The Truck

When a parent receives a terminal diagnosis for their child, you may as well hit them with a truck...literally. All of the air seems to leave your body and you are left disoriented and hurting. The diagnosis is just that however, a word, a prediction of what will probably happen. A parent will most likely take some deep breaths shake off the disorientation and keep moving. Their child needs them and so they step up to the plate.

When your child takes their last breath however the truck hits you again. This time it slams you right in the chest leaving you struggling to breathe and wondering why you would even want to. Your body seems to ache all over and you have a hard time deciphering what is real. Everything seems surreal, as if you are truly walking in a nightmare. You just want to wake up and live happily ever after.

Peeling yourself off of the pavement is no easy task. Oh sure, you can read books about it, talk to experts and even take meds. It still isn't easy. It can take weeks, months even years. There is no timeline. It took me a long time to peel myself up off the pavement, to become a mother and wife again. As the weeks went on, I found myself seeing clearly. Breathing didn't hurt so badly and I knew all of the reasons that I wanted to keep it up.

I have accepted the loss of my daughter. I have learned to smile when I talk about her instead of crying my eyes out. I have found ways to keep her memory alive. I consider myself a better person since losing her but... I still get hit.

You see. Once you have lost a child, you can peel yourself off the pavement but you can't get off the road. The truck just keeps coming. As time goes by, you can start to expect it at certain times and prepare yourself. But there are still days, moments where the air is suddenly sucked right out of your body and your heart aches terribly.

I choose not to avoid the truck. I let it hit me. Sometimes I even welcome it, help it along. It reminds me that I am alive - that I am only a human. While I put on a smile and explore the world with my three surviving daughters, I am forever a mother that has lost a child.

Love to you all,

Kristen

Betty's Hair Raiser

So, in case you didn't already know, my mom is an absolutely incredible person. In conjunction with this year's Georgia's Journey of Hope she is accepting donations to either shave her head, get it into a mohawk or to keep it. All donations go to Families of Spinal Muscular Atrophy Canada and my mom has pledged to do whichever idea raises the most money. We would have liked to shave her hair at the actual fundraiser but she is leaving on a European river cruise for her 40th wedding anniversary a few days later so she is doing it later on in October. Don't worry we'll post all of the pictures!! : ) You can check out all of the details (and donate online) by clicking here.

And, just in case you still don't know how incredible my mom is, she will be baking her famous cinnamon buns. They will be available at the garage sale, September 11th with all proceeds going to Winnipeg Children's Hospital or you can pre-order some and we'll deliver them to you. All of the proceeds from the ordered cinnamon buns will go to Georgia's Journey of Hope. If you're interested please contact either my mom or me.

Just a quick reminder that there is a meeting at my place tomorrow night at 7:00. It won't be very long. Please bring a pen and a piece of paper.

Love to you all,

Kristen

3 months

Well, somehow it's been 3 months since Aria joined us. In those three months she has kept us quite busy and has brought immeasurable joy to our family. I call her my little firecracker as she has quite the personality! She has no trouble letting us know when she needs something and will holler until that need is met. The other day I took a little longer that she would have liked to start feeding her and she let me know. She was yelling at the top of her lungs until she took a few contented sips, even sighed. She then opened her mouth to yell at me one more time, essentially telling me off, before resuming eating contently. : ) If she doesn't want to be put down in her car seat she has already figured out how to plant her feet and arch her back. I think that we are going to be in real trouble when she is a toddler!

Aria also loves to cuddle and she absolutely adores her big sisters. She sleeps most of the night normally getting up once to feed and is packing on the pounds. I'm not sure how much she weighs right now but I'm sure that it has to be at least 14 pounds. She has taken on that rounded baby look that all of my babies have had. Aria enjoys being outside and showing us daily how strong she is becoming. In the picture below she is sitting up on the couch.

Lying down with Calla.

Cuddling with Maya.

Bath time is hilarious around here. Aria loves to kick her legs but also leaves her arms relaxed at her sides. She resembles a true Irish dancer when she gets going! : )

Fast asleep at the local wading pool. I love how portable she is. It has allowed the girls and I to really enjoy being outside this summer!

Thanks to all of you that have picked up ribbons. I was so happy to come back after a couple days away to find my mailbox with only one ribbon. I have filled it up again. Please help yourself and remember to tell others about SMA.

Love to you all,

Kristen

Volunteers Please!

We have been very busy around here getting everything ready for this year's fundraiser. I am thrilled to announce that Funquest has once again agreed to sponsor this year's event which means bouncers and of course cotton candy! The event will be very similar to last year, just at a slightly bigger location. If you have any suggestions about things to add please feel free to share your ideas. I am in need of volunteers again as well. There will be a meeting at my place on September 1st at 7:00. If you can't make the meeting but are still interested in helping out please contact me.

We have sent out close to 200 letters requesting prizes. If you or your company would like to make a donation please let us know. You will also be able to download the letter requesting prizes in the next day or two from the site.

For all of the SMA families we are working on setting up a collage of all of the little angels and warriors out there. Please email tanyafrancis@shaw.ca if you would like your child's picture to be included. You may also include a sentence or two about your child that will be added to the image.

Also, my mom is donating all of her profits from Norwex sales this summer to FSMAC. If you are running low on anything please call her before the end of summer. She is also working on another little project that some of you will be interested in. It has to do with head shaving... : ) Stay tuned for more details.

Love to you all,

Kristen

The Promise

To Georgia,

"In those last few moments, I held you tight and apologized that I could not save you. I sang to you and asked you to stay even though I knew that our parting was within minutes. I promised you that I would never forget you or stop loving you. I promised that I would never let others forget about you or about this awful disease that was robbing you of your ability to breathe. I told you that I would fight to see SPINAL MUSCULAR ATROPHY cured so that others would not have to live the same fate.

The world of SMA is devastating, heart-wrenching and exhausting. It robs families not just of their children but can also rob them of their hope and optimism. On any given day, I can feel none, one or all of these feelings. I still have moments where I want to hide under the covers and not get up. I want to pretend that SMA doesn't exist. But...there you are.

I see your face not just in my memories but all over our home. I hear your laugh in the baby sister that is helping to heal this family. I see your pain in the faces of so many other little warriors. I can still feel your little hand in mine and the way your head would lay in my arms, so different from your sisters'. My promise to you will never be forgotten. You will remain a part of our lives for as long as my heart continues to beat.

I have come to realize that I cannot keep my promise alone. Last year hundreds of people helped to take the first step. I am hopeful that once again this year a community will come together. They will come because they remember you. They will come to celebrate your second birthday and have fun. They will come because they too have suffered a loss or know someone that has. They will come because your story has touched their lives. They will come because they don't just believe in a cure, they believe in HOPE."

Join me on October 3rd for the second annual Georgia's Journey of Hope. Help me to keep my promise.

Love to you all,

Kristen

Want to help? Letters are now available requesting prizes. Volunteers will be needed. Please contact me if you are interested. Ivory ribbons will be available in my mailbox starting next week until October 3rd.

No Regrets

I happen to be lucky enough to live in a country that allows a parent to be off of work for up to a year, collect E.I. and return to the same position when that child is turning one. That is...if you have been working and contributing for the year previously. I obviously was not working and am not taking any kind of leave from any type of employment since the arrival of Aria. Mike, on the other hand, has been working and is entitled to taking a parental leave. Leaving his position however and the whole family living off of E.I. is a little bit scary but we have decided to bite the bullet and put our family first.

Since Georgia became sick I always try to make decisions that I am sure I won't regret in the long run. Mike seems to have taken on this same attitude as he is about to start a two month leave from work. This will allow us to spend the rest of the summer together, get the girls into school and pull off the fundraiser. We will also celebrate Georgie's second birthday and Thanksgiving before he returns.

We will be living off of some savings and the E.I. Things will be a little bit tight around here but we are all so excited. In fact, the countdown has been on for quite some time. Friday is his last day and Calla and Maya will both tell you that Daddy is going to be home for almost one hundred days!!

While we are a little bit nervous about the finances Mike and I have both had a good laugh when we ask ourselves that when our daughters walk down the aisle one day will we regret this time? Will we sit back and say, "Wow! This wedding is way too expensive. You really should have worked those two months!" I seriously doubt it.

Aria will only be this little once. Calla will only start grade one once and Maya will only be 4 years old once.

Living without regrets means taking a chance sometimes and we can't wait to have ours...TOGETHER!

Love to you all,

Kristen

Raising Awareness

I tried to do this on Facebook but it didn't work. It will now get there by default.

Please help me to raise awareness by posting or emailing the following information.

Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

SMA is one of the most prevalent genetic disorders. One in every 6,000 babies is born with SMA. SMA can strike anyone of any age, race or gender.One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA. 7.5 million Americans are carriers.

SMA Patients are classified into four types based on milestones achieved at onset of SMA. Type I and II are the most prevalent. Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I cannot sit without support. --THIS IS THE TYPE that Georgia had.

With each pregnancy Mike and I have there is a 25% chance that our baby will be affected. Calla, Maya and Aria are all healthy (Thank God) but they too may be carriers. We have lost one child and while we will probably never have any more children we continue to work towards a cure in honor of Georgia and all of the other warriors and angels out there.

August is SMA awareness month. Please consider wearing an ivory ribbon. The color is representative of the innocence and purity of SMA's victims.

Cure SMA

Six Years Old

Well, the blog has been sort of ignored the last few weeks. Calla just finished two weeks of daily swimming lessons that seemed to somehow eat up any time I had. It was worth it in the end however as she started out being scared to put her face in the water and ended up swimming like a fish! She now likes to try and sit on the bottom. : ) She has been showing off her skills at the local wading pool and the beach.

I have been thinking that six years old must be pretty tough. There are so many new skills to be learned and experiences to live. Since Calla turned six she has really started to read. She has also started to ride her bike and now she is actually swimming. Can you imagine if we all tried to seriously learn 3 new skills in half a year. Think about how accomplished we'd all be?!

Did I mention that she also started skating over the winter and is now doing basic math. She has also learned how to do a pretty good cartwheel! In another month she'll be off everyday from 8:30 until 3:30 at school (I am hoping to have her home for lunch). I find it amazing to watch how much Calla is learning every day.

On another note August is SMA awareness month. I tell people regularly all about Georgia and what SMA is. As we approach Georgia's birthday I am going to throw out a challenge to all of my Winnipeg friends and family but right now I am asking anybody who reads this to make a commitment to telling two people about SMA - two people that don't already know.

You could also wear an ivory ribbon. Why ivory? The color represents innocence and purity. If you wear one people will automatically ask what it stands for. I figure that if we all went at the task of raising awareness about SMA the way a six year old approaches life, before we knew it there would be no one left to tell.

Love to you all,

Kristen

The Weight of Aria

Once, not so long ago I wrote about how I missed the weight of Georgia. A new mother knows exactly what I am talking about. You carry around this extra weight in your midsection for nine months and then you carry around that weight in your arms for the next several years. Recently, a friend asked me if I felt like I had the weight back. It took me a minute to realize what she was referring to and then I was surprised by my answer. 'Yes.'

Aria is now about twelve pounds. She, in no way replaces Georgia but rather, continually reminds us of the lessons that Georgie taught. At two months of age, Aria now sees her spirit friends on a regular basis. Calla and Maya have actually noticed this on their own. "What is she looking at mom? and "Why is she looking like that?" are frequent questions lately. My answer is always simple, "Her spirit friends of course." We can't see them but she obviously see something that makes her happy. I take comfort in the fact that she sees them in different places but most often in my room. Calla and Maya have asked if she can see Georgie and I always say that I think she can. This seems to bring comfort to Calla and Maya too.

Aria has also discovered her hands and her tongue. She is constantly gnawing on her fists or sticking out her tongue. I try to smile and play with her when she is sticking out her tongue but there is always a sick feeling in my stomach. For those of you not familiar with the symptoms of SMA, one of them is the rippling of the tongue. Mike and I have both admitted that we sometimes stare at Aria's tongue half expecting to see the rippling even though we know that she is fine.

How do we know that she is fine? Well, she holds her head and her back up to look around constantly. When I try to burp her against my chest she plants her feet down and stands up! She is constantly kicking and trying to roll over. Of course, she has a super loud cry which like I said actually makes me laugh.

At twelve pounds Aria has grounded me. She reminds me of the beauty and hope that exists in the world. She reminds me that life is worth living and taking risks is a part of living. She makes me smile and laugh and keeps me so busy that sometimes I can't remember the last time that I sat down. She loves to cuddle and forces me to carry her often. The weight of Aria doesn't replace the weight of Georgia but her weight is exactly what I need right now.

Love to you all,

Kristen

The Sound of Life

When a baby is born we all wait to hear that famous first cry that tells us that s/he is alive and breathing. When Calla was born we were relieved to hear that first cry but within a few days I would start to dread it. Calla was by many accounts one of the most colicky babies most people had ever met. There was no rhyme or reason to her crying, she basically just cried around the clock. She would have about 3 twenty minute naps during the day and the rest of the time was spent with me trying to keep her from crying. Once she started crying she could go on for an hour or two at a time. It was exhausting. This went on for several months before she settled and eventually became one of the most calm toddlers anyone had ever met. I guess that she had gotten it all out of her system early! : )

Maya was a calmer baby who still cried but was much more easy to settle. Georgia was born with a strong cry but within a few weeks it would get weaker and weaker. I remember one day she was asleep in her car seat at Maya's drop in class and started to cry. I couldn't hear her but I could see her from where I was standing. I felt awful, not knowing how long she had been upset. I never dreaded hearing Georgia's cry because she was easily settled most of the time and it was such a soft sound. By the time she was three months, I swear that she understood half of what I said to her and would often wait patiently to be fed or picked up.

It sounds awful but I do find myself smiling and almost laughing sometimes when I hear Aria cry. It's not that I like her to be upset, but hearing how loud she can get and watching her kick and try to roll around is amazing! She is so strong and she is also easily settled. When she is kicking up a fit to be fed I remind myself to be grateful.

The night before Georgia died she had more breath than she'd had in weeks. She was cooing and trying to sing that night. Sadly, I had almost forgotten the sound of her voice. In the moment just before she took her last breath she cried out. It wasn't very loud but I knew that it took every last bit of her energy. It wasn't a painful cry, more like a cry of relief...or at least I like to think of it that way. Ironically, it was the first and last sound of her life.

So now when I hear Aria bellowing it out I remind myself that what I am hearing is the sound of life, music to my ears. : )

Love to you all,

Kristen