Not much to update in terms of Annika's cardiac world. I know that's a good thing, and we are so very grateful. Her next cardiac cath and biopsy won't take place until January--we pushed the date back a little to try and consolidate medical costs. Physically, the only real concern we have right now is her keloid scarring. It's super gnarly, and insurance is giving us a hard time about covering dermatology at Primary Children's. It's hard to show a picture without it being indecent, but this one from her chest incision gives an idea. There's similar scarring from her ICD, as well as substantial scarring near her groin from the ECMO cannulas and a big "button" on her belly from the chest tube. Just one glance and it's pretty obcious that these scars aren't just cosmetic.
In terms of mental health, I think things have been harder for Annika. Being a 13 year-old girl is hard. Being in middle-school is hard. Functioning with ADHD is super hard. Now add to that the trauma of experiencing a heart transplant at such a pivotal age. I don't know that any of us can really understand what she's going through. Heck, I don't even think she understands what she's going through. But whatever it is, it's a lot. The emotions can be overwhelming at times--there's so much anger bubbling beneath the surface. She suppresses it pretty well at school, but at home it explodes. Annika's therapist through PCH (Dr. Kristina) mentioned that for kids, it's common for depression to look more like rage than sadness. Whether it's depression or anxiety or just teen hormones, it's hard to watch Annika ride this intense emotional roller coaster. No matter what, we want her to know that we are here for her and love her.
Even though this transplant was medically necessary for Annika to survive, it's been challenging for her to recognize how very sick she was. As a minor, she didn't have a lot of autonomy or say in the decision. There are moments where she feels like this was done "to" her instead of "for" her. She's talked about wishing she never had a transplant. That's fair. After all, the whole thing is totally unfair. It's not really equitable that her body should be covered in scars and her life meted out in med doses while her peers rarely think about their hearts.
It's also not fair that Annika's transplant journey should be straightforward while some of her transplant peers are being forced to battle so much harder. Our friend Allie is facing severe transplant rejection and Camilo is back in the hospital with sick lungs. That's not fair either.
Most poignantly, it's not fair that her donor's life ended so abruptly. My heart still aches every time I remember.
The grief is popping up much more frequently now that we are rounding the corner toward Christmas. December 14th--transplant day. The day we celebrated hope for life while another family grieved their loss. December 23rd--the day Annika's heart stopped and our lives turned upside down. November 20th--the day I prayed and asked God if a transplant was absolutely necessary. November 21st--the day my prayer was uncomfortably answered as her heart stopped again. Both God and her medical team answered yes, we were running out of time.
Life isn't fair. And life isn't easy. But life is still good. We choose to move forward with hope. We are currently in the process of planning our Wheeler family Christmas. This seems like it should be joyful, but the truth is that I feel a bit anxious about it. Jason, Annika and I haven't celebrated Christmas day with the Wheelers since 2018! In 2020 Eli got Covid, 2022 Annika was on ECMO and 2024 was transplant. Here we are at 2026 and I'm feeling so jittery and superstitious that something will happen. Do I really think God organizes the universe to disrupt our holiday plans? Probably not. But still, we feel what we feel.
Despite the anxiety, what I mostly feel is grateful. I'm grateful Annika is so stable. I'm grateful for the supportive network of family and friends that have carried us through hard times, year after year. I'm even more grateful for all the people who continue to support Annika every day, even when she is a little teenage angsty. I'm so thankful for her donor and their family--their gift means everything. And is it okay to say be vulnerable and say that in a weird way, I'm even a little thankful that we haven't connected quite yet? I'm beginning to better understand why the transplant social worker encouraged us to take time. Honestly, I don't think Annika would be in the very best place to meet her donor's family at this very moment. Just figuring out her own identity and who she is and who she wants to be is pretty challenging. I don't know if her donor family will ever want to connect, but my prayer is that if they do, Annika will be feeling grounded enough to express the love she has for her very special heart.
