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Dear Trisomy 5q,
I wish when my daughter was diagnosed, you would've wrapped your arms around my shoulders and let me know things would be okay. Instead, you gave me sleepless nights and a whole lot of tears.
You made me wonder of my capabilities as a mother, and if I could be good enough for that special journey we were taking together. You made me doubt myself and gave me feelings of guilt, like I had done everything wrong for my child to end up with something rare.
I was prepared for the heart issues. I had known about it since she was in my belly, I had accepted it after many tears shed, and I was somewhat prepared for all the surgeries and procedures needed. I had cried, I was mad, I feared the worst, and I had asked God to protect her. I held my belly tight every night with the hope that things would be just right.
But I wasn't prepared for you, rare diagnosis. You didn't warn me; you took us all by surprise. You have absolutely no cure and you can give my child way more than just a heart issue.
I wish you would've told me that things would get easier and then there would be days everything would go downhill.
Days I would hold my child with uncertainty about what the future will bring her. Days I would doubt if I am making all the right choices. Days I would just want to be a mom, and not an advocate, not making 10 calls a day to doctors and therapists and keeping everything under a schedule and driving from one appointment to another.
Days I wish I could just run away to a place where everything could be much easier for my child and forget it all. Simply forget you. Days where I wished I could just get a few more hours of sleep.
Trisomy 5q, you have changed me. I had cried for that child I “lost” for so long, when really I didn’t lose her at all. Today I know it, but I didn’t know that almost 3 years ago when we embarked on this journey as a family.
I have this child I’ve always dreamed of and she was exactly who she was meant to be all along. I couldn’t see too far back then; I had too many fears and mixed emotions. I feared how others would judge my child, how people would accept her when this world can be cruel to those who have special needs.
I was the one trying to change her, when clearly nothing I could’ve done would change her diagnosis.
You almost made me pity my own child. How could you?
Look at her. She is stunning, funny, and oh my, the cuddles she can give you. You never want to let go of her because she gives you the most love, and brings you the biggest joys. She is a bright and curious little girl. She has her daddy wrapped in her fingers, and knows she can get anything out of me.
She is a troublemaker who loves to get into things. She knows when she is not supposed to do something and gives that sassy look to see if can get away with things. She is energetic and loves the outdoors. She is just a toddler with extra challenges to confront, and she takes it all in with no fears. She has complete trust in us and knows we are always doing the best we can.
You made my little girl go through open-heart surgery while being so small and so fragile, but you made us come out even stronger than we already were.
You showed me the meaning of a true warrior, and I get the pleasure to raise her right here under my roof.
You made me fall down on the floor in tears because I really thought I couldn’t do it, that it was too much to handle, and all along, I wasn’t the one who needed to be strong – my little one had all the strength in her for all of us.
She’s guiding us through this journey, teaching us more about her diagnosis every day: how to treat some of the symptoms, and all the medication and special equipment needed.
Trisomy 5q, you might have put me down several times, I’ll give you that one. You might have given my child many health problems such as heart issues, a feeding tube because she can’t eat much, delays, and the inability to speak for now. You have given us many days of fears and tears while putting her in surgeons’ hands or by staying up all night by her bedside…
But you have given her the kindest of all hearts and the prettiest of all smiles. She’s a brave little girl who never gives up, someone who has the strength of a fighter, a little human being who is simply amazing in ours and many other people’s eyes.
We are proud parents of someone truly unique, and I am proud to share your story, your ups and your downs. Mostly I am proud of every milestone my child accomplishes, how she confront her struggles while keeping a smile on her face and shows us that even by carrying your diagnosis, she may be stronger than you because she is not defined by her trisomy. She is just who she is meant to be.