant!
I am sick over this.
I sit here, thinking of my beautiful boys who are technically "retarded" based on a medical definition. I wonder what I would do if for some reason one of them needed a transplant to save their life and they were denied. I know what I would do. I would FIGHT. I would RISE UP and DEMAND better! I would take their story to every person I could think of and I would make sure that every media outlet, every politician, every parent and patient's rights group knew about their situation. Amelia may not be my daughter but as the mother of two children with disabilities this hits closer to home than I can express. I would rip the very heart from my chest and somehow give it to my child to ENSURE he would live. For Amelia- I will fight just as hard. I will fight and speak out for this sweet girl because SHE CAN'T speak for herself.
Who should be the one who determines who lives and who dies. Easy. God. Not a doctor. NOT a team of doctors. NOT SOME HOSPITAL.
Help save Amelia. Help her family. Help kids like Casey and Connor who may one day be in this same boat and will need THIS case as a precedent setter.
SPEAK OUT and RISE UP! Fight for Amelia. Fight for all the kids who can't do it themselves.
To read more about Amelia visit here: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/
To learn more about Wolf-Hirschhorn Syndrome visit here: http://www.wolfhirschhorn.org/about-wolf-hirschhorn-syndrome
This is SAD. But more than sadness I feel anger- RAGE! This may be about a little girl I have never met. But next time it could be MY sons. It could be any one of the hundreds of children I have met in the Ds community. I WILL NOT allow myself to sit idly by while this happens.
Stand and fight with me. Children's Hospital of Philadelphia has a FaceBook page. If YOU are disgusted- write them there. Share your outrage! https://www.facebook.com/ChildrensHospitalofPhiladelphia
Thursday, January 12, 2012
Typical....
Life with two 2 year old's is pretty amazing. These two crazy boys go non-stop from the time they get up (usually way too early for my taste) until I finally corral them into cribs for naps (which are usually just quick pit stops to recharge their little batteries) so they can play until bed. Everything they do is fantastic!
I know, I know, someone out there is dying to say , 'Just you wait! The terrible two's are coming' or the 'Trying 3's are just around the corner'.... I can not believe how many times I have heard those things when I proudly proclaim my boys are wonderful and they are well behaved. They are. Truly.
Now, don't get me wrong- we have our moments. The boys are going through a particularly bad biting phase right now. It's not uncommon for one or both of them to have at least 3 bruises at any given time from his brother's teeth. I am trying time out right now. It's somewhat effective.
Also, like typical 2 year old's they don't like to share. Ever. They subscribe to the Toddler Property Laws.
Casey especially believes that ALL the toys in the house are his and his alone. If Connor is across the room playing by himself Casey will quickly crawl over and take whatever it is he is playing with away from him. If Connor resists- Casey bites. On the bright side, they are starting to combine skills- stealing toys AND biting.
They fight sleep, they throw food and cups on the floor at meal times, they pull the dog's tail and ears and occasionally his tongue, too! They have selective hearing, they scream when they are frustrated. They are busy and curious and INTO EVERYTHING! They pull paper out of drawers, dump my purse out, and fight me tooth and nail over diaper changes. But guess what? They. Are. Two. It's all normal boundary testing.
I accept this.
I relish it.
I LOVE that they are so....
TYPICAL!
People assume my life is hard because I have 2 boys with a disability. That's THEIR perception. In my eyes, Casey and Connor are the perfect ones. And, my life is not hard. It's wonderful. My boys are just like any other 2 year old's you may meet.
They love Sesame Street- especially Elmo.
They get excited when they see big trucks outside our house.
They love to read books.
They enjoy soaking the entire bathroom(and mommy and daddy)during bath time while seeing who can splash higher, faster, or more.
They like wrestling with Daddy.
They love toy trucks and making truck noises.
They build awesome towers with their blocks.
They enjoy finger painting and coloring.
Totally typical. COMPLETELY wonderful.
People will always have their ideas about Down syndrome. It is my job to make sure that I inform as many as I can that life with a bonus 21st chromosome is awesome. Yes, we go to speech therapy 4 times a month and physical therapy twice a month and we have an awesome Help Me Grow and Early Intervention team but I don't see these things as a burden or as anything abnormal. Lots of kids and adults use physical therapists and speech therapists- we see them all the time at our appointments. I view our extra things as a bonus- we have an entire support team to answer questions, help us to understand how the body works, how the brain processes sounds, how hard the hands work to grip a pencil. I look at all the extras as BLESSINGS!
We have a great life. I think everyone should be as happy and fulfilled as we are. I never look at my life at the end of the day and wish I were someone else. However, EVERY NIGHT I thank GOD for giving me such a rewarding and love centered life.
I know, I know, someone out there is dying to say , 'Just you wait! The terrible two's are coming' or the 'Trying 3's are just around the corner'.... I can not believe how many times I have heard those things when I proudly proclaim my boys are wonderful and they are well behaved. They are. Truly.
Now, don't get me wrong- we have our moments. The boys are going through a particularly bad biting phase right now. It's not uncommon for one or both of them to have at least 3 bruises at any given time from his brother's teeth. I am trying time out right now. It's somewhat effective.
Also, like typical 2 year old's they don't like to share. Ever. They subscribe to the Toddler Property Laws.
Casey especially believes that ALL the toys in the house are his and his alone. If Connor is across the room playing by himself Casey will quickly crawl over and take whatever it is he is playing with away from him. If Connor resists- Casey bites. On the bright side, they are starting to combine skills- stealing toys AND biting.
They fight sleep, they throw food and cups on the floor at meal times, they pull the dog's tail and ears and occasionally his tongue, too! They have selective hearing, they scream when they are frustrated. They are busy and curious and INTO EVERYTHING! They pull paper out of drawers, dump my purse out, and fight me tooth and nail over diaper changes. But guess what? They. Are. Two. It's all normal boundary testing.
I accept this.
I relish it.
I LOVE that they are so....
TYPICAL!
People assume my life is hard because I have 2 boys with a disability. That's THEIR perception. In my eyes, Casey and Connor are the perfect ones. And, my life is not hard. It's wonderful. My boys are just like any other 2 year old's you may meet.
They love Sesame Street- especially Elmo.
They get excited when they see big trucks outside our house.
They love to read books.
They enjoy soaking the entire bathroom(and mommy and daddy)during bath time while seeing who can splash higher, faster, or more.
They like wrestling with Daddy.
They love toy trucks and making truck noises.
They build awesome towers with their blocks.
They enjoy finger painting and coloring.
Totally typical. COMPLETELY wonderful.
People will always have their ideas about Down syndrome. It is my job to make sure that I inform as many as I can that life with a bonus 21st chromosome is awesome. Yes, we go to speech therapy 4 times a month and physical therapy twice a month and we have an awesome Help Me Grow and Early Intervention team but I don't see these things as a burden or as anything abnormal. Lots of kids and adults use physical therapists and speech therapists- we see them all the time at our appointments. I view our extra things as a bonus- we have an entire support team to answer questions, help us to understand how the body works, how the brain processes sounds, how hard the hands work to grip a pencil. I look at all the extras as BLESSINGS!
We have a great life. I think everyone should be as happy and fulfilled as we are. I never look at my life at the end of the day and wish I were someone else. However, EVERY NIGHT I thank GOD for giving me such a rewarding and love centered life.
Thursday, January 5, 2012
They won't eat REAL food...
My boys are EXTREMELY picky eaters. Or, "non-eaters" to be more accurate! They live on dry Cheerios, plain waffles, dry toast, applesauce, yogurt, milk, Goldfish, graham crackers, egg yolks- no whites- and occasionally pizza or chicken nuggets. That's it. They have been this way for over a year now and everyone keeps telling me they will grow out of it.
I am beginning to question that.
My husband is also really picky. He does eat a better variety of food than the boys and is far more willing to try new things but he is still pretty limited in his diet.
It must be genetic.
Anyway, my boys won't eat real food. That said, my nickname for Connor is "the goat"- he will eat paper, pool noodles (you know, the Styrofoam ones?)and he can regularly be seen LICKING the carpet. Thanks to our dog for teaching him *that* delightful trick! Casey also enjoys paper- important papers seem to be his favorite- and they both LOVE to chew on socks.
The other night we took the boys up for bath and while I was undressing Connor, Casey quickly crawled away and went to see what our cats were up to. We have 4 cats. Little Lady is the momma to Michael, Junior and Goliath. All the males are pretty large cats. They also all seem to shed wads of fur all over the house. All. The. Time.
So, Casey is on his adventure and I peek around the corner to look for him just in time to see him pick up a gigantic fur ball from the floor and SHOVE it in his mouth without a hesitation. I immediately scrambled over trying to pull the kitten-sized ball of fur out of my toddler's mouth. He attempted to bite my fingers off and I jumped back, shaking my hand and wincing at the teeth imprints he left. I refocused on getting the hair out of his mouth only to find he swallowed it. Oh. My. Gosh! My kid just ate a hairball. Fail.
Not only did he eat the hairball- he also seemed to enjoy it. Immensely. To make that point more clear he smacked his lips a few times and then smiled at me. He looked content and I felt nauseous.
Pasta? No way!
Fruit? Nope!!
Vegetables? Not a chance!
But a rogue hairball on the carpet- DELICACY!
I'm still waiting to find that one in a diaper.
Ahh, the joys of motherhood.
I am beginning to question that.
My husband is also really picky. He does eat a better variety of food than the boys and is far more willing to try new things but he is still pretty limited in his diet.
It must be genetic.
Anyway, my boys won't eat real food. That said, my nickname for Connor is "the goat"- he will eat paper, pool noodles (you know, the Styrofoam ones?)and he can regularly be seen LICKING the carpet. Thanks to our dog for teaching him *that* delightful trick! Casey also enjoys paper- important papers seem to be his favorite- and they both LOVE to chew on socks.
The other night we took the boys up for bath and while I was undressing Connor, Casey quickly crawled away and went to see what our cats were up to. We have 4 cats. Little Lady is the momma to Michael, Junior and Goliath. All the males are pretty large cats. They also all seem to shed wads of fur all over the house. All. The. Time.
So, Casey is on his adventure and I peek around the corner to look for him just in time to see him pick up a gigantic fur ball from the floor and SHOVE it in his mouth without a hesitation. I immediately scrambled over trying to pull the kitten-sized ball of fur out of my toddler's mouth. He attempted to bite my fingers off and I jumped back, shaking my hand and wincing at the teeth imprints he left. I refocused on getting the hair out of his mouth only to find he swallowed it. Oh. My. Gosh! My kid just ate a hairball. Fail.
Not only did he eat the hairball- he also seemed to enjoy it. Immensely. To make that point more clear he smacked his lips a few times and then smiled at me. He looked content and I felt nauseous.
Pasta? No way!
Fruit? Nope!!
Vegetables? Not a chance!
But a rogue hairball on the carpet- DELICACY!
I'm still waiting to find that one in a diaper.
Ahh, the joys of motherhood.
Monday, January 2, 2012
New Year. New Resolution.
Happy 2012!!!! Looking back on 2011 I can honestly say we had a wonderful year. I would rate my overall happiness with 2011 around 98%. We somehow managed to keep our two boys super healthy last year. They each had an ear infection and a couple of cases of pink eye- though I debate the diagnosis. Connor had his little broken leg but he was a great sport about being casted for 4 weeks. We had a great turnout for the Buddy Walk. We got to meet some really fantastic new friends and spent some serious quality time with family. I am so thankful and grateful for every blessing we had last year and I am very optimistic for 2012!
NEW RESOLUTIONS!
I am guilty of making New Year's Resolutions and fizzling out on them within the first few months of the year. I would like to break that cycle this year. I am making a few, simple resolutions for 2012:
*Update this blog once a week. (Hopefully that will be possible after baby #3 comes in June!)
*Continue to spread the word that DS is not scary- that my life doesn't suck, and that my kids are MORE THAN WORTHY OF LIFE!
*Begin potty training Casey and Connor.
That's it. I hope that our friends and readers continue on our journey with us. I hope that we can get the blog up to over 100 followers- we are at 77! I also hope that 2012 is the year I can make a bigger impact, and a bigger difference in the world. It is an honor and a privilege to be on this road and to speak for my sons until they can speak for themselves. Thanks for being here in 2011 and staying in 2012.
Love, Meghan
NEW RESOLUTIONS!
I am guilty of making New Year's Resolutions and fizzling out on them within the first few months of the year. I would like to break that cycle this year. I am making a few, simple resolutions for 2012:
*Update this blog once a week. (Hopefully that will be possible after baby #3 comes in June!)
*Continue to spread the word that DS is not scary- that my life doesn't suck, and that my kids are MORE THAN WORTHY OF LIFE!
*Begin potty training Casey and Connor.
That's it. I hope that our friends and readers continue on our journey with us. I hope that we can get the blog up to over 100 followers- we are at 77! I also hope that 2012 is the year I can make a bigger impact, and a bigger difference in the world. It is an honor and a privilege to be on this road and to speak for my sons until they can speak for themselves. Thanks for being here in 2011 and staying in 2012.
Love, Meghan
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