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