It’s been three months since you left this earth to be with the Lord. Every single day, it’s been harder and harder. You would think as time passes by, it would get just a tiny bit easier but it’s not. It’s still fresh. Still new. The wound still hurts.
Your father and I talk about you every single day. There’s always a constant reminder of you everywhere. Whether it’s a toy or music or how you would play with your baby sister. Your baby sister. Your dear sweet baby sister Chloe. She’s 7 and a half months old and you would’ve LOVED playing with her at this age. She would respond to you or try to play with you. She would try to get Shiro but he wasn’t having it. We just really wish we could see you grow up with her. You guys would’ve been such best friends! My two beautiful girls.
Sometimes we wonder how you’re doing in heaven. Are you having a good time? Are you showing everyone your awesome dance moves? We just hope you’re happy and not a care in the world. Some days have been hard for me where I wish I could just be with you right now. Some days are just bad thoughts where I imagine myself gone on this earth so I could be with you but reality really sinks it and reminds me that I still have your father and your baby sister to care for. It’s hard knowing my first born isn’t here anymore. You were the one that taught us how to be parents for the very first time. First for everything! Not only were you were the first one to be born in our family but also the first one to leave. It was only three short years of your life where you couldn’t live up to your potential. My oh my do you have SO much potential. You’re so sweet, kind, caring, awesome dance moves, and always making sure mommy, daddy, and baby Chloe are first before you even though you’re the one that’s going through really tough times. Where you’re constantly woken up at night every 3-4 hours for vitals, where you constantly have to have meds in your NG tube as well as formula because you didn’t feel like eating, or when you constantly had MRIs, CT scans, or even PET scans. Oh and let’s not forget the bone marrow biopsy and lumbar puncture that you would have to go through. What’s even worse… you constantly have blow-outs every single day because you couldn’t help it with all the crazy meds you’re taking.
When your father and I had that meeting with Dr. Baker about your autopsy report… my heart just aches. I can’t believe EBV (Epstein-Barr Virus) truly have taken your life. You didn’t die because of bacterial infections or any other crazy virus. It was EBV. The EBV that was in your body had turned into malignant. A virus that’s in a lot of human beings, 95%! But yours had to turn into like a cancer. Can you believe that? A virus turned into cancer. Your father and I pray that the tissue samples that Seattle Children’s had save could help future patients that may have what you have. We pray that there’s an EBV vaccine available so they wouldn’t have to go through what you been through. But they told us you have EBV T-cell Lymphoproliferative Disorder of Childhood with secondary HLH. We were informed that there were only 17 cases published in literature which makes you 18. We just couldn’t believe it. None of them survived unfortunately. There was just no cure. We pray that there is one in the future to cure this horrible disease.
Baby girl… we just want you to know that we love you SO much and miss you every single day. We miss kissing you, holding you, playing tea parties or color/paint with you. We also miss dancing with you. We missed watching your favorite movies like Zootopia, Sing, Wreck It Ralph, or Toy Story. We miss listening to music with you. Did you know when the song “Feel It Still” by Portugal the Man comes on, your baby sister stops what she’s doing and just listen to that music? I think she knows and she’s with you. Your father had posted some videos he had saved on his phone to your page and a lot of them you would say “Imma show mommy” or “Watch mommy!”. It breaks my heart every time I see it. Miss hearing your voice. Your sweet little voice. We pray that we will be reunited one day and live forever together. As always, to infinity and beyond my angel.