Where to begin? You’re turning 9 today. Nine! I first held you in my arms 108 months ago and I was just thankful you were alive. Your mom and I hardly dared to look too far in the future at that point. We knew you had a rough road ahead — multiple heart surgeries, scary odds — it was best to take things one day at a time. Since then those days have really flown by.

Of course you taught us to look forward to a hopeful future eventually. Little did we know it would be filled with so many pleasant surprises. I just went through the last year of photos (and added a ton of them to your photo section). Simply put, you never cease to amaze us.

Your sense of wonder and hunger for knowledge is insatiable. We delight in each challenge you overcome and problem you solve. You manage to exhibit something weekly to stop us in our tracks (in a good way). Whether it’s your innate sense of kindness to others (especially those in need), your defiance of some parental ruling you disagree with or just your ability to smile and laugh through anything — you inspire us.

We have a busy weekend ahead. You’re having the “spa birthday party” you requested with a few friends today after school. On Saturday you’ll lead Team Matilda once again at the 2011 Twin Cities Start! Heart Walk.

Here’s wishing you the best birthday yet. Thank you for being the greatest gift we’ve ever received.

Tillie and Lucy recorded their annual Christmas song, “Santa Claus is Coming to Town.” You can listen below:

Our family Christmas video is up too. Here’s wishing everyone a very merry Christmas and a fantastic new year!

8 years ago today, our strong, beautiful daughter Matilda was born. 8 years. Wow! Where does the time go?

This past year has proven to be a positive and very eventful one for Tillie. She’s not only gotten smarter and wiser in school, she’s also grown so much. She’s decided to let her hair grown long, loves to put together her own outfits, and reads chapter books and pretty much anything nonstop! She is vibrant and energetic, too. She is always busy- from cooking with me and helping tend her garden to playing outside and giving her sister lots of (unsolicited) advice. She has recently started wearing glasses for astigmatism and now looks oh so studious. She has matured into a lovely young lady who finds happiness and excitement in each new day!

As the school year winds down, we look forward to more family bonding this summer. Tillie will attend her second year at Camp Odayin, a day camp for kids with heart disease. Watching her play and form friendships with other kids with special hearts is amazing and something we had always hoped she would be able to do. She plans on mastering her bike without training wheels this summer and tackling every set of monkey bars in the east metro area.

These next few days Tillie has special plans to celebrate her birthday in style. She will be getting her ears pierced, eating at her favorite restaurants, taking a few close friends to the salon for manicures, and celebrating being a heart disease survivor at the AHA’s Heart Walk in Minneapolis.

Tillie doesn’t let having a “special heart” hold her back and embraces life to the fullest! She never ceases to amaze us. She’s given us hope and happiness, and on her special day, we are honored to celebrate her amazing life!

I just added over a year’s worth of photos to the new and improved photo section. It should be much easier to browse and view. Most importantly, the new system makes adding new photos and galleries a piece of cake. Things should be up-to-date from now on. Fingers crossed.

Have a very Merry Christmas, everyone!

Merry Christmas everyone. Read our 2009 family update to find out what we’ve been up to lately.

I cannot believe that 7 years ago today my beautiful daughter was born. Where does the time go? It seems like only yesterday that I was anxiously awaiting her arrival, wondering what was to come. Although I could not have imagined what our journey would entail-  3 heart surgeries, various other procedures, and lots of visits to cardiologists and doctors, I am humbled and eternally grateful to have a healthy 7 year old to cherish each day. I am the Mom to an amazingly strong (and strong-willed), funny, smart, loving human being. It’s true when women say there is nothing more incredible than being a mother- it’s truly the thing I am most proud of.

Tillie is now wrapping up her school year, a few more days to go. It’s been one that has allowed her to not only grow in confidence but has also given her the knowledge to read and write and love everything about learning. As a teacher, I am so pleased to witness the thrill of each discovery she makes.

In hindsight, we never really thought that we’d be here right now, celebrating our daughter with a special heart and having a relatively normal life. Who knew that Tillie’s birthday would provide a gift to us as well? Each year is a blessing-and every time we see her doctors, we are again reminded of how remarkable Tillie’s progress and success are. She is starting to realize more and more how unique and amazing she is- that her heart is different than others and that her story is special. She’s so accepting of those around her and has an innate goodness. In a nutshell, she has touched so many people with her story and some times, just by her presence. She’s a reminder to me to treasure each day because life is truly precious!

I am looking forward to our summer together- hanging with Tillie and Lucy- doing the Mom thing at home, the zoo, the park, or anywhere we choose to venture. This is one journey that I am honored to be on.

All the details are at our team website.

UPDATE: Thanks so much to everyone who donated!

She questions everything and we think that now that she knows more and more about what was done to her and what she went through, it causes her stress. She cannot verbally express it that well. I personally think that she just needed a chance to grow and mature more and be reminded of the importance of these appointments. To wrap up the summer appointment, we ended up leaving the office with little accomplished but did squeeze in an EKG at the beginning. Her doc said those results looked good and that we would finish up the echocardiogram in January. He assured her that no one at the clinic has anything that hurts or would cause pain and wanted her to be ready in January. We reminded her of this and that at her next appointment, certain things would be done to check on her special heart and that they had to be done to keep her healthy. She agreed and we let it go.

So, that brings us to now. Tillie blew me away when we walked into the clinic. First of all, she’s a bit of a little celebrity there- being on the cover of the Children’s Hospital Magazine a few years back and more recently in the brochure for the new Cardiovascular Center that Children’s was raising corporate funds for. Most nurses know her or recognize her, as do a lot of the other cardiologists. They always pop in to say hello. As her Mom, it’s rather cool- to show her off and show them what great work is done there and how she’s developed normally. She’s truly a success story and gives hope to many with congenital heart defects.

When the nurse took her blood pressure and pulse ox, she was chatty and happy. Her sats (the amount of oxygen in her blood) were at a wonderful 98. Most of us are at 100, but her levels were always in the lower 80’s until she had her fenestration closed two years ago. She weighed in at a healthy 48 lbs. and has remained in teh 50% percentile since birth- pretty great for a child with a severe heart defect! When Dr. Baker came in she was a bit shy, but so happy to tell him that her tooth was loose and that she loved kindergarten. When he examined her, she was agreeable, chatted freely, and even laid down on the table (this was a huge step for her as she is very nervous doing this!). She sounded great, looked great, and was even willing to have her echo that day. She picked out her movie and we waited until the room was free. When it was, she took off her shirt with no objection and let the technician perform the echo. She watched Blue’s Clues and I watched her beating heart on the monitor.

It’s always so surreal for me- to see what looks like a strong, beating heart yet knowing that there really is only half a heart there that has had 3 major surgeries. I always tear up when I hear how great her heart looks and how well she’s doing. It seems like what we went through and experienced on this journey happened so long ago. I am reminded of what a gift we have in our time with Tillie and how she really is a blessing (even when she asks a gazillion questions each day or answers me with a grunt or pout). Dr. Baker will see again this summer and wants to send her home with a Heart Holter. She will wear this for 24 hours so he can get a good picture of her heart rhythms at rest, play, sleep, and other times during the day of a typical 6 year old. She’s excited about this as the device will fit on her shorts or skirt. She says it reminds her of the pump her friend Amelia wears for diabetes. We left the clinic happy, calm, and proud. Tillie and I celebrated her great results and bravery with a slice of pie at Perkins.

Tillie’s recap: “I was happy seeing Mommy and me on the cover of the magazine in the waiting room when we got to Dr. Baker’s office. The nurse took my blood pressure and put the little pincher on my finger. It didn’t hurt at all. I was proud to show Mommy how brave I was when Dr. Baker listened to my special heart and felt my belly when I laid down. I was really brave when they did the ‘jelly on my belly’ test (echocardiogram).  The jelly was warm and I got to watch Blue’s Clues. I felt happy that Dr. Baker was so proud of me. My Mommy and I went to Perkins after because I was so brave. I ate a piece of French Silk pie. I love to go to the doctor and I got lots of stickers. I was happy because Mommy and Daddy were so proud of me! When I go back this summer, I’ll get a Holter that will show how strong my heart is when I am playing and sleeping.”