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

Maya's Song

Healing after a loss can take a short while or it can take a whole lifetime. When I consider the loss of Georgia I know that healing for me will take a lifetime, but what about the girls? I often wonder how much they will remember about their baby sister. Will they feel her absence for the rest of their lives the way that I will? While I want them to always know about Georgia and honor her memory, I definitely hope that they will heal.

So the other day when I heard Maya singing I couldn't help but smile. Calla's friend had just arrived and was very interested in Aria. She had all kinds of questions that the girls were more than willing to answer. All of a sudden Maya broke into song, her arms open wide and twirled around the living room. Her song was about how Aria was her new baby sister and that she was going to stay with her forever. She sang about how she doesn't like doctors and hospitals and how Aria will stay at home with her. She sang about how Georgie got sick and died. And then at the very end, she sang about how she loved both Aria and Georgia.

If I had known that she would sing that song ahead of time I would have recorded it but instead I am writing about it and hoping that I never forget. My children are healing. In fact, my girls are truly amazing... all four of them!

Love to you all,

Kristen

The World of SMA

In the world of SMA there are huge celebrations and far too many farewells. One of the most exciting things that happened this week is that Lucy Zahn (SMA 1) turned one. Yay Lucy!! Lucy's mom Barb and several relatives and friends all shaved their heads to make money for SMA and mark this momentous day. I should tell you that Barb had beautiful thick dark long hair but looks even more beautiful now that she has it shaved. Her selfless determination to save her daughter only shines through that much more. Your courage is inspiring Barb!

In Toronto the Rebecca Run went on. It takes place in New Market Ontario and this year our friend Emersyn Klomp was honored. Emersyn and Georgie would have been the same age. Their birth and angel dates are within weeks of each other. All money raised is donated to Families of Spinal Muscular Atrophy Canada. The Rebecca Run has become so popular that it now sells out! One day we'll all walk together Melanie!

And, then there are the farewells. On Friday right here in Winnipeg a baby girl was laid to rest. Josie was only a month old when she passed away from SMA. For those of you that are on Facebook we all know and are saddened by the passing of Xavier. Xavier had just turned 4 - a miracle in itself!! Two days later, on Thursday he had a plug that couldn't be cleared. My heart aches for these families and it saddens me to continually hear about all of these children dying.

And so... we continue on, not just to honor our Georgie but so many of these kids. Plans are now in the works for Georgia's Journey of Hope 2010. This is a heads up and a reminder for all of our friends and family here in Winnipeg. It will take place on Sunday October 3rd from 12:30-4:30 in the afternoon. I will once again be putting out a call for volunteers late in August. It will be a family fun event with bouncers and face painting of course. I am hoping that our famous balloon animal gal Kristen will be attending otherwise someone is going to have to take a course!! : ) There will also be food and drinks. Tickets will be available in September. Please help us to spread the word not just about the event but about SMA.

Love to you all,

Kristen

6 Weeks

The last six weeks have flown by for me despite the fact that I have been battling thrush for much of it. I am happy to say that the meds finally seem to be kicking in and I am more comfortable every day. Aria continues to grow like a weed. Many of the little sleepers and outfits that she originally wore no longer fit. She is now smiling and cooing and tries to watch me when I walk around in a room. She is also amazingly strong. She holds her head up to look around and loves to plant her feet down so that she can push up into standing. Calla and Maya remain enamoured with their little sister as you can see in the picture below.

Mike has taken the girls to the beach a couple of times this year. I haven't made it yet because it has been super hot and anywhere there is shade there are mosquitos. It kind of sucks for a newborn.

Here is Aria in one of her pretty little outfits. I just love ladybugs!

This is Calla riding a pony on her field trip to the farm. Mike took the day off and joined them.

Here are a couple of shots from the littlest big girl's birthday. She decorated her own crown and wanted a princess birthday cake. Belle is her favorite.

Love to you all,

Kristen

Missing

This week has been a roller coaster of emotions for me. Last weekend we of course celebrated Maya's fourth birthday. We had a small party for her on Saturday with a few of her little friends. It went really well and we were even able to get outside this year - first time since she turned one.

On Tuesday we celebrated Calla finishing up kindergarten. It was quite obvious that the teacher and the kids had all worked really hard into making a special presentation for all of us. There were songs, a couple of poems and a slide presentation followed by snacks of course. Calla has really come out of her shell this year and we couldn't be happier with her development. She is already looking forward to grade one.

The roller coaster of course comes into play when I stop and look around and feel the absence. All of these big days and celebrations I feel like something is missing. It's almost like a sense of panic when you think that you have forgotten something. Of course, I haven't forgotten anything. I am just always aware that Georgie is missing. She should have been running around getting into trouble at the party and we should have been trying to keep her quiet at Calla's celebration. Not to be. It really hits home when I look at pictures and see how much the girls have changed and grown. Georgie will remain 6 months forever.

Do you know that I never sent in a family picture to Calla's class this year as requested by her teacher? I had in fact forgotten at the beginning of the year but when I went in to volunteer I saw the wall where several photos of happy families were hanging and I remembered. Many of them were obviously taken during the summer holidays and all of them were full of joy. A family picture?? The last one we had taken was by the NILMDTS photographer and while I consider it absolutely beautiful I felt funny about sending it in. So...I didn't and funnily enough Calla never asked me to. Maybe she was just confused as me about a family picture.

How do I take a family picture really? If I wanted to take a picture of all four of my girls I could give one of them a picture of Georgie and have them hold it or I could line Calla, Maya and Aria up next to Georgie's headstone. I actually don't mind that idea but others would probably find it weird.

I don't even know how to sign the thank you cards I have been handing to people on behalf of gifts for Aria. Do I sign Georgie's name too? I wasn't but now I feel guilty. It is hard to reconcile with the idea that she will always be missing from every major event that we celebrate as a family. Fourteen months, one week and two days after losing Georgia and I miss her now as much as the day that she took her last breath.

Missing you running around at the beach today Georgie,

Love to you all,

Kristen

4 Years Old!

Dear Maya,

Four years ago your daddy's hands guided you into this world and we met you for the first time. I remember how when they later placed you in the bassinette next to my bed you rolled right onto your side so that you could still see me! I remember how you had a tuft of dark red hair at the top of your head and how later on it grew into a perfect mohawk! : ) By the time you were six months old you would sit at the dinner table with us and try to make us laugh. Even as a baby you were trying to make the people around you happy.

We love that at 4 you love to dance. When you are happy, you will sing and dance around our house making us all want to join in with you.

We love that at 4 your excitement about life is contagious. I watched you skip all the way to a friend's house the other day and couldn't stop smiling.

We love that you are kind and sweet.

We love that you are determined and stubborn.

We love that you are the little sister and the big sister.

We love that your outfits of choice are usually bathing suits - even when its -30 outside!

We love that you think that Grand Forks is the greatest place on earth!

We love that you are smart and independent even when it's frustrating for us parents.

We love your innocence and your wisdom.

We love watching you change and grow.

Maya, you are the spark in this family. The one that keeps us all on our toes, making us laugh along the way. We love you to the moon and back!

Happy 4th Birthday to the Littlest Big Girl!

Love Mommy and Daddy