Angels Among Us

To all of you attending the service on Monday, one of the songs that will be sung is Angels Among Us. We will be handing out the lyrics in the hopes that everyone will at least join in for the chorus. If you want to familiarize yourself with the song it's pretty easy to find on Youtube. The one video even has the words up on the screen. Come on, the more of you singing means the more voices to drown my dreadful voice!! Think about it! : ) Georgie just loved singing!

Good night, God Bless,

Kristen

Thank you Ellen!

Mike and the girls just left so I sat down to the computer and played TO WHERE YOU ARE by Josh Groban on you tube. This song always seems to give me comfort even though it makes me cry. I can't tell you how many times I have listened to this song over the last few days. Sometimes I'll scroll down and look at the related videos and I found one of Josh and Ellen doing a duet. I went from crying to smiling to laughing within a couple of minutes. I consider Ellen a gift to mankind. I watched her show almost everyday in the hospital. It was often the only show that I watched and somehow she always made me laugh even in my darkest hours. If anyone ever gets a chance to meet Ellen (maybe some of my American friends)please take the time to thank her for sharing her gift. Laughter is amazingly powerful!

I am now on my way out to look for a pink shirt for my husband! : ) That or a tie.

Love to you all,

Kristen

Crazyland

Today I got to see Georgia or rather Georgia's body. As they opened the door to the room I practically ran to her. She looked so beautful wrapped in the blanket Grandma had made laid in her pretty pink bed. I started by touching her hands and then slowly looking her over. I took off her socks to stare at her toes and lifted up her shirt. I even undid her diaper just to assure myself that she was as I had left her. Before I knew it I had picked her up and was holding her in my arms. Yous see, the one thing that I have come to realize is that I miss the weight of her in my arms and against my body. I can look at pictures and see her beautiful face and bright eyes. I can watch videos and hear her laugh. I can even put her blanket to my face and smell her but I can't feel her weight. Had I been but a silent witness to this scene I would have been on the phone demanding a psychiatrist. Instead I found myself in a chair holding my beautiful baby girl unable to move.

Eventually I did put her back however and carried on with my day. This included a trip to the mall where I started to cry in the jewelry store because the sales clerk just did not understand why I needed two of the exact same lockets and they had to be the ones with angels on them. As I walked around the mall I kept my eyes wide open ready to turn my back or duck into a store should I see someone I knew. Welcome to Crazyland folks! This is now my place of residence.

Just to assure you that I am not completely out to lunch I did make it back to the mall later to finish my shopping without the girls. I managed to buy everything on my list including a pair of nylons and a bathing suit without any type of breakdown. I am positive that this is a sign that I'll make it through. Buying a bathing suit is always a crazy experience never mind the fact that I did it at WALMART!! : )

I also bought a pink dress coat for Monday. I didn't have a coat to wear over my dress and I am not a huge fan of black so I bought pink. For any of you who don't like mourning colors and are attending on Monday consider pink. I think that it is totally appropriate to say good bye to a little girl and it might even make us smile.

Love to you all,

Kristen

PS Thank you Victor and Edna, the lilies are incredible and I can smell them from any room in the house!

video

If any of you would like to watch a video of our portrait session you may use the link below

http://gallery.me.com/ellebee2/100339

Username: georgia
Password: Kristen

We are aware of the two little errors at the end. Thank you.

Part of the reason I am sharing this with you is so that you can see the amazing work that the NILMDTS organization does. Thank you Lisa!

Love to you all,

Kristen

Twinkling Stars

Tonight as I was coming home from my parent's house I saw the twinkling stars at the Blue's home for the first time. Forgive me Blues, I hadn't really left my house in over two weeks. I felt compelled to drive right up and park. Mike and I sat there for several minutes, tears streaming down our face marvelling at how perfect your light display is. Thank you!!

Most of the arrangements have now been made. There are still lots of little details but the big ones have been taken care of. We continue to be grateful to all of your heartfelt messages and acts of love and support. Thank you to all of the Shine Dental group for the generous package that arrived this morning. Thank you to my 'across the street neighbors' for the memory box and the gift certificate to Sage Gardens. Picking out the flowers to go in Georgia's garden will be a family affair. Thank you for the angels Kristina. Calla and Maya have been wearing them with pride.

So many of you keep wanting to do something so once again I have a few ideas. If you aren't comfortable with the whole donation idea then how about planting a tree or some lilies in your yard? How about taking 5 minutes everyday and trying to make your loved ones laugh? You can call them Georgia moments as one mother now calls them. Or follow another family's lead, they are having a garage sale this weekend with all proceeds going to the Children's Hospital. I asked one of my friend's today to post the link to sign the petition to cure SMA on Facebook. This is the best gift that she could give me because she know LOTS of people.

You see you don't actually have to do something for us directly. We just don't want you to forget our Georgie. Get out there and do something good. Whatever you choose to do it will be perfect as long as it comes from your heart.

Memorial Service

We had hoped to have a memorial service on Saturday to accomodate all of our working family and friends but unfourtunately we have to wait until Monday morning. The service will be at 10:00 at GlenLawn Memorial on Lagimodiere. The interment will happen immediately thereafer followed by a reception. We are hoping that those of you that have children, especially those that know Calla and Maya and knew Georgia will consider bringing them at least to the reception. We are planning on having a balloon release if all goes to plan. There will be a viewing on the Sunday afternoon from 2:00 until 4:00 for those of you who wish to see Georgie one last time.

For those of you coming from out of town the closest hotel is the Canad Inn Windor Park. It has a pool and a waterslide and is just down the highway from the funeral home. Also for all of you out of towners who are making the trip would you please contact us via email. We are trying to get a better idea of numbers. Of course, all are welcome.

You will find the obituary in Friday and Saturday's Free Press.

Love to you all,

Kristen

little star

In the hospital Georgia was sometimes agitated, and often the best comfort I could give her was to sing or hum along with the lullaby music we had. We had one Fisher-Price crib toy that would repeat "Twinkle, twinkle Little Star" over and over, and my voice would grow hoarse as I sung along to it, willing her heart and respiration rates to go down.

Twinkle, twinkle Little Star
With so much time singing it, I started to see the lyrics differently. Georgia was my Little Star, so very brave, and the twinkling of her beautiful eyes was a glimpse into the brightness of her soul.

How I wonder what you are...
When Georgia was younger Kristen used to repeat the story of how on the island of Bali, newborn babies are considered "not of this earth" and aren't allowed to touch the ground until 100 days old. All newborns have that otherworldly essence, but the story seemed particularly applicable to Georgia, and she was a constant source of wonder from birth through her last days.

Up above the world so high, like a diamond in the sky
On the day she was diagnosed with SMA, I told Kristen that I felt somehow that Georgia had the soul of a traveler. She was here to experience life with us, to bask in our love and to bring us unexpected joy. And while she could only stay for a short time we could take comfort in knowing that she was moving on to continue her journey, her purpose.

Goodbye, little star. Thank you for the light you left us: for shining, for guiding, for being you. And good luck -- wherever your heavenly orbit takes you.

(note: cross-posted with Kristen's post below)

avoiding sleep

I am obviously avoiding going to bed. I can't remember the last time that I slept through the night. The silence of my room tonight seems wrong. There is no Vpap machine and no sound of oxygen tanks. And so, I came down to the computer. I have been reading your comments over the last few hours. Thank you. What I really need all of you to know is that the one thing that will allow me to sleep tonight is what I just saw on the petition website... so many names that I recognize, some that I didn't but still mentioning Georgia. You see actions really do speak louder than words.

All of you ready to take up the fight in my daugher's name will allow me to rest tonight. While my Georgie baby has finished her earthly journey, her mother's has only just begun. Please continue to forward the petition and our blog. We have a meeting at the funeral home tomorrow and will post further details sometime later in the day.

Love you all,

Kristen

Farewell my Angel

Georgia took her last breath sometime around 11:30 this morning. I can't be sure because I couldn't see the clock. In the end it was her and I. It was oh so hearbreaking yet oh so peaceful. She was in my arms and we had Bob Marley Lullabyes playing softly in the background. Daddy and sisters arrived within minutes to say their goodbyes as well as the amazing duo Dr. Mike and Simone.

We will keep you updated with further information.

Once again I thank you all for your prayers, love and support.

Kristen

April 20th, 10:00 AM

Don't have time to talk. Georgia is working much harder to breathe this morning. No one is sure which way this is going to go. We are taking it hour by hour. If you are praying folk, please pray for Georgia to get stronger and give us more time. Thank you.

Fever

Georgia developed a fever around 4:00 this afternoon. Thank goodness is was shortly before the team was scheduled to arrive. I gave her some Tylenol and we have now started a new course of antibiotics. Once her fever had broken and she woke up she was quite happy. I even brought her downstairs for a while for a change of scenery and of course a ride in the swing. At the moment she is sleeping if somewhat fitfully (Is that even a word?!) Mike and I are both pretty tired and are going to turn in for an early night. Once again we are hoping for an uneventful night and a happy morning.

Thank you to all of the families that have been contacting us. As we find the time we will definitely be in touch. Thank you to all of you that continue to pray for Georgia, keep her in your thoughts or send your positive energy her way. I don't think that we ever elaborated about the 'episode' last Saturday night but at one point we were told that she had hours maybe minutes left to live. Nobody can explain what happened but somewhere during those few moments she stabilized and we have been given 9 more days with herso far. It was too early for the antibiotics to have kicked in, so essentially there is no scientific explanation as to why she got better. I'll let you draw your own conclusions. But we continue to be grateful for all of you.

SMA

Sometimes when Mike and I have some time we'll scan some of the sites on SMA. We don't get a lot of time so truthfully we haven't done much research. Last night however, we stumbled onto one sight entitled SMA Angels. All that we saw was a list of names. The names were all babies that had lost their lives to SMA. It was staggering. I keep reading how rare SMA is affecting 1 in 6000 births and yet when you see a sight like that it is a sobering reminder that it doesn't matter how rare it is when it is affecting you.

When I saw the long list of names there was a tiny part of me that said "Well, at least we're not alone." But the bigger part of my brain was screaming "Why aren't we doing more? This is complete madness!" We also came across another sight where you can sign a petition to cure SMA. It's an American site and there are currently over 55 000 names on the list. We, of course signed ours. Anybody from any part of the world can sign that petition. Sorry, I don't have it in front of me but I will for the next entry. (Edit: here it is. -Mike) You see, it doesn't really matter where they find the cure. I'll learn to sign my name in Chinese if it means stepping closer that goal.

Ten years, I was told in hospital. Ten years before we'll see anything substantial with human beings! Ten years is far too long to save our Georgia and sadly, far too long to save the hundreds of babies that will be born in the next nine. Currently, there are no treatments, no diets or exercises and no surgeries. In essence, no hope for the babies born between now and 2018. Some of the babies are living a little bit longer because of the use of the Vpap machines. Georgia would have left us just over a month ago without one. Weeks and months however doesn't even come close to being enough when we are talking about infants.

So, if your heart breaks as you read our blog or as you look at our gorgeous baby girl I throw out another challenge to all of you. Find out ways to share info about SMA, even if that means just sharing our story. Maybe some of you will sign that petition (linked above). Whatever little step you choose to take matters!

Georgia is upstairs napping at the moment. We had an uneventful night and she woke up happy. Thank goodness for one more morning!

A new sense of normal

We seem to have developed a new sense of normal around here. Our days revolve around taking Georgia off the mask for a few hours at a time and then laying her down for a rest in between. How odd it is to be a mother administering morphine through an NJ tube without a second thought. (Truthfully, I shut down my thought process every time I do it) We play with her, read her stories and sing songs with her. Most of the time we don't see SMA even when I place that mask on her face. She smiles, laughs and vocalizes when she is happy and she whines and cries when she is upset. When I look at her, especially into those unforgettable eyes I see only perfection.

I feel like we are all standing on the edge of the cliff however, the sea water straight below and a storm brewing out in the distance. For the time being we are still living in the sunshine ignoring the dark clouds gathering afar. The winds could turn at any time and it would take but one giant wave to drag us all under.

Georgia was happy again today, especially this morning. Grumpa came for a visit and then this afternoon friends Roxanne and Michelle came. Thanks for painting our toenails Roxanne, the girls are just so thrilled about it. This evening Krista came with Abby so in the end it was a bit of a busy day but Georgia took it all in stride. Mike even managed to get her into a sleeper, the first clothes she's worn since first going into hospital -- over a month! She is once again sleeping peacefully up in her bed. Every night when I put her to bed I say a silent prayer that the night will be uneventful and she will wake up happy tomorrow morning.

Thank you to Rita and Laurie for your messages. I have spent a little bit of time on both of your blogs. I now know how everybody else feels when they try to find the words, pretty much speechless. I really like the poem about the pair of shoes Rita. Even though my child still lives and breathes I can relate. Your journal about Marshall is beautiful Laurie. I will spend more time getting to know you and your stories in the days and weeks ahead.