by Jacqueline Schiff
1. Shine... with your God-given talents.
2. Sparkle... with interest when you listen to others.
3. Twinkle... with a sense of humor, and you'll never take life too seriously.
4. Sing... to keep up your spirits.
5. Pray... and you'll know you're never alone.
6. Unwrap... your dreams and make them happen.
7. Celebrate... your every step to success.
8. Decorate... your own space and make it your peaceful retreat.
9. Play... with passion after you work hard.
10. Exchange... your doubts for hopes; your frowns for smiles.
11. Make... cookies, friends, happiness.
12. Believe... in the spirit of Santa Claus and in your power to make the world a better place.
Dec 31, 2009
Dec 30, 2009
Almost Midnight Cookies
We're going out of town to ring in the new year, and I thought I was all ready. But when I came across the idea for these amazing cookies on Amy Atlas' Sweet Designs blog, I realized I had one more thing I have to do before we leave! Aren't these adorable!?!?....
Fun and Easy New Year's Glasses
I think this idea from Make and Takes is sooo cute (and easy). I'm planning on doing this for my family, so I thought I'd share.....
Whether you have silly glasses or not, I hope you ring in the new year in style and have lots of fun!
Whether you have silly glasses or not, I hope you ring in the new year in style and have lots of fun!
Dec 29, 2009
Make Your Day Tuesday: Special Needs Santa Gives Back
By Michelle Sathe of The Signal
Daniel Mills can barely move, but his actions speak volumes.
The 20-year old Saugus man, born with cerebral palsy and confined to a wheelchair, has raised more than $2,500 in cash, as well as clothing, food, and toy donations, to help the less fortunate in the Santa Clarita Valley.
He did so through creative fundraising efforts such as appearing on local radio, e-mail pleas to family and friends, and the sale of T-shirts for $10 to the community through his Web site www.danmansheart.com.
“I don’t consider myself handicapped rather specially-abled. I have a brilliant mind trapped in a body that does not work so grand, but I believe you can do great things if you set your mind to it,” Mills said on his Web site. “I want people to know that even in the most dismal of economical conditions we can all give back to people less fortunate than ourselves. “
His efforts inspired many. Brandi Round hosted a Pampered Chef party and donated the proceeds. Richard Green of Green Nursery in Valencia contributed more than $500 worth of new toys. Wal-Mart gave them special discounted pricing of $5-$10 on jackets.
The majority of food, clothing, and toiletry supplies were delivered to the homeless residents of the Santa Clarita Winter Emergency Shelter on Thursday, Dec. 17, by Mills, his mother Mishele Megeath, their neighbors and the staff of Prima Pediatrics in Canyon Country, where Daniel Mills has been treated since he was 3.
“We got them 98 percent of what was on their wish list, everything except for latex serving gloves,” Megeath said. “They were in awe.”
A cache of new toys was delivered to children in hospitals throughout Los Angeles County on Christmas. The donated toys were are part of a “Share the Joy, Donate a Toy” campaign created by Mills’ pediatrician Dr. Rochelle Feldman of Prima Pediatrics in Canyon Country.
For his Dec. 5 birthday party last year, Mills asked guests to contribute cash for “Share the Joy, Donate a Toy;” he presented the resulting $440 as a surprise to Feldman the same night.
“I was in tears. I was speechless, which I never am,” Feldman said of the initial donation. “I told Daniel, ‘I think you found your calling. This is your life’s work.’”
Mills took his doctor’s words to heart, even though he almost lost his own life shortly thereafter, on Jan. 23.
Megeath woke up to find her son suffering from hypoxia, a pathological condition in which the body as a whole or a region of the body is deprived of adequate oxygen supply, which he suffered as a result of obstructive sleep apnea. Mills was rushed to the hospital, where he made the decision to have a tracheotomy in order to continue to breathe on his own.
“Dr. Feldman and I were shaking, our knees were knocking we were so scared,” Megeath recalled. “I gave Daniel the final decision on whether he wanted the tracheotomy and he chose to do it.”
Before the procedure, Mills was capable of conversing with single words. Now, he relies on a DynaVox, an augmented communication device which hooks onto his wheelchair, in order to relay his thoughts.
The DynaVox, which has a liquid crystal display screen stationed in front of the wheelchair, allows Mills to “speak” through an electronic voice control with the touch of his cheek against a large red button positioned on the side of his face.
He previously attended Valley View Elementary, La Mesa Junior High School, and Valencia High School, but now, due to the tracheotomy, Mills is homeschooled by teacher Jeff Albert, who donated the T-shirts for Mills’ cause.
Programs on social studies, history, English, and more are downloaded to the DynaVox for Mills to study and he receives tests on each subject regularly, according to his mother.
“He’ll have vocabulary words appear on the screen and will be asked to choose the right word for a given definition. He gets good grades,” Megeath. “I told Jeff to keep it challenging for Daniel. He likes to learn and he’s very smart.”
A single mother since Mills’ birth, Megeath has fought long and hard for her son since the day she brought him into the world. Mills was born extremely premature – at just 24 weeks, he suffered from a grade four brain hemorrhage.
Doctors told Megeath that Mills would be a vegetable, but she didn’t believe them. She knew her son could see and hear. She was just 20 at the time, yet her religious faith gave her insight beyond her years.
“I believe in creation and I created this child. I asked God that if there were a chance for Daniel to live, for him to succeed in this life, to give me a sign,” Megeath said.
Though he was just two pounds, Mills grabbed his mother’s finger and held on through the portal of his incubator.
“It was love at first sight,” Megeath said. “I felt honored that God gave me Daniel, that He believed in me enough to be his steward. It’s helped me develop great character.”
In addition to Mills’ medical issues, Megeath, who previously worked as an office assistant, became the full-time caregiver to her mother in 1999 when she developed Alzheimer’s Disease. When her mother died three years ago, Megeath took in her dog Abby, a Schnauzer who provides comic relief and companionship for the family.
Megeath has continued as a full-time caregiver for her son; she is paid by the government for her services rather than them paying to have Mills institutionalized. After Mills’ tracheotomy, government funding has also allowed them to have a roster of three nurses provide supplemental care in the home, as well as the DynaVox.
For fun, Mills and his mother listen to music and take daily walks. Short driving vacations are another shared joy; the most recent was a trip to Lake Arrowhead this May.
“If Daniel could, he would pitch a tent and live outside. He just loves the outdoors,” Megeath said. “We haven’t been able to find an airline that can take Daniel yet, but he would love to go to Israel and New York.”
As his mother spoke, Mills’ soft, big brown eyes locked onto hers. He smiled and clicked his tongue, which Megeath said is a sign of her son’s happiness.
“He is my favorite person in the world to hang out with. I just love seeing the world through his eyes,” Megeath said. “We are very blessed. We may have not had all we ever wanted, but we have always had what we needed.”
Mills pressed the button of his DynaVox to share a prerecorded message he had created for the “Share the Joy” campaign.
“My heart tells me it’s very important for differently-abled people to give back to the community any way we can,” he said.
Megeath beamed at her son. “You are just the coolest thing ever. I am bursting with mama pride.”
For more information on Daniel Mills and his fundraising efforts, visit www.danmansheart.com.
Daniel Mills can barely move, but his actions speak volumes.
The 20-year old Saugus man, born with cerebral palsy and confined to a wheelchair, has raised more than $2,500 in cash, as well as clothing, food, and toy donations, to help the less fortunate in the Santa Clarita Valley.
He did so through creative fundraising efforts such as appearing on local radio, e-mail pleas to family and friends, and the sale of T-shirts for $10 to the community through his Web site www.danmansheart.com.
“I don’t consider myself handicapped rather specially-abled. I have a brilliant mind trapped in a body that does not work so grand, but I believe you can do great things if you set your mind to it,” Mills said on his Web site. “I want people to know that even in the most dismal of economical conditions we can all give back to people less fortunate than ourselves. “
His efforts inspired many. Brandi Round hosted a Pampered Chef party and donated the proceeds. Richard Green of Green Nursery in Valencia contributed more than $500 worth of new toys. Wal-Mart gave them special discounted pricing of $5-$10 on jackets.
The majority of food, clothing, and toiletry supplies were delivered to the homeless residents of the Santa Clarita Winter Emergency Shelter on Thursday, Dec. 17, by Mills, his mother Mishele Megeath, their neighbors and the staff of Prima Pediatrics in Canyon Country, where Daniel Mills has been treated since he was 3.
“We got them 98 percent of what was on their wish list, everything except for latex serving gloves,” Megeath said. “They were in awe.”
A cache of new toys was delivered to children in hospitals throughout Los Angeles County on Christmas. The donated toys were are part of a “Share the Joy, Donate a Toy” campaign created by Mills’ pediatrician Dr. Rochelle Feldman of Prima Pediatrics in Canyon Country.
For his Dec. 5 birthday party last year, Mills asked guests to contribute cash for “Share the Joy, Donate a Toy;” he presented the resulting $440 as a surprise to Feldman the same night.
“I was in tears. I was speechless, which I never am,” Feldman said of the initial donation. “I told Daniel, ‘I think you found your calling. This is your life’s work.’”
Mills took his doctor’s words to heart, even though he almost lost his own life shortly thereafter, on Jan. 23.
Megeath woke up to find her son suffering from hypoxia, a pathological condition in which the body as a whole or a region of the body is deprived of adequate oxygen supply, which he suffered as a result of obstructive sleep apnea. Mills was rushed to the hospital, where he made the decision to have a tracheotomy in order to continue to breathe on his own.
“Dr. Feldman and I were shaking, our knees were knocking we were so scared,” Megeath recalled. “I gave Daniel the final decision on whether he wanted the tracheotomy and he chose to do it.”
Before the procedure, Mills was capable of conversing with single words. Now, he relies on a DynaVox, an augmented communication device which hooks onto his wheelchair, in order to relay his thoughts.
The DynaVox, which has a liquid crystal display screen stationed in front of the wheelchair, allows Mills to “speak” through an electronic voice control with the touch of his cheek against a large red button positioned on the side of his face.
He previously attended Valley View Elementary, La Mesa Junior High School, and Valencia High School, but now, due to the tracheotomy, Mills is homeschooled by teacher Jeff Albert, who donated the T-shirts for Mills’ cause.
Programs on social studies, history, English, and more are downloaded to the DynaVox for Mills to study and he receives tests on each subject regularly, according to his mother.
“He’ll have vocabulary words appear on the screen and will be asked to choose the right word for a given definition. He gets good grades,” Megeath. “I told Jeff to keep it challenging for Daniel. He likes to learn and he’s very smart.”
A single mother since Mills’ birth, Megeath has fought long and hard for her son since the day she brought him into the world. Mills was born extremely premature – at just 24 weeks, he suffered from a grade four brain hemorrhage.
Doctors told Megeath that Mills would be a vegetable, but she didn’t believe them. She knew her son could see and hear. She was just 20 at the time, yet her religious faith gave her insight beyond her years.
“I believe in creation and I created this child. I asked God that if there were a chance for Daniel to live, for him to succeed in this life, to give me a sign,” Megeath said.
Though he was just two pounds, Mills grabbed his mother’s finger and held on through the portal of his incubator.
“It was love at first sight,” Megeath said. “I felt honored that God gave me Daniel, that He believed in me enough to be his steward. It’s helped me develop great character.”
In addition to Mills’ medical issues, Megeath, who previously worked as an office assistant, became the full-time caregiver to her mother in 1999 when she developed Alzheimer’s Disease. When her mother died three years ago, Megeath took in her dog Abby, a Schnauzer who provides comic relief and companionship for the family.
Megeath has continued as a full-time caregiver for her son; she is paid by the government for her services rather than them paying to have Mills institutionalized. After Mills’ tracheotomy, government funding has also allowed them to have a roster of three nurses provide supplemental care in the home, as well as the DynaVox.
For fun, Mills and his mother listen to music and take daily walks. Short driving vacations are another shared joy; the most recent was a trip to Lake Arrowhead this May.
“If Daniel could, he would pitch a tent and live outside. He just loves the outdoors,” Megeath said. “We haven’t been able to find an airline that can take Daniel yet, but he would love to go to Israel and New York.”
As his mother spoke, Mills’ soft, big brown eyes locked onto hers. He smiled and clicked his tongue, which Megeath said is a sign of her son’s happiness.
“He is my favorite person in the world to hang out with. I just love seeing the world through his eyes,” Megeath said. “We are very blessed. We may have not had all we ever wanted, but we have always had what we needed.”
Mills pressed the button of his DynaVox to share a prerecorded message he had created for the “Share the Joy” campaign.
“My heart tells me it’s very important for differently-abled people to give back to the community any way we can,” he said.
Megeath beamed at her son. “You are just the coolest thing ever. I am bursting with mama pride.”
For more information on Daniel Mills and his fundraising efforts, visit www.danmansheart.com.
Dec 28, 2009
Dec 26, 2009
Dec 24, 2009
'Twas the Night Before Christmas -- Mama Style
'Twas the night before Christmas, when all through the abode
Only one creature was stirring & she was cleaning the commode.
The children were finally sleeping, all snug in their beds,
while visions of X-Box & Barbie flipped through their heads.
Yes, and dad was snoring in front of the TV,
with a half constructed bicycle propped on his knee.
So only the mom heard the reindeer hooves clatter,
which made her sigh, "Now what is the matter?"
With toilet bowl brush still clutched in her hand,
She descended the stairs, and saw the old man.
He was covered with ashes & soot, which fell with a shrug,
"Oh great," muttered the mom, "Now I have to clean the rug."
"Ho Ho Ho!" cried Santa, I'm glad you're awake."
"your gift was especially difficult to make."
"Thanks, Santa, but all I want is time alone."
"Exactly!" he chuckled, "So, I've made you a clone."
"A clone?" she muttered, "What good is that?"
"Run along, Santa, I've no time for chit chat."
Then out walked the clone - The mother's twin,
Same hair, same eyes, same double chin.
"She'll cook, she'll dust, she'll mop every mess.
You'll relax, take it easy, watch TV and rest.
"Fantastic!" the mom cheered. "My dream has come true!"
"I'll shop, I'll read, I'll sleep a night through!"
From the room above, the youngest did fret.
"Mommy?! Come quickly, I'm scared and I'm wet."
The clone replied, "I'm coming, sweetheart."
"Hey," the mom smiled, "She sure knows her part."
The clone changed the child and hummed her a tune,
as she bundled the small one in a blanket cocoon.
"You're the best mommy ever. I really love you."
The clone smiled and sighed, "And I love you too."
The mom frowned and said, "Sorry, Santa, no deal.
That's my child's LOVE she is going to steal."
Smiling wisely, Santa said: "To me it is clear,
Only one loving mother is needed here."
The mom kissed her child and tucked her in bed.
"Thank You, Santa, for clearing my head.
Sometimes I forget, it won't be very long,
before they'll be too old for my cradle and song."
The clock on the mantle began to chime.
Santa whispered to the clone, "It works every time."
With the clone by his side, Santa said: "Goodnight.
Merry Christmas, dear Mom, you'll be all right."
Sometimes we need reminding of what life is all about.
Especially at times when the Holiday season shouts,
and all we do is clean, bake, and procure.
You get the picture -- I'm sure.
So stop for a moment and hug that little one so dear,
whether he/she is 2 or 22, or even older this year.
For they are the gift that God gave us from Heaven above,
a and what a special gift to be treasured, with endless LOVE!
Only one creature was stirring & she was cleaning the commode.
The children were finally sleeping, all snug in their beds,
while visions of X-Box & Barbie flipped through their heads.
Yes, and dad was snoring in front of the TV,
with a half constructed bicycle propped on his knee.
So only the mom heard the reindeer hooves clatter,
which made her sigh, "Now what is the matter?"
With toilet bowl brush still clutched in her hand,
She descended the stairs, and saw the old man.
He was covered with ashes & soot, which fell with a shrug,
"Oh great," muttered the mom, "Now I have to clean the rug."
"Ho Ho Ho!" cried Santa, I'm glad you're awake."
"your gift was especially difficult to make."
"Thanks, Santa, but all I want is time alone."
"Exactly!" he chuckled, "So, I've made you a clone."
"A clone?" she muttered, "What good is that?"
"Run along, Santa, I've no time for chit chat."
Then out walked the clone - The mother's twin,
Same hair, same eyes, same double chin.
"She'll cook, she'll dust, she'll mop every mess.
You'll relax, take it easy, watch TV and rest.
"Fantastic!" the mom cheered. "My dream has come true!"
"I'll shop, I'll read, I'll sleep a night through!"
From the room above, the youngest did fret.
"Mommy?! Come quickly, I'm scared and I'm wet."
The clone replied, "I'm coming, sweetheart."
"Hey," the mom smiled, "She sure knows her part."
The clone changed the child and hummed her a tune,
as she bundled the small one in a blanket cocoon.
"You're the best mommy ever. I really love you."
The clone smiled and sighed, "And I love you too."
The mom frowned and said, "Sorry, Santa, no deal.
That's my child's LOVE she is going to steal."
Smiling wisely, Santa said: "To me it is clear,
Only one loving mother is needed here."
The mom kissed her child and tucked her in bed.
"Thank You, Santa, for clearing my head.
Sometimes I forget, it won't be very long,
before they'll be too old for my cradle and song."
The clock on the mantle began to chime.
Santa whispered to the clone, "It works every time."
With the clone by his side, Santa said: "Goodnight.
Merry Christmas, dear Mom, you'll be all right."
Sometimes we need reminding of what life is all about.
Especially at times when the Holiday season shouts,
and all we do is clean, bake, and procure.
You get the picture -- I'm sure.
So stop for a moment and hug that little one so dear,
whether he/she is 2 or 22, or even older this year.
For they are the gift that God gave us from Heaven above,
a and what a special gift to be treasured, with endless LOVE!
Dec 21, 2009
A Baby Changes Everything
Indeed, our babies have changed everything about our lives.
The birth of the baby Jesus changes everything and is truly a reason to celebrate.
With His birth comes the hope and promise that all will one day
be saved from their suffering and be made whole.
He truly is Wonderful, and the Prince of Peace.
Merry Christmas from the Kidz Krew.
May you feel the wonder and peace of the season.
The birth of the baby Jesus changes everything and is truly a reason to celebrate.
With His birth comes the hope and promise that all will one day
be saved from their suffering and be made whole.
He truly is Wonderful, and the Prince of Peace.
Merry Christmas from the Kidz Krew.
May you feel the wonder and peace of the season.
Make Your Day Monday: Bless Us All
The muppet version of Tiny Tim and his family sing a sweet Christmas carol....
Dec 18, 2009
Rejoice! Rejoice!
This song has had special meaning to me this year....
My favorite lines:
My favorite lines:
From depths of Hell Thy people save
And give them victory o'er the grave
Disperse the gloomy clouds of night
And death's dark shadows put to flight.
Rejoice! Rejoice!
Emmanuel shall come to thee, O Israel.
And give them victory o'er the grave
Disperse the gloomy clouds of night
And death's dark shadows put to flight.
Rejoice! Rejoice!
Emmanuel shall come to thee, O Israel.
Dec 17, 2009
Assurances From the Christmas Tree
I love the symbol of the Christmas tree...in both pagan and Christian traditions it points to immortality. It is especially poignant to me this year: living in a world where children pass--frequently--from diseases for which there is no cure, the assurance of an eternal life is comforting and beautiful. I also love the lights: a light that can never be darkened, even though death may dim it for a time. The tree is a message to me that this life is not the end. And I'm grateful for that.
by Devon of The Daily Dakin
Dec 15, 2009
Try This Tuesday: Stand UP!
Clayton has never loved his stander. In fact, I don't know of any CP kid that does! But a couple of years ago, he got a new, less restrictive one, and we tried to be more diligent about getting in his standing time. We were doing good until he started attending preschool--and that, combined with me being put on bedrest during a pregnancy, pretty much put standing time on the back burner. He was so tired after school, and I wasn't allowed to lift him to put him in the stander. And while I hate to admit it, the stander collected a lot of dust early this year. But now that I'm homeschooling him and no longer pregnant, I have vowed to fit in more standing time. The trick is finding activities he likes to do to keep his mind off being confined to the stander! And about a month ago, I finally discovered what we could do: cleaning house and putting away laundry!
Rolling around the house with the folded laundry on his tray is great fun in Clayton's opinion! I think it's almost the sensation of actually walking, and he thinks he is quite the big boy helping mom WHILE standing up. He also loves to sweep and vacuum, so I take the tray off of the stander so he can hold the handles and "help" mom with the housework.
The only thing I have to watch is the time--if I'm not careful, he starts UNfolding the laundry before we ever get it put away!
Dec 13, 2009
Dec 11, 2009
A Word to New Moms
Today we are lucky to have guest poster Ellen from To the Max. (Thank you, Ellen!)
Today is a day to celebrate because my beautiful boy is seven years old. It's a day to celebrate because seven years ago, doctors were not sure Max would survive the bilateral stroke. It's a day to celebrate because Max continues to do so much better than those gloom-and-doom doctors thought he would. It's a day to celebrate how far I've come.
Today is a day to celebrate because my beautiful boy is seven years old. It's a day to celebrate because seven years ago, doctors were not sure Max would survive the bilateral stroke. It's a day to celebrate because Max continues to do so much better than those gloom-and-doom doctors thought he would. It's a day to celebrate how far I've come.
I'm feeling sentimental that Max is getting to be a big boy, but I'm not at all sad about this day, or having flashbacks to the two weeks we spent in the NICU. Yes, things still trigger memories—you've read about my sobfests, you've shared your own. But in general, time has muted the pain and devastation I experienced during the first year of Max's life.
I get e-mails now and then from moms of babies who are at risk for problems, and I can feel their agony streaming through my computer screen. I know exactly how you feel, if you are reading this. I do. And so, in honor of Max's birthday, I wanted to reach out to you.
I know that you are grieving. Why did this happen to my child? Whywhywhywhywhwy? That despair will not be there forever. It dissolves as time goes on and gets replaced by acceptance.
I know that you're desperate for answers. You want to know if things won't be so bad. You want to know what limitations your child might have. You ask the doctors. You get their e-mails and send messages. You mercilessly query moms in similar situations. You stare at other kids in the therapists' and doctors' offices and analyze how they act and move and compare them to your child. You. Just. Want. To. Know. So did I. But I can tell you now that I am glad I did not have answers back then. Because if a doctor would have told me when Max was very young that he wouldn't be able to talk fluently and would have trouble using his hands, I would have been absolutely despondent. And what good would that have done Max? I needed to have hope, for both our sakes. That hope pushed me to do more for Max, and it kept my spirits up even when his progress was slow. And now? I don't think twice about Max's way of communicating or using his hands. They're part of who he is.
I know that you're worried sick. More so than you let anyone know. More so than perhaps your husband, seemingly. You lie awake in bed at night and fret. You assess your child's every move and fear you're seeing something wrong. At times, your worries veer into the irrational—you spot a handicapped adult somewhere and wonder if that's what the future holds for your child. There is nothing I can say to make the worry go away, but I know that what helped me was learning to keep my eyes on what Max was doing on any given day—not what he could be doing. The next time your mind spirals off into a freakout, look at your child and think about the good stuff he did on that day, or the day before. Also, toss the development books. Also, dress him or her up in ridiculously adorable outfits and take lots of pictures. Your child is not the least bit cuteness impaired. Savor that cuteness.
I know that you're wistful. Or maybe even jealous. Of the other kids and moms in your life, the ones who seem so happy-go-lucky and carefree. Maybe you wonder why you're the one out of all your friends who ended up with a child who has problems. Then there are the kids you see at birthday parties, The Children Who Are Developing On Schedule. For a while, I quit going to birthday bashes for friends' kids, because it was a compare-a-thon for me; sometimes, I made my husband go. I'm not saying isolate yourself. I'm saying that if it's possible to control something that's making you feel lousy, control it. And know that all those feelings are normal, and you're not a bad person for feeling them. Not in the least.
I know that you feel guilty. Did you do something wrong during your pregnancy to cause what happened? You may even feel guilty about your own despair. Back then, I sometimes felt as if I might never be happy again, and then I'd feel like crap because I had a sweet little baby and wasn't he worth celebrating? The passage of time is the best anti-guilt antidote, but it also helps to keep a journal or start a blog. Writing things out helps give you perspective. Ahem. So does seeing a shrink. I did. There is no shame in that. You've been through a trauma.
I know that you may not be taking care of yourself. I was so consumed by helping Max, not to mention mentally and spiritually sluggish, that some days it was all I could do to shower. Hell, I couldn't even picture ever being happy again. But, of course, I am happy again. And I've realized that if you don't take care of yourself, you can't be the best possible mom for your child. So grab some private time, and make plans do the things you enjoy (at minimum, shower and find something else to wear besides sweats). Your kid will be fine without you for a few hours. You need the me-time, more so than other moms. And boy, do you deserve it.
So, yes, I know what you're going through. I feel for you, because seven years ago, I was you. And I know that you have the power in your hands and arms and heart to help your child come along. And I know that you have hope, and there is no limit on how much hoping you can do. And I know that you have a beautiful child worth celebrating.
Just like my Max.
Ellen
Dec 10, 2009
Sidekick
Ben.
He's been on my mind...a lot.
He's been my sidekick now for 6+ years.
Hard to think that someday he won't be.
I know that my time with him is getting shorter.
It's just a feeling that I have.
Something that is hard to swallow.
He doesn't sleep well.
That means neither do I.
I'd like to think it's because he's selfish.
He wants more of my time.
He figures at night there is no competition.
He's right.
It's just us.
In the dark.
That's when I talk to him.
He's a good listener.
And someday he'll talk to me.
Then I can repay him the favor.
Dec 9, 2009
Kendall's Hope
"When the world says "Give up," Hope whispers, "Try one more time." ~Author Unknown
Somewhere I heard the quote "The end of a matter is more important than the beginning." Not sure where I read/heard it, but I like it. It definitely pertains to my darling Kendall. It doesn't matter where, when, or why all of her issues started, what really matters is that we cherish every single day we have with her, and every single milestone she hits. As a family we have come a very long way with acceptance. I can honestly say I wake up in the morning happy again. There were quite a few dark days in the past year when that wasn't the case. But, like every other hurdle in life, you keep on trucking, and eventually you get through it. You become stronger in the process. Justin and I have become closer. Kamden has learned patience. I have witnessed my 8 year old's faith evolve. He has an amazing understanding of the world and a relationship with the Lord. We have all learned how to pray. As a mother, I now treasure everything most parents take for granted in my children. And while I know we will continue to have occasional dark days, or self pity days, they seem to be spacing out.
I have decided to do a post that recaps Kendall's medical issues from the beginning. Mostly, so I can refer back to this all in one place. I wish every time we went to a new Dr. or had to go through Kendall's history, I could say "check my blog!" But that's not the case. Maybe this will help someone out there who, God forbid is in a similar situation. I also want to link all the medical terms to sites that explain them well. It will help me to gather my thoughts and our most recent findings with her clotting issues. I'll try to give the Reader's Digest version, but I've never been very good at giving the short story. Once I have this out, I vow to myself to focus on the "end of the matter" and stop wondering the dreaded "what if's." So here goes.
My son was born 7 years before Kendall with no issues. He was text book! My water broke at home on his due date. I went into labor on my own, and had a natural birth. My pregnancy with Kendall was more or less uneventful. I was 29 years old with no history of any health problems. My blood pressure was fine. I am RH negative, so in both pregnancies I took the needed injections. Toward the end of my pregnancy, there was protein in my urine, but I was assured that was OK as long as there weren't any issues with my blood pressure. Kendall was in a Breech position pretty much every time I had a sonogram.
At a routine sonogram around 28 weeks, they noted "enlarged ventricles." My Dr. didn't seem too concerned, but did refer me to a perinatologist. My whole family went into a tail spin with worry! But in the back of my mind, I thought everything would be OK since we had relatively healthy people in our family. The next day we were fit into the Perinatologist. He was a little man with annoying habits. I hated him from the beginning. He said her ventricles were "borderline enlarged" at only 12 mm and we were going to watch them. HOWEVER, she had two white spots in her heart...calcifications...and a hole in her heart. He said there was a chance she had Downs, and recommended an Amnio. He said we could abort, but there was only one state that would do it and we would have to move quickly. I remember looking at him, seeing his lips move, but no sound coming out, and everything was in slow motion. He left for a minute and told us to think about it. There was no thinking required. Before we got pregnant, we knew we would love our child no matter what. We declined the amnio and of course, the abortion. He came back in, we gave him our decision, and he handed us a card for a scheduled EKG at Children's Hospital. We went home and I cried for the next 2 days. I discovered the Internet and learned more about the heart than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.
We went for the EKG and received the results the same day. Her heart was perfectly normal. A month later we went back to the perinatologist for a follow up. My mom was with me, Justin at work. That day he did a sonogram, and came back in putting on the same show. He looked like he was giving a speech to a group of medical students. He asked if my mother was my sister (clearly...she isn't....she had me when she was 38....although she looks great for her age...clearly....NOT my sister....so that just pissed me off. This wasn't a time for jokes.) I was expecting a clean bill of health, but that's not what I got. She still had "borderline ventriculomegaly" and a possible "arachnoid cyst." This time we were too late to abort, and he returned with a card to go to Children's Medical Center for an MRI. I cried at the checkout desk scheduling the appointment. Before we made it to the car, I felt I was living a bad dream. My sadness quickly turned to anger. Anger because he had already sent us on a wild goose chase with her heart, and I wasn't going to go through it again. I was firing him! He didn't know what he was talking about! He was the WORST Dr. on the planet! But still, I went home, jumped on the Internet, learned more about the brain than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.
After letting it sink in for a few days, I called my OB and asked to be referred to another perinatologist. My nurse was wonderful and encouraging. My Dr. sent me to the Dr. his wife went to. It was a longer drive, but worth it. Within a week, we had a second opinion from a well-regarded Dr. who had bad breath, but didn't piss me off. He reviewed everything, performed a long sonogram, and said everything looked fine...but she may have a club foot. In retrospect, a club foot would have been great! We breathed a sigh of relief and enjoyed the rest of our pregnancy. Kamden was excited about his baby sister. He drew pictures of her (and being the gifted and talented kid he is...drew her with a club foot in all of them.) Our angel never turned, so I was scheduled for a c-section.
Kendall was born on a Sunday morning. She didn't have a club foot. Emails and text messages were sent out stating everything was fine. She had an apgar score of 10. She latched on to breastfeed immediately. She was small 5 lb. 12 oz. Her head was also small. But she received a clean bill of health from everyone in the hospital. She even passed her eye exam!?!?!? We went home 2 days later with our bundle of joy...prepared for sleepless nights.
The next 2 months, I enjoyed my Maternity Leave. I recovered from my c-section, breast-feeding was going great, and I was focused on losing the 65 pounds I gained with my 6lb baby! She was the best baby. She had a few nights with crying fits, but all in all, she was so mellow. She slept a lot. Her eyes were always a bit shaky, but I must have asked the Dr. 100 times if that was normal! In the back of my mind, I knew it wasn't but I didn't want to think about it. Everything was going so great. Then one evening, we placed her down to go to sleep and she had a series of startles. She did it 3 times in a row. I knew this wasn't normal and called the Dr. the next day.
At that appointment I insisted he look at her eyes. She never made eye contact. Something was off. We left there and immediately went to a Pediatric Ophthalmologist. She was diagnosed with bilateral congenital cataracts. Surgery was scheduled for the next week for the left eye, then the following week for the right eye. I went home, jumped on the Internet and learned more about the eyes than I ever wanted to know. I found the best case scenario, the worst case scenario, and prayed.
She recovered from her surgeries was fitted for glasses weeks later, but still wasn't tracking. We thought there may still be something wrong with her vision even though during her examination under anesthesia they said her optic nerve was fine and everything else was intact. She wasn't rolling or reaching, but we blamed that on her vision! We started ECI services with Vision Instruction and Orientation and Mobility through our school district. We also added PT since she wasn't really moving.
She went for a routine evaluation at our pediatrician's office. Her head circumference was small, but was growing along the curve. They were a bit concerned. We mentioned a shaking of her foot on occasion and absent stares and head drops she was exhibiting. Soon after we left with a referral to a Neurologist and the label Microcephaly. We scheduled an EEG and an MRI. We also had the EEG followed by an appointment with the Neurologist. Her EEG was abnormal, he said she had high tone, and wanted to have a 24 hour video EEG done the following week. Of course I went home jumped on the Internet, researched everything I could about abnormal EEG's, abnormal tone, seizures, and you guessed it. I knew everything there was to know about Cerebral Palsy. I found the best case scenario, worst case scenario, and prayed!!!
At the hospital following her video EEG, we were told she did not have seizures, but they were going to go ahead and move the MRI appointment for the next morning since we were already there. She got general anesthesia for the third time in her short 5 months of life. When the results were in, they escorted us back to our room. We knew something was up when the train of Dr.'s walked us to the viewing room. The Dr. on call told us she had a large cyst in her brain, possibly on 2 sides, and we should start therapy and familiarize ourselves with the term Cerebral Palsy (ha! I already had!) We went home thinking a left sided weakness was the end of the world. Our next neurologist appointment wasn't for another 5 months. That wouldn't do, so I called the nurse. I explained that we didn't understand and the 5 minutes the Dr. on call spent with us wasn't going to hack it. She told me Kendall had damage all over her brain. I cried on the phone with her and she was able to move our appointment up to the next week.
At that appointment we were told Kendall had a bilateral stroke on both sides of her brain. She had two Porencephalic Cysts that were compatible with a hypoxic/ischemic brain injury. She would never be normal. She wouldn't walk, see, or talk. She would be "mentally retarted." We cried with the Dr. and went home.
The weeks following I did a lot of research on plasticity of the brain. I also asked a lot of questions about why this happened. I found incredible support and information on Yahoo message boards (my list of them got so extensive, I finally had to unsubscribe!) I learned about seizures through my Microcephaly group. Kendall continued the next few months with the "startles" that to me resembled videos of Infantile Spasms I had seen. Two more video EEG's finally diagnosed her with Infantile Spasms. That is where our current search for the right seizure medication began.
A group I found called the "Pediatric Stroke Network" helped me discover Kendall's possible cause of her stroke in utero. Apparently she has the Factor V Leiden Mutation, two copies of the MTHFR gene, and her Homocystene levels are high. These are inherited from both Justin and I. I have tested positive for the Factor V, and Justin and I both have MTHFR. We have decided not to have my son tested in fear that it would be a pre-existing condition that would interfere with him obtaining life insurance in the future. We are all starting on an aspirin a day. And we will make sure we tell Dr.'s in the future if we have any surgeries or increased risk of blood clots. In a weird way, finding out a possible reason for Kendall's stroke has helped me move forward. I don't research causes on the Internet anymore. I mainly focus on therapy and equipment and how others with similar diagnosis cope day to day.
So that's it. The "beginning of our matter." We are blessed with a beautifully unique little girl,a true fighter, with a smile that lights up a room, a laugh that lifts your spirits on the toughest of days, and a whole new outlook on life.
Thank you Kendall. We know you are going to surprise everyone with what you are able to overcome!
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When I orignally wrote this... I was praying I wouldn't have to update...like ever. Unfortuately for us, 2 weeks ago on (August 24th 2009 at 16 months old) Kendall had really high blood sugars and was admitted to the hospital, only to be diagnosed with Type 1 Diabetes. (the auto-immune flavor) Oddly enough this result was a relief for us because it meant she didn't have Mitochondrial Disease...
Currently her blood sugars are evening out, and seizures remain semi-controlled on the Ketogenic Diet. She failed Topamax, Vigabatrin, and Keppra so the reduced seizures are welcomed, even though it has complicated the Diabetes Treatment! Our Endocrine and Neurology teams at Cook Childrens are working together to provide the best treatment for Kendall. She now smiles and laughs, rolls, and reaches, and is days away (I believe) from sitting on her own! Hard work and perserverence will pay off. We are blessed.
Read more about Kendall on her blog Kendall's Hope.
Dec 8, 2009
Try This Tuesday: Head Switch
Something that we have found Junior can do by himself is play video games on his computer. Here he is playing independently with his head switch....
Dec 7, 2009
Dec 5, 2009
Dec 3, 2009
In Your Eyes
Photo: April 2006, by Yolanda WilliamsJournaling: July 2006
In your eyes, I see the past. I see the beautiful blue eyes and long lashes that are shared by so many in my family. I see the joy that your daddy and I felt when we learned we would have twin boys. But I also see my sadness in realizing you will never know your brother, that you will never get the real experience of being a twin. In your eyes, I see the baby that depended on me for his every need. I see the baby that I prayed over, the baby I begged God to let live. And in your eyes, I see that God has answered my prayer.
In your eyes, I see the present. I see the baby that has become a little boy who doesn’t need his mother quite so much—a little boy whose independence is emerging with each passing day. I see a happy and friendly child who greets everyone with a smile and a big “HEY!” I see a little boy who loves to play with his ball and definitely loves his cars. A little boy who begs to be read to, and enjoys every story no matter how many times he’s heard it. I see the child who loves music, loves to tap along with the beat and wave his hand to all songs. I see you taking in everything in your environment and I see a very smart little guy who isn’t about to let his disabilities slow him down.
In your eyes, I see the future. I see me regretfully letting go—letting you become your own person. I see a young man who is intelligent and independent, able to take care of himself. I maybe even see you rebelling against me at times. I see you reaching goals and conquering the world. And in your eyes, I see you loving life and living it to the fullest.
Dec 2, 2009
Wheels for Junior
Hi I am Junior and I am 11 years old. I use a wheel chair to get around and am getting to be a very big guy. I need a van to help me get to doctors appointments and also get out and enjoy life. My mom runs a blog where she does raffles, giveaways and things like that to help raise funds so I can get some wheels and stay on the move.
This week mom is hosting a raffle where the winner will win this cool "wheels blanket." You should go check out the blog for your chance to win! Thanks so much for helping us out!
Dec 1, 2009
Try This Tuesday: Share "The Story" With Your Child
The last few weeks, I've been thinking about sharing Chloe's story with.... Chloe.
I just got thinking about how she's unable to move or communicate like she'd like to and all the frustration and behavioral issues that go along with that. I got thinking it might be nice for her to know why she's unable to do those things. I realized that when other severe challenges come up in life, i.e. abuse, death, etc, the recommendation is for a person to go to counseling and talk about it. Shouldn't that same principle apply with Chloe?
So I sat her down this afternoon and told her "the story." I've told her pieces of the story before, and I always explain what's going on in the moment, but I've never sat down and explained everything. This time, she got the full scoop. I told her how sorry I was that this happened to her, but how grateful I am that she is so strong and brave through it all, that I am grateful to be her mom and that she is an inspiration to me.
It was a very tender time. I didn't just tell the story, I told parts, then asked her to talk to me about it. And talk she did! She talked to me in her own little Chloe babble language. Although I don't know exactly what she said, I'm sure she was just getting out some feelings, and I'm sure that felt good for her. After all, we all need to vent now and then, right?
Even with non-verbal children, I think it's important to keep those lines of communication open... talk to them, express your feelings to them, allow them to do the same.
Chloe telling me how much she likes her birthday cake, May 2009
I'm not a professional, but it's just what I think.
Have you tried this?
"Know from whence you came. If you know whence you came, there are absolutely no limitations to where you can go."
~James Arthur Baldwin
~James Arthur Baldwin
I just got thinking about how she's unable to move or communicate like she'd like to and all the frustration and behavioral issues that go along with that. I got thinking it might be nice for her to know why she's unable to do those things. I realized that when other severe challenges come up in life, i.e. abuse, death, etc, the recommendation is for a person to go to counseling and talk about it. Shouldn't that same principle apply with Chloe?
So I sat her down this afternoon and told her "the story." I've told her pieces of the story before, and I always explain what's going on in the moment, but I've never sat down and explained everything. This time, she got the full scoop. I told her how sorry I was that this happened to her, but how grateful I am that she is so strong and brave through it all, that I am grateful to be her mom and that she is an inspiration to me.
It was a very tender time. I didn't just tell the story, I told parts, then asked her to talk to me about it. And talk she did! She talked to me in her own little Chloe babble language. Although I don't know exactly what she said, I'm sure she was just getting out some feelings, and I'm sure that felt good for her. After all, we all need to vent now and then, right?
Even with non-verbal children, I think it's important to keep those lines of communication open... talk to them, express your feelings to them, allow them to do the same.
Chloe telling me how much she likes her birthday cake, May 2009
I'm not a professional, but it's just what I think.
Have you tried this?
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