Dear Jacob,
I always knew. I always knew I would have no idea how it would be on the other side. I let my mind wander in that direction sometimes, but most days I just saw a black hole. I couldn't imagine life without you. I didn't know what it would be without you.
That is the one thing I was right about. I didn't know how it would be without you. We're getting close to five months without you, and I think little by little, I start to take in that you're not coming back. Some days, I just can't even phantom our reality. I consider myself an intelligent logical person, but I can't handle the enormous loss of you in one go. Not in five months time. It's too big too handle.
So, how is it to have Grief at the table?
Grief sneaks up when it wants to. It has a mind of it's own. A sweater, a smell, a picture, a sunset, a memory can make it come for a visit. Often when I sit in the car on the way home from work, letting my mind unwind, it comes to visit. I think of you. Sometimes I smile, sometimes I feel pain, and there are always tears. Tears are good. Tears make me feel better. It's just amazing how many my eyes can produce. The sky is the limit.
I'm forever grateful you taught me to live in the moment, and to enjoy life's precious moments. I didn't always know how to do just that. Many, many years ago, I was upset about something at work. I don't even remember what it was any longer. I went for a walk with this wise colleague of mine. Instead of arguing about the issue we both were upset about. He pointed to the sky. He pointed to the beautiful sunset. He wanted to show me that none of this mattered. The answers were in the sky.
I realized many years later that his life experience at the time was a little deeper than mine. I wish I could take a walk with my former colleague one more time because today we could watch the sky together. I see things in another light now. I took a walk with Max this evening, and the colors of the sky, the sun, the trees are just a little brighter. I always find you in the beauty of nature. I know you are there.
It's with mixed feelings I am going in to this holiday season without you. As you know, I love the holidays. I have always loved this part of the year for as long as I can remember. With me going all the way out for the holidays, Sarah has become an equally big fan of traditions and everything that comes with this time of the year. She is determined we're doing Christmas. If she would get her way, the tree would be up by now.
As much as I love this time of the year, I know it's going to be so very hard without you for the first time. Everything that I love about this time of the year had you in it. You were such an integral part of it. So, I am going to have to find you in this holiday season. I am going to find ways to remember and honor you. I am also going to ease up a little on myself as everyone else decides to put that extra pressure on themselves. I am going to try to stay honest to myself to allow Grief to take a place at our table this season. Thanksgiving, Christmas, New Year, and all those days in between.
This season I am inviting Grief to our table. It's not something I want to do, but I better acknowledge I need an extra chair at the table. It's that one Guest who won't turn down my invitation.
Sweet Jacob, through tears we will keep the good traditions and create new ones. We will do things you loved to fill our hearts. We will do the very difficult task of surviving without you. How I miss you, sweet, sweet boy.
I love you to the moon and back,
mom.
Friday, November 11, 2016
Sunday, November 6, 2016
(Y)OUR PEOPLE
Sweet Jacob,
What a great weekend we just had. You were never far from my mind, and I got to talk about you so much. It felt so good after surviving the first Halloween without you.
Remember how you felt after a long day? Remember how it felt as if you were running a marathon every single day? That is how Dr. E. felt after playing Symphony No. 9 in C major by Schubert on Friday evening. This piece is intense for the violinists, and she gave it her all. She had a big smile on her face as she was wiping off a little sweat from her forehead. Dr. E gives big sincere hugs, and we got several of them on Friday. How I have missed her, really missed her. It was so good to talk to her, and see her. She was your absolute biggest champion at Children's, and she was such a large part of your life, of all of our lives. To hug and talk to her felt like yet one of your parting gifts. As she was playing, I was thinking about some of the harder times we had together, and how she never shied away from the difficult topics, and how she never ever gave up on you. How she came and saw you in the PICU evening after evening as she was done in her Clinic. How she spent the last weekend with you an us in the ICU. How she was always there for you, for us. I remembered her examining you in the Clinic so many times, and how she thought you were such a beautiful boy. She especially loved you dressed all in black (sometimes Gemma dressed you up specially for Dr. E). Even when you were on the "shubby" side, you were always perfect in Dr. E's eyes. I know I will spend more evenings with Arapahoe Philarmonic in the new year because she sure ran a marathon with you for ten beautiful years.
I also got to hang with your favorite friend Mrs. Brittany last night. She has been one of my strongest supporter since you left us. It doesn't go a week without her checking in on me, and telling me about her memories of you. It warms my heart every time I hear from her, since I know how much she loves you and how we share that together. We introduced Mrs. B and her partner in crime to Swiss Raclette last night. We had fun making our food at the table, and they introduced us to the board game Ticket to Ride. It was fun to see Sarah staying by Mrs. B's side all night long. Typically when we have friends over for dinner, Sarah disappears from the table sooner or later, but not last night. She had fun playing board games, and making conversations. I more than once was looking to your side of the table thinking you would show up in your chill out chair and watching over all of us. I felt your presence.
Today, I got to have coffee with your old nurse Libby in our backyard. She stopped by with one of her fabulous soups, and we chatted about life. Remember how she always visited us in the hospital and delivered me soup? It was one of my best meals in the hospital after having been sitting in your bed for most of the day. Home made soup warmed my soul. I was happy to find a batch of pesto in my freezer for her as well. Libby loved coming to our house when I had made a big batch of pesto in the summer evenings.
Jacob, you have no idea how much I treasure your friends. The ones who came in to our lives because of you, and how you stole their hearts secretly. How they all came in to your life because you needed them, but in the end, they all needed you more. I feel so close to you when I spend time with them because we share the longing for you, the gratitude for loving you, and the laughter of all those beautiful memories we created together. They fuel me. They keep me going. They became a part of our lives.
I can't deny it, the holidays are upon us. We made it through Halloween in one piece. I find myself longing for you more and more as the holidays are upon us. I know the rest of the year will not be easy as we always cherished this time of the year with you. For now, I am simply accepting it's not going to be easy. I will try to follow my heart and honor you each step of the way. It's not going to be easy, it's not going to be linear, but who ever said it was going to be easy without you? I knew it wouldn't.
The one thing I do know is those very special friends of yours will soften the edges and sprinkle some glitter and gold on our souls as we so terribly miss you.
Sweet Jacob, I love you to the moon and back.
Love, mom.
What a great weekend we just had. You were never far from my mind, and I got to talk about you so much. It felt so good after surviving the first Halloween without you.
Remember how you felt after a long day? Remember how it felt as if you were running a marathon every single day? That is how Dr. E. felt after playing Symphony No. 9 in C major by Schubert on Friday evening. This piece is intense for the violinists, and she gave it her all. She had a big smile on her face as she was wiping off a little sweat from her forehead. Dr. E gives big sincere hugs, and we got several of them on Friday. How I have missed her, really missed her. It was so good to talk to her, and see her. She was your absolute biggest champion at Children's, and she was such a large part of your life, of all of our lives. To hug and talk to her felt like yet one of your parting gifts. As she was playing, I was thinking about some of the harder times we had together, and how she never shied away from the difficult topics, and how she never ever gave up on you. How she came and saw you in the PICU evening after evening as she was done in her Clinic. How she spent the last weekend with you an us in the ICU. How she was always there for you, for us. I remembered her examining you in the Clinic so many times, and how she thought you were such a beautiful boy. She especially loved you dressed all in black (sometimes Gemma dressed you up specially for Dr. E). Even when you were on the "shubby" side, you were always perfect in Dr. E's eyes. I know I will spend more evenings with Arapahoe Philarmonic in the new year because she sure ran a marathon with you for ten beautiful years.
I also got to hang with your favorite friend Mrs. Brittany last night. She has been one of my strongest supporter since you left us. It doesn't go a week without her checking in on me, and telling me about her memories of you. It warms my heart every time I hear from her, since I know how much she loves you and how we share that together. We introduced Mrs. B and her partner in crime to Swiss Raclette last night. We had fun making our food at the table, and they introduced us to the board game Ticket to Ride. It was fun to see Sarah staying by Mrs. B's side all night long. Typically when we have friends over for dinner, Sarah disappears from the table sooner or later, but not last night. She had fun playing board games, and making conversations. I more than once was looking to your side of the table thinking you would show up in your chill out chair and watching over all of us. I felt your presence.
Today, I got to have coffee with your old nurse Libby in our backyard. She stopped by with one of her fabulous soups, and we chatted about life. Remember how she always visited us in the hospital and delivered me soup? It was one of my best meals in the hospital after having been sitting in your bed for most of the day. Home made soup warmed my soul. I was happy to find a batch of pesto in my freezer for her as well. Libby loved coming to our house when I had made a big batch of pesto in the summer evenings.
Jacob, you have no idea how much I treasure your friends. The ones who came in to our lives because of you, and how you stole their hearts secretly. How they all came in to your life because you needed them, but in the end, they all needed you more. I feel so close to you when I spend time with them because we share the longing for you, the gratitude for loving you, and the laughter of all those beautiful memories we created together. They fuel me. They keep me going. They became a part of our lives.
I can't deny it, the holidays are upon us. We made it through Halloween in one piece. I find myself longing for you more and more as the holidays are upon us. I know the rest of the year will not be easy as we always cherished this time of the year with you. For now, I am simply accepting it's not going to be easy. I will try to follow my heart and honor you each step of the way. It's not going to be easy, it's not going to be linear, but who ever said it was going to be easy without you? I knew it wouldn't.
The one thing I do know is those very special friends of yours will soften the edges and sprinkle some glitter and gold on our souls as we so terribly miss you.
Sweet Jacob, I love you to the moon and back.
Love, mom.
Saturday, October 29, 2016
A LITTLE RESPITE
Dear Jacob,
We have had a beautiful fall in Colorado this year. Warmer than I can remember we have had in a very long time. Spectacular colorful leaves have stayed with us. The fall storms have stayed away. I'm wearing my boots, but no need for leggings or tights just yet. The other day I saw this large orange and black butterfly, and I knew it was you coming to say hi. Butterflies in October...I have taken walks around the lake with Max, which always gets me to think of you. You would have enjoyed this fall so very much. We would have stopped, and taking pictures and simply taking in the nature around us. I do miss you on these walks, and sometimes I end up talking to both you and Max as we're getting our way around the lake.
I miss the things we did together during the fall.I miss our pumpkin painting galore, and always making a couple of Minion pumpkins for the front porch. I felt it was better to simply not do it this year, since I think it would have been too painful. We did introduce my Swedish friend Mari to a pumpkin patch, and Sarah had fun picking out pumpkins this year.
I haven't had as much pumpkin this fall as I typically do. I haven't made pumpkin bread or muffins yet, and I have only had one or two pumpkin spice lattes. I will sure be thinking of you when I find time for those special treats.
We have had a busy fall so far. Work has taken up a good chunk of my time, and it has been good busy. I have this team in Europe, who all get me up really early in the mornings, and it has been a good feeling to be able to make a difference.
Your sister has been smiling a lot lately. High school volleyball just ended. It turned out to be really good for sis, and she enjoyed her two teams a lot. She is doing really well in school, and she has a good circle of friends. She has been really chatty with me as we walk Max, and I do enjoy our time together so very much. It's fun to get an ear and eye into the high school world.
Your dad is doing pretty well too. He will never admit it, but I think Max is growing on him. He takes Max for walks, and makes sure he has everything he needs, just like he always did for you. Your dad and I have started going to yin yoga at least once a week. We stretch together, and it's so good for the mind and soul. We sleep like babies (which is a rare thing for me) after one of those classes. It's great to find new things to enjoy together.
Do you remember Duck and Vince? They are running the non-profit Domus Pacis in Summit County. When Duck's mother was nearing the end of her battle with cancer, she went to the Rocky Mountains with her daughters. This was the best medicine for her heart and soul. When her mother passed, Duck didn't know what to do with her beautiful fully handicap accessible home. This is how Domus Pacis was founded. They are now offering hospice families a respite week in the mountains. We got close with them the first time Sarah and I stayed with them. You and daddy stayed home, since you were battling pneumonia and wouldn't have liked the high altitude. Duck wanted to make sure you got your respite week too, and in October of last year, we all went up to their home for a long weekend. I have so many good memories from that weekend with you.
Duck and Vince wanted you to come up in the summer time too, and we had planned to stay with them again in June. Unfortunately, I had to call Duck and let her know that rather than coming up to their beautiful home, we would be at your memorial service. Since then, Duck has done everything to get us up here again. She felt respite was equally important now as we're grieving and trying to find a new normal. The respite is finally happening. Your sister is off from school for a few days, and we have been up in a beautiful mountain home in Keystone since Thursday evening. It's still completely amazes me how we can just pack up and go. It's a really, really odd feeling.
As I am writing to you, I am sitting outside with a glass of wine and enjoying the sun slowly setting over the mountains. The sky is blue, and there is a slight chill in the air. It has been so good to be up here. There is absolutely no noise around here, so I have been sleeping really well. I have been sipping my coffee with a beautiful mountain view. We have been playing board games. We have been listening to music. We have been watching movies. We have enjoyed good food and wine. We have relaxed, and just slowed down a little.
It has been a perfect escape from Halloween weekend. I have been a little worried about Halloween, and how the emptiness of you not being here is going to feel on one of the biggest holidays for children. I loved dressing you up. I loved staying back with you at the house, and hand out candy until you needed to go to bed. I loved the years friends came over after trick-or-treating to hang out with us as we were watching you on the camera in deep sleep. I have many good memories from Halloween with you.
And once again, friends are picking us up. We will celebrate this holiday with friends, and Sarah still gets to go trick-or-treating with her friends, and we get to enjoy some adult time. I needed this holiday to be different than previous years, and Sarah is so excited about her matching costume with one of her friends.
As we move into the holiday season, I know it's going to be really rough without you. I just know it. I can at any time remember the first Christmas without my mom, and how difficult that was for all us being near to her. I'm just going to have to take one step at a time, and see what feels right and not. Friends keep watching over us, and I think that is the best medicine. We're just never really alone. I can't say enough about that constant continuous support. It fills my heart every day.
Jacob, it's starting to get a little chilly out here as the sun has fallen behind the trees. It's time to join your dad and sister inside. Tomorrow, we're venturing out to Breckenridge to enjoy another beautiful day up here.
Sweet Jacob, I love you to the moon and back always,
your mom.
We have had a beautiful fall in Colorado this year. Warmer than I can remember we have had in a very long time. Spectacular colorful leaves have stayed with us. The fall storms have stayed away. I'm wearing my boots, but no need for leggings or tights just yet. The other day I saw this large orange and black butterfly, and I knew it was you coming to say hi. Butterflies in October...I have taken walks around the lake with Max, which always gets me to think of you. You would have enjoyed this fall so very much. We would have stopped, and taking pictures and simply taking in the nature around us. I do miss you on these walks, and sometimes I end up talking to both you and Max as we're getting our way around the lake.
I miss the things we did together during the fall.I miss our pumpkin painting galore, and always making a couple of Minion pumpkins for the front porch. I felt it was better to simply not do it this year, since I think it would have been too painful. We did introduce my Swedish friend Mari to a pumpkin patch, and Sarah had fun picking out pumpkins this year.
I haven't had as much pumpkin this fall as I typically do. I haven't made pumpkin bread or muffins yet, and I have only had one or two pumpkin spice lattes. I will sure be thinking of you when I find time for those special treats.
We have had a busy fall so far. Work has taken up a good chunk of my time, and it has been good busy. I have this team in Europe, who all get me up really early in the mornings, and it has been a good feeling to be able to make a difference.
Your sister has been smiling a lot lately. High school volleyball just ended. It turned out to be really good for sis, and she enjoyed her two teams a lot. She is doing really well in school, and she has a good circle of friends. She has been really chatty with me as we walk Max, and I do enjoy our time together so very much. It's fun to get an ear and eye into the high school world.
Your dad is doing pretty well too. He will never admit it, but I think Max is growing on him. He takes Max for walks, and makes sure he has everything he needs, just like he always did for you. Your dad and I have started going to yin yoga at least once a week. We stretch together, and it's so good for the mind and soul. We sleep like babies (which is a rare thing for me) after one of those classes. It's great to find new things to enjoy together.
Do you remember Duck and Vince? They are running the non-profit Domus Pacis in Summit County. When Duck's mother was nearing the end of her battle with cancer, she went to the Rocky Mountains with her daughters. This was the best medicine for her heart and soul. When her mother passed, Duck didn't know what to do with her beautiful fully handicap accessible home. This is how Domus Pacis was founded. They are now offering hospice families a respite week in the mountains. We got close with them the first time Sarah and I stayed with them. You and daddy stayed home, since you were battling pneumonia and wouldn't have liked the high altitude. Duck wanted to make sure you got your respite week too, and in October of last year, we all went up to their home for a long weekend. I have so many good memories from that weekend with you.
As I am writing to you, I am sitting outside with a glass of wine and enjoying the sun slowly setting over the mountains. The sky is blue, and there is a slight chill in the air. It has been so good to be up here. There is absolutely no noise around here, so I have been sleeping really well. I have been sipping my coffee with a beautiful mountain view. We have been playing board games. We have been listening to music. We have been watching movies. We have enjoyed good food and wine. We have relaxed, and just slowed down a little.
It has been a perfect escape from Halloween weekend. I have been a little worried about Halloween, and how the emptiness of you not being here is going to feel on one of the biggest holidays for children. I loved dressing you up. I loved staying back with you at the house, and hand out candy until you needed to go to bed. I loved the years friends came over after trick-or-treating to hang out with us as we were watching you on the camera in deep sleep. I have many good memories from Halloween with you.
And once again, friends are picking us up. We will celebrate this holiday with friends, and Sarah still gets to go trick-or-treating with her friends, and we get to enjoy some adult time. I needed this holiday to be different than previous years, and Sarah is so excited about her matching costume with one of her friends.
As we move into the holiday season, I know it's going to be really rough without you. I just know it. I can at any time remember the first Christmas without my mom, and how difficult that was for all us being near to her. I'm just going to have to take one step at a time, and see what feels right and not. Friends keep watching over us, and I think that is the best medicine. We're just never really alone. I can't say enough about that constant continuous support. It fills my heart every day.
Jacob, it's starting to get a little chilly out here as the sun has fallen behind the trees. It's time to join your dad and sister inside. Tomorrow, we're venturing out to Breckenridge to enjoy another beautiful day up here.
Sweet Jacob, I love you to the moon and back always,
your mom.
Wednesday, October 19, 2016
MEET MAX
Dear Jacob,
I was wondering why I was in a funk today. I felt the tears burning right under the eyelids every time I sat in the car and a song came on. I saw your beautiful face and was thinking what we would be doing right now as my eyes landed on the snow covered mountains. I decided to check my email from work one last time tonight, and there it was. A message from a dear colleague and friend reminding me it is the 19th today, and that she is always thinking of me, but especially on the 19th. It's four months today since you took your last breathe.
I wanted to let you know that there have been lots of laughter and joy in the house in the past week. Sarah finally got her birthday present. She got her Max. Max is a 5 years old shih tzu. He has the sweetest of souls, loves to cuddle and is never far from Sarah's side. We know Max didn't have an easy life before he stole our hearts. The shelter thinks he was stray. He will need some training, patience, and love to fully trust again. He is pretty determined when he sets his mind to it, and loves to run and play. He is not happy about the Halloween decorations taking over the neighborhood yards, and he can't for his life understand why the printer makes noise.
Your sister is carrying around a big smile on her face as she talks about Max. She loves talking about all the funny things he does, and how he just never leaves her side. She is for the first time since you passed away ok to go to bed before us, as long as Max comes with her. She watches TV by herself as long as Max is next to her. She is setting her alarm a little earlier in the mornings, so she has time to walk and feed him. Max has filled a little of the void you made the day you left your sister.
You know, your dad and I were truly the best team Jacob there was. The way we partnered around you was pretty amazing. Together, we always were able to figure out what you needed and what we needed to do. I didn't realize how much I missed the daily text messages: "How is j?" or "Did j poop?" "Did j take a nap?" This is how we communicated all day long when we were not both by your side. The texting has started again. "How is Max?" "Did Max poop?" "How are Max's eyes (he just had eye surgery)?" They are little love messages throughout the day. As always it is your dad who figures out how to best get everything Max needs and how to best discipline him.
So as hard as it is on the evening of October 19th, marking four months without you, Max embraces all that love we carry around. Our house is now full of dog toys and someone waiting right at the door full of joy when we get home. Someone who wants to walk around the lake when I can't take you in your stroller any longer. Someone who wants to sleep next to your sister. Someone we all can rally behind. Someone who simply wants to be,
Sweet Jacob, I love you to the moon and back,
mom.
I was wondering why I was in a funk today. I felt the tears burning right under the eyelids every time I sat in the car and a song came on. I saw your beautiful face and was thinking what we would be doing right now as my eyes landed on the snow covered mountains. I decided to check my email from work one last time tonight, and there it was. A message from a dear colleague and friend reminding me it is the 19th today, and that she is always thinking of me, but especially on the 19th. It's four months today since you took your last breathe.
I wanted to let you know that there have been lots of laughter and joy in the house in the past week. Sarah finally got her birthday present. She got her Max. Max is a 5 years old shih tzu. He has the sweetest of souls, loves to cuddle and is never far from Sarah's side. We know Max didn't have an easy life before he stole our hearts. The shelter thinks he was stray. He will need some training, patience, and love to fully trust again. He is pretty determined when he sets his mind to it, and loves to run and play. He is not happy about the Halloween decorations taking over the neighborhood yards, and he can't for his life understand why the printer makes noise.
Your sister is carrying around a big smile on her face as she talks about Max. She loves talking about all the funny things he does, and how he just never leaves her side. She is for the first time since you passed away ok to go to bed before us, as long as Max comes with her. She watches TV by herself as long as Max is next to her. She is setting her alarm a little earlier in the mornings, so she has time to walk and feed him. Max has filled a little of the void you made the day you left your sister.
You know, your dad and I were truly the best team Jacob there was. The way we partnered around you was pretty amazing. Together, we always were able to figure out what you needed and what we needed to do. I didn't realize how much I missed the daily text messages: "How is j?" or "Did j poop?" "Did j take a nap?" This is how we communicated all day long when we were not both by your side. The texting has started again. "How is Max?" "Did Max poop?" "How are Max's eyes (he just had eye surgery)?" They are little love messages throughout the day. As always it is your dad who figures out how to best get everything Max needs and how to best discipline him.
So as hard as it is on the evening of October 19th, marking four months without you, Max embraces all that love we carry around. Our house is now full of dog toys and someone waiting right at the door full of joy when we get home. Someone who wants to walk around the lake when I can't take you in your stroller any longer. Someone who wants to sleep next to your sister. Someone we all can rally behind. Someone who simply wants to be,
Sweet Jacob, I love you to the moon and back,
mom.
Tuesday, October 11, 2016
THERE ARE SIX OF YOU
Dear Jacob,
Life got busy around here, and I didn't get to sit down and write to you lately. It doesn't mean I don't miss you. You are never far from my mind. Sometimes it still hits me that you are truly gone. Sometimes when I see a picture of you, I can still sense your skin, your kissable nose, your hands, your perfect baby feet, and your thick hair. I can hear you vocalizing, especially those really loud vocalizations carrying all through the house when you wanted to shout from the roof tops that you were having a good day. I can hear a Jacob sigh, and it will hit my heart and mind at the same time. How lucky was I to understand the meaning of a Jacob sigh. It meant life was good. Good and simple. I can still remember the taste of wet kisses on your very lovable cheeks and tiny nose. You sometimes tasted a little salty from dried saline solution we used for your nose. And I can see you right in front of me as if you just had decided to escape for a little while.
As we're adding another month to life without you, I am trying to make sense of your too short life. And sometimes it is like lightning striking from the sky. We found out from one of your Mito doctors that there are now six of you. With your discovered Mito gene, physicians around the world can test for your Jacob gene. Suddenly, you are popping up around the world. You all show similar symptoms of mitochondrial disease. With your discovered gene, your Belgian doctor was also able to discover related genes, and in that group, you are now about twenty known cases world wide. You were always beautifully rare. Slowly over time, there will be more rare "yous" in the world. It makes me a little happy that you contributed your part to mitochondrial research.
As fall has arrived, I have spent more time in your room. I sit on your couch, I put on one of your CDs. I hold your Minion pillow made by your massage therapist, and I let my eyes gaze over all your pictures surrounding me. It often bring tears. It often brings pain. It is my very own sanctuary.
I wanted to let you know of my special visitor coming all the way from Sweden. My magical friend Mari came to visit this past week. When you left us in June, she immediately asked when she should come and visit. It was tempting to ask her to catch the next plane, but I knew that I was going to need things to look forward to this fall.
Mari helped me through the loss of my mom when I was crazy nineteen. Every Sunday night, we went to the same restaurant and bar in Stockholm drinking white wine and eating peanuts. She listened as I talked about my mom until there were no more words. She stood by my side even when I wasn't the best of friends. She never gave up on me. She was my rock.
27 years later, she was standing at DIA (Denver International Airport) with her suitcase full of Swedish candy and coffee to simply be here for me. She's the kind of friend who speaks what I am just formulating in my mind. Laughter and sincerity are all wrapped into one. I got to talk and talk about you, and I got to have fun and laugh at the same time. She visited with you at the top of Flagstaff, and understood the importance of your very own place. Her presence in my life is beautiful and a secret medicine. She simply fills my cup.
I'm grateful for her friendship as fall comes with so many memories of you.
Sweet Jacob, I love you to the moon and back,
mom.
Life got busy around here, and I didn't get to sit down and write to you lately. It doesn't mean I don't miss you. You are never far from my mind. Sometimes it still hits me that you are truly gone. Sometimes when I see a picture of you, I can still sense your skin, your kissable nose, your hands, your perfect baby feet, and your thick hair. I can hear you vocalizing, especially those really loud vocalizations carrying all through the house when you wanted to shout from the roof tops that you were having a good day. I can hear a Jacob sigh, and it will hit my heart and mind at the same time. How lucky was I to understand the meaning of a Jacob sigh. It meant life was good. Good and simple. I can still remember the taste of wet kisses on your very lovable cheeks and tiny nose. You sometimes tasted a little salty from dried saline solution we used for your nose. And I can see you right in front of me as if you just had decided to escape for a little while.
This picture popped up on my screen saver, and I could sense your soft skin, the weight of your arm and hand, and your tiny little fingers.
As we're adding another month to life without you, I am trying to make sense of your too short life. And sometimes it is like lightning striking from the sky. We found out from one of your Mito doctors that there are now six of you. With your discovered Mito gene, physicians around the world can test for your Jacob gene. Suddenly, you are popping up around the world. You all show similar symptoms of mitochondrial disease. With your discovered gene, your Belgian doctor was also able to discover related genes, and in that group, you are now about twenty known cases world wide. You were always beautifully rare. Slowly over time, there will be more rare "yous" in the world. It makes me a little happy that you contributed your part to mitochondrial research.
As fall has arrived, I have spent more time in your room. I sit on your couch, I put on one of your CDs. I hold your Minion pillow made by your massage therapist, and I let my eyes gaze over all your pictures surrounding me. It often bring tears. It often brings pain. It is my very own sanctuary.
I wanted to let you know of my special visitor coming all the way from Sweden. My magical friend Mari came to visit this past week. When you left us in June, she immediately asked when she should come and visit. It was tempting to ask her to catch the next plane, but I knew that I was going to need things to look forward to this fall.
Mari helped me through the loss of my mom when I was crazy nineteen. Every Sunday night, we went to the same restaurant and bar in Stockholm drinking white wine and eating peanuts. She listened as I talked about my mom until there were no more words. She stood by my side even when I wasn't the best of friends. She never gave up on me. She was my rock.
27 years later, she was standing at DIA (Denver International Airport) with her suitcase full of Swedish candy and coffee to simply be here for me. She's the kind of friend who speaks what I am just formulating in my mind. Laughter and sincerity are all wrapped into one. I got to talk and talk about you, and I got to have fun and laugh at the same time. She visited with you at the top of Flagstaff, and understood the importance of your very own place. Her presence in my life is beautiful and a secret medicine. She simply fills my cup.
I'm grateful for her friendship as fall comes with so many memories of you.
Sweet Jacob, I love you to the moon and back,
mom.
Wednesday, September 28, 2016
HOUSE OF CARDS
Dear Jacob,
I have had a bunny sitting under your cherry tree all afternoon. He stretched out long, and was so content in the fall sun. I am wondering if you came to visit me. This is where you would hang out on the front lawn while I was working.
When my mom was about to pass away from her terminal cancer and I was too young to lose her, my uncle twirled his beard and tried to comfort me. He talked to me about our house of cards and how we now had to build a new house of cards as my mom would soon leave us. Her fallen card would completely shake our perfectly balanced structure of playing cards. I like that analogy, and I do like the TV series House of Cards.
My House of Cards once again has been shaking to the ground with you leaving us, and we all three are trying to rebuild a new structure of playing cards. We are trying to find that new balance to the best of our abilities.
It has hit me lately that I am only playing with three cards instead of four. Each card holding our family together in that perfect balance. I do struggle to find a perfect balance of life, and finding the good in life again. I know not everything was perfect with you in our lives, but in a way it was perfect, because it was our complete family.
I have also had to wrap my head around the fact that living under such extreme pressure with you for ten years has set its' mark. My firefighting skills and being under extreme stress became my normal. My brain is triggered that way after ten years. I don't know any other way to live. When I wake up during the night, I would have absolutely no problem to start my day at any hour of the night. This is what I did for ten years. I would wake up multiple times every night, and do whatever care was needed or deal with any emergency. That is what my brain knows. This is what I know. You know what, I miss my old life. I miss it because it is what I know. I miss it because I got so very good at it. I miss it because you were my reason to live life that way.
I realize that it's not necessary to live life that way right now, and that I need to retrain my brain. As part of rebuilding our House of Cards, I also need to train my brain for down time, creative time and sleep time. Things that I didn't always have in my life for so long. For a whole decade. It might all sound good to you, but I am scared. I am scared because there are things I don't do well. I know in the down time, I will find grief and I will find you. I know that my tendency is to go, go, go, but I am going to try to carve out down time. I am going to find time to sit in your room, talk to you, and feel the love we so deeply shared. It sometimes hit me how deeply connected we were despite you not being able to communicate all your needs and wishes. I think because of that, we connected on a deeper level where my whole body knew what you needed and what you wanted. It was sometimes a hard place because sometimes I couldn't quite figure out what you needed, but overall I sincerely miss that deep connection. A connection beyond words.
I am hoping with down time that I can find sleep. It has been really hard for me to find good sleep lately, and having to wake up before the sun is up isn't helping. I am not giving up on this one, but it's going to take some time to retrain that brain of mine that never let me sleep for more than a few hours at a time.
Lastly, I want to find more of my creative side again. I was so good at making all pieces of life happen night and day, and I was going strong for often 16-17 hours straight each day. When I finally sat down by the end of the day, I collapsed. My brain was fried. I am hoping that you will guide me here. My writing is one thing I want to make time for. It always makes me feel really good, and it helps me process my grief. I want to make more time for spontaneity and creativity, and I hope with down time, I will find that side again.
I will look for your signs and your guidance as I try to find a new rhythm of life again and building our House of Cards once again. I also believe you will always have a Card in our family. It might be that invisible Card that somehow holds us all together, watching over us, and keeping us moving forward. I need that Card.
Sweet Jacob, I love you to the moon and back,
mom.
P.S. This article was my inspiration: http://www.forbes.com/sites/laurashin/2014/01/15/7-types-of-experience-your-brain-needs-to-function-at-its-best/#5fab783f6181
I have had a bunny sitting under your cherry tree all afternoon. He stretched out long, and was so content in the fall sun. I am wondering if you came to visit me. This is where you would hang out on the front lawn while I was working.
When my mom was about to pass away from her terminal cancer and I was too young to lose her, my uncle twirled his beard and tried to comfort me. He talked to me about our house of cards and how we now had to build a new house of cards as my mom would soon leave us. Her fallen card would completely shake our perfectly balanced structure of playing cards. I like that analogy, and I do like the TV series House of Cards.
My House of Cards once again has been shaking to the ground with you leaving us, and we all three are trying to rebuild a new structure of playing cards. We are trying to find that new balance to the best of our abilities.
It has hit me lately that I am only playing with three cards instead of four. Each card holding our family together in that perfect balance. I do struggle to find a perfect balance of life, and finding the good in life again. I know not everything was perfect with you in our lives, but in a way it was perfect, because it was our complete family.
I have also had to wrap my head around the fact that living under such extreme pressure with you for ten years has set its' mark. My firefighting skills and being under extreme stress became my normal. My brain is triggered that way after ten years. I don't know any other way to live. When I wake up during the night, I would have absolutely no problem to start my day at any hour of the night. This is what I did for ten years. I would wake up multiple times every night, and do whatever care was needed or deal with any emergency. That is what my brain knows. This is what I know. You know what, I miss my old life. I miss it because it is what I know. I miss it because I got so very good at it. I miss it because you were my reason to live life that way.
I realize that it's not necessary to live life that way right now, and that I need to retrain my brain. As part of rebuilding our House of Cards, I also need to train my brain for down time, creative time and sleep time. Things that I didn't always have in my life for so long. For a whole decade. It might all sound good to you, but I am scared. I am scared because there are things I don't do well. I know in the down time, I will find grief and I will find you. I know that my tendency is to go, go, go, but I am going to try to carve out down time. I am going to find time to sit in your room, talk to you, and feel the love we so deeply shared. It sometimes hit me how deeply connected we were despite you not being able to communicate all your needs and wishes. I think because of that, we connected on a deeper level where my whole body knew what you needed and what you wanted. It was sometimes a hard place because sometimes I couldn't quite figure out what you needed, but overall I sincerely miss that deep connection. A connection beyond words.
I am hoping with down time that I can find sleep. It has been really hard for me to find good sleep lately, and having to wake up before the sun is up isn't helping. I am not giving up on this one, but it's going to take some time to retrain that brain of mine that never let me sleep for more than a few hours at a time.
Lastly, I want to find more of my creative side again. I was so good at making all pieces of life happen night and day, and I was going strong for often 16-17 hours straight each day. When I finally sat down by the end of the day, I collapsed. My brain was fried. I am hoping that you will guide me here. My writing is one thing I want to make time for. It always makes me feel really good, and it helps me process my grief. I want to make more time for spontaneity and creativity, and I hope with down time, I will find that side again.
I will look for your signs and your guidance as I try to find a new rhythm of life again and building our House of Cards once again. I also believe you will always have a Card in our family. It might be that invisible Card that somehow holds us all together, watching over us, and keeping us moving forward. I need that Card.
Sweet Jacob, I love you to the moon and back,
mom.
P.S. This article was my inspiration: http://www.forbes.com/sites/laurashin/2014/01/15/7-types-of-experience-your-brain-needs-to-function-at-its-best/#5fab783f6181
Friday, September 23, 2016
WRAPPED IN LOVE
OH JACOB,
I have missed writing to you. I got sucked in to the busyness of life, forgetting to prioritize our time together. Tonight, I have an urge to write you, since I have missed telling you about life.
Your sister turned fourteen in the middle of busyness. I was a little worried how her first birthday without you would turn out. In all her life, you only missed one of her birthdays. It was the same year, Gemma got married. You were hanging at Children's with our friend Camilla while we were celebrating Gemma's wedding and Sarah's birthday. All other years, you were always home with her. I remember the year, Sarah decided you could come to her pool party and hang with all her girl friends. I know you had a good time, and you got to stay up way past your bed time. You were all smiles.
This year, I knew we had to do things a little differently, change things up a bit. We decided to go to Breckenridge for her birthday weekend. It was a good choice. The beauty of the mountains and the peaking fall colors surrounded us. We got to relax, swim, walk around town, and enjoy good food and company. I even got in a bike ride through Summit county. It got me to think of you a lot.
More than once, my mind wandered to our Breckenridge get away in October last year. Memories of you being in the outdoor pool, cuddling with you on the couch as we were taking in the beauty of the nature surrounding us, and simply having family time together. That vacation was on your bucket list, and I am so happy we did it when there was still time. We never ever saved anything for tomorrow, we always did things when the opportunity presented itself. How thankful I am for that today.
I think we have started a tradition. You will always give your sister a special gift. You should have seen her face when I gave her your gifts this year.
She opened this one first:
And then she got this! This is a true piece of you, a true piece of perfection:
This project started early August. I gathered all your favorite t-shirts and brought them over to our neighbor Charlayne. I found her on the mobile app Nextdoor. I told her our story, and she immediately understood the importance of this piece of art work. This was not just a bunch of t-shirts. Each of your shirt is a treasure, and tells a story about you. Each shirt is filled with memories and love. The shirts still smell like you. It's you hidden in the middle of fabric, bundle of colors, and softness:
I have missed writing to you. I got sucked in to the busyness of life, forgetting to prioritize our time together. Tonight, I have an urge to write you, since I have missed telling you about life.
Your sister turned fourteen in the middle of busyness. I was a little worried how her first birthday without you would turn out. In all her life, you only missed one of her birthdays. It was the same year, Gemma got married. You were hanging at Children's with our friend Camilla while we were celebrating Gemma's wedding and Sarah's birthday. All other years, you were always home with her. I remember the year, Sarah decided you could come to her pool party and hang with all her girl friends. I know you had a good time, and you got to stay up way past your bed time. You were all smiles.
This year, I knew we had to do things a little differently, change things up a bit. We decided to go to Breckenridge for her birthday weekend. It was a good choice. The beauty of the mountains and the peaking fall colors surrounded us. We got to relax, swim, walk around town, and enjoy good food and company. I even got in a bike ride through Summit county. It got me to think of you a lot.
More than once, my mind wandered to our Breckenridge get away in October last year. Memories of you being in the outdoor pool, cuddling with you on the couch as we were taking in the beauty of the nature surrounding us, and simply having family time together. That vacation was on your bucket list, and I am so happy we did it when there was still time. We never ever saved anything for tomorrow, we always did things when the opportunity presented itself. How thankful I am for that today.
I think we have started a tradition. You will always give your sister a special gift. You should have seen her face when I gave her your gifts this year.
She opened this one first:
Remember you're team Jacob t-shirt! We presented together at Children's about Team Jacob during an Awards dinner and we received much to our surprise these t-shirts from Amy. Do you also recognize your Minion t-shirt? You always looked stellar in your black and beige t-shirt. I think this was a gift from your grand parents.
And then she got this! This is a true piece of you, a true piece of perfection:
Remember when Sarah's volleyball club was cheering for you when you were sick in the hospital?
Selina's grandma made this shirt for Sarah. It had to join the quilt.
And this was your shirt from Selina's grandma.
Remember nurse Ana going to Carlo's Bakery, and getting you this shirt from Buddy? Just because you're so special.
Your Coyote Ridge shirt! We have so many happy memories from you sporting this shirt in school.
Your Miracles for Mito & Team Jacob shirt put together! It's all about awareness.
and some of your favorite Minions!
Your bike shirt from nurse Libby! She got you an extra large size, so you wore this shirt for years!
This is our absolute favorite shirt! When daddy got to dress you, he always picked this shirt. The striped shirt in the back is my favorite shirt.
And this is the back of your quilt when Sarah needs to have you close to her.
See how your Minion shirt was incorporated!
And look how perfect it turned out on her bed!
Sweet Jacob, Sarah asked us to have cake with her on the couch watching Friends on her birthday evening. She and I were both cuddling under your special blanket, and it was so very special. It completed her birthday. Thanks for being part of her special day.
I love you to the moon and back,
mom.
P.S. If anyone wants to get in contact with Charlayne for a memory quilt, please let me know. I would gladly share her information. She's simply fantastic.
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