MOM & SARAH TIME

A few days before Sarah and I were leaving for Sweden, I was going down to Colorado Springs with a group of parents and hospital staff for a meeting. We were traveling in a shuttle bus, so plenty of time for conversation. We were a couple of parents who started talking about balancing the needs of our special needs children with the needs of our healthy children. It can be a juggling act for any parent with multiple kids, but when you throw in a child with high needs in the middle, the dynamics between siblings is not always equal. I left the conversation knowing I wasn't alone with my thoughts and struggles.

One of the things I have always enjoyed in life is traveling. I had plenty of opportunities to travel as a kid, and later in life through work and with Joakim. Our travels quickly slowed down as Jacob's needs increased over the years. There were in fact years where neither Joakim or I would have considered leaving far from home due to Jacob's shaky health. We just never knew when we both had to be at Children's with a sick boy.

Three years ago, we felt that Jacob had come to a point where he was more stable. He still could get sick, but he wasn't spending time in the hospital every month. We started to plan our first trip back to family for years. As much as we would love to travel as a whole family, we knew there was no possibility for Jacob to come with us to Sweden. It wouldn't be safe for him. Joakim and I are instead taking turns going back with Sarah. It has turned into quality time with our girl and a way to make up a little bit for the times when her brother's needs completely take over our lives.

Here are some of the coolest things traveling with Sarah:

1. There are things making Joakim and I sometimes different from her peers' parents. For Sarah to experience our culture, our food, our family, our friends, and country is really great. This time around, I loved introducing a typical Swedish crayfish party to her.

2. I love for Sarah to meet and get to know our families better. Today, Sarah got to meet my grandma's sister. She prepared a complete feast, since we were coming all the way from Denver to visit with her. Sarah has spent time with her grandparents and we're living with her aunt and good mother Jenny during the whole stay.

3. It is cool to see Sarah making friends over here. Relatives and friends have kids her age. They talk to her in Swedish, and she talks to them in English. They compare interests, play together, and in the end realize that kids are kids.

4. There are certain things Sarah and I share wherever we are. We both like candy, highest on our list is Swedish losgodis. It is a selection of different pieces of candy you handpick. This time around I took Sarah to a candy store with 1000 different kinds of candies. Guess who was in heaven?!

5. Fika is part of the Swedish culture. It means having a break, most often a coffee break with a colleague, friend or family. Having a cup of coffee is an important part of our culture, but it wouldn't be a good fika if you don't eat something too, typically something sweet. We have had plenty of opportunities to share some of our favorite pastries, e.g. cinnamon buns and Princess cake.

6. Sarah loves swimming. She spends her summers on swim teams and in pools. The mix of my sister living next to the beautiful lake Malaren and a heat wave in Stockholm has given us several opportunities to swim in Malaren. The water is chilly!!!

7. I got to introduce a little bit of my Finnish culture to Sarah this time too. We went on a cruise ship to the island Aland (between Sweden and Finland). On the ship, we got to enjoy a typical Finnish sauna at the same time as the Swedish archipelago was passing by. We enjoyed spectacular views as we were sweating!

8. The absolute best part is to slow down together. We sleep in, we eat breakfast together on aunt Jenny's balcony, we spend the days together, and we always make sure we have time to snuggle and watch a movie or TV show on the couch by the end of the day. We have time to chat, catch up on life, share the little and the big things, and reconnect.

I am happy we still have a couple of days together before it is time to return to our boys who we of course miss!

Love, Maria.

ONE OF LIFE'S DEFINING MOMENTS

I am home again after three days of 157 miles of bike riding in the Rocky Mountains. I climbed mountain passes I never ever thought I would be able to climb. I rode distances on my bike I never thought my body could endure. The stunning mountains in our backyard became our playground for the last three days. I rode and finished Courage Classic for the first time in my life. It will for sure not be the last ride. I am hooked.

Heather, my dear friend and team captain of our Team Summits for Samantha, has always said that the ride is one of life's defining moments. I couldn't agree more with her. You are part of something so much bigger than yourself. At the same time, you feel your own strength as you are pedaling mile after mile.

Summits for Samantha is a strong team. At every aid station, I just had to look around for our jerseys and decorated helmets, and I felt a belonging as my legs were tired and sore. We all cheered each other on as we were adding miles to our bikes.

 

 

I also had my "own" little team of bikers. We all decided to ride the Courage Classic for the first time together. We trained together, and stayed together this weekend. We shared jerseys, butt cream,  jokes and laughter throughout the three days. We had a lot of fun as our bodies got more and more tired.

The one part I hadn't expected was all the yummy food along the way. You eat, and eat, and eat (and drink)! Each aid station had a selection of food and snacks you wouldn't believe finding on the top of the mountain. I had the best bagel with nutella on the top of Freemont Pass! Slices of oranges and gummy bears got me up Vail Pass. This morning we were greeted by fresh smoothies, and a fruit & granola bar in Breckenridge. What more can you ask for?

The best part was to pass the finish line together as a team today. We waited for everyone to make it back to Copper, and we finished together. And that's when the tears came...The realization that you love a hospital. A hospital making my son's life possible. A hospital Jacob can't live without. An overwhelming feeling of gratitude and love. A love for all the nurses and doctors making Children's so much more than a hospital. The love for everyone who rode together and donated to make this a better place.

I only had to look at Heather, and I knew that we both knew. No words were needed. I knew what she meant about the ride being a defining moment in life. It was all in her smiles and tears.

Some photos for you all to enjoy!

 

Children's President thanking us for riding and raising money for Children's.

Family cheering us on!

 

 

Friends enjoying a great party! 

 

Sarah cheering me on!

Michelle and her daughter Alexis riding in the honor of Aislinn living with a mitochondrial disease.

 

 

Relaxing after a strenuous ride.

 

 

Finish line!

You can still donate to Summits for Samantha thru end of August. Our goal is to reach $100,000 this year:
http://www.couragetours.com/2013/team/sfs

Love, Maria.

A SUMMER UPDATE!

It's me. Since mommy is more interested in her bike, I better do my own summer update. I am having a really busy summer! School and therapies take up a big chunk of my time, but I love it!

Here I am with my one-of-a-kind teacher, Mrs. Pries. She has a bigger wiser heart than most people in this world. She loves me just the way I am. My mom loves this photo of the two of us.

Mrs. Pries is going to be across the hall from my 1st grade class, and guess who is going to sneak into the kindergarten class? Yes, me!

Did I tell you about my para Peggy? She is absolutely wonderful. She is making sure I work really hard in school. She doesn't even give me a break as I am sometimes taking a snoozer. Sometimes I come home realizing that I did work while I was sleeping...

 

I am also doing music with Lauren every week. This is so much fun! I love making music.

 

 

I have also been working really hard in physical therapy. I am getting better at sitting up again. Look how sis is only supporting my shoulders or my mom my back. I also have a new TLSO supporting my back as I am sitting up.

 

 

 

 

I also have a new ramp! This makes it easy for me to get in and out of the house. My other ramp in the garage broke this week...Mom doesn't even want to talk about it...but let's just say that one of our delivery people basically stepped right through the ramp, broke it, and took no responsibility. Luckily, our basement guy Bob came and fixed my garage ramp right away! He is my own personal Bob the Builder.

 

 

I love summer time! Stay tuned for more updates.

 

Love, Jacob.

















I THINK I AM READY...

It all started here...Will you join us?...5 months ago I decided to ride in honor of Samantha and my son Jacob benefiting Children's Hospital. 150 miles of road biking in the mountains over the course of 3 days.

I got my first road bike as an early birthday present, and here I was ready to hit the road for the first time!

I had honestly no idea what I was getting myself into. I remember riding up the hill to NCAR in Boulder for the first time feeling I could walk faster than I could pedal. I remember balancing on the bike as I was grabbing my water bottle. I remember my first fall straight into a flower bed in a park going less than 10 miles/hour...legs were bruised for quite awhile. I remember being scared to death going downhill. I remember getting used to having cars around me as I was getting used to sharing the roads.

I remember having the best beer ever with my biking buddies after what we felt back then was a long ride. I remember having the best meals ever as the biking trips got longer. My appetite was increasing. My sore legs were tired, and a hot bath became part of my Saturday afternoon routine.

One hill deserves another big hill became our motto. We started conquer one hill climb after the next. From NCAR, we rode up Flagstaff, we then conquered Super flagstaff.  We rode up Lookout  Mountain a couple of times. Vail Pass was not as hard as I thought it would be. We conquered Ward. I turned into someone who loves a good steep hill climb making my heart pump really hard, and of course the reward of going downhill!

We went from thinking an hour or two on the bike was a good workout to five to six hours on the bike.

In the middle of becoming a biker the best part was to enjoy all beautiful nature in our state Colorado, friendships forming and deepening, and of course raising money for Children's Hospital!

 

 

 

 

 

 

 And this is where I ended my bike training. In Hygiene, I recharged with a cup of coffee and the best sandwich ever (turkey, gruyere and red pepper on multi-grain bread) before biking the last 15 miles back to Boulder.

I never thought I would say it, but I think I am ready for the Courage Classic!

http://www.couragetours.com/2013/jacobhallberg

Love, Maria.