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

Father's Day

Truthfully, I am too tired to post much of anything today but I wanted to wish everyone a Happy Father's Day. I am so blessed to have an amazing father, father in-law and the best dad for my kids. Mike is hoping to take the girls to the beach today if the weather holds. Later we'll go and join my mom and dad for dinner. Mike's dad is currently up in the North West Territories on holiday so we won't be seeing him today but hopefully later this summer.

Love to you all,

Kristen

P.S. Well we didn't make it to the beach as Maya had a tummy ache in the morning, but we ended up playing on the neighbours' fabulous slip 'n slide all afternoon. Fun! Here are some videos of the girls wishing my dad a Happy Father's Day while sliding. - Mike

The Color Purple

Purple has never been my favorite color even though I quite like it. Calla and Maya both claim it to be their favorite so I decided to do Aria's room in that color. It's beautiful and I love it! I can't say however, that I am loving the color very much these days. If you are squeamish or uncomfortable with the idea of breastfeeding please stop reading this post. If you want a bit of a laugh at my expense, read on!

With Calla, Maya and Georgia I was never able to nurse them for very long. The main underlying problem was that I actually made too much milk. Believe it or not, making too much milk causes just as many problems as not making enough. In my case, it lead to constant engorgement, difficulty latching, leaking, plugged ducts, thrush and mastitis. I did seek help from lactation consultants with all three girls and in the end all of them had no idea how to help me. With Aria I decided that I would feed her for at least two weeks and then if it was going downhill I would stop.

Surprisingly, I didn't become engorged this time and for the first time in my life I was able to nurse my baby totally pain free. That was until THRUSH came into my life. I wasn't surprised that I got it as I had antibiotics during labor which is considered to be one of the main causes. For those of you that don't know thrush causes burning, and shooting pains . Not fun!

I immediately started treating myself with gentian violet. Oh yes, there is nothing like painting your nipples purple and having a baby with a purple mouth to boost a new mother's spirits! : ) Add that to the pain and sleep deprivation and it can be pretty discouraging. I should also mention that it's extremely messy and stains everything it touches including your skin. Luckily I had my little cheer leader Maya who happened to think that purple nipples and a purple mouth are beautiful. She even went over the the neighbor's one day and declared, "My mommy paints her nipples!" Thank goodness my neighbor knew what was going on and is a very open minded person.

Unfortunately, the gentian violet didn't work. This lead to a trip to the Walk In whereby I was prescribed something that is now considered 'ineffective' in the case of thrush, followed by a melt down at the pharmacy and another at home. Thanks to a fabulous friend and public health nurse I now have something much stronger that I am optimistic about. We have also been able to put away the purple stuff and feel a little more comfortable venturing out in public again.

So... we are still nursing and will continue until the we are done with the meds. But like I said I am not loving purple very much these days.

For those of you wondering, Aria has been unaffected by the thrush thus far and is packing on the pounds. She now weighs around 9lbs. That's almost two pounds since birth. She is a content baby for the most part and is just starting to wake up into this world. We are enjoying every moment with her.

Love to you all,

Kristen

Pictures!!

On Sunday our very kind and generous friend Tanya came over to take some new born shots of Aria. Now Aria wasn't exactly cooperative and yet somehow Tanya has taken some beautiful pictures that we will get to treasure. Please click on Tanya Lynn's link on the right hand side if you'd like to see them. EDIT: here is a direct link to the pictures that will always work (Tanya updates her blog pretty often so Aria's pictures may move off the home page soon)

Thank you so much Tanya!

Love to you all,

Kristen