When a mother fights for her children, there's nothing in the world that can hold her back. This love, which protects above all else, is the most beautiful and inspiring in the world. Today, I share with you the testimony of Aline, the mother of Ana Luiza, who was born with scoliosis, has undergone 15 surgeries so far, and is fortunate to have this wonderful mother who sheds tears in secret from her daughter. Who hasn't been there?
I have a daughter who was born with a 38-degree curvature in her spine. An early-onset scoliosis.
I went to ten spine specialists in her first year of life. And they all gave me the same speech: "Mom, your daughter has severe early-onset scoliosis. It's a surgical case. But for now, there's nothing that can be done because of her age, except to monitor the curve's progression."
I didn't accept anything the doctors were saying, and I took my daughter to a specialized scoliosis physiotherapy session every week. I also went to Bogotá with the help of friends and family to find a high-quality brace suitable for her age.
I spent sleepless nights holding her in my arms just to get her to sleep while wearing that brace. It was a very tough period. Imagine, a 1-year-old baby wearing a rigid brace for 23 and a half hours a day. In theory, she was supposed to take it off only for bathing. In practice, she cried all day trying to get rid of it.
I had to opt for the surgery involving the placement of lengthening rods when she was 2 and a half years old, and it was the most difficult decision of my life up to that point.
I have anxiety attacks for months before each surgery. There have already been 15 surgeries so far, and there are still a few more ahead.
I have these same crises months later too. During the postoperative period. With the return to school activities. And knowing that another surgery is coming months later. Yes, the surgical treatment for early-onset scoliosis is quite challenging. Many surgeries. Many hospitalizations. I've lost count of how many tests we've had so far.
I bother the doctor constantly. And he always treats me with all the love and patience in the world. He knows how difficult it is to deal with the treatment. And I know how much he has been special and necessary in our lives. I say I don't just have confidence. I'm really dependent on him!
I occasionally bother the anesthesiologist. And she reciprocates with immense love for my daughter. Who is a bit hers too. Every 6 months at least, haha.
I complain when an internal stitch escapes. I talk to it alone. Yes, I've reached that level.
I've developed a hospital phobia. But I face them all with her. I've made it my second home. I've developed a friendly and grateful relationship with those professionals in white who are always there for us.
I get nervous when she screams to change the dressing. And she screams a lot. Always. It's some sort of trauma. There's nothing I can do. No music, no conversation, no distraction can avoid this moment. So, I prepare myself mentally and go for it.
I look at her back every day in the shower. Did I say every day? Because it's really every day. I know the height of every screw, the position of the connector. The thickness of each scar.
I go crazy when she runs around. And plays and acts like a child. I work every single day to ensure that my fears interfere with her routine as little as possible. If I succeed, I can't really say.
I bother the teachers at school. I explain the same thing to them every year about her not carrying a backpack on her back, and I have all the support and assistance coming from them. In fact, they are an essential part of the whole process. They have always been with us.
I'm terrified of her falling. I don't trust her in flip-flops. That's a fact.
I'm always thankful, every day, for the health insurance. Because I am fully aware that without it, going through this would be much more complicated.
I am eternally grateful to God and to everyone for everything going as well as possible for her.
I cry in secret for every limitation. There are some, like the loss of the ability to bend, as her curve is thoracolumbar. But she adapted and never had problems understanding and accepting them. So, who am I not to act the same way?
I am immensely proud of every achievement. And there are so many!!! In these 9 years of treatment, with so many visits to doctors, so many tests, so many years wearing a brace, so many hospitalizations, so many times on medical leave, but also so many swimming classes, dancing, playing in the yard like any other child her age. Even after surgery, with two rods and 8 screws, she faces life with lightness. And she teaches me that we face and overcome obstacles! - Yes, I am Ana Luiza's mother, and therefore, a MOTHER OF SCOLIOSIS.
Do you want to discover more inspirational life stories? Check out all the testimonials we have published here on this blog.
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