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

Voting

Well, tonight, thank God it's them instead of you.

Since losing Georgie I have grown to hate the above lyric. It is of course a famous line from the song, 'Do They Know It's Christmas?' by BandAid. Despite the fact that Bono is actually the person who sings that particular line I can't even get myself to like it a little bit.

When Georgia died I was acutely aware that the people around me and those that had just heard about us were counting their blessings. That's great. In fact, I was still doing the same thing. While I did have moments of "why me?", I remembered Randy Pausch's question of "why not me?" I am no more special than anyone else and while it pains me to say it my children are no more special than anyone else's... except to me and the people that love them. Not once did I ever or would I ever wish SMA or the loss of a child on someone else.

When I received the phone call not so long ago from the genetic counsellor telling us that this baby girl did not have SMA I was relieved to say the least. In fact, in many ways I was ecstatic. After hanging up however I started to wonder if I was her last call of the day. Had she delivered bad news to another family just before calling me? While I was totally grateful for the good news that I had received I felt sick at the idea that somebody else could be receiving the most awful news a parent could ever get. You won't catch me thanking God that it's somebody else because I don't want it to be anybody else.

That's why it's so important to me that the Gwendolyn Strong Foundation wins 1 million dollars. Curing SMA means that it won't ever have to be anybody else. You see despite losing Georgia I can still imagine a world where Gwendolyn Strong one day walks down the aisle on the arm of her father. I can imagine a world where Daikin has enough lung capacity to become an Olympic Athlete or a World Class Diver. I can imagine Nicholas growing to be bigger and stronger than his mother, one day picking her up and thanking her for not giving up. What would these children tell us? What could they teach us? We'll never know unless we choose to hope and believe in the possibility of another reality. I can imagine it. Can you?

Join us in voting for the Gwendolyn Strong Foundation to win 1 million dollars. Here are some of the ways that you can help.

1. VOTE: go to http://VoteForSMA.com
2. Email friends the voting link
3. Post the voting link to your Facebook status all week long
4. Blog about GSF and the $1M miracle to cure SMA
5. Twitter the voting link
BE ANNOYING (we mean persistent:) ALL WEEK LONG!

If any of you are still actually wondering why this is so important please take the time to watch this video the Strongs have put together. Actually, I encourage all of you to click on the above link and look into the eyes of so many little ones like Gwendolyn and even our Georgia and remind yourselves to be grateful.

Voting begins tonight at midnight.

Love to you all,

Kristen

Facebook

Well, this morning I did something that I have been considering for a long time. I finally set myself up with a Facebook account. I've had lots of reasons/excuses not to do it until today but now there is something more important than my excuses. The Gwendolyn Strong Foundation has a chance to win 1 million dollars and they are pledging to have that money sent to the research that Dr. Keirstead is doing on SMA. 1 million dollars is a lot of money and they have a real chance at winning. They have already won 25 thousand dollars and are now in the finals. Here is some of what they have posted recently:

"We are extremely humbled that the Gwendolyn Strong Foundation (GSF) was voted by its supporters in December 2009 as one of the top 100 nonprofits out of more than 500,000 organizations in the first round of the $5M Chase Community Giving campaign on Facebook. That accomplishment would have never been possible without the passionate dedication of each and every one of us collectively working hard to get the word out about the importance of the campaign and tirelessly asking our family, friends, neighbors, and colleagues to vote for GSF. To each and every one of you and them, thank you. Together, we made it happen!

For our first round accomplishment we received a $25,000 grant from JP Morgan Chase. We promised 100% of that to Dr. Hans Keirstead's promising stem cell program at the University of California, Irvine and we proudly sent a $25,000 check directly to Dr. Keirstead's lab within days of learning we won."

On Friday the voting will begin and I will post more information on how all of you can help us. I will also be sending out emails to remind you about our cause and hoping that all of you Facebookers will vote to make it happen. I am hoping that you will forward on my email as well as post the information on your Facebook pages. Two minutes could make all the difference. Stay tuned!

On another note, if I don't seem to be doing things right on Facebook please be patient. The truth is I have no idea what I'm doing yet and don't even have a picture posted. I promise to get it all sorted... that or Mike, my very computer savvy husband will! : )

Love to you all,

Kristen

PS Bill and Victoria, hope you don't mind me quoting you guys!

Anxiety

I had thought that I would have been working by now. So far despite being a registered substitute teacher I have yet to put in a day. My reason for staying home however is amazingly important. Back at the end of September, maybe the beginning of October, our Maya started to act extremely anxious. She had started coming to our bed in the middle of the night right after Georgia died but then she started to wake up and throw tantrums around 1:00 and 2:00 in the morning. There was often very little that we could do to calm her down. Once she was up she could be up for a couple of hours. This made things quite difficult and tiring around here.

She also started to cry when I dropped her off at school and even stopped falling asleep until late the night before school. She also started complaining of stomach aches all of the time. One day I finally asked her if it felt like butterflies in her tummy and she replied in the affirmative. My once happy and self confident little girl had changed. She was now suffering from anxiety. I had been preparing myself for this since my days in the PICU but it still didn't stop my heart from breaking.

You see almost 10 months ago Maya's life changed in a profound way. One day her mother and sister were with her 24 hours a day and the next they had disappeared. She was told that we were in the hospital but she was two years old. All that she would understand was that we had left her.

The morning that I walked into the hospital with Georgia I had a feeling that my life was changing forever. There was never any question that I would be the one to stay with her, even as I recited bedtime stories to Calla and Maya over the phone before hanging up and crying. Calla had some understanding because when she had been taken into the hospital with asthma in the past I always stayed with her. I could explain to her that I would stay with whichever of my children needed me most. Maya was just too young to understand this.

I remember one night rocking Georgia knowing that there would be consequences to my actions. I swore right then and there that I would spend the rest of my life making it up to Calla and Maya but first I had to make things right with Georgia.

Eventually, Georgia and I made it home but Georgia died a short time later and Maya was left with a wreck for a mother. As time has moved forward I no longer consider myself a wreck and I remember that night rocking Georgia to sleep and my promise to my girls. So now I must be the rock. Working isn't an option right now because Maya needs to know that I am here for her always. She wakes up and I'm here. She eats three meals a day with me. I take her to school, gymnastics, swimming and dance. I kiss her good night every night. We make muffins and do crafts together. She is my shadow and I will be hers until she is ready to say otherwise.

Recently I read the book 'My Sister's Keeper' by Jodi Picoult. Yes, the one that they made into a movie. What fascinated me most about the story was not the relationship between the sisters but the relationship between the mother and her two healthy children. I sympathized with the kids and at times I hated the mother even though I understood why she made some of the decisions that she did.

One day as an adult Maya will probably sit down with a therapist and discuss all of the ways her mother ruined her life. All that I'll be able to tell her is that I did my best in an impossible situation. I loved and continue to love her just as much as I love Calla and Georgia but I wanted them all to live. I pray that Maya will never need me in the same way that Georgia did even though I understand that she needs me just as much.

On a positive note Mike and I have started to see that 'spark' again. We actually see it in both of our girls. Calla has started to become a little more animated and excited about life and Maya... let's just say that she's sleeping through the night in her own bed. : ) We'll take whatever we can get!

Love to you all,

Kristen