Tuesday, December 29, 2009

Meet Lilly


Okay, time to come back and check in with my adult friends. I've been busy watching so many Backyardigan episodes with my two-year-old grandson that I can literally sing their theme song.
It is snowing here in Portland, not a norm in this rainy city. In fact, my sister-in-law is stuck near her home and the police are not allowing her up a steep hill. So my husband is off in our four-wheel-drive, headed across town to help her out. So while I'm waiting for his safe return, I thought I'd introduce you to Lilly. Lilly is our great-niece and she just turned three years old.

Our little girl is very tiny. She is struggling with an illness for which the doctors do not have a definitive diagnoses. Around age one she quit eating normally and became very ill with ear infections, pneumonia, and other illnesses. Since that time she has been through countless tests and doctor's visits, and is currently seeing specialists in Seattle. They have said that she has super low B and T cells and non-functional antibodies. They have been giving her immunoglobulin G by IV to give her a boost. They know that she has many other symptoms like low appetite/slow growth but so far nothing to tie everything together. She has short telomeres and they think she might have some previously unknown form of Dyskeratosis Congenita.

Despite all of these hurdles she remains a joy to all of us who know her. Her hardworking parents divide their time between jobs, school, and caring for Lilly. In March they will go to Disneyworld as part of the Make A Wish program that will be granting a wish to Lilly, who is all things "princess." We can't wait to hear all about it!

In the meantime she had a very special visit with Santa. After waiting in line at Macys, for what seemed like forever, it was finally her turn. She had been worried about the visit, more than a little frightened. But then she just took off and ran to him, wrapping her arms around the jolly gent and proceeded to hug him intensely for what seemed like forever, not letting go long enough for her mother to get a good picture! After the bear hug, she proceeded to talk to him in what her mother described as a "strangely intense" manner for about five minutes! Her mother couldn't hear what she was saying, but the kindly Santa was quite taken with his tiny visitor, and told her mother she could come back anytime. (Click on the photo to see their expressions.)

We don't know what they talked about, but we do believe in miracles. So please say a prayer, or send healing energy to our little darling. 2010 is going to be a great year for Lilly!

35 comments:

Natalie said...

Oh, consider it done. Such a brave and VERY gorgeous little princess. :D

Lydia said...

Crying.
She is beyond precious, and this is the all-time best Santa picture EVER. Consider sending it to The Oregonian, or one of the TV stations in Portland. I watched the 11:00 news on KGW and they showed quite a few readers' snow shots, so.....
What a weird surprise snow- huh? Sure paralyzed the area. I had a dr. appointment in Salem and drove 25-35 on the road home in quite a lot of snow - so thrilling for me because I miss snow so much.

Prayers for Lilly.

Brian Miller said...

a wonderful little one, i am glad to hear you are enjoying yourself as well...i will pray for her, because i do believe in miracles still...

Bonnie, Original Art Studio said...

What a sweet, brave child. How difficult it must be for her parents....and tender-hearted relatives. I, too, wish Lilly a healthy 2010.....and a magical time at Disneyland. Thanks for the introduction Nancy.

DJan said...

I too wish the very best year to Lilly. She is so beautiful. What a great and heartwarming story about a very special little girl. Thanks so much for sharing it with me.

Kathy G said...

What a wonderful picture! It really looks like they're having quite a conversation.

I'll add Lilly to my prayer list.

ellen abbott said...

Sweet girl. I hope they find the solution for her.

Hilary said...

Sending my very best thoughts to this little angel and her family.

I've encountered a lot of Lilys lately. We spent Christmas with an adorable almost-three year old Lil. My neighbour just gave birth to her sweet Liliana (featured on my blog today) and there have been a few others mentioned in blog posts and in passing conversation recently. My mother was a Lillian. So I'm thinking that there's a lot of positive energy associated with that name and I'm betting that much of it is heading toward your little angel.

lakeviewer said...

Oh Yes! Prayers going her way. Miracles do happen!

Reya Mellicker said...

It's so easy to forget how lucky many of us are with our good health. Wow. Poor little thing!

She is lucky to have you and your family to support her. And Santa, too.

I will definitely send healing prayers, definitely!

A Year on the Grill said...

How wonderful... i will remember Lilly in my prayers, It is stories like this that keep St. Jude as my favorite saint, and my favorite annual place i like to contribute.

wonderful story, my kids all cried sitting on Santa's lap at that age

Amy said...

Such a good reminder of how precious life is - Lilly will be in my thoughts and prayers as the New Year comes and proceeds. Prayers for healing and thank you for sharing the beautiful photo of her too.

Wishing you a happy and healthy New Year!

Rain said...

That photo is so wonderful! Sending positive thoughts to you and your family, and precious Lilly! Happy New Year Nancy!!
xxx

Pam said...

Oh she is precious! And so sweet and brave.

Emom said...

Many prayers for you and your family...happy new year..hope it brings hope...smiles.

otin said...

She is so adorable, I hate that she has to go through this.

She is in my thoughts and I hope that 2010 will be a breakthrough year for her.

Elizabeth Bradley said...

What an honor, to meet Lilly. That Santa must have went home and told Mrs. Santa about meeting an extraordinary child.

ρομπερτ said...

May the new year be filled with much joy,hope and love for you all.

Kathy's Klothesline said...

She is a little doll and I am sending prayers and good thoughts to her and her parents.

Jo said...

What an exquisitely beautiful child. Look at the eyelashes! I will definitely say a prayer for her.

Annette said...

What a precious picture and little girl! Praying for a miracle and a joyous 2010 for all!

Lori ann said...

I'm sending every good and healing thought I can Nancy. Bless her precious little heart. Good health for Lilly in 2010.

Whitney Lee said...

What a story! The picture is wonderful.
I cannot imagine...I'll add Lilly and her parents to my prayer list. Who knows what 2010 will bring?

Marguerite said...

What a beautiful spirit Lilly has. I will keep her in my prayers. Wishing you and your family many blessings in the New Year!

Land of shimp said...

She's beautiful, and like Lydia I ended up crying.

I will wish her good health with every cell in my body, in just a moment, Nancy but I wanted to thank you. We can all get so caught up in our day to day worries, that it is possible to forget how fortunate most of us are to simply have bodies that function, and that it is not something granted to everyone.

I hope it is granted to Lilly soon, if wishes and hopes can make it so, it will be.

A special word about that Santa -- I was just having this conversation with a friend, who mentioned that she couldn't help but wonder what sort of person wanted to be a mall Santa (and her implication was clear: What sort of nefarious folks, etc...)...and I was defending Santas quite strenuously, and saying that there are scads of people who simply want to give children a reason to believe in wonderful and magical things.

If only I had had access to this picture, it would have made my case without a word. Not only is he imparting wonder and magic, his expression shows that he is receiving it too.

ds said...

What a beautiful, brave little girl! What a wonderful photo of Santa and your little princess! I hope she enjoys her trip to Disneyland and is able to return many many times!

Happy New Year to you, to Lilly--and to all your family!

Chris Wolf said...

God bless you all

Nancy said...

aww she's adorable! I will pray that her disorder is soon discovered so she can be healed.
Have they tested her for celiac? I just wonder because often celiac disease has those exact same symptoms.

Mental P Mama said...

Bless her heart! She's on my list!

susan said...

Oh she is a very beautiful child. May she be well and may all of you be happy this coming year. Wishing you all peace a blessings in 2010.

Trish and Rob MacGregor said...

Beautiful post, Nancy! Wishing the little one a healthy 2010.

Linda Pendleton said...

She's darling :-)

The Good Cook said...

Blessings and Prayers to Lilly and her parents. Make A Wish is an amazing organization. Especially if you are an aspiring princess!

I love the photo of Lilly and Santa and indeed did enlarge it to see their expressions. Seems there is a bit of Christmas magic going on there... I also noticed some Derma spots on her face and arms.. I only noticed because at the height of TBHITW's battle with dermatomyostitis his skin looked like this... has she been tested for this rare disease?

Deboshree said...

I sincerely pray that Lilly grows up to be a beautiful and healthy child.

Love
Deboshree

Deboshree said...

Awwww! I just saw the whole picture!!
So beautiful Nancy!
Enlarge it and frame it. It captures the beauty of a child's innocence.
Lovely!

Love
Deboshree