Home!

On Friday April 3rd of last year, we brought Georgia home. Our Palliative Care Team was nothing short of amazing. We were out of the hospital in record time. Many of the nurses, doctors and respiratory therapists had stopped by to say good-bye and as we left many of them stood there watching in shock at the speed of our departure.

Georgie was so happy to be home, as we all were. As many of you know we would hear her laugh the very next day. She had never laughed once in the hospital. Our time at home was precious and full of memories even though it would last less than three weeks. Because Georgia was no longer hooked up to machines and we were able to take her off bi-pap for a couple hours at a time, we had a lot more freedom. This freedom meant snuggling and having picnics on the bed, dancing in the living room with her sisters, relaxing in the swing, and playing in her room. We cherished every minute that we had with our angel with us.

"Home is where the heart is,

Home is where we learn to love." Fred Penner

Wishing you all a great Easter weekend!

Love to you all,

Kristen

No April Fool's

On Wednesday April 1st, the results were finally in. The neurologist's diagnosis was proven correct - Spinal Muscual Atrophy Type 1. What I remember most about the few minutes after being given the news was the look on Georgia's face. As Mike and I tried to compose ourselves while a team of medical experts was getting ready to meet with us, Georgia watched us with a look of utter peace. Mike and I both noticed and asked each other if it were possible to have a six month old baby try to comfort her parents simply with a look. I'm pretty sure that most parents of a child with SMA would say that it happens all of the time.

Approximately, half an hour later the 'team' had been gathered to answer our questions. We had very few. Mike and I were now on a mission to get our baby girl home and were ready for battle. The meeting was tense for a while as we were obviously grieving and there were some issues about how the news had been delivered, but getting Georgia home was our priority and it took the team very little time to realize that we weren't backing down.

I just want everybody to understand that we didn't bring Georgie home to give up on her. On the contrary we wanted to offer her as full a life as we could and we believed that her being at home with her family was the place to do that. The only medical options that we were offered was the idea of intubating her when things got worse and possibly traching her. Georgie's condition was advancing so quickly that we just wanted her to feel loved and enjoy her last days on earth.

Miraculously, with the help of some amazing people we would all be home within 48 hours.

Love to you all,

Kristen

Springtime

The girls are now officially on spring break and the weather is supposed to start warming up today. I am looking forward to having a relaxing yet full week with my girls. This year like every other year, the arrival of spring has brought out Calla's asthma in full force. We were actually contemplating taking her into the the ER last Sunday night (she has my lovely chest cold) but we managed to make it through and her breathing is now much better. She has actually been on her meds daily for a couple of weeks now which is hard for everybody to handle. The Flovent turns our sweet, cautious little girl into one that is full of hyper and aggressive energy. She also has a hard time focusing and making decisions. Mike and I try to be patient with her but it can be very difficult at times. We are now trying to diminish the amount of meds she is on until we can find the right balance. At least with the weather warming up we can send her outside more to burn off some of that excess energy.

Maya, on the other hand, seems to be flourishing this spring. Instead of melt down after melt down I am hearing more laughter from her and she is much easier to reason with. Her spunky personality is starting to shine through again and she makes us laugh pretty much everyday. She currently has a list of all of the things she is going to start doing when she turns four. These include eating tomatoes and mushrooms as well as writing her name. (She can actually write her own name but doesn't think that she should have to until she turns four!) She is going to give her teachers a run for their money one day.

With a growing tummy following us all around, the excitement of another family member is growing. Maya was shouting with delight last night as she counted on her fingers 3 sisters! Both of the girls are thrilled to be welcoming another little sister. Talk of Georgia has only increased as we slowly get ready for our next one. I am very aware that most, if not all of the actual memories Calla and especially Maya have will be replaced with memories of this new little one but we are trying hard to keep Georgie's short life a part of them. This is done mostly through talking and looking at pictures. Maya also carries and sleeps with Georgia's bunny most of the time.

While I thought that March and April would be extremely difficult months we are all doing just fine so far. It's hard to be sad when the sun is shining, the birds are chirping and our kids are happy and healthy for the most part. We are planning on taking off for a couple of days around the 21st but other than that we are just taking it one day at a time.

Love to you all,

Kristen

Blood

On the Monday, one week into the hospital stay Georgie underwent her last blood draw. The neurologist had showed up late in the day on Friday. He barraged me with questions, examined Georgia and then pronounced his diagnosis, Spinal Muscular Atrophy Type 1. Georgia's life expectancy was between 6 and 8 months. He delivered all of this information as if he was talking about my car needing new brakes or even an oil change. There was absolutely no compassion in his voice or his eyes. I believe that you can learn a lot by looking into somebody's eyes. He then asked me if I had any questions. I had none at that point as I was still using all of my strength to stay standing.

It should be said that there was already a huge part of me that understood that Georgie wasn't getting better. My mother's instinct had been telling me on and off from the time that she was born that I wouldn't get to keep her forever. It was still shocking however to have an expert walk in and tell me that my time with her was down to weeks instead of years.

In the end, the blood was drawn by the pediatric surgeon because we had had enough of all of the tests. My attitude at that point was that if they couldn't make her better than they should just leave her alone and let us take her home. In my mind it didn't matter what they called it. The doctor had the blood drawn on second try. We told them that they had two tries to get it otherwise we weren't interested in the test. We were tired of watching our little girl be tortured with test after test and we couldn't stand the look of terror on her face every time the door opened. We wanted our little girl happy even if that meant losing her.

We would wait ten days for the results... our fates all sealed in a few vials of blood.

Love to you all,

Kristen

Update

It has now been one year since I sent my first email out regarding Georgia's condition. It was in response to an invite for coffee from one of my cousins. I still remember that it was short and sweet, simply stating the Georgie had bronchiolitis and now pneumonia and I wouldn't be able to make it. You know what's sad about that? I still can't remember going out for coffee with my cousin. I'm rather ashamed of that fact. We have to go out in the next couple of weeks Jo. You pick a date and time and I'll make sure that I'm there.

According to Blogger I have written 176 entries since that initial email. In the beginning, it was the responses to my posts that were my therapy but since that time it is the writing itself. That and running have become my outlet to manage the myriad of emotions that I continue to struggle with. Originally I had thought that I would try to write for a year but I now realize that I will continue for much longer than that. Not only does this blog help me to stay sane, it helps me to update friends and family around the world about how we're doing and it has become a piece of me that will be left to the girls one day.

Besides an ugly chest cold that I have been fighting this week we are all doing well. Tomorrow, I will be 30 weeks along and have no health complaints regarding the pregnancy. The baby seems to have flipped and I am now much more comfortable. The mild weather has kept us all busy outside the last few days. Today however, the wind picked up and the temperature dropped. We are expecting snow again but that really isn't much of a surprise around here. I am still hoping to get the seeds started indoors next week. I am trying to make a deal with the baby. I told her that I would plant the garden a week early this year if she promises to stay put. She has not responded however so she may be out there with me! : ) Oh well, despite the trying month ahead this little being continues to remind us that life is full of abundance and hope.

Love to you all,

Kristen

A New Day

Thank you to all of you that sent Calla birthday messages and those of you that sent ideas about teaching charity. Mike and I talked, and Calla has agreed that next year we will ask her friends to bring $10.00, half of which will go to a charity of Calla's choice and half of which will be given to her to pick out a gift on her own. We also liked the allowance idea divided into three jars, 'save, buy and donate'. We'll probably wait one more year on that one so that we can get Maya on board as well. Calla had a great day and seemed quite happy about everything leaving Mike and me to sigh with relief and exhaustion. : )

The sun is shining again today and the girls were out riding their bikes. This has made the beginning of our week that much easier. It was of course on the Monday that I took Georgie into hospital. Her breathing had become so labored that I was starting to feel panicked. The ER team immediately treated her with a mask which seemed to ease her breathing for a while but then it got worse again. A doctor came in to explain to me that she had bronchiolitis and that she was going to be admitted.

I remember that I started to cry in that moment. The doctor looked rather stunned and started to explain to me that it wasn't that serious, babies were admitted all of the time with it and that even her baby boy had spent some time in hospital a few months earlier with the same condition. I remember that I looked over at Georgie and then into her eyes, "You don't understand," I said. "She is going to die" The doctor looked at my poor weak little baby and then looked me in the eyes, one mother to another, and sadly said, "We don't know that."

I still remember exactly what she looks like and what her name is. The reason that I remember her is that she didn't try to patronize or ridicule me. She knew that a mother's instinct was not something to be messed with. She would come up to the PICU just over a week later. Again she just looked me in the eyes, this time not saying a word. We were still waiting on the diagnosis but even she could see that which I had already known.

Love to you all,

Kristen

Happy Birthday Calla!

Dearest Calla,
Six years ago I held you in my arms for the first time in a state of shock. Your full head of 'yellow' hair was quite the sight and your eyes were unbelievably huge. I had no doubt that you were mine however and my heart grew in a way that I never thought possible.

At six years old you love to sit on the couch, cuddle and read stories. I love to read to you and love it even more when you now surprise me by doing the reading.
We love that you still believe in fairies, magic and unicorns.
We love that you are kind and helpful.
We love that you think the Winnipeg winter isn't long enough and are sad to see the snow go! : )
We love watching you skate, swim and swing from the bars at gymnastics.
We love that you are cautious and always stop to grab our hand before crossing the street. We love that you still aren't embarassed by holding our hands.
We love that you always give us hugs and kisses good-bye and good-night.
We love the way that you take each and every new situation in stride with a sense of calm that I find mind blowing.
We love that at six years old you understand that the bonds of love extend beyond what one can see and feel.
We love that despite this last year you are a fun-loving little girl with a huge imagination.
We love that depite our faults you continue to trust and love us with a maturity beyond your years.

Happy Sixth Birthday Calla Wendy! We love you to the moon and back!

Love Mommy, Daddy, Maya and Georgie

The Deal

One year ago today Georgie and I were up early on our way to the hospital for the first set of blood tests. They had tried to get the blood that they needed the day before at the clinic but after a couple of attempts we all decided that it was best to just take her in. The doctor had actually sent me to the wrong place but because it was unusually quiet the nurses set us up in a room and the blood was drawn rather quickly. An x-ray revealed that despite the fact that Georgia was suffering from yet another chest cold her lungs were clear. They told us that the tests would take weeks and to try not to worry. After all, we came from huge families and there was no history of any serious illnesses or diseases.

Despite the reassurances the feelings or dread had started to settle in. That night I looked into Georgie's eyes and I asked her to get better. In the end I was actually begging her to try to be well through the weekend so that we could get through her oldest sister's birthday. I didn't want Calla to have traumatic memories of her special day. I told her that she would have my undivided attention by the end of the weekend. She looked at me and with her eyes told me not to worry. We had a deal.

Love to you all,

Kristen

Some Days

For Melanie,

The snow has been melting slowly but surely around here. Our roads are lakes during the day and skating rinks at night and the early mornings. For many, this time of year is filled with hope of sunny days, warmer weather and new life. In our house we share all of these feelings but springtime is now clouded by dark memories. It was this week a year ago that the doctors first ordered genetic testing suspecting that there was something serious going on with Georgia. Next week will mark her going into the hospital and our lives changing forever. As we approach these anniversaries the roller coaster of emotions takes on even more ups and downs. Throw in some pregnancy hormones and life can get really interesting.

Some days I can jump out of bed with a smile on my face and a feeling of optimism as I think about the day ahead. Some days I can barely crawl into the shower.

Some days I can hop off the treadmill feeling like I can conquer the world, and some days I stagger off feeling more physically and emotionally exhausted than before.

Some days I can feel really good about all that we have done in Georgia's name especially because we are still in the early stages of grieving. Other days all I can feel is guilt that we should be doing more and that we have failed.

Some days I could tell hundreds of people's Georgia's story and talk about SMA until the sun went down. Other days, I just want to pretend that SMA doesn't exist.

Some days I can tackle a list of house chores without looking back and other days a load of laundry seems like a mountain to climb.

Some days I can spend most of the time smiling and laughing. Other days the tears just don't seem to stop.

Some days I can pat myself on the back telling myself that Calla and Maya are doing great. Other days I can't stop worrying about how I have screwed them up.

Some days I can look forward to future plans especially meeting this new baby and other days I can't think beyond the next few minutes.

Some days I can run a dozen errands and other days I start driving and have to remind myself where I'm going.

Some days I can find peace.

So, I forget things sometimes. So, my house isn't always tidy. So, I don't always run on the treadmill. So, I cry a lot. So, I don't always return a phone call immediately. So, I don't always know what to say. So, I like to wear my pjs under my winter gear to walk Calla to school. : ) I do know however that every day I love Georgia and do my best to keep her memory alive. I get up everyday and force myself to keep going even when I don't feel like it. We're not crazy Melanie. We are approaching the anniversary of our daughters' death and we are surviving. Some days we're doing even more than that! Some days I convince myself that that is enough...

Love to you all,

Kristen

Teaching Charity

Calla will be 6 years old in less than two weeks. For the last month we have been discussing her birthday party. The first decision was where to have it. I couldn't really bear to have it at the house this year... too many memories from last year. So we settled on the Y. The next and most challenging decision was deciding on whether or not to do gifts. On this front, I have failed miserably.

While in Portugal the girls had two ponies each, two Littlest Pet Shop Pets each and a ball. They played happily with these toys for hours on end. I should mention that they also had some arts and crafts supplies as well as some books but the playing was done with very few toys. I asked Calla what she wanted for her birthday and initially she listed a couple of ideas. I explained to her that along with Auntie and Uncle we would be happy to get her these things. I then had a long chat with her about different kinds of charities and brought up the idea that perhaps she would like to invite her friends to donate to one of her choosing. Note: I did not use Georgia's death to try to guilt her into this. We discussed all kinds of charities and she was actually very interested in the Humane Society. Calla is a huge animal lover! She was still unsure about this idea and I told her that she could think about it as it was her decision.

Sometime between Portugal and making invitations she decided that she wanted gifts. I have bitten my tongue on the matter and am trying really hard to let it go but am still struggling. My girls have so much! They are surrounded by family and friends that love to shower them with love and 'stuff'. The have more ponies and Littlest Pet Shop that most kids their age. They have dolls, Barbies and stuffies. They have baskets full of arts and crafts supplies.

Mike and I have always tried to show our children how to be generous. We always have the girls donate a toy and food at Christmas time. When they have outgrown some of their clothes and toys we always donate them to others and talk about why this is important. When Calla's school was collecting for the Haiti disaster we not only wrote a cheque but made sure that Calla had some money in her pocket to hand over herself so that she see and feel what it is to give.

I am trying to remind myself that she is still only 5 years old and deserves to have a party like any other child. The one limit I have set is that for every one new thing that Calla gets for her birthday she will have to choose one old one to donate to others. The invites have been sent so it is too late for this year but if any of you have any suggestions about doing a better job of teaching charity please feel free to share.

Our Calla is thriving and we couldn't be more proud of her. We only want to help her to understand that all of these gifts mean very little compared to the joy of celebrating a birthday with people who mean the world to you.

Love to you all,

Kristen