Holiday

Well, we have been here for almost a week now. Mike and I did a day trip into Spain last Friday. The weather was quite miserable that day, pretty much raining sideways the whole time. We spent the day in Seville which is a beautiful city. We toured around one of the biggest cathedrals in the world, saw the tomb of Christopher Columbus and ate lunch at some little Spanish restaurant. It was quite funny as they had an English menu but there was nobody there that actually spoke English. Mike ended up spending 10 Euros on some Spanish specialty that looked and tasted like a small plate of Summer Sausage! : ) The rest of the tour was done on the bus as everyone was pretty much frozen. I won't complain as that same day they had snow in Madrid!

Down here in the Algarve the temperature has remained rather warm but we have had a few days of rain. We have managed to get down to the beach a few times now. By some miracle of nature it happens to be one of the most sheltered spots around so even if it's cool and windy up in the town it can be almost hot down on the beach. The beach is surrounded by yellow cliffs that the girls have nicknamed 'The Golden Rock". I myself, have found it a little too cool to actually jump in the water but that hasn't stopped Calla and Maya. They would spend all day every day down on the beach if we let them. They are mesmerized by the waves and love to try to either jump over them or run away from them. The first day that they were down there they ran around without taking a break for two hours! Maya was sick of her bathing suit so she decided to throw it aside. It was so funny!

We have taken to watching the Olympics in the evenings. The live coverage starts around 4:00 pm here and goes on into the night. We tend to just watch after supper and the girls have gone to bed. We really enjoyed watching the snowboarding last night. The coverage has been quite good and I do love to listen to the Scottish announcers and their lovely sayings! The other night they were commenting on some 'untidy' skiing. : )

As promised here are a few pictures:

Beach Bums!

Loving the waves!

Doing a dance at the 'Golden Rock'.

Exhausted after a long day at the beach.

Love to you all,

Kristen

Flight 55 Plus

Since losing Georgia I find myself people watching a lot more. Not really sure why, but I do love to watch people. Now travelling with little ones can be trying, that's for sure but I also try really hard to see the humour in all of the situations that we end up in. Please read this post understanding that I am not intending to make fun of older people, only trying to laugh my way through an overnight flight with two little girls.

So, yesterday we walked up to our gate in Toronto and I started to laugh as I looked around. Mike looked up a little baffled until I made a comment about Portugal being the retirement destination. He smiled as he too noticed that besides two other couples travelling with one baby each, the rest of the seats were taken up with people aged 55 and over.

When the agent announced that they would be boarding rows 32-25 only, the whole place rose to its feet and began to queue up. They did try to make an announcement asking people to please wait until their row was called but it was useless. We were seated in row 22 and we waited until they announced it. That meant that we ended up being some of the last people on the plane! Why is everybody in such a rush to get on the plane? We were going to have at least 6 hours sitting in close crammed quarters as it was! I also found it funny as I boarded to hear a couple of people making remarks about how hot they were and when was the plane going to take off anyway? Well, maybe it wouldn't take so long to board the plane if everybody actually waited their turn instead of blocking the aisles.

The plane ended up being de-iced and left approximately half an hour late. This meant that it left around 11:30 pm and the girls were already asleep. Around 1:30am the flight attendant woke me up with a desperate look on his face. He didn't know what he should do with the 'special' kid meals that been prepared for Calla and Maya. I was actually shocked that number one, he expected my children to wake up and eat mac n' cheese in the middle of the night and number 2 thought that it was definitely worth waking me up to argue about. I looked around however and realized that all of my 55 plus friends were sitting up in anticipation with their trays down waiting for their meals!

Around 2 am as I was just starting to drift off when the flight attendant again woke me up, this time to ask if I was eating and whether or not my sleeping husband would like to eat. "No thank you," I replied again as he looked at me indredulously. A few minutes later he told me that I would have to move my chair into its upright position because the man behind me was trying to enjoy his chicken dinner and it was a bit 'tight'. There were a few other people that had their chairs back including Mike and the girls but I was the only one asked. I just smiled again and told myself that one day I too will be annoyed when I try to eat my chicken dinner at 2 am and the pregnant mother sitting in front of me is trying to catch some ZZZZs. I am going to try really hard to remember what she must be thinking however! : )

Before the flight attendants could even finish delivering the meals there was a line behind them, all of the 55 plusers now had to go to the bathroom. One again, an announcement was made that they should remain seated for a few more minutes in order to allow the attendants to finish up with the service. Now, the kids in Maya's pre-school class cooperate better than the lot that was on the plane. They just lined up behind the trolley and slowly followed the flight attendants as they made their way back, annoyed looks on their faces. I just shook my head and started to giggle. At least, at over 5 months pregnant my bladder isn't quite as desperate as these poor folks.

Eventually I drifted off again. As the sun rose, the girls and Mike woke up and we all had a muffin for breakfast. In the end we arrived exhausted yet safe and are very excited about exploring this new country. It was pouring when we arrived but the sun came out this afternoon and we all went for a walk down to the grocery store and then had dinner with my parents. We were all asleep by 8:00 but now that it's almost 1:00 am here we're all awake. I am going to get the girls something to eat and then try to coax them back to bed. It really is only supper time in Winnipeg! Wish me luck!

Love to you all,

Kristen

Just One More Time

Allright, the Gwendolyn Strong Foundation has one more chance to win another $5000. It took me approximately 30 seconds to vote and I am hoping that you will take the time to do it too. It's so easy and every little bit helps in the battle against SMA. Here is what Victoria wrote on her last post:

I'm no hero. No more so than any parent fighting for their child. But, if I win the "Hero Next Door" contest, that means $5,000 more for SMA research and awareness. And so, I am asking for your vote once again.

Care2 -- the company who hosts our PetitionToCureSMA.com, who has been incredibly supportive of our cause, and who we simply love -- has teamed up with Tom's of Maine to create the Hero Next Door contest -- every day people doing more. We were nominated, along with dozens of others, and here is the neat thing -- we made it to the top 10 finalists! Now this is where you come in...

Here is the breakdown:
Voting ends February 26th.
You can only vote ONCE.
The person with the most votes wins $2,500 for their charity and $2,500 for themselves -- which, in my case, would obviously go directly to research and awareness because there is nothing more important! So that's $5,000 for SMA -- all with a simple vote.
Technically only one person can win and so "Victoria" is the name you see, but the nomination is clearly for all of us -- including Gwendolyn.
How to vote:
Go to: Hero Next Door
Click on Vote for Victoria. (It is the green button at the bottom of the page.)
Fill out the form (name, birthday, email and zip code).
Click on the animal picture (to help stop spammers).
And then hit "Vote" and that is it.
You will see a big "Thanks for voting for Victoria Strong" to let you know your vote went through.
Since you can only vote once, help spread the word by also using the "Tell a Friend" features on Facebook, email and Twitter by clicking on the icons on the right.
And again, all $5,000 will go to the Gwendolyn Strong Foundation to support SMA research and awareness! Thanks for once again supporting us and getting your voting skills out! We are all becoming pros :)

I promise that it doesn't take long. I managed to do it in between packing. We are off on holidays tomorrow afternoon. I will post more in a couple of days hopefully with some great pictures! : )

Love to you all,

Kristen

Loss

In the world of SMA loss seems to be a common word. And, today another family has experienced a loss. Sweet little Hodges passed away at the the tender age of 15 months. He joins his brother in Heaven and leaves behind his loving parents and older sister. If you'd like to learn more about his story click here

We ask that you keep this family in your thoughts and prayers over the next little while as they begin another difficult phase of their journey.

Love to you all,

Kristen

Pleasant Surprise

The first few posts of this blog are emails that I sent out to a few friends explaining what was going on with Georgia. As Georgia's illness progressed the email list grew longer and eventually our friend Glen set up this blog so that anybody and everybody that was interested in Georgia's story could follow. It has allowed us to connect with many more people than we had ever imagined.

There are many reasons that I keep writing, but one of them is that it remains a way for us to keep her memory alive. So, the other day I was very touched when my friend Laura showed up with a new copy of her Total She Catalogue. Total She is a company that sells all kinds of pretty and useful things for women. Many of their items can be personalized. The pendant that I wear everyday in fact, is a Total She product. On the cover of the catalogue is a new pendant in the shape of a heart with the engraved name Georgia. I have since been told that the name of the pendant is actually Georgia (although you can have any name engraved that you'd like) and it is in fact named after our Georgia.

This was an amazing and very touching surprise. We are so grateful to the people involved in making that happen. I have attached a picture below of the pendant. You can also check out Total She Products here or contact my friend Laura at laura.shegirl@gmail.com for any of their products. Knowing that our daughter's memory is carried in the hearts of so many means a lot to us.

Love to you all,

Kristen

Kids!

Kids often say the funniest things. They are so honest and carefree and don't worry about hurting people's feelings when they ask questions or express opinions. Despite being caught in some uncomfortable conversations with little ones since Georgia became sick I still love what they come up with. Their straight forwardness allows us brief glimpses into what they are really thinking...unlike adults who have learned how to lie and hide feelings.

The other day one of Calla's little friends asked what my pendant says. For those of you that don't know I wear a pendant everyday with the words Calla, Maya Georgia on it. It was a gift from friends and I treasure it. It has really become just as much a part of me as my wedding ring. So I read the words to the little girl and she then asked me with all of her innocence why I didn't erase Georgia's name because she died? I do admit that it took me a second to recover before I told her that Georgia remains just as much my little girl as Calla and Maya. She accepted my response with a big smile and off she went to play.

Then there was another day when I could hear Calla and a friend having a conversation about siblings. At one point her friend told her that she would only have two sisters because Georgia had died. I was just coming around the corner about to intervene when I saw my daughter set her jaw and reply in a very firm voice, "Just because Georgia is in Heaven doesn't mean that she isn't my sister. So, actually I will have three sisters. There will be four of us." That's my girl!! I could not have been more proud in that moment. My 5 year old had handled the situation perfectly.

For the last nine months I have been feeling so bad for Calla and Maya. I can accept my fate but I admit to struggling daily with what my girls have been dealt. They didn't do anything to deserve what happened and they are just starting to understand the world. I have often worried about how losing Georgia would affect their self esteem, how they would view the world, and how they would handle situations later on in life. Mike and I have always considered Georgia our gift and we believe that she was sent into our lives to set us down different/better paths. Why did she have to leave Calla and Maya though? I've always believed that Calla and Maya were the innocent bystanders caught in the crossfire.

As I watch my girls grow and change however my view is starting to change. Calla and Maya would never ask me to erase Georgia's name from anything nor would they not consider her their sister because she is in Heaven. They understand more than most children that the bonds of love extend well beyond what one can see and touch. They understand that a life, even a short one has meaning and can have a huge impact on those around it. What is even more extraordinary is that they seem to be teaching others these lessons as well.

While I remain sad that my girls were separated physically, I feel so blessed to have children that understand that love really does remain the strongest emotion and cannot be broken by distance or even death. Calla and Maya were not just caught in the crossfire. Their lives have changed paths as well. It will take a lifetime to see how Georgia's life and death has affected them but I don't feel so bad for them anymore. Georgia was their gift just as much as she was Mike's and mine.

Love to you all,

Kristen

Happiness

We are happy here in the Lucas household this morning. Why? Not just because the Gwendolyn Strong Foundation won one hundred thousand, not just because they came in sixth place and received over 50 000 votes but also for the first time since losing Georgia nine months ago we feel like the SMA community is finally being heard!

So, how does one little charity that most have never heard of, supporting a disease that most have never heard of, place sixth out of 100? How do they get 50 000 people to vote in one week? Dedication, hard work and never giving up! I have to tell you that throughout history begging and harassment are normally frowned upon but I have never been more proud of all the begging and harassing that I have done over the last 8 days. I have never been more proud to be part of a grassroots movement that gets things done by using shear will.

So, if you are one of the people that helped to make this happen do a little happy dance, give yourself a pat on the back, high fives and hugs all around. For Gwendolyn, Nicholas, Dakin, Haylee, Sophia, Nora, and Hodges who continue to fight, never forgetting Georgia, Nicholas, Olivia, Marshall, Emersyn, Zachary, Zane and so many more, we hope that you will continue to say the words Spinal Muscular Atrophy out loud. We hope that you remember that while people will get over being annoyed by messages on Facebook and through email, we never get over the loss of a child.

Thank you for reminding us that we are not on this journey alone. Thank you for reminding us in the power of the human spirit.

Love to you all,

Kristen

Please consider sending congratulatory messages to Bill and Victoria Strong. They worked like dogs to make this happen and along with Gwendolyn they inspire thousands of us to keep going everyday.

My SMA Reality

Well it's sometime between 2:30 and 3:00 am and I am wide awake, a hazard of being a grieving parent. So I thought enough with these scientific definitions of SMA. Instead I thought that I would share with you what Spinal Muscular Atrophy has meant to our family.

SMA has meant looking our baby girl in the eyes and watching all dreams of a future with her fade. It has meant making heart wrenching decisions regarding her care and disregarding what medical experts often had to say. SMA meant sleeping with one eye open or not at all. It meant watching oxygen stats and heart rates while holding our own breath and feeling like our own hearts were about to burst out of our chests. SMA meant holding our darling girl and wondering if she would live to see another day. It meant anger, worry and constant anxiety.

SMA meant holding her and remaining calm even as I knew that she was taking her last breath. It meant wrapping her in a blanket and walking her out to waiting strangers to take her little body away. It then meant learning to live with every decision we had ever made about her care.

For Georgia it meant struggling for every breath and being poked and prodded by strangers. It meant staying in a strange and noisy place for 17 days. In the end it meant laying her in a fluffy pink casket because what else do you pick for a baby girl?

For Calla and Maya it has meant saying good bye to a baby sister. It has meant watching their parents fall to their knees and weep on more than one occasion. It has also meant weeping alongside of their parents for reasons that they probably have never quite understood.

For Mike and I as parents it has meant answering questions like,"Why do they get to keep their baby and we don't?, and "Did Georgie do something wrong?" It has meant learning to answer these questions patiently instead of screaming, "I don't know!" and, "No!"

For Mike and I as husband and wife it has meant grieving in separate corners and fighting against the tide of grief to find our way back to each other. It has meant fully acknowledging a %90 divorce rate and saying, "NO. Not an option."

SMA still means hearing your spouse cry in the middle of the night and having no words of comfort to offer. It also means waking up in the middle of the night crying because the hole in your chest is aching so terribly.

SMA is so ugly and yet what is so ironic is that it's victims are hauntingly beautiful. Most of them can tell you more with their eyes than we can with vocabularies of thousands.

This is the hand that fate has dealt my family. This is my SMA reality. Mine won't change but you may be able to help save somebody else. This is the last time that I will ask. Please vote today and please, please, please, ask others to do the same.

Off to bed now,

Love to you all,

Kristen

Holding 'Strong'

Well, it's been a bit of a roller coaster ride but the Gwendolyn Strong Foundation has pulled back into sixth place. This means that the charity remains in a position to win one hundred thousand. This is in large part due to so many committed individuals refusing to take 'no' for an answer. Many of them are parents or family members of those affected by SMA but others are friends, acquaintances and even strangers. Of course, the charge is being led by Bill and Victoria Strong who along with Gwendolyn inspire so many of us every day.

Mike and I had a good laugh last night as he decided to email everyone in his address book requesting that they vote. Our address books are designed to pick up anybody that we have ever corresponded with so this meant that he emailed all kinds of people including people we haven't heard from in years. This also means that bank managers and city employees will have received our requests. Our thoughts were that even if they took the time to ask, "What the heck is SMA?" then it would be worth it.

SMA remains a disease that most people have never heard about despite the fact that it is the number 1 genetic killer of children under 2. Why? Well sadly this is partly due to the fact that the victims die before they ever make it out into the community. Autism, Cystic Fibrosis, Cerebral Palsy, Cancer are all diseases that we know because we encounter them everywhere. The individuals that are afflicted with these conditions are often old enough to be in school, work, have friends etc. Georgia was 6 months old!

Another reason is that many of us are still told to take our children home, to love them but there is nothing that can be done. We could have taken our Georgie home, loved her, buried her and tried to move on but the last part just seems so wrong. Georgia has taught us and I know so many of you that there are many ways to help make the world better. We refuse to let her be forgotten, and we refuse to give up on the idea of helping others with the same condition.

Having said all of that can I just say that we here in the Lucas household are totally humbled by the support that we have received. My Facebook page is filled with all of your requests asking people to vote for GSF. I have had a chance to reconnect with people that I haven't talked to in years and they too have taken up the cause. Some of you have even joined Facebook just to vote. To you we can only say thank you.

The only way that we can hold on to this position is if we keep going. I know that some of you are probably annoyed but think about it this way. Autism has Jim Carey and Jenny McCarthy. They have books, millions of dollars of research, treatment and 'cures'. Their victims are out in the community getting noticed. Our children remain silent for the most part. We have no celebrities and no treatments. All that we are left with is manpower and hope.

So, we continue to ask that for two more days... come on it's only two more days... you continue to post and forward our message of hope. Tell people about SMA, ask them to vote. For the most part, when people actually learn about SMA they want to help. The key is getting them to know what SMA is.

Love to you all,

Kristen

2 Minutes?

Our sweet little Georgia Lily lived for 6 months, 15 days, 6 hours and approximately 15 minutes. A life cut much too short by a disease that shows no mercy. All that we are asking is that you take 2 minutes to vote for the Gwendolyn Strong Foundation (see our link on the side) and if you have another 2 please take the time to tell others. You really could help to save another child from suffering the same fate as Georgia's.

Love to you all,

Kristen