Pink Balloons, Prayers and a Song...

Today was Rare Disease Awareness Day. We did a balloon lift after school/work and wrote prayers and names on our balloons. All the balloons were pink because the woman at Kroger couldn't speak English, but she understood "pink", so you take what you can get, lol... I think we still got the point across and it was a meaningful event.

I was acting silly as I drove home from work with a half dozen "peeenk" balloons.  Bless her heart, I got there and she had every color, I just really don't think she understood... The cause made it worthwhile, no matter what color they ended up being.

We had fun writing on the balloons. Sophie wrote a sweet prayer, "I hope you can hele me, please cherish me in your presents I love you Lourd, Amen"

We wrote names of children that we know are in heaven, or names of children that we know that are suffering or have suffered with Histio in some form. It was sad, but good for Sophie to know that other kids have it too and that she's not alone, even though she really feels alone in this sometimes. 

My mom was good enough to take pictures. Aiden was sooo sick in this picture, but he wanted to be with us, so we got a picture, just the three of us... We all prayed and then launched the balloons up to the heavens. I know this exercise meant a lot to Sophie, and it meant a lot to me that we were included in some small way with the folks around the world just like us, and many worse-off, that are going through the same roller coaster day by day.

The next few photos are just amazing to me. My friend Melissa, showed up with camera in tow, at Sophie's party on Saturday and took the following pictures. They are in random order, and I am still just in awe of them, to be honest... www.snappedwithlove.com.... just amazing!!!

This last picture is of Sophie, taken by me, in my parents' house, just before the balloons launched this afternoon. Please continue to keep us in your prayers. She has fever between 99.5-101 every day and has bad headaches and fatigue. She is so tired at the end of the day, that she mostly wants to lay around and do nothing. Though I can relate, I wonder how this is all going to play out... I guess only time will tell...

So, today was a good day, and I am cherishing the fact that Sophie was well enough to participate and pray for the children that are fighting Histio. She is amazing, in fact, she wants to take the piggy bank she's had for the last 9 years and donate it to Jump Rope for Heart to help the kids that are fighting heart cancer. She also said that she wants her hair to grow out to give it to Locks of Love... Where in the world does she get such a generous and giving heart? I am a decent person, but wow... just WOW.... She's blowing my mind.

Nine years ago tomorrow, at 4:13pm, she graced us with her presence. I have never been the same. Sophie made me a mom and I can't thank her enough for how profoundly she has changed my life, and the underlying core of who I am. I am kinder, more reflective and just an all around nicer person than I was before. I knew Christ, but she made Him an urgent priority. I knew I loved my parents, but she made me want to TELL them how thankful I am for all the sacrifices that they made so that my brother and I could live the lives we have led. She made Mother's Day my birth day and made my heart open to unconditional love. Thank you Sophie, "I'll love you forever, I'll like you for always, as long as you're living, my baby you'll be"(Love You Forever, Munsch)

And, for Sophie, I have to add these lyrics because I used to sing this song as her lullaby:

To Make You Feel My Love lyricsSongwriters: Dylan, Bob;
When the rain's blowing in your face
And the whole world is on your case
I would offer you a warm embrace
To make you feel my love

When the evening shadows and the stars appear
And there is no one to dry your tears
I could hold you for a million years
To make you feel my love

I know you haven't made your mind up yet
But I would never do you wrong
I've known it from the moment that we met
So no doubt in my mind where you belong

I'd go hungry, I'd go black and blue
I'd go crawling down the avenue
There ain't nothing that I wouldn't do
To make you feel my love

The storms are raging on a rolling sea
And down the highway of regret
The winds of change are blowing wild and free
But you ain't seen nothin' like me yet

There ain't nothin' that I wouldn't do
Go to the ends of the earth for you
Make you happy, make your dreams come true
To make you feel my love

Goodnight friends,

J