Spinal Muscular Atrophy and Cassandra Byrd's twins, Kyle and Lauren, were born with SMA Type 2.
I met Cass back in 2007 during the latter part of my pregnancy. I joined the June/July 2007 mulitples pregnancy board on the old babycenter.com and that is where I met her.
She doesn't know it but she is my idol! LOL Cass, had trouble baking her first baby, Jenna, and delivered early. Well, the twins taxed her body, she wound up in the hospital, on bed rest and worse of all on Mag........MAG is AWFUL. She will certainly attest to that.
I had my own rounds with preterm labor beginning in April/May 2007 and got repeated shots of Terb. Nothing at all like Mag but I hated the damnable shots just the same. Anyways, Cass beat me. She delivered a couple days sooner than I did BUT she carried Kyle and Lauren LONGER than I did and LONGER than she carried Jenna too. She was even able to nurse her twins (for a LONG TIME........I am secretly green with envy!).
See, I was hit with a medical diagnosis for Joseph straight out the gate. We learned within hours of his birth that he was hypotonic (low muscle tone) which comes with Down syndrome. Cass and her husband, Chris, learned one year ago TODAY the twins had SMA. This is part of their story, won't you read it and check it and drop some money their way to put and END to SMA?
Click on this link and it will take you to Cass' blog..........BahamasBahamasBahamas. What a mantra!
Til next time...........love your babies and count your blessings.
Tuesday, October 27, 2009
Thursday, October 22, 2009
Alex the Great
I first read about Alex in the first installment of the book, Gifts: Mothers reflect on how children with Down syndrome enrich their lives. At that time I had no idea, in the years to come, I would learn more about Alex and even become a nettie (my term for an internet buddy) to his mom, Nicol.
This boy, excuse me, this man just celebrated his 18th birthday. Over the past two years I have gotten to see some recent pictures of Alex and hear about some of his activities. I am drawn to this young man. Like a moth to a flame, I cannot help myself. I revel in his triumphs and love to hear of the things he is doing. Seeing pictures of him, doing exactly what a teenager should be doing makes my heart sing. It is just one more notch to help confirm that people with Down syndrome MATTER. They can live good lives, they can be happy, they can be contributing members of society. The montage Nicol created shows the LOVE and ACCEPTANCE he has known his whole life.
Here is the link to Alex's 18th Birthday Montage (I cannot put the whole thing here because I cannot re-size it to fit my page).
There is no denying it, Alex is a handsome young man. I love looking at him even more so because when I look at him, I can see Joseph in 15 years. Normally, I cannot see Joseph as a young man in my mind's eye but when I see Alex, I see Joseph. And I thank Nicol for sharing him with me. She has given me a gift in the pictures she has posted. And now I would like to share that gift with you. Thanks, Nicol for letting me share this.
Christie.......momma to 3 special boys (one of whom just happens to have 47 chromosomes)
This boy, excuse me, this man just celebrated his 18th birthday. Over the past two years I have gotten to see some recent pictures of Alex and hear about some of his activities. I am drawn to this young man. Like a moth to a flame, I cannot help myself. I revel in his triumphs and love to hear of the things he is doing. Seeing pictures of him, doing exactly what a teenager should be doing makes my heart sing. It is just one more notch to help confirm that people with Down syndrome MATTER. They can live good lives, they can be happy, they can be contributing members of society. The montage Nicol created shows the LOVE and ACCEPTANCE he has known his whole life.
Here is the link to Alex's 18th Birthday Montage (I cannot put the whole thing here because I cannot re-size it to fit my page).
There is no denying it, Alex is a handsome young man. I love looking at him even more so because when I look at him, I can see Joseph in 15 years. Normally, I cannot see Joseph as a young man in my mind's eye but when I see Alex, I see Joseph. And I thank Nicol for sharing him with me. She has given me a gift in the pictures she has posted. And now I would like to share that gift with you. Thanks, Nicol for letting me share this.
Christie.......momma to 3 special boys (one of whom just happens to have 47 chromosomes)
Monday, October 19, 2009
PLEASE DONATE to the Flege Family Auction.
CJ's auction for the Flege Family
Please click on the about link to see the auction CJ has going for Amy and Mike Flege. I will now plagiarise CJ's blog and repost the beginning of her post for the auction. :o)
Amy and Mike/Stacy have been married almost nineteen years. They have three children.
After losing his job last year before Christmas, Mike/Stacy was finally able to get another. It wasn't easy catching up, but the family manages to live on one income while Amy takes Mayson (who is enhanced with Down syndrome) to therapies, doctor appointments, etc.
Unfortunately, Mike/Stacy's new job does not offer any vacation or disability, etc. Therefore, while he recovers from his open heart surgery, the family will have no income!!!
Can you say stress???
This family is typically the ones on the giving side of life, so it's been difficult for them to accept being on the other side of things. They are greatly appreciative for their community and friends during this time.
Let's show them the love and support they've shown others over the years!
Here's how it works...there is a button under each item. Bids for each item can be made in increments of one dollar. For each dollar an individual donates, their name goes into "the pot" one time. The winner will be determined by Random.Org. The more dollar donations you put towards an item, the more likely you will be to win that item!
All proceeds are donated to The Flege Family to aid them during Mike/Stacy's recovery from open heart surgery.
Please, even if you cannot purchase an item, would you consider donating an item or even just a couple dollars? Every little bit will help.
Let's show the world what love and support are all about!!
Please click on the about link to see the auction CJ has going for Amy and Mike Flege. I will now plagiarise CJ's blog and repost the beginning of her post for the auction. :o)
Amy and Mike/Stacy have been married almost nineteen years. They have three children.
After losing his job last year before Christmas, Mike/Stacy was finally able to get another. It wasn't easy catching up, but the family manages to live on one income while Amy takes Mayson (who is enhanced with Down syndrome) to therapies, doctor appointments, etc.
Unfortunately, Mike/Stacy's new job does not offer any vacation or disability, etc. Therefore, while he recovers from his open heart surgery, the family will have no income!!!
Can you say stress???
This family is typically the ones on the giving side of life, so it's been difficult for them to accept being on the other side of things. They are greatly appreciative for their community and friends during this time.
Let's show them the love and support they've shown others over the years!
Here's how it works...there is a button under each item. Bids for each item can be made in increments of one dollar. For each dollar an individual donates, their name goes into "the pot" one time. The winner will be determined by Random.Org. The more dollar donations you put towards an item, the more likely you will be to win that item!
All proceeds are donated to The Flege Family to aid them during Mike/Stacy's recovery from open heart surgery.
Please, even if you cannot purchase an item, would you consider donating an item or even just a couple dollars? Every little bit will help.
Let's show the world what love and support are all about!!
Tuesday, October 13, 2009
Would you?
I have three boys. Two of them have 46 chromosomes a piece and one of them is sporting 47 chromosomes. Yes, one of my boys has Down syndrome or Trisomy 21 meaning he has 3 copies of the 21st chromosome.
One son is handsome, charming, stubborn, genuine, unique, talented, farsighted, loquacious, witty, easily entertained, softhearted, levelheaded, loving, dishwater-blond haired and blue eyed.
One son is handsome, charming, stubborn, genuine, unique, loquacious, witty, easily entertained, softhearted, levelheaded, loving, can melt your heart with his smile, blond haired and blue eyed.
One son is handsome, charming, stubborn, genuine, unique, loquacious, witty, easily entertained, softhearted, loving, a copy-cat who loves to do what the big kids are doing, brown haired and hazel eyed.
Can you guess which child is which? Who is Jared, which is Joseph, and then who is Jackson. See I don't see the Down syndrome as a descriptive of my son. Some people do and I reckon that is okay; if he must have a label in life it might as well be Down syndrome. Jared is often labeled four-eyes and an advanced learner. He began talking at a very young age. Speaking to him at age 2 was like carrying on a conversation with 5 year old, it was nearly freakish looking back on it I can see that. But at the time, I did not realize how truly odd that was. Jackson? Well, he is labeled the curmudgeon in our household. He is like a little old man trapped in a toddler's body. So, that leaves Joseph. Joseph is my cherubim, my angel, my sweet-souled child that will NEVER become jaded like the rest of us do. His personality, his heart, and yes, his 47th chromosome won't allow it and neither will I.
Some might say I have rose-colored glasses on. Whatever. My life is MY LIFE, I know what I live and I know what I teach my kids. My oldest, Jared, the farsighted one is often picked on at school because he simply does not relate to the kids his age. His mind is ahead of theirs but his lack of maturity won't let him meld with the older kids. It is tough, he does cry about it from time to time and I hate it for him. I hate the idea that someday, someone will say hurtful things about Joseph and his cognitive abilities. I hate that someday, someone will say hurtful things to Jackson about his brother and tell him they cannot really be twins because they are so very different (when in fact they aren't that different at all). The world is full of haters, nay-sayers, and those that don't believe in treating everyone the same.
I do believe in treating them all the same and that is why I can see the beauty and handsomeness in all my boys. They are gorgeous little men who will someday be gorgeous men no matter what some people may think. So I guess my whole rambling here is about whether or not you can see past the 47th chromosome that belongs to the child I see as the one son that is handsome, charming, stubborn, genuine, unique, loquacious, witty, easily entertained, softhearted, levelheaded, loving, can melt your heart with his smile, blond haired and blue eyed? Would you?
(by the way, Jackson is my brown haired kid with hazel eyes and, therefore, Jared is paired with the first descriptive)
Until next time, hug your babies and never take for granted the blessing in your life.
Christie
One son is handsome, charming, stubborn, genuine, unique, talented, farsighted, loquacious, witty, easily entertained, softhearted, levelheaded, loving, dishwater-blond haired and blue eyed.
One son is handsome, charming, stubborn, genuine, unique, loquacious, witty, easily entertained, softhearted, levelheaded, loving, can melt your heart with his smile, blond haired and blue eyed.
One son is handsome, charming, stubborn, genuine, unique, loquacious, witty, easily entertained, softhearted, loving, a copy-cat who loves to do what the big kids are doing, brown haired and hazel eyed.
Can you guess which child is which? Who is Jared, which is Joseph, and then who is Jackson. See I don't see the Down syndrome as a descriptive of my son. Some people do and I reckon that is okay; if he must have a label in life it might as well be Down syndrome. Jared is often labeled four-eyes and an advanced learner. He began talking at a very young age. Speaking to him at age 2 was like carrying on a conversation with 5 year old, it was nearly freakish looking back on it I can see that. But at the time, I did not realize how truly odd that was. Jackson? Well, he is labeled the curmudgeon in our household. He is like a little old man trapped in a toddler's body. So, that leaves Joseph. Joseph is my cherubim, my angel, my sweet-souled child that will NEVER become jaded like the rest of us do. His personality, his heart, and yes, his 47th chromosome won't allow it and neither will I.
Some might say I have rose-colored glasses on. Whatever. My life is MY LIFE, I know what I live and I know what I teach my kids. My oldest, Jared, the farsighted one is often picked on at school because he simply does not relate to the kids his age. His mind is ahead of theirs but his lack of maturity won't let him meld with the older kids. It is tough, he does cry about it from time to time and I hate it for him. I hate the idea that someday, someone will say hurtful things about Joseph and his cognitive abilities. I hate that someday, someone will say hurtful things to Jackson about his brother and tell him they cannot really be twins because they are so very different (when in fact they aren't that different at all). The world is full of haters, nay-sayers, and those that don't believe in treating everyone the same.
I do believe in treating them all the same and that is why I can see the beauty and handsomeness in all my boys. They are gorgeous little men who will someday be gorgeous men no matter what some people may think. So I guess my whole rambling here is about whether or not you can see past the 47th chromosome that belongs to the child I see as the one son that is handsome, charming, stubborn, genuine, unique, loquacious, witty, easily entertained, softhearted, levelheaded, loving, can melt your heart with his smile, blond haired and blue eyed? Would you?
(by the way, Jackson is my brown haired kid with hazel eyes and, therefore, Jared is paired with the first descriptive)
Until next time, hug your babies and never take for granted the blessing in your life.
Christie
Sunday, October 11, 2009
Buddy Walk 2009!
So we finally made it to our Buddy Walk!! I guess third time really is a charm. The first year the twins were born it was very cold and damp and we did not dare take them out in that type of weather. Last year, I think someone was puny. But we finally made it this year. My sister, nephew and niece came along too. Jared was with his dad this weekend so he did not make it, but Shawn and I brought the twins out anyway. The weather was GORGEOUS!! Jackson was good but had a tummy bug of some sort and ran a fever that evening. Joseph woke up very snotty this morning. His poor little eyes were very watery yesterday but they always do that when the wind is in his face. Hopefully, we are all just getting a little cold now and nothing major. Here are some of the pics from this years walk.
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