Today is Rare Disease Day. Like Wishbone Day, it is a day to raise awareness of those who face life everyday with a disease that might not be as understood as it should.
For those wondering, a disease is considered rare in the USA when it affects less than 200,000 people in the U.S. at any given time. Noah's disease, Osteogenesis Imperfecta, is thought to affect around 25,000-50,000 Americans.
Please take time to learn more about those who face life with a rare disease, like our sweet Noah. For more information about Rare Disease Day go to www.rarediseaseday.org I am also including their official video here. For more information about Osteogenesis Imperfecta you can go to www.oif.org
This blog was started to follow our journey with our son Noah. It continues in his memory and in the realization that sometimes there are memories worth writing down. These are our memories.
Wednesday, February 29, 2012
Friday, February 24, 2012
Feelings
I still hate the up and down emotions that I have occasionally. Honestly overall we are doing worlds better. Being around family, especially our precious nephew has helped so much. As Noah's birthday gets closer though, those feelings rise right back up and it's like it just happened. It's such a comfort to know that he's somewhere safe and somewhere happy with all of the other precious snowflakes.
Came across this today and I wanted to share. Hope it brings comfort to others as it did to me.
Came across this today and I wanted to share. Hope it brings comfort to others as it did to me.
I thought of you and closed my eyes,
And prayed to God today.
I asked what makes a Mother,
And I know I heard him say:
A mother has a baby,
This we know is true.
But, God, can you be a mother,
When your baby's not with you?
Yes, you can he replied,
With confidence in his voice.
I give many women babies,
When they leave is not thier choice.
Some I send for a lifetime,
And others for a day.
And some I send to feel your womb,
But theres no need to stay.
I just don't understand this God,
I want my baby here.
He took a breath and cleared his throat,
And then I saw a tear.
I wish that I could show you,
What your child is doing today,
If you could see your child smile,
With other children who say:
We go to earth and learn our lessons,
Of love and life and fear.
My mommy loved me oh so much,
I got to come straight here.
I feel so lucky to have a mom,
Who had so much love for me.
I learned my lessons very quickly,
My mommy set me free.
I miss my mommy oh so much,
But I visit her each day.
When she goes to sleep,
On her pillow's where I lay.
I stroke her hair and kiss her cheek,
And whisper in her ear.
"Mommy don't be sad today, I'm your baby and I'm here."
So you see my dear sweet one,
Your children are Ok.
Your babies are here in My home,
They'll be at heavens gate for you.
So now you see what makes a mother.
It's the feeling in your heart.
It's the love you had so much of,
Right from the very start.
Though some on earth may not realize you are a mother,
until their time is done.
They'll be up here with Me one day,
And you'll know that you're the best one!
~Author Unknown
And prayed to God today.
I asked what makes a Mother,
And I know I heard him say:
A mother has a baby,
This we know is true.
But, God, can you be a mother,
When your baby's not with you?
Yes, you can he replied,
With confidence in his voice.
I give many women babies,
When they leave is not thier choice.
Some I send for a lifetime,
And others for a day.
And some I send to feel your womb,
But theres no need to stay.
I just don't understand this God,
I want my baby here.
He took a breath and cleared his throat,
And then I saw a tear.
I wish that I could show you,
What your child is doing today,
If you could see your child smile,
With other children who say:
We go to earth and learn our lessons,
Of love and life and fear.
My mommy loved me oh so much,
I got to come straight here.
I feel so lucky to have a mom,
Who had so much love for me.
I learned my lessons very quickly,
My mommy set me free.
I miss my mommy oh so much,
But I visit her each day.
When she goes to sleep,
On her pillow's where I lay.
I stroke her hair and kiss her cheek,
And whisper in her ear.
"Mommy don't be sad today, I'm your baby and I'm here."
So you see my dear sweet one,
Your children are Ok.
Your babies are here in My home,
They'll be at heavens gate for you.
So now you see what makes a mother.
It's the feeling in your heart.
It's the love you had so much of,
Right from the very start.
Though some on earth may not realize you are a mother,
until their time is done.
They'll be up here with Me one day,
And you'll know that you're the best one!
~Author Unknown
Sunday, February 12, 2012
Future Home!
Wanted to share!
Our soon to be home! If all goes well we will be closing sometime in March. We will be doing some upgrading before we move in so I'm going to have a ton of fun sharing that with everyone! We are so excited about this house!
Sunday, February 5, 2012
Life Flies By
I can't believe it's been so long since I've posted. We've been staying pretty busy which is great. So what has happened since I've last posted....
WE SOLD OUR HOUSE! We got a contract right before Christmas on our house (talk about a Christmas present!) We closed on it January 30. We are officially "homeless" for now. We have already started the house hunting and are already finding ones we want so hopefully we will be moving into one soon!
As far as Christmas went, I think it went as well as we could have hoped. I think the dreading of it coming was worse than the actual day. We were surrounded by family and just had a wonderful time. My husband got me a Silhouette Cameo for Christmas and I've already put it to good use. I can't wait to use it for decor in our future new house. My father gave me my favorite gift this year. He made a beautiful memory box for us to keep some of Noah's things in. As soon as I can take a decent picture of it I will be displaying it on here for all to see. I absolutely love it.
We are both still loving our new jobs as well. I am really enjoying working with the local teens at the library, putting together programs with them. Anyone who knows me knows how much I love reading so I love the fact that I get to read as part of my job description! We really enjoy our church home here and have some really great kids to work with.
So far I think this has been a great move for us! It's great being able to spend so much time with family and we've been blessed so much the last few months.
WE SOLD OUR HOUSE! We got a contract right before Christmas on our house (talk about a Christmas present!) We closed on it January 30. We are officially "homeless" for now. We have already started the house hunting and are already finding ones we want so hopefully we will be moving into one soon!
As far as Christmas went, I think it went as well as we could have hoped. I think the dreading of it coming was worse than the actual day. We were surrounded by family and just had a wonderful time. My husband got me a Silhouette Cameo for Christmas and I've already put it to good use. I can't wait to use it for decor in our future new house. My father gave me my favorite gift this year. He made a beautiful memory box for us to keep some of Noah's things in. As soon as I can take a decent picture of it I will be displaying it on here for all to see. I absolutely love it.
We are both still loving our new jobs as well. I am really enjoying working with the local teens at the library, putting together programs with them. Anyone who knows me knows how much I love reading so I love the fact that I get to read as part of my job description! We really enjoy our church home here and have some really great kids to work with.
So far I think this has been a great move for us! It's great being able to spend so much time with family and we've been blessed so much the last few months.
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