FRIENDSHIPS, BALLOONS AND ASHES

Jacob got the best birthday gift this year. As we were Skyping with his friends Selina and Leandra in Switzerland, we found out they were going to come and visit him this summer! Jacob never cared about anything material, but he did care about his two Swiss friends deeply. We decided that the best would be for them all to move in for a few days, since Jacob would have an easier time to hang out with the girls in his own home. What I would do to be able to write that beautiful story tonight.

As things happened, Jacob passed away about ten days before his friends came to town. Selina wrote the most beautiful letter to Jacob as she found out he passed. Pastor Gregg shared her letter with everyone at Jacob's memorial service. This weekend, she gave me the letter in person. How I will cherish that letter for the rest of my life. It's a priceless gift from a beautiful soul who came in to our lives because of Jacob.

Selina had told her mom that she thought it was going to be a little weird to come and stay at Jacob's house when Jacob wasn't going to be here any longer. I had actually been thinking the same. The little guy would be greatly missed as our two families got together for the weekend.

But what a beautiful weekend it was for all of us. Sarah loved spending as much time as she possibly could with Selina and Leandra. Those two girls stole her heart long time ago. The pool was always our favorite hangout place together, so we did spend hours at the pool this time as well. It was the perfect transition from beach to home for her. Joakim got to share his whiskey with Andre as we all shared crazy travel stories throughout the evenings. And I got to talk about Jacob. Our kids shared so many good years together, and it was so healing to my heart to remember all those times together with Nadia. I just couldn't stop talking about him, and she just listened and chimed in. The best kind of friend.

Since they all missed Jacob's memorial service and Celebration of Life, I wanted to do something together with them in memory of Jacob. I knew I wanted to spread some of Jacob's ashes at the top of Flagstaff Mountain, and what better way than sharing the moment with close friends. I have a love hate relationship with Flagstaff Mountain. I have had times when I hardly made it to the top, but the beauty and the satisfaction of greeting the mail boxes at the top of Flagstaff always keep me coming back. I have also gained clarity in decisions I had to make for Jacob as I pedaled up that steep hill. Things I just couldn't wrap my head around suddenly seemed clear after a good hour of climbing. It was my escape many times.

It was a beautiful morning in Boulder. The sky was blue, the sun was out, but it wasn't too warm yet. Three biking friends decided to ride up Flagstaff with me. Gemma, who hasn't been on a bike for three years, decided to conquer the mountain with us. Only sweet Jacob was able to get her up that hill. Having been on sea level and only a few training rides under my belt this year, it was a tough ride for me too. Jacob as so many other times got me up that mountain. I had his name running in my head the whole way up.

We then met up at Flagstaff Amphitheater for coffee and breakfast. Food tastes so good after a hard, sweaty ride. We all took in the beautiful morning as we wrote our messages to Jacob on the balloons we were sending off to him. We then spread Jacob's ashes over the lookout of the Amphitheater. We all took a moment to remember Jacob and found the perfect spots for spreading his ashes. We now all have a place to come back to and remember our boy. If you ever have your ways to Boulder, pass Chautauqua park and simply continue on Baseline road all the way up to Flagstaff Amphitheater. I will meet you up there any time!

I'm ending this post with some of my favorite pics of Jacob and Selina, just because they were so darn cute together!

One month without our boy today. There are no words for how much we love and miss him. The one thing I know is that we wouldn't have survived this first month without the enormous outpouring of love, kindness, and support.

With sincere gratitude,
Maria.

SIT IN GRIEF

Tomorrow evening, we're heading back home. It is with mixed feelings I leave this sacred place and beautiful beach and ocean. I know it was the right decision to leave everything and come to the beach for almost three weeks. Life has been greatly simplified. Eat, sleep, beach, repeat. Wherever we went, we brought memories and longing for our boy, but it was in a place where no one but the three of us knew about it. We didn't carry the grief of others caring for Jacob. The focus was on the three of us, no one else. I'm thinking it was all we could handle.

I can't remember when the three of us have spent this much time together. It was a good start to a new beginning. Grief can at the same time be a lonely place even when you're surrounded by loved ones. The three of us don't grieve at the same time, and not in the same way. I think we did ok in also giving each other space when we needed it. I know I needed my alone time, and Joakim and Sarah would venture out to the grocery store or starting the grill down at the beach. Sarah and I would venture to the farmer's market or spend more time in the waves while Joakim would sit on the beach. Sarah would leave a little earlier from the beach while Joakim and I would take a walk together.

We have united several evenings on the beach, collecting and writing Jacob's name with sea shells. We love the stillness of the beach at night, the cool sand on our feet, the sound of the ever lasting waves, the breeze, the dramatic sky, and the sun sets. The beach looks slightly different each time reminding us that so do our lives right now. Nothing is constant.

As I read about loss of a child, I'm told to "sit in my grief". I should welcome the grief and fully experience it. In the middle of the ugly grief, healing will come. Being a person who loves to stay busy, it's sometimes hard for me to fully slow down and "sit in my grief". As Sarah was starting to get a little bored of our slow beach days, Joakim decided to take Sarah to Universal Studios today.

Today, it was all about me. I started the day with a run. Exercising was always my "go to" when I was stressed about Jacob, and so is it now. Passing a playground with a special needs swing was all it took for me to land right in sadness. I kept running despite my legs not being as willing to move forward. It was probably the slowest run in a very long time as I was passing that little empty swing twice.

I had a slow breakfast and enjoyed my cup of coffee as I was reading a few more old blog posts. I then went to the beach. I swam in the waves, went for a walk on the beach, and read my book. I didn't think much. I just let my mind wander. This afternoon, I put on my favorite Swedish opera singer Malena Ernman. Sarah and Joakim are not crazy about her, so today I could fully blast her new CD Sverige (Sweden). And right then, I sat in my grief. I had no one waiting for me or nowhere to be. I let the tears come for my sweet Jacob I so very much miss. The loss of Jacob is so much more than our sweet boy. It's the loss of him being my inspiration and motivation each day for ten years. The loss of being Jacob's mom, something I got so very good at. It was a purpose in life bigger than anything I have ever experienced.

As we venture home tomorrow, I'm nervous. Coming back home is going to make the loss of Jacob, if at all possible, even more evident. Our house is quiet compared to being filled with Jacob's nurses and therapists. Jacob's typically busy room is quiet. Every room in our house has reminders of our boys. The care and kisses every hour of the day is gone. I don't need to get up at a certain hour to prepare medications, start Jacob's vest treatment and suction him. I don't need to eat dinner a certain hour to get Jacob to bed in time for his seizure medications. I wish there was some relief in that,but it is just pure loss. What I would do to get that life back again. It's also time for Joakim to get back to work again.

To soften our homecoming, we have good friends visiting from Switzerland moving in with us right away. They shared Jacob with us for years, so that gives me comfort. Sarah is also ready to see her friends again. As I told her early on that I think exercise will help me heal, she told me right away that her friends will help her to find happiness again. She can't wait to see them. She had a rough couple of days lately when she had to make some decisions for next year. She simply couldn't. She was so sad, and she thinks life is pretty unfair. I felt heart broken seeing her so sad. She needs Joakim and I close to her, and she craves a lot of attention from both of us. She doesn't like to go to bed. Other times, she is hoping by not thinking about Jacob and not talking about him, the pain will go away. It's simply too much to take in all at once to get through the day.

Despite being far from home, I have cherished all of you checking in with me. I have cherished each kind message, and it gets me through to the next act of kindness. This blog has also been very good to me, a place to put words on so many overwhelming feelings.

Sincere thanks to our community of family & friends. Thanks for sticking with us.

Much love, Maria.

THE MAGIC OF DISNEY

"I was thinking why this place is magic, and it's in the details. Everything at Magic Kingdom is so well thought through to the smallest little detail. Sarah told us that Jacob is spoiled rotten here, and that's what happens when you otherwise have to spend a lot of time in the hospital. Our girl sure understands more than I sometimes think."

This is an extract from one of my blog posts during Jacob's Make-A-Wish trip in 2009. I have enjoyed reading my old blog posts, and gosh did our boy have a rough 2009. In the middle of a very rough year where we just didn't know if our boy was going to make it, Jacob made it to Disney World twice (!) within six months. I am so happy we just decided to go for it when we were granted our Make-A-Wish trip exactly six months after our own trip to Disney. These are the things I simply not regret, and instead feel thankful for.

This last week, we decided to take Sarah to Disney World. She got to pick the park, and decided without hesitation "Magic Kingdom". We left Vero Beach early, and made it to Magic Kingdom shortly after they opened their doors. It was a really hot humid day, and we were definitely sweaty and hot throughout the day. With a teenager on board, we took full advantage of all the rides and parades in the park and enjoyed 15 hours of fun and magic. Add another four hours of driving time, and it turned into a very long, but really good day.

Sarah figured out the fast pass system, and we didn't stand in lines all day long. None of us are crazy about scary rides, and in that way, Magic Kingdom is perfect. The rides are so well done, but they are not necessarily turning your stomach inside out.

Disney has a way to make us all feel like children again. We simply had a lot of fun together, and we laughed a lot. The laughter you feel starting in your stomach, and making your face turn into a big smile. Joakim and I were sincerely happy to see Sarah just enjoy the moment, and for a day forgetting she's an only child, missing her brother, and feeling life is pretty darn unfair right now.

Being in fresh grief, I crave kindness. I don't do well with rude people or unkind words. The smallest gesture of unkindness really put me at unease. I have no protection for meanness and rudeness. In Disney, everyone is extremely friendly and will go out of their way to be kind. I ran into the Haunted Mansion gift shop to escape the heat. One of the sales people saw me, and showed me a secret spot in the store where there was an extra fan. He also showed me where the nearest restrooms were and where I could charge my phone. This is the kind of world I want to live in right now, a kind, friendly world where I don't need to make any hard, major decisions.

What I didn't expect coming out of this day is us going down memory lane with Jacob. Memory lane in a really good way. Our last true vacation with Jacob was his Make-A-Wish trip to Disney World. As we were moving through the park, we remembered the different rides we did with our boy and that he never wanted to get off the ride "It's a Small World". We remembered all the princesses we met with, Sarah with her autograph book in her hand, and Jacob deciding to not let go of Cinderella's hair. Joakim and I said multiple times we were so happy we took Jacob on this trip when he was still doing pretty well. Little did we know that Jacob would have his first true mitochondrial crash less than a month after his Make-A-Wish trip. Everything happens for a reason.

At night, we watched the Disney Parade followed by spectacular fireworks. As we were standing in the darkness surrounded by thousands of people, I just got this feeling that maybe, maybe we will be ok one day again, and in the middle of grief, we do need to find moments of happiness.

To the magic of Disney. Much love, Maria.

SHELTERED BY THE BEACH

After an intense week at home preparing for Jacob's memorial service, we decided to leave town. We're on our second week in Vero Beach, Florida. Dear friends of ours gave us the gift of letting us stay in their beach house. We're five minutes from the beach. It's always a slight breeze around the house due to the closeness of the ocean. The sky is blue, and the air is warm and humid.

I'm hoping it was the right decision to leave. I feel as if we're sheltered from the enormous grief of loosing Jacob by the beauty of this place. The waves, the sand, the shells have taken us under their wings, and soften life just a little. Our beach life has also simplified our lives a lot. We eat, sleep, and relax. That's basically the three things happening each day. I sleep a lot. I have not slept well in ten years. The first week after Jacob passed, I couldn't sleep at all. I felt as if I was running around jet-lagged, and I desperately needed a nap in the afternoon to make it to bed time. Now I crave my sleep.

Joakim and I read a lot. I have started reading my own blog from the beginning. The printed copy is well over 1,000 pages. I'm on year three of Jacob's life, one of Jacob's toughest years of his life. We swim in the ocean and jump in the waves. We all take walks in the evening. We watch TV with Sarah and play Dominoes. We talk about all day things, and we talk about the past and the future. We spend a lot of time together, but also make room for each of us to have some space.

We're protected by the fact that no one knows us here. I don't need to have a conversation about Jacob passing as I am in the grocery store (and if you do meet me at the store, do know I love to talk about Jacob) or at the gym. On the outside, I am just another mom getting groceries for dinner. There are also few reminders of Jacob in Vero Beach. The first time I saw the gift shop where I bought him a t-shirt last time, it punched me deep in my chest. When I saw a boy wearing the same swim shirt Jacob got for his 10th birthday, I was taken back by the waves. A Minion pen case at Target reminded me that there will be no school supply shopping for Jacob this year. That got me so incredibly sad out of nowhere.

4th of July was harder than I thought it would be. I felt low the whole day, remembering all 4th of July holidays with our boy in it. I was happy we were on vacation, so I didn't have to be reminded of our neighborhood bike parade, swimming in our pool, and BBQs on our deck. I also surprised myself by realizing I haven't watched 4th of July fireworks in years. After BBQ with friends at our house, I always stayed back with Jacob. I typically sneaked out after he fell asleep with his monitor to hear the fireworks from our front patio. It was a good place to end the day after a good evening with friends and knowing our boy was sleeping. It was bittersweet to actually get to watch fireworks with Joakim and Sarah for the first time in a very long time.

I see signs of Jacob everywhere. I see him in the clouds, I see him in a beautiful flower, and I see him at sunset. The idea that Jacob won't communicate with me any longer is unbearable. I need his signs to move forward.

There is also this feeling of guilt. That we are now on this beautiful beach, something we just couldn't do with Jacob. I know it doesn't make sense, but it comes over me. I would of course trade it any minute for another day with Jacob, but I also think somewhere he knows we need this escape right now. It's a place of healing.

It's a time for Joakim, Sarah and I to figure out how to be a family again. We always joked about Jacob being the boss of our family. The flow of our days and our lives definitely circled a lot around Jacob's care and health. I changed my job to be able to care for Jacob, Joakim and I always tag teamed since one always had to stay home with Jacob. Our alarm clock was set based on Jacob's care, our dinner time was set so we had time to get Jacob ready for bed. Our weekend rhythm was determined on when Jacob needed to be home for naps or vest treatments. If we were home or at Children's all depended on how Jacob was doing. It was our normal, our family, and we got really good at having a great life together.

A few times, I did let my mind wander to life without Jacob when he was still with us. I always thought I would be completely paralyzed, and to simply get out of bed would be a huge struggle. This stage of grief is nothing what I would have expected it to be. I found this quote and thought it describes pretty well where we are right now:

"Grief is like waves washing in from the ocean. Sometimes they are small and tolerable, yet sometimes when you least expect it a big wave pull your feet right out from under you."

Tomorrow, we are leaving early for Orlando. We're taking our girl to Disney World. She's so excited, and I hope we will allow ourselves to make that a good day for all of us, simply be in the moment, and find a moment of happiness.

Sincere thanks to everyone reaching out to us. We cherish every message and love from each one of you.

Much love, Maria.