Bluebonnet season brings back memories that make my heart heavy
Reflection is often bittersweet for parents of children with chronic illness
It’s bluebonnet season in Texas. The state flower crawls across the hillsides and along the roads, bringing a vibrant blue to the landscape. People flock to the most prominent patches to sit among the flowers and capture pictures. It’s a Texas tradition.
The last time I took pictures in a field of bluebonnets before moving to New Mexico was when my youngest son, Caeleb, was only a few months old. In the spirit of bluebonnet season, I found this beautiful picture of him. I vividly remember the day.
I gently placed Caeleb, who was in the middle of a serious nap, in the sea of flowers and snapped a picture of him with his hands above his head. Looking at the picture over 17 years later makes my heart heavy.
The devastation of hemophilia
Caeleb, the child my doctors said I’d never have, came into the world as one of the biggest blessings of my life. Unfortunately, my life was shattered when he was diagnosed with severe hemophilia A, just like his older brother, Julian. Deep in my soul, I knew that Caeleb’s journey would be different from his brother’s, yet I didn’t realize the pain and suffering my sweet son would endure.
Ports, factor allergies, needles, post-traumatic stress disorder, hospitals, target joints, physical therapy, ankle and knee braces, ankle surgery, and an inhibitor are just a drop in the bucket of his journey. I had no idea how devastating hemophilia could be in a person’s life.
I want to go back and tell my bluebonnet baby that life will be difficult. I want him to be prepared. But more than anything, I want him to understand how much I love him, and to know that I’ll be by his side every step of the way.
Part of me also wants to apologize. I think most mothers experience feelings of guilt when their baby is born with a genetic condition. In my case, I needed a long time to accept that the hemophilia wasn’t my fault.
When I had Caeleb, I heard through the grapevine that some people thought I was out of my mind to have another child. “She can’t handle one kid with hemophilia. What is she thinking?”
But I wanted to expand my family. I would’ve done everything possible to get pregnant, even if I’d known all I know now.
Blessings of a bluebonnet baby
Having Caeleb in my life has been the greatest learning opportunity. I’ve experienced a fierce love I never knew before. So many consider caring for a child with a chronic condition full-time work. I agree — to a point. I do it because of the depth and breadth of the love I have for my son. So many don’t have this kind of love and would travel to the ends of the earth to experience it.
I’m blessed to walk alongside Caeleb through the tears, excruciating pain, hospitalizations, and surgeries, including those to come.
Parents of children with rare and chronic conditions are not superheroes. We’re not unique. We’re not put into this world by God or a higher power because it’s our calling to care for a sick child.
Parents of chronically ill children do our best to love our kids and advocate for their every need. It may take more energy and attention, but our love for our children is stronger than any bond imaginable.
Many parents of healthy children are amazed to see us stand up to doctors and advocate for our children. I’ve been asked hundreds of times, “How do you do it, Cazandra?” And my response is always the same. I do it because I love my son. You would, too.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.