Four years, my biggest memories from four years ago are being very pregnant and just finishing up with my uncles benefit. For me, those two events go hand in hand together. In fact, I think my uncle messaged me the day I went into labor with Lua, we were joking about how it was time to set the eviction date for the baby. No one could have ever been able to guess what ended up happening. There was no sign anywhere that our baby would have any complications. Our first baby was a horse, as healthy as could be, why on earth would anything be wrong with our second child? I guess because that is how genetics work? Some times conditions pop up that have been possible to happen for generations but people before us lucked out, generation after generation. Then finally, it happens, and the mutated gene that has been being passed down and passed down finally shows its ugly face to the very unfortunate family who gets it.
I can go on to say but we were so blessed, we Were fortunate, we were the lucky ones, all to be able just to meet Her. All those things are true, but it doesn't take away how much it hurts to watch your baby struggle with everything in life and then pass away. I'm not a strong person because I handled all of it, take care of her, and the rest of our family, and try to live this normal life. No, that doesn't make me strong, that is me being forced into doing what I had to do because I wasn't given a choice. I don't know what that is considered, but that isn't being strong. I mention this because everyone always tries to give you the bright side when things are horribly bad, and sometimes there isn't a bright side to a situation, sometimes the situation just sucks. I believe it is human nature (to quote daniel tiger) to try to turn things around and find something good, but this situation was just crappy for everyone involved, and it hurts when people say we have been so strong. I didn't want this and I don't want to be strong.
Every year I think I will be able to handle her birthday better than the last, but then the week arrives and I am just as bitter and sad and mad/angry and anxious and hurt as the day she was born. I'm starting to think, maybe that just doesn't happen, maybe it isn't possible to take the day your beautiful daughter, that passed away, was born, and see it as a time to celebrate. Maybe I'm wrong, maybe many years down the road I won't have all these feelings, because I can admit, I do know the benefits that came from Lua. I would never deny that her birth was meaningless, that I regret it and wish it would have never happened. I know the beauty that came from it, but the loss hurts so bad I have to work very hard to keep the beauty part of it ahead of all the bad.
I know today what she accomplished in her short life, she lived and died to give her brother a great life. With out Lua, we would have never known the path we needed to take for Sol. If Lua was here, most likely there wouldn't be a Sol. I think that is why it is so appropriate for them to be named moon and sun. What is the moon with out the sun? What is the sun with out the moon? They needed each other even if it wasn't in this life together at the same time. Lua passed away at 7 months from a cold, from inflammation to the lungs, because she was not getting the air way clearance she needed and she wasn't getting the proper ventilation support. Sol is now 26 months, triple the age Lua was when she passed. Every time Sol is sick or something seems off, we think of Lua and we remember, we aren't doctors and if we are in doubt, he needs to be seen. It is horrible that we had to learn the way we did, but this is what she has given us. We don't know Sol's future, much like we don't know our own, but it is because of the struggles we had with Lua, we found the correct doctors for Sol and he has not made it to just his 1st birthday, but also his 2nd which in a condition like theirs, is a great accomplishment.
I also know May's great accomplishment in life already too, and that was loving Lua more than any sibling could love another. May was the best sister to Lua the world will ever see. I mean that too, I know it is easy to say that, oh so and so loves their brother/sister the most! But, she loved Lua literally to the moon and back. Even to this day. At times I envy May, she has the most genuine memories of Lua. She remembers all the good times and that she was her sister and she was SO happy to have a sister. She does remember mom and dad crying a lot but other than that, she doesn't remember that last morning, she doesn't remember seeing Lua's body lifeless, she remembers her smile and her eyes and that she got to play barbies with her, and for a short time she had the sister she always dreamed of having. I overheard May telling some friends that came over one day about the picture frame in her room that holds one of Lua's outfits. She explained to them that it was her sisters, but she died when she was a baby and it was just the most honest thing, and she could do it as though it was something common that happens. Life through a child's eyes I suppose.
None of this came with out consequences though. May does remember good things about Lua, but she struggles with anxiety frequently, maybe she would have regardless but it probably is a little worse than what it could have been. Also having Sol, and her being older and understanding more, she is more aware how fragile his life is and will frequently ask if he will die. We have all been opened up to a new world that is out there that you will never really understand or see unless you yourself are living with a child who is medically fragile. We hear about kiddos passing away a lot, and it is always so heartbreaking because I know how those parents hearts are feeling and I ache for them as they have to go on this new journey that can be so isolating. We keep moving forward, though, because we have to. Which is why, days like Lua's birthday or the day she died are so difficult. Time seems to stand still on these days, these days where intentionally or even unintentionally give the what if's. What would life be like right now if this didn't happen four years ago? How would she be? How would she look? Would she have had those terrible three's like her sister? Would she like Daniel tiger as much as her brother? As soon as those questions come into my head I try not to even indulge them and push them out as soon as they come because I can't even bare them anymore. I went from having to see her pictures and videos every single day, to not even being able to go on my downstairs computer because I know that is where all her pictures are and for some reason this new part of grief that I am in, I can't handle seeing her pictures.
She deserves her day to be recognized, though, I gave birth to her, she was here, she lived, she fought to live, she conquered things doctors said she would never do, she definitely taught us, me, a lot. My only wish... is that it wouldn't be so painful.
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