Hi my baby boy,

Today was super busy. As soon as I got up I had to shower and then go to the DMV to get the registration renewed for the van. Once I got back, I got Ellie and we drove down to Honolulu for her neurologist appointment that took two hours. We then left and stopped at the commissary so she could eat sushi for lunch. Then we went to the pharmacy to get the prescription filled, but couldn’t wait around because we had to go to Daniel K for meet the teacher. We met Ellie’s teacher, talked to Mrs. Holmes, then left to go back and pick up the prescription from the pharmacy. After we finally got home, I got to eat and sit for an hour and then we had to drive down to Pearl Harbor for gymnastics and ninja class. We stopped at the NEX commissary on the way home and finally got here at 8:30pm.

Yesterday wasn’t as busy, but I see a trend with things. If I’m really busy and trying to get things done outside of the house, I am good and can just get it done. However, once it slows down on busy days, I just break down. It’s like I’m paying for having to hold it together for that long. Once things slow down I am just left to sit in my grief.

Ellie officially got diagnosed with epilepsy today at the neurologist. With her “unprovoked event” last year and the abnormal EEG, that gives her the diagnosis. I expected it after everything that’s gone on. So I feel more relieved than worried. They already put her on medication for seizures. We know the precautions. While we were there, they took some DNA to send to get tested for the same gene abnormalities you had. She has to see a cardiologist to get an EEG and echo to check her heart because of the heart abnormality you had. Everyone in the family is also going to meet with a geneticist and talk about the next steps. That’s what was discussed today and the plan that was put into place moving forward. We had kept Ellie in the dark about everything because she didn’t need to add more anxiety to everything she already has, but she obviously found out today. There were a lot of tears and questions if what happened to you will happen to her. Luckily, Ellie was able to ask all the questions she had to the doctor. It seemed like once the doctor answered all her questions that she was a little better. The crying has been on and off since then.

I’m relieved that Ellie is on medication. I’m happy we can be proactive with the rest of the family. I’m absolutely furious though thinking maybe you’d still be here if someone would have caught it and you would have been on medication. You’d still be here with me. Where did things fall through the cracks?

I oddly think that if I keep just wishing you back here that maybe at one point you will come back. I can’t live the rest of my life without you, can I? I cannot survive with this much pain for another fifty-ish years (I know, I’m being optimistic here). What the “f” am I supposed to do?! I held my necklace with your ashes today and said “here’s my son, this is what I have left”. It sucks. Saying it sucks doesn’t even begin to describe it. The worst possible thing ever? I don’t want to say that because I feel like it’ll jinx me and the universe could take someone else. After the past few months I kept telling myself “life can’t get worse, things can’t go downhill from here, only up” and look what happened. The unthinking, unfathomable, worst freaking nightmare happened.

I wanted to see Mrs. Holmes today so we were creeping around the upstairs of the building looking for her room. We found it. That classroom automatically just felt welcoming and very homey. She had the jellyfish “class pets” she said that were named Jelly and Jello. I saw and heard the thirty second dance break button. I also heard the nice little “doorbell ring” that signals the class to clean up. Isaiah, I cannot tell you how thankful I am for that woman. You spent a lot of your last few months with her and I know you were loved, cared for, respected, and happy in that classroom. She showed me the poem that you wrote her and left on her desk when she had come back from visiting the mainland. I took a picture of it. You are honestly one of the sweetest little/big humans ever. The love and care you showed other people was amazing. I am so proud of the young man that you were and could not imagine what you would accomplish later in life.

I had a lot of hopes and dreams for my life before, but lost focus of them once I had kids. You guys became my focus. Since losing you, I’m able to look back at myself and try and work on that. However, it seems like no matter what I do after this, it won’t matter. I won’t truly be happy because you won’t be here. How do I look forward to a future without you. Honestly, having only three children running around with me seems like so little. In my opinion, it’s such a small group, even though some people would never have three or more kids. I loved our chaos. I thrived in our chaos. So did you and your siblings.

I wish I could see you, hug you, and kiss you. You were taken from us way too early and we weren’t ready to let you go. Please watch over us. Maybe come visit? I love you more than anything, my baby. Goodnight and sweet dreams.