Sunday, October 15, 2017


Dear Jacob,

One of my favorite hours of the week is five to six pm on Sunday evenings. Joakim and I are changing into our sweat pants and we go to yin yoga. We lay on our yoga mats and stretch for an hour. It's often very painful. Sometimes I just want to give out a little scream from a too tight hip flexor or glute muscle. Sitting in an uncomfortable position for several minutes forces relaxation of my mind, and focus on my breathing. You, Jacob, often come and visit me during this hour. I sometimes leave class with tears in my eyes.

This past Sunday, you came and visit with me. I had flashbacks from the last month with you. And in the middle of a deep glute stretch, I had a realization. You were dying in front of my eyes during your last months of life. I refused to see it. I had an explanation for every time you were more tired, and needed that extra one or two naps. You who never spent time sleeping your entire life.

I had an explanation for your edema that got so very bad in the end. I massaged your legs, I massaged your arms, I massaged your hands and feet, but there was just so much extra fluids your body couldn't get rid of. I can still feel your little hand in mine. In the end, there was this worry about how much you were able to pee each day. We measured every diaper. How happy I was when your fluid intake matched your fluid output. There was a sigh of relief when the day ended on plus minus.

I had an explanation for your increased seizures. They were subtle. You were sometimes in and out of them. Maybe there was yet an infection? Maybe your body was under more stress? Maybe, maybe, maybe. There were more questions than answers.

Your second to last hospital stay, I wasn't sure we were ever going to take you home. You had been sleeping for days, and there was no true explanation why. With some medication changes on board, you decided that this was not going to be the end, and we took you home one final time. I will always remember the happiness of rolling you through the atrium of the hospital and out in the summer sun.

We made it at home for six whole days. It was six very stressful days. We were constantly checking labs and talking to nephrology for your kidneys. We struggled to keep your fluid balance in check. We struggled with seizures. We struggled. We really struggled. But we pushed on as we always had done. I do remember your last weekend at home. I remember taking you to the pool for one last time in the water, something you loved so very much. We had a good time in the pool, and then you fell asleep in the shade holding your dad's hand. It was a perfect moment, and I will cherish it forever. Your friend Brittany came to visit. She read to you, and in the middle of the story, you did decide it was time to take a little nap. Nevertheless, you did enjoy story time in the backyard on your last Sunday. Probably my strongest memory from that weekend is Sunday evening. Due to you taking several naps throughout the day, you had no interest in going to bed at night. Sarah was off from school, and the two of you decided to watch Kardashians on your iPad in bed. As I was getting your room ready for the evening, you were suddenly so alert and normal again, and vocalized with your sister as she was holding you tight, laying behind you in bed. It was one of those moments you want to stop time.

Tuesday evening, we were back in the ER. If someone would have said you had another five days to live, I am not sure what I would have thought. It was not at the forefront of my mind that Tuesday evening when I packed our bags to take you in once again. What I did know is that we couldn't take care of you at home with all your edema, kidney problems, and seizures. We watched you like a hawk, on the phone with doctors all the time, and still not feeling we could help you.

We spent the last five days of your life in the PICU. It started out with everyone thinking you had been hit hard by an infection. Scary diagnoses were thrown around. In the middle of possible diagnoses, we thought there might be a reason for why you have acted so very sick lately. It gave us hope, something to hang on to. I also remember at some point that Joakim and I looked at each other in the PICU and we were both thinking how can we safely care for you in the home? Your care had gotten extremely difficult, and we were responsible for monitoring and medicating your very sick body at a level that felt scary at times. We were of course both up for anything as we had always been, but we definitely knew you were very sick. We talked about end of life. We talked about what would happen to you. I felt I was always close to tears at the same time as I was trying to stay strong for you and everyone else.

That last Friday is probably the day when it truly sank in. Your time on earth was nearing an end. You had been sleeping, only waking up for short periods of times, for three days. Some of your labs were still through the roof, but with no explanation. Our favorite attending sat down with us, and said that she was concerned your brain had gotten worse. That could explain the lab values. She wanted to give you the weekend to show her she was wrong, and on Monday we would do another brain MRI. I knew what this all meant. I knew we would do a brain MRI on Monday. I knew the MRI would be much worse. I knew we would be faced with questions of end of life. I knew, I knew, I knew. This is the one thing I had dreaded your whole life, having to make the decision no one should have to make.

But you decided differently. You decided it was your time. No more brain MRIs, no more labs, no more interventions. Your time had come. And once again your showed us who was the boss. You decided, and for that, I am forever grateful.

Sixteen months later, I can start to see how the puzzle pieces fit together at the end. I don't think I could take it fully in as it happened, but your last month we knew. We knew even as we continued to fight.

Sixteen months later, it's easy to get caught up in the busyness of work and life. I don't like when that happens because I don't want to take life for granted. I don't because I know not all of us can take every breathe for granted. This weekend, Colorado has been absolutely stunning. Wherever you look, you see fall beauty. We would have painted pumpkins and gone for a walk in the sun. So, I made it that perfect weekend with family and friends coming in and out, picking pumpkins, working in the yard, and going for long walks. I stayed true to you.

Sweet Jacob, fall is especially hard without you. It was your season. Thanks for sending me butterflies and colorful leaves lately.

Jacob, I love you to the moon and back,


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