Spring

Today I was up early, just as the sky was lightening. Being a holiday it was absolutely silent. As I walked down the stairs to the kitchen I was startled by the sound of a lone goose. I had been told that the geese were back. Despite the fact that I live in a lakeside community I have yet to see one, so focused am I on the task at hand. Normally I love the sound of the geese in the spring. It reminds me that despite cold weather and crazy amounts of snow, warm days and sunshine are surely on their way. Today however, I found the sound of the goose haunting. Spring is on its way, a time when life starts anew and I am left wondering how long my sweet baby girl can hang on to hers.
Georgia is nothing but an absolute joy. Today she was off the mask for over 3 hours in the morning and 4 in the afternoon. She almost never cries or fusses during these times. She is just so content to take in her world. We're hoping that if it warms up significantly we can take her outside. I'm sure that she saw the geese in the fall but I'd like for her to see them again. I'd like for her to feel the sunshine on her face and see the kids playing at the park. Maybe we'll even see some puppies. What kid doesn't love puppies?!

some videos of Georgia at home

Here are a couple videos of Georgia playing after we took her home. Sorry it's taken me a while to post these, we've been so busy! I've also got several pictures that I'll try to post soon.

It sure is nice to see her having fun and interacting ... what a difference from the hospital!

1. Piano Playing ... this was the day after we took her home and had a "pizza picnic" on our bed.


2. Balloons ... she got so many balloons on her 1/2 birthday party, and she really likes to move them around.


Take care
Mike

Rising River

To all of our Winnipeg friends still wanting to help I have a suggestion. Dr. Mike, Georgia's physician has dedicated his life to helping families bring their loved ones home. If it were not for this amazing man Georgia would probably still be in hospital and we would still be feeling hopeless. There are not a lot of pediatric palliative care physicians, never mind those that believe that home is best. Tonight, Dr. Mike's home is in danger as the river climbs to dangerous levels. The dyke along Kingston crescent needs to raised by at least a foot and it sounds like they are going to start sandbagging around 9:00 AM tomorrow (Friday). If you are feeling the urge to do something please go help Dr. Mike and all of the volunteers tomorrow morning. Trust me, he deserves this.

Georgia continues to have a good day. She hung out in her swing again and now she is playing with her sister in the living room and listening to fun music like "Sandwiches" by Fred Penner. That song can always make me smile. : )

Sometimes in the few moments in between sleep and wakefulness I am truly calm. Sadly for me as I am a light sleeper those moments last mere seconds and then I awake to find myself actually living a nightmare. My mornings are no longer filled with the sound of Georgia babbling ( as she used to so often do starting around 5:00 AM) but rather the sounds of the Vpap machine and the oxygen tanks. Georgia often awakes happy however, her big blue eyes taking in the morning and then the nightmare seems a little less scary.

Today we brought her downstairs and placed her in the swing. Her whole face lit up and she was happy in there for over an hour. The swing always was her favorite place. She also spent some time in the kitchen watching her sisters play. She was full of smiles and we continue to hear her laugh. We savour every moment we have with Georgia.

Mike's dad is in staying with us. He arrived with gifts for the girls of course. The best one being a dream catcher for Calla and Maya. They were thrilled to hang it in their room and have something catch their bad dreams. Great thinking Grandpa Bob!

Honesty

The last couple of days have been filled with many supportive messages and offers of help. There have also been many people complimenting Mike and I about how we are handling this. I hear words like strength and courage and many other positive words. These words lift us up but I also feel the need to be honest, not just for all of you reading today but for those people that will read our blog in the future, for those who may have lost a child or are in the process of losing one .

My emails are written when I am in the mindset to do so. There are many moments where there is absolutely no way that I could read the screen and tell my brain to make my fingers type. The messages that I write have also been edited several times in my head. What you don't know is that Mike and I often cry on our knees because our legs will no longer hold us upright. In the hour before we left the hospital I was throwing my fists into his shoulder sobbing that this what not how I was supposed to be bringing my baby home. I can stare at Georgia for hours whether she be awake or sleeping and think that only a few minutes have passed. Last night I couldn't brush my teeth because my mouth kept filling with salty tears. I refuse to leave the house because I can't be away from Georgia. I'm afraid that she'll take a turn for the worse and I won't be here.
Again, I tell all of you this not to make you sad for us but to know that we need you still and will continue to need all of you. I hope that are moved by our story and are spreading the word about SMA. Did you know that it is the number 1 genetic killer amongst children under 2? I had no idea. I had never even heard of it 3 weeks ago. Did you know that despite words like 'breakthrough' we are at least 10 years away from trying anything significant on human beings? This is not a disease that can be fixed by diet and lifestyle. It doesn't matter that I ate mostly organic fruits and vegetable while pregnant. It doesn't matter how long I breastfed my baby. It doesn't matter that I tried to do everything right, I am still going to lose my baby.
Please continue sharing 'Georgia's Journey'. Knowledge is power.

Party

Thank you to all of you that helped us to celebrate yesterday. To those of you that had private celebrations because of illness and distance, and those of you that brought food and drink, and those of you that pushed past those levels of discomfort and fear, and those of you that laughed with us, cried with us and just sat with us we are forever grateful. Georgia came downstairs twice during the party and had Happy Birthday sung both times. I could tell that she felt a little bit overwhelmed but I'm also sure that she felt special. A very big Thank You goes out to Sweet Impressions Bakery for coming in on their day off to bake some special cupcakes for a special little girl!

Today is much quieter. We brought her downstairs for a couple of hours and played with her. She was perfectly content with all of her party balloons! Now she is sleeping which is good because the photographer is coming around 3:30. Grandpa Bob is also arriving this evening from Calgary.

The food has also started arriving. A big thank you to all of our friends at Ecole Guyot for your contributions. For lunch today we ate some delicious broccoli salad. I will never have the time to write individual thank yous so I am hoping that you can feel how grateful we are through our messages. There are so many of you still wanting to help. I am pretty sure that we will still love to have ready made meals in a couple of weeks so please sit tight. Besides that there isn't a lot that can be done for our family except for love and prayers. I ask you to keep asking yourself how you can help others. There are many, many others.

Laughter!!!

Yesterday afternoon and then again today we heard the most joyous sound, Georgia laughing. It was a quiet kind of congested laugh but she definitely was laughing. I had resigned myself to never hearing that sound again. It had been 20 days.
Georgia seems to have settled right back in at home. She seems way more content and actually gets to visit more than one room. The girls have been entertaining her quite a bit. It's so nice to have my family whole again, if but for a short time.
- Kristen

Celebrate and Serve

This morning has been an amazing time. We took Georgia off of the mask and gave her a bath, played with her and just held her while looking at that beautiful face. We took lots of pictures too.
We also told our girls about Georgia's condition. We have told them that Georgia has a sickness that we can't make better and that she is going to die and go to heaven. In order to help them/us better deal with this concept we have told them that Georgia is actually an angel visiting us for a short time. When she is ready and we don't know when, she will leave us and go to heaven. When this happens we will have a huge going away party for Georgia. It's okay to feel sad about this because we love her so much and want to keep her here with us but we only get to be with her for a short time and she will be very happy in heaven. There were many questions, the cutest being, "Where are her wings?" to which I answered you can only see the wings in heaven.
I tell all of you this not to make you sad but to better help you support my children. While we all have different ideas about death and I am sure that there are many religious arguments about who gets to be angels we ask that for those of you that have regular contact with Calla and Maya that you don't contradict us. We are doing our best to keep our family calm during a most stressful time and confusing a 5 and 2 year old will only make things worse.

Georgia was born on Monday October 6th. On Monday (April 6th) she will be 6 months old. You may call me whatever you like but as her mother I know that I will never see her blow out that candle on her first birthday. My daughter will never live to play on the beach or see the leaves change color in the fall. We invite you to join us on Monday anytime between the hours of 2:00 and 8:00 PM to celebrate her half birthday. If you are uncomfortable with this idea please do not feel obligated, we all deal in different ways. If you are reading this email and I don't care how many times it has been forwarded you are invited. It's not very often that we get to celebrate the life of an angel living among us. I know that so many of you are struggling and want to do/give things so instead of gifts I have a list of ways that you can help us celebrate.

1. Consider donating to The Children's Hospital, The SMA association or The Now I Lay Me Down To Sleep organization.

2. Consider donating toys to your local Children's Hospital

3. If you live in Winnipeg go help the volunteers sandbag and feel the exhileration of helping others.

4. If you have a special skill consider volunteering your time and that skill for a family in need.

My daughter is here for a reason and one of those reasons is to remind us all that we need each other. The world needs more humanity and we can all become better people by learning to serve. If you truly want to help our family and honour Georgia then become a better person and help somebody. I have never needed more help in my life and am so fourtunate to have more than is needed but there are many people out there who are struggling and have no one.

We are right by Island Lakes School, email or call for address & directions. The house will be a disaster and I'm not sure what we will be eating and drinking but we will celebrate.

Love to you all,

Kristen

Past email (4/3/09) - Home

Hello to Everyone,

Thank you all so very much for your messages. They do make us feel better. After the diagnosis on Wednesday (which was quite a commotion that I will talk about another day) we met with the Palliative Care team who are the most amazing people that I have ever met. They have answered all of our questions, listened to all of our concerns and relieved us of many of our fears. The fact that we got out of the hospital as quickly as we did is a testament to their dedication. Most of the nurses were stunned how quickly they were able to arrange for us to come home.

The last couple of days have been filled with a parade of people coming to teach us how to take care of Georgia at home and many compassionate nurses, doctors etc coming to say good bye. We even received several phone numbers of nurses willing to provide respite.

I feel it necessary to fill you in with our plan if only to avoid the thousands of questions I may receive over the next while. We have chosen as Georgia's parents to bring her home and to keep her
comfortable and make her feel safe for as long as she is here. We have a team of palliative care nurses and physicians who will come by at least once a day and as often as needed. They are committed to helping us through this. We have been taught how to administer drugs, and feed
Georgia as well as all kinds of other little things now required to care for her. The last email that I wrote entitled Anger is basically inaccurate as to the way that she will leave this place. Choking is
very unlikely according to our palliative care doctor. Eventually the respiratory distress will become greater and greater and we will increase her drugs to keep her comfortable. Essentially what it does is get rid of that panicked feeling and keep her calm. At the end she will most likely be asleep and we will be the ones here to hold her.

Laura, if you want to arrange those meals with the parents from school now I am willing to accept the help. Please remember no nuts or eggs. Darrin if you are willing to come to the house we would appreciate it. Peggy, I am hoping to get Maya into one of the classes starting next week.

We are hoping to keep the next couple of days somewhat quiet in the hopes of seeing how Georgia will fare now that she is at home. Once we are a little more settled visitors will be welcome. At the moment she is settled up in her crib. The crib is now in our room at the foot of
our bed. The ride home from the hospital was great. I think that Georgia knew that she was on her way home because I know that I haven't seen her that calm since before we ended up in hospital. Even the nurse couldn't believe how well she was doing when we arrived.

We will keep you posted with emails and pictures. We have a photographer coming on Monday or Tuesday to capture some of our precious time with Georgia.

Thank you for your continued prayers, love and support,

Kristen

Past email (4/2/09) - Taking Georgia Home

This is Mike. Sorry we haven't been able to write since we got the diagnosis yesterday. I'll just give a brief update and let Kristen do a more in-depth one when gets home.

From everything we're being told we'll be able to bring Georgia home tomorrow afternoon! We've spoken at length with Palliative Care and Home Care staff, and we're going to try to make Georgia's last weeks (their best estimate was she had "weeks" remaining) as comfortable and happy as humanly possible -- for her and for our family.

It isn't what we hoped for but after almost 3 weeks at the hospital it will be so nice to bring her home. There's a lot of equipment involved, but everyone is very nice in showing us how to use it and it all seems manageable. And there are palliative care nurses/doctors on call for us if we need any help.

Take care,
Mike

P.S. As Kristen spent last night at the hospital I printed off the latest emails and brought them this morning for her to read. She often reads through tears but it is obvious that all the kind words bring her peace. They certainly do for me. So thank you, from the bottom of our hearts.