Updates

As many of you know a while back I joined Facebook. While I find the world of Facebook to be somewhat overwhelming it has allowed me to connect with people that I haven't seen in years, join and support causes (most of which are SMA related) and laugh at all of the amusing antics of everyday lives of so many people. I find it a lot harder to keep up with all that is going on with Facebook compared to my quiet life of blogging but I do keep trying and have to admit that I am often inspired by all of the wonderful things that are going on in the world of SMA.

If you want to feel inspired check out the link on the right hand side, under my blog list and read about Stephen Taylor. He is going to run 100 miles in honor of his friend Owen who passed away from SMA at the age of 23 months. 100 miles - Amazing! Thanks for helping to raise awareness Stephen. We look forward to seeing you reach your goal.

Remember the charm bracelet that my friend Tanya made for me. It has beautiful pictures of Georgia and the girls as well as many other personal touches. Well, she has now teamed up with The Gwendolyn Strong Foundation and you can purchase your very own personal bracelet and help SMA in the process. With your purchase you would get one charm about SMA and the rest would be your choice. All of the details can be found under the Gwendolyn Strong Foundation on the Strong's website.

The Gwendolyn Strong Foundation also has a few other ways that you can help support by shopping! Through Beb-e-ssentials you can order very cute and affordable butterfly hair clips or you can purchase one of their very cute hats. Just click on the Gwendolyn's site and then scroll down categories until you find the Gwendolyn Strong Foundation. All of the information is there. We are looking forward to some clips and a baby hat for our new arrival.

Lastly, for those of you following on Facebook you may remember that through the Pepsi Refresh project we all voted and won $250 000 for GSF. There are two other SMA related charities up this month and you can help by simply clicking once, well make that twice a day now through the end of the month. Remember, that the research claims that SMA will be cured in 5-10 years if enough money is granted. Check out my Facebook page if you're unsure about how to make this happen.

We've had to put the lemonade stand on hold for a while. Anybody living here in Winnipeg knows why. It has been raining since last Thursday and the weather is really quite cool, almost cold. If it keeps up for much longer Aria may be hanging out at the stand too! : )

That's it for now. Thank you to all of you that continue to support us through reading, sharing, voting etc. We would not have survived this last year without all of you.

Love to you all,

Kristen

One Year Later

One year ago we were still in the process of planning a final good-bye for our Georgie. She would be laid to rest on Monday the 27th. How we survived this time last year is still a bit of a mystery to me. Some of my memories are crystal clear and some seem foggy, of course even my mind was foggy at the time.

I feel like we have come a long way in one year. The girls are now thriving again. In the beginning, Calla preferred to play pretend games where she was some type of aggressor, usually a cat. She would occasionally lash out physically at Maya or sulk quietly and angrily. The girls' games often revolved around death. This was painful to watch and to hear but as we have moved forward the anger and play around death seems to have dissipated.

Calla started her school year quietly. We were concerned that she wouldn't be happy and would feel insecure. Thanks to an amazing teacher Calla loves school and continues to learn new things every day. She seems to have many friends and gets along with almost everybody. Her self confidence is also returning. While Calla has always been our cautious child we have been so excited to watch her master the monkey bars and just this weekend ride down the block on two wheels! No more training wheels! : )

It's in Maya that we have seen even more changes. Our once spunky and outgoing little girl retreated into herself after Georgia died. She was afraid to try new things and be away from me. She started throwing temper tantrums and didn't sleep through the night for months. School has been an excruciating experience for the both of us this year. She never wanted to go and would often cry as I left her. When I picked her up sometimes she would be quick to tell me about all of the things that she had refused to do and how she had had no fun. This was her way of punishing me for leaving her.

Since Christmas the changes in Maya have been astonishing. As many of you know she finally started sleeping through the night again. In the last couple of months we have seen more smiles, and heard more laughter out of her than all year. We now have a deal about school. I drop her off and if she isn't happy after craft time I will come and pick her up. So far, she has been happy to be dropped off and is participating again. She has also started singing to herself again. Something that I can't get enough of. Maya is starting to make some new friends and has even gone on some play dates without me. My little shadow is slowly is slowly pulling away from me. : ) Our spunky little girl has been returned to us.

One year later and in many ways I am doing the same things. I am still at home with the girls. I am just starting to get the garden ready again and am planning a second fundraiser in October. I gave up the running over a month ago due to all of the Braxton Hicks but am looking forward to getting back into it after the arrival of Aria. We are slowly getting ready for her but I do admit that I am a procrastinator and there is still a lot to be done in the next month. One year later, and while I don't believe that one gets over the loss of a child, I have made peace with most of what has happened. There is no anger left in me, only a sad kind of acceptance that this is the life that I am meant to lead.

As I look back over the last year I have no regrets. I think that that is one of the very big reasons that I have made peace with what has happened to Georgia. Because she remains such a huge part of my life all of my decisions take her and what she has taught me into account. The choices are simple enough, to live well with the gifts that I have been given or to let anger and bitterness overcome me. To make decisions that take into consideration the lives of others or to serve my own sense of righteousness. The choices remain simple enough but making the right decision every time is the hard part. Forgiving myself has also been part of the healing.

One year later and I would still give every last breath of my own to know that Georgie had a chance. That is not the life that I have been granted however, so I choose to accept and move forward as much as I can. If I could do it with half as much energy as the girls I would be way better off! : )

Love to you all,

Kristen

Remembering Georgia

Thank you to all of you that have sent messages via email, facebook, telephone, etc. To those of you that lit candles, let go of balloons bought some lilies or simply took a moment to sit quietly we are truly grateful. In the end, we had a great couple of days away.

We headed south once more, just to Grand Forks, the same place that we escaped to after the funeral last year. We spent our 48 hours swimming, hanging out, eating and yes, cashing in on the great deals thanks to a strong dollar. While I know that this doesn't exactly sound like a quiet time for reflection it was the perfect way for us to enjoy some time as a family. As most of you know, since losing Georgia we have worked even harder to make our family time a top priority. The girls had a blast going down the water slides over and over and over again. Even 'Big Mama' hung out in the Lazy River and took in a couple of slides the last morning. There was lots of laughter and very few tears.

On Wednesday night at dinner we raised our glasses and toasted our Georgie and our growing family. While Maya is still too young to understand what an anniversary is, Calla has no trouble grasping the concept. She can even tell us what she was doing last year on the day that Georgia died. We have also had our digital picture frame playing the slide show from the funeral last year for the last couple of weeks. It has allowed all of us our own private moments to sit and watch some of our favorite times with Georgia. We will now slowly start adding new pictures but plan on keeping the digital photos focused on Georgia so that the girls will continue to have at least some clear memories.

In the end, we know that we did well because we all returned home not just having survived a painful anniversary but having thoroughly enjoyed ourselves. Maya started crying because she didn't want to leave and even last night at supper time asked if we could go back. We have promised the girls the we will take them back some time after Aria arrives. Maya immediately said that she can't wait to take her down the waterslide! : ) Prepare yourself baby! You have a couple of big sisters waiting to show you what life is all about!

While we continue to miss our Georgia Lily every day, we also continue to remember all that she has taught us. In one year we have come a long way and are committed to the idea of living well, always honoring the memory of such a precious life.

Love to you all,

Kristen

Georgia

We brought Georgia home on April 3rd and of course she passed away on April 21st. We wish to thank all of the people that have surrounded us with support and compassion this past year. The journey that we have travelled has not been easy and yet we remain strong. Please do not feel bad for us or take pity on us. I have said it many times before and will continue to say it, Georgia was a gift, a most beautiful and precious gift. It was a priveledge to have carried her for nine months and an honour to have cared for her for another six. As a special someone once told me, "A short life is no less meaningful than a long one." Indeed, Georgia's short life has had a huge impact on so many and we hope that you will continue to remember her.

We won't be here on Wednesday as we are coccooning ourselves once more. We love all of the support but the awkward pauses and pitying looks are just as uncomfortable for us as they are for you. So we are taking off, just the four of us, hoping to have a wonderful family day. I hope that for those of you that have been touched by Georgia's story that you will take a moment to reflect not just on Georgia but also on the many lessons that we can learn from her life and her death.

I have uploaded several pictures tonight that some of you may or may not have seen before. They are all dated last April and I hope will serve as a reminder for all of the joy that one can encounter in the most difficult of circumstances. Enjoy.

Love to you all,

Kristen

PS A few people have asked about the cemetary and the grave is clearly marked. It is back behind the pond and off to the left if you are looking at it.

Choosing a Name

With approximately 6 weeks to go we thought that it was about time to let everyone in on the name we have chosen for our little girl. It was actually a lot harder than we thought. We wanted to make sure that the name ended in 'a' like the other 3, we wanted it to be rather short like the other 3 and we wanted it to have a nice meaning.

We have always loved the name Evangeline and thought that it would be such an appropriate name for our little girl as it means 'bearer of good news'. When we said all four names however, Calla, Maya, Georgia and Evangeline, it just didn't sound right. Someone suggested Evangelina but then it just seemed so much longer than the other 3. If you shorten Evangeline to Eva it means 'life' or to Lena it means 'warrior'. I admit that I love both of these and we did consider these names for quite some time. For whatever reason it still wasn't sitting. I'd look at the ultrasound picture and just know that she wasn't any of these names.

Mike and I went back to our list and then back to the baby name book thinking that perhaps Evangeline would be a middle name. Sometime in January I came across the name Aria. Aria means 'melody or song'. It actually wasn't my favorite name at that point but I did love the meaning. Mike decided immediately that this was the name for our daughter. I still wasn't convinced and kept staring at our list playing with the names and looking at the ultrasound picture.

That was until one night I had a dream that I was walking to school with a happy little toddler. She was about 3 years old and had pig tails in her hair. I knew that we were going to pick up Calla and Maya and that this was the daughter that we have been waiting for. It was such a happy dream and in it I called this little girl Aria. So that settled it.

We are happily awaiting the arrival of Aria Evangeline. Our little 'song of good news'.

It is important to us that Aria understands that we considered her name for a long time and that we have chosen one that reflects how we feel about her. We never want her to believe that she was born as some type of replacement for Georgia or that she was some kind of accident. She is just one more gift that we have been granted and we are starting to get excited about meeting her.

The girls have been calling her Aria for a couple of months now but every once in a while they'll say, "What happens if she's a boy?"

Stay tuned! : )

Love to you all,

Kristen

Mike!

Today is Mike's birthday! He kind of gets the shaft when it comes to this blog. It has become my online journal and tends to focus mostly on the girls and me. I actually do this intentionally as I try to respect his privacy. He does have full access to the blog and will occasionally write or comment as many of you know but he doesn't seem to feel the need to write like I do. I could sit here today and write about what a hard day today was last year or even how we're struggling with our grief today but instead I think that I'll share some of the reasons that the girls and I think that he is fabulous.

Here in the Lucas household we haven't bought a loaf of bread since January. Why? Because my amazing husband jumped on the idea of trying a little bit harder (our new year's resolution) and started baking it. No, he doesn't use a bread maker. He prefers to make a few loaves at a time so that we always have bread when we need it. He has even started making his own 'starter' and makes sour dough. He also makes sourdough pancakes. I know that they don't sound very good but they are actually delicious! He also makes pizza from scratch almost every weekend. : )

Mike is also famous in our family for eating or at least trying just about anything. Remember that old commercial about Mikey? Well that's our Mike! He hates food going to waste.

As a father, Mike spends more time playing with his girls than many men I know. He loves all of the imaginative play and while he does try to keep some of his maculinity, "How about I be a prince?", he will still play the princess when his girls insist.

When Mike found out that we were expecting a girl during our second pregnancy he cried. Not because he wanted a boy, but because he was so thrilled that Calla would get to grow up with a sister. In fact, Mike has never bought into the idea of wanting a boy. He considers each one of our girls a blessing. Wanting a boy has had nothing to do with us having 4 children. Loving family live remains the only reason.

Mike is a brilliant problem solver and an amazingly patient husband and father. He works hard so that I can stay at home and continue to raise our daughters. He never complains about the food that I cook or the toys on the floor. He is trust worthy and unbelievably loyal. He can also be very silly, a side that not many people get to see unless he is with the girls. He makes us laugh pretty much every day. He is gentle and compassionate, kind and loving. We think that he's the best!

Happy Birthday Mike!

Love to you all,

Kristen

18 months

Georgia would have been 18 months old today. Had she not been afflicted with SMA she would have been babbling and toddling around the house... Last year on this day we celebrated her half birthday. Instead of showering us with gifts and food we asked you to find ways to pay it forward. I can't tell you how many emails I received from friends, family and perfect strangers telling me what kind of things that they were doing. One friend decided not to give up volunteering, realizing that he was still needed, others went out to help with the sand bagging because of the rising Red. Some people had garage sales and donated the proceeds. The acts of kindness went on and on, all in the name of one special little girl.

I had promised all of you that we as a family would also pay all of your kindness forward and we have been trying to that. I am very excited to tell you that we have booked a venue for Georgia's Journey of Hope this coming October. It will be on the 3rd from 12:30-4:30 at Glenwood Community Centre. As many of you know this is not an event that we can put on ourselves and will be hoping that many of you will step up once again or for the first time. If you aren't able to help out I am hoping that you will at least write the date down on your calendar and commit to buying some tickets when they become available. The call for volunteers will go out some time in August. Last year, we raised over ten thousand and we are hoping to beat that this year.

The girls and I have also agreed to join in the fundraising to help purchase Dakin a new handicapped accessible vehicle. Dakin's story is one that you can follow by clicking along the right hand side of the screen. The girls will be holding a lemonade stand outside our house with all proceeds being sent to Dakin's family. It looks like most of the other families that have signed up are doing it the weekend of April 23rd-24th. I'm not sure if that date will work for us because our weather is still a bit cool. We will keep you posted.

Love to you all,

Kristen

PS While the birds didn't all leave this winter, they are now back by the dozen. In fact, their chirping woke me up this morning. Couldn't help but smile! Happy Birthday Baby Girl! We love you!

Home!

On Friday April 3rd of last year, we brought Georgia home. Our Palliative Care Team was nothing short of amazing. We were out of the hospital in record time. Many of the nurses, doctors and respiratory therapists had stopped by to say good-bye and as we left many of them stood there watching in shock at the speed of our departure.

Georgie was so happy to be home, as we all were. As many of you know we would hear her laugh the very next day. She had never laughed once in the hospital. Our time at home was precious and full of memories even though it would last less than three weeks. Because Georgia was no longer hooked up to machines and we were able to take her off bi-pap for a couple hours at a time, we had a lot more freedom. This freedom meant snuggling and having picnics on the bed, dancing in the living room with her sisters, relaxing in the swing, and playing in her room. We cherished every minute that we had with our angel with us.

"Home is where the heart is,

Home is where we learn to love." Fred Penner

Wishing you all a great Easter weekend!

Love to you all,

Kristen

No April Fool's

On Wednesday April 1st, the results were finally in. The neurologist's diagnosis was proven correct - Spinal Muscual Atrophy Type 1. What I remember most about the few minutes after being given the news was the look on Georgia's face. As Mike and I tried to compose ourselves while a team of medical experts was getting ready to meet with us, Georgia watched us with a look of utter peace. Mike and I both noticed and asked each other if it were possible to have a six month old baby try to comfort her parents simply with a look. I'm pretty sure that most parents of a child with SMA would say that it happens all of the time.

Approximately, half an hour later the 'team' had been gathered to answer our questions. We had very few. Mike and I were now on a mission to get our baby girl home and were ready for battle. The meeting was tense for a while as we were obviously grieving and there were some issues about how the news had been delivered, but getting Georgia home was our priority and it took the team very little time to realize that we weren't backing down.

I just want everybody to understand that we didn't bring Georgie home to give up on her. On the contrary we wanted to offer her as full a life as we could and we believed that her being at home with her family was the place to do that. The only medical options that we were offered was the idea of intubating her when things got worse and possibly traching her. Georgie's condition was advancing so quickly that we just wanted her to feel loved and enjoy her last days on earth.

Miraculously, with the help of some amazing people we would all be home within 48 hours.

Love to you all,

Kristen

Springtime

The girls are now officially on spring break and the weather is supposed to start warming up today. I am looking forward to having a relaxing yet full week with my girls. This year like every other year, the arrival of spring has brought out Calla's asthma in full force. We were actually contemplating taking her into the the ER last Sunday night (she has my lovely chest cold) but we managed to make it through and her breathing is now much better. She has actually been on her meds daily for a couple of weeks now which is hard for everybody to handle. The Flovent turns our sweet, cautious little girl into one that is full of hyper and aggressive energy. She also has a hard time focusing and making decisions. Mike and I try to be patient with her but it can be very difficult at times. We are now trying to diminish the amount of meds she is on until we can find the right balance. At least with the weather warming up we can send her outside more to burn off some of that excess energy.

Maya, on the other hand, seems to be flourishing this spring. Instead of melt down after melt down I am hearing more laughter from her and she is much easier to reason with. Her spunky personality is starting to shine through again and she makes us laugh pretty much everyday. She currently has a list of all of the things she is going to start doing when she turns four. These include eating tomatoes and mushrooms as well as writing her name. (She can actually write her own name but doesn't think that she should have to until she turns four!) She is going to give her teachers a run for their money one day.

With a growing tummy following us all around, the excitement of another family member is growing. Maya was shouting with delight last night as she counted on her fingers 3 sisters! Both of the girls are thrilled to be welcoming another little sister. Talk of Georgia has only increased as we slowly get ready for our next one. I am very aware that most, if not all of the actual memories Calla and especially Maya have will be replaced with memories of this new little one but we are trying hard to keep Georgie's short life a part of them. This is done mostly through talking and looking at pictures. Maya also carries and sleeps with Georgia's bunny most of the time.

While I thought that March and April would be extremely difficult months we are all doing just fine so far. It's hard to be sad when the sun is shining, the birds are chirping and our kids are happy and healthy for the most part. We are planning on taking off for a couple of days around the 21st but other than that we are just taking it one day at a time.

Love to you all,

Kristen