When my newborn baby was put into the Neonatal Intensive Care Unit (NICU) for a week, I was hit by a powerful force of immense strength and love I didn’t know I had. My husband and I already were blessed with our firstborn son who did not have any health concerns. While we love both of our children very much, it wasn’t until our second son was diagnosed with severe hemophilia that we really learned what being a parent meant. My husband, Alex, recalls that moment over a year ago and says, “After seeing Christian stuck with tons of needles while he was in NICU, I felt helpless that I couldn’t rescue him.” At that moment I felt the depth of a parent’s love.” Christian didn’t stop bleeding for days after circumcision and during those dark days of suffering and confusion, we came together as a team of hope for him. My husband and I, despite being sleep deprived and scared for our son’s well-being, had to lean on each other and became a more unified family.
We are better parents today because we learned how to stay calm in the midst of chaos and questions. I, as a mother, am more mindful everyday than before hemophilia impacted our lives. I have learned, and am still learning, the balance of keeping a close eye on my sons while letting them explore and develop on their own. When my son falls down or gets hurt, it pains and worries me but I have quickly learned the importance of keeping calm. Thus, I am a better parent because I can handle “emergency” type situations and scares with a comforting and calm demeanor towards my babies.
Because of hemophilia, I am a more diligent researcher in all medications and treatment. I am a proactive advocate for my son, and ask many questions until I fully understand our options. Like other hemophilia moms, I quickly took control of making informed decisions in all aspects of health for my children. I have learned to confidently tune into my innate intuition or “gut” when it comes to my children.
I am better parent because I take my own health seriously and find inspiration in staying active and healthy for my kids. I want both of my sons to live long, healthy lives and be active in cycling, swimming, yoga, music, art – whatever keeps them fit and happy. I realize they will follow my example of going to the gym and eating healthy. I know that my son with hemophilia will have less bleeds if he is encouraged with confidence at a young age to run and play instead of sitting out.
I understand my son will have limitations and may endure more pain than others around him, but I am blessed his life will be full of support from his parents. I am a better parent because I openly admit my fears and am willing to reach out for support.
Because of hemophilia, I learned to be less judgmental towards other parents and children. I have more hope and faith in my own (and my son’s) ability to be aware of our body and ability to heal. I am more patient in disciplining my baby who occasionally throws a typical 2-year-old tantrums.
Most of all, I am a better parent because hemophilia has taught me to be appreciative of every second of everyday. There is not one day that goes by that I don’t thank God for both of my sons. Of course I am thankful for a day of no bleeds. But even through the suffering, I am thankful for the hope that hemophilia brings to our family and how it has forever impacted our lives positively. We continue to grow as parents, and as a family, in our strength as individuals and as a family. Hemophilia has taught us resiliency – and for that, I am a better parent.
Samantha lives in Texas with her husband, Alex, and boys, Adoniah (3) and Christian (almost 1 year old).
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.