Spread the Word to End the Word

A giant thank you to my bloggy friend Lana for letting me know about this movement that has been started by the Special Olympics....

Help spread the word to end the word!!!

If This Video Doesn't Make Your Week, I Don't Know What Will....

Child of God

I am a child of God,
And he has sent me here,
Has given me an earthly home
With parents kind and dear.

Lead me, guide me, walk beside me,
Help me find the way.
Teach me all that I must do
To live with him someday

I am a child of God,
And so my needs are great;
Help me to understand his words
Before it grows too late.

Lead me, guide me, walk beside me,
Help me find the way.
Teach me all that I must do
To live with him someday

I am a child of God.
Rich blessings are in store;
If I but learn to do his will
I'll live with him once more.

Lead me, guide me, walk beside me,
Help me find the way.
Teach me all that I must do
To live with him someday

Slow Me Down

A few of you have been wondering where I've been. Thanks for your concern, but please don't worry. Our health is fine. Life is good. I'm still on board with the kidz blog. I've just been busy doing other things! I bet I'm not the only one who can relate to this song....

Rushing and racing
and running in circles
Moving so fast, I'm forgetting my purpose
Blur of the traffic is sending me spinning
Getting nowhere

My head and my heart are colliding, chaotic
Pace of the world
I just wish I could stop it
Try to appear like I've got it together
I'm falling apart

Save me
Somebody take my hand, and lead me
Slow me down
Don't let love pass me by
Just show me how
'Cause I'm ready to fall
Slow me down
Don't let me live a lie
Before my life flys by
I need you to slow me down

Sometimes I fear that I might dissapear
In the blur of fast forward I faulter again
Forgetting to breathe, I need to sleep
I'm getting nowhere

All that I've missed I see in the reflection
Passed me while I wasn't paying attention
Tired of rushing, racing and running
I'm falling apart

Tell me
Oh won't you take my hand and lead me
Slow me down
Don't let love pass me by
Just show me how
'Cause I'm ready to fall
Slow me down
Don't let me live a lie
Before my life flys by
I need you to slow me down

Just show me
I need you to slow me down

The noise of the world is getting me caught up
Chasing the clock and I wish I could stop it
Just need to breathe, somebody please
Slow me down

You Are a Good Parent

You Are A Good Parent - There may be people in your life who would tell you different. Your discipline seems too strict, or too lax. You don’t shuttle your child to all the right activities. You’re not pushing her to be at the top of her class - happy and passing is a pretty good goal. Sometimes he acts up in church or melts down at the mall and you feel those judgmental stares. You may hear that you’re causing your child’s problems or handling them all wrong, but you know your child better than anybody. You know what works; you know what she can handle; you create an environment in which she can be successful. Doing what’s best for your child without worrying what other might think - isn’t that just what any good parent would do?

From Terri Mauro, About.com

Time

I love this quote by Thomas S. Monson:

So frequently we mistakenly believe that our children need more things, when in reality their silent pleadings are simply for more of our time. The accumulation of wealth or the multiplication of assets belies the Master’s teachings:

“Lay not up for yourselves treasures upon earth, where moth and rust doth corrupt, and where thieves break through and steal:

“But lay up for yourselves treasures in heaven, where neither moth nor rust doth corrupt, and where thieves do not break through nor steal:

“For where your treasure is, there will your heart be also (Matt 6:19-21)."

Cerebral Palsy Awareness Day

Today is....


This is a subject near and dear to my heart. Someone I know has Cerebral Palsy.....

my Chloe

One of the most adorable boys I have come to 'know' via blogging is named Logan. His mom, Keri, is equally delightful. She is helping to spread awareness today, so be sure to stop by Life of Logan for prizes and information.

And take time to peak around at all of Logan's pictures. His eyes are truly mesmerizing. Okay, here's a sneak peak....

- The average prevalence of cerebral palsy is about 1 in 278 children. This first report of the prevalence and characteristics of CP, the most common cause of motor disability in childhood, are from Georgia, Alabama and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance?

- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

Resources: Centers for Disease Control (CDC) and Reaching for the Stars (RFTS)

Wear a green shirt today to support CP Awareness. Chloe and I will be wearing green, so you should too!

Thanks for your support!

Siblings

Siblings and How They Feel
by Amber of Pray for Brandon

This morning I had to make Jordan wear her glasses because she has been getting headaches. Well being the drama queen she is she starts to say to me how everyone is going to make fun of her etc, etc,…. Then as the mommy I have to explain to her she is the prettiest girl with or without her glasses and that everyone else should see that. Oh my goodness I did not know that was going to lead to a subject about Brandon.

I guess I never really sat down and have asked the kids exactly how they deal with it. Well today I did just me and them before school started. Jordan was crying because she says that kids ask her questions about Brandon andshe just tells them that he is special. With the tears running down her face I felt lost, and hurt, and mad all at the same time. I looked at Trey and said son do they make fun of Brandon to you to. He said they have asked questions about him and he just tells them that he just does that. They leave him alone and he goes on with his day.

You know Jordan is in 2nd grade & Trey is in 5th so things are totally different for them. Treys friends are a little more mature but still why cant parents teach their kids that not everyone is the same? I know I did before I had Brandon and to respect the other person who is different.

So we kept on with the conversation and I told them that Brandon is the way he is because GOD wanted him that way.( I could feel my heart asking GOD why I don’t know) That is was nothing that any of us could help or stop it just happened and we would not change it for the world. I know that GOD gave him to us because we are a strong family and I don’t blame GOD to clarify what I said earlier. But sometimes those words, thoughts and wishes come out when you least want them to.

I had thoughts in my head trying to sort out what was best said to them. I could not say ” YOU TELL THEM SORRY BRATS THAT I WILL KICK THIER BUTTS IF THEY DONT STOP TALKING ABOUT MY CHILD!!!” now could I? Even though I probably was thinking it. But I could say” Just ignore people who try to make you feel any less special than you are. ” that was the right thing to say and is what I said. Trey of course being a bit like his mom and the over protector he said ” I will kick their butts ain’t no one going to say that about my brother or sister.” Ok in my mind I was beaming with happiness that he was being so tough and headstrong like me, but out came these words instead ” Now Trey we cant be like that we cant lower ourselves to their level, you have to remember you are better than that.”

You know life is hard and you don’t realize how hard it really is until you have a problem like this were you have to wake up and face reality. I hate my kids have to go through that with other kids but what can you do? Life throws you a curve ball and you just have to take it and remember you are stronger!

So for other parents who have special needs kids, don’t forget to ask your other kids how they deal with it. They need us to just as much if not more, I am going to be better at starting to pay more attention to my kids needs.

I have 4 kids each with their own unique way of life.

Trey who is the oldest and protector and very grown up at times. Who loves sports and who told me today Just wants to have friends.

Jordan who is 8 and only girl

Who is stubborn headstrong and yet she has this soft gentle side about her to. She loves sports, singing, shopping, anything girly. Who so pretty that I am forever in trouble. Who just wants to fit in.

Lance who is the wild child of my bunch



Who everyday keeps you on your toes. A imagination like anything I have ever seen. Who just wants his brother to play with him and wonders why he cant like the others.

Brandon who is our Angel



Who cant take up for himself and is the luckiest boy to have siblings like his to love him and protect him.

I just know that I am so lucky to have them all and would walk fire for any of them. I hope they grow up to be fine well rounded children. I hope I can teach them to respect and love all no matter what is wrong with them or how rude they are. I know it will be hard but that is why they call me “MOMMY” !

It's Your Turn

You know the drill....



Thanks for participating and Happy St. Patrick's Day!

Your Lucky Day

St. Patrick's Day is tomorrow! Here are a few last-minute ideas to take your lucky day up a notch.....

My friends and family shouldn't be too shocked if they get a St Patrick's Day card that was inspired by BHG's simple sentiment ideas.

This collage shamrock is so cute! Go to Busy Bee Kids Crafts to find out how to make it.

No Time For Flash Cards teaches how to make this shamrock garland.

Kids Crafts Magazine gives this rainbow/pot o' gold door hanger idea.

Bring the rainbow to you by making this necklace from Activity Village.

I like this shamrock pretzel from Family Fun.

I like Parents' sweet shamrocks made out of pound cake.

I really like this Green Eggs and Ham wrap idea from The Passionate Cook.

Do you have any St. Patrick's Day traiditions (other than wearing green, of course)? My mom usually made something green for breakfast. I remember one year we had green pancakes with glasses of green milk. =)

Trust

"Trust in the LORD with all thine heart, and lean not unto thine own understanding. In all thy ways acknowledge Him and He shall direct thy paths." ~Proverbs 3:5-6

There Is a Reason

There is a Reason

Alison Krauss

I've seen hard times and I've been told
There isn't any wonder that I fall
Why do we suffer, crossing off the years
There must be a reason for it all

I've trusted in You, Jesus, to save me from my sin
Heaven is the place I call my home
But I keep on getting caught up in this world I'm living in
And Your voice it sometimes fades before I know

Hurtin' brings my heart to You, crying with my need
Depending on Your love to carry me
The love that shed His blood for all the world to see
This must be the reason for it all

Hurtin' brings my heart to You, a fortress in the storm
When what I wrap my heart around is gone
I give my heart so easily to the ruler of this world
When the one who loves me most will give me all

In all the things that cause me pain You give me eyes to see
I do believe but help my unbelief
I've seen hard times and I've been told
There is a reason for it all

Everybody's Going Green!

Bright Ideas' green popcorn balls will take care of anyone's sweet tooth!

Family Fun's Irish Punch sounds delish!

Zakka Life's jello shamrock looks yummy!

No Time for Flash Cards' shamrock rice krispie treats are right up my alley!

I absolutely adore this wax paper shamrock idea from Smilemonsters.

I really like Molly Irwin's wearable shamrock crayons!

Kids Craft Magazine shows how to make this leprechaun paper bag puppet. Cute!


This 'Lucky Gold Hunt' activity idea can be found at No Time for Flash Cards.

Here's to a great weekend!

Stronger After Being Broken Down

I found this on Melanie's blog. She said it hit home for her, and I think it will for a lot of you....

"Muscle tissue gets stronger after being broken down.
I believe the same is true for our souls.
Feeling broken from a crisis opens our hearts
and help us appreciate things we previously took for granted."

- Niles Goldstein, Real Simple Magazine

What it Means to be Strong

We are Bill and Victoria Strong. Our precious daughter, Gwendolyn DeBard Strong, was born perfectly healthy October 4, 2007. This is the journey that follows... the good, the bad, and all things Gwendolyn.

10.4.07 Gwendolyn DeBard Strong

Born - 10/4/2007 at 8:39am
Weight - 6 lbs. 9 oz.
Length - 19 3/4 in.

12.14.07 Infant Botulism Diagnosis

Gwendolyn was admitted into the ICU this afternoon and they are treating her as if she has infant botulism; a very rare (a few hundred cases a year in the country), typically soil born illness that basically leads to paralysis in the limbs and if untreated can quickly make it difficult for the patient to breath, swallow, and eat. The good news is that when we brought her in to the hospital she was still doing quite well, is still eating well, and seems relatively comfortable. We've been told that the antidote is extremely effective so assuming the diagnosis is correct once the antidote is administered she should quickly improve and should more or less fully recover within 3-4 weeks in the hospital. The antidote is very controlled and protected by the federal government (don't know why yet) but we received approval tonight and it is being flown in from some Army base as I type this. It should be here in the next few hours and will be administered immediately over a few hour period. It's obviously early and we're learning more by the minute but the pediatric neurologist and ER doctor we saw this afternoon seemed pretty confident that this is what she has. We're still in complete shock and scared and just trying to take it one step at a time.

4.3.08 SMA Diagnosis

As parents, we have learned the worst: Gwendolyn's illness is terminal. This is the most difficult news we have ever had to face and now share with those who care for us and our little girl. We are devastated, confused, and in disbelief. We have more questions than answers at this time, as we are still coming to terms with the enormity of it all.

What we do know is that Gwendolyn's illness is a relatively rare genetic neurodegenerative disease called SMA Type 1, which stands for Spinal Muscular Atrophy, also known as Werdnig-Hoffmann Disease. It is caused by a missing gene combination responsible for the production of a protein that is critical to the survival and health of nerve cells in the spinal cord that the brain uses to develop and control the muscles. We are apparently both carriers of one copy of this recessive, defective gene and unknowingly passed our copies on to Gwendolyn.

Given Gwendolyn's improvement during her hospital stay in December/January and thereafter, we remained hopeful that the original Infant Botulism diagnosis was correct. But the doctor's were always forthright that SMA had never been completely ruled out. Gwendolyn's clinical fact pattern was always described as "atypical" of both Infant Botulism and SMA. There are and probably always will be many, many unanswered questions around her specific case relative to the "typical" SMA case. Over the last month Gwendolyn's movement progress slowed and SMA was spoken of with more frequency and so a genetic blood test was ordered several weeks ago. We learned the results of that test on Monday. Unfortunately, we are told that the results of this test are 100% accurate. The prognosis is not good -- most babies don't make it past two years and many begin to plummet around eight months old. There is no treatment except to keep Gwendolyn as comfortable as possible, as happy as possible, and cherish every second we have left with her.


2.10.09 Honest Things

I've come to terms with the fact that I'm going to lose Gwendolyn to SMA, but I'm terrified of watching her slip away from me.

I appreciate when people ask questions about Gwendolyn; I hate when people don't and instead choose to make ignorant assumptions.

I worry about our $5mm health insurance cap from time to time; it didn't even cross my mind when we set the policy up 5 years ago at age 27.

I think of Gwendolyn's funeral often and I'm comforted every day when I walk past our church where it will be held.

I get anxious knowing that we'll have to save Gwendolyn's life at some point again; it comforts me to know we are well equipped to do so.

Most of the time I feel like it's next to impossible to focus on anything other than Gwendolyn and Victoria; but, they're all that matters right now.

Wherever we go, I know where the nearest pediatric intensive care unit (PICU) is and I know which one is best suited for SMA and our philosophy of care.

I'm now a complete germaphobe, but it's life or death for Gwendolyn.

I have a hard time remembering what it was like to not have a child with such "special" needs.

I've become comfortable with empathy; I'm not okay with sympathy.

I worry about the toll this is taking on Victoria, Gwendolyn, our family, our friends, and me.

It bothers me that we have to keep a bag packed for hospital emergencies; it stresses me out that we'll be using it again.

I wish that when people were unsure of what to say, they'd just say nothing.

I understand that all parents have to make weighed decisions, but every-single-simple-decision-I-make-for-Gwendolyn-has-actual-life-or-death-consequences.

I've become accustomed to the constant sounds of Gwendolyn's machines, but I think that when they are gone the silence will be deafening.

I worry about keeping Gwendolyn stimulated - bringing the world to her - but I know I am doing the best I can.

I'm no longer self-conscious about how "different" we are; whatever that means.

I've always had a "life is short" mindset; I never thought my daughter would be the one to teach me what that truly means.

I'm the furthest thing from a doctor, but I am one of Gwendolyn's caretakers and I know what is best for Gwendolyn.

When I'm in crowded places, I sometimes think about how many people around me don't know they are carrying the SMA gene; that makes me sad.

I've thought about whether we made the right decisions, not for us, but for Gwendolyn; her zest for life and playful smiles lead me to believe we have.

It's exhausting to constantly have to fight for everything and educate others; I wish the system were different and this weren't so, but I'll never stop fighting.

It kills me that our family is going to shrink, when it should be growing.

I am mindful that every time I hug and kiss Gwendolyn goodbye or goodnight that it may be the last time; and I make certain to cherish every single joyful one of them.