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

Emotions

Well, I said that that was all for tonight but apparently I lied. Now that I have dealt with the last post I feel the urge to write about something else. Something more to do with Georgia and her baby sister that we hope to meet in May.

As news has spread that we are expecting another child we have been met with nothing but excitement and enthusiasm. People have looked at me since we announced that I'm pregnant and tell me that I look happier. When people ask us if we're excited and we don't immediately reply with the appropriate amount of spunk the response is, "Well, everything's fine right?!!"

Now I don't want to make anybody feel bad here. We love that you're excited for us. We love your enthusiasm and optimism...but...while as far as we know 'everything' is fine with this baby, 'EVERYTHING' is not fine. While we feel truly blessed to be expecting our fourth child. She is our fourth child not our third. We have still lost one of our children and continue to feel her absence everyday. There is no moving on here, only moving forward. The happiness that we feel about this baby does not replace the grief of losing Georgie. I think that anyone who is a parent would agree that once they met their child for the first time their lives were altered forever. Well, the same is true of losing one... even when you're expecting another.

This pregnancy has been a roller coaster of emotions. I have the pleasure of watching two of my daughters grow and play everyday and I have another that I get to feel growing stronger everyday. I am hopeful that the life growing within me will bring some healing into our lives, especially Calla and Maya's. All of this however, is tempered by fact that there is one more of my children that I will never watch grow and play again. The pain of knowing this does not go away even as I feel our youngest roll around and kick me.

All that I ask is that if Mike and I don't show the 'appropriate' amount of enthusiasm when you bring up our pregnancy, that you try to remember we really are excited. We are thrilled at the idea of having a fourth daughter. Sometimes however, our excitement doesn't come across too clearly because we are still missing our Georgie and we will continue to miss her long after we have welcomed daughter number 4 into our lives.

Love to you all,

Kristen

Resolutions Con'd

A few people have commented or left questions on the last post so I just thought that I would quickly address some of them. The name of the meat shop where we have found local meat is The Carver's Knife. It's on Regent across from the mall. It doesn't have a huge selection but it serves our needs. It even offers free range, hormone free roasting chickens. The best information that I have found on local eating has been by googling 'local meat' Winnipeg. The 100 mile website for Winnipeg has some great links listing businesses here in the city supporting the effort. The also have information on farms here in Manitoba that deal directly with the public. One of them even invites the whole family to come and check them out.

If you're looking for a little inspiration I highly recommend the documentary Food Inc. I also love the book 'Animal, Vegetable, Miracle' by Barbara Kingsolver. It is a very entertaining and inspiring account of her family's efforts to live locally for one year. She and her husband along with their grown daughter co-wrote the book and they all have something to share from essays to recipes. She is not a purist and offers a very real idea of just how much work and dedication goes into growing your own food. I've recently read it for the second time and am pretty sure that it won't be the last. I now keep it in my kitchen where I can access the recipes quickly.

That's all for tonight.

Love to you all,

Kristen

Resolutions

With the new year comes the idea of resolutions. I don't really ever make them. I think that they are a great idea but I just believe that there are 364 other perfectly good days to start something new. This year however, Mike and I have decided that we should try harder at becoming more responsible human beings when it comes to food choices. Some of our decisions are only an extension of things that we have already been doing but have still lead to some adventuresome shopping.

The first part of our plan is to only buy 'real' food. This means avoiding pre-packaged foods that contain colors and any of those preservatives that one can't pronounce. It also means avoiding products that contain added sugars, corn or soy ingredients that aren't actually corn or soy products. Because of Calla's allergies we already do a lot of this anyway but we're just trying a little bit harder. The other day Maya asked for a granola bar and I told her that we don't have any. I offered to make her muffins or oatmeal bars and she was perfectly content.

The second part of our plan that I thought would be the most difficult was to buy local meat. This actually turned out to be the easiest. Turns out that there is a meat shop not far from here that carries %100 Manitoba beef, poultry and pork products. They also carry local bison and cheeses. Shopping there is easy.

The third and most difficult part of the plan was to choose foods that were locally grown. Now, I am not a purist or a sucker for punishment. It is January and I live in a city that is snow covered for half of the year. I am also pregnant and feeding two small children so by 'local' I had decided to stick to the continent of North America, at least for the winter months. Easy right? After all, California is still on the North American continent. Well... not so much.

Turns out that the Wild Pacific Salmon I have been buying is a product of China. Huh? B.C. is still one of the Canadian provinces isn't it? In fact, frozen products leave me the most baffled. One time I went to buy some frozen carrots only to realize that they had been shipped in from Israel. Carrots from Israel! Manitoba is famous for its carrots and it is one of the easiest vegetables to find on the shelves year round.

Not long ago Calla requested asparagus for supper. I told her that it was out of season but I would check the frozen aisle and see what I could find. I was thrilled to find it until I read that it had been shipped in once again from China! This year I plan on buying tons of it from the Farmer's Market and freezing it myself. Calla absolutely loves it.

It's funny what you can learn as you pay attention to the items getting thrown into your grocery cart. We still have stuff in our pantry that I am not particularly thrilled about but it's all part of the process.

Georgia has taught us to continue moving forward and making the best choices given the circumstances. We continue to embrace this philosophy in all aspects of our lives even if we have a long way to go!

Love to you all,

Kristen

New Year's

We ended up having our neighbors over for dinner last night. The girls had a blast playing with their friends, eating pizza and helping to design the giant cookie that Calla made. We woke up this morning to frigid temperatures, -26 degrees celcius and with the wind chill it was down in the minus forties! We plan on spending our day indoors today. Sigh... At least we spent quite a bit of time outside last week. The girls are currently 'helping' Mike put together a closet organizer upstairs! : ) The girls just love tobogganing so as soon as it warms up we'll be back outside. Walking up and down the hills is also good exercise for the mommy with a growing belly.

As promised here is the picture of the cookie Calla wanted to make for New Year's.



Happy New Year!

Love to you all,

Kristen