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Omar was born in New Jersey, weighing close to 10 pounds. His second day at the hospital, I received the news of his hemophilia diagnosis. Initially, I felt isolated and alone and I did not know where to begin my search for information, assistance, understanding, and support. Despite that I had some knowledge because my father had hemophilia. I was not facing the music. As a new parent, I had different and mixed reactions when I learned my son had a chronic illness.

I was devastated and cried myself to sleep every night for months. Initially I was feeling angered, depressed, and guilty. I told myself that I gave birth to an unhealthy baby boy and felt it was entirely my fault. I asked myself, 鈥淲hy me?鈥澛

For a while, I worried that my husband would think our baby would be physically weak. For some time, I felt he resented and punished me in some way with a 鈥渘o more kids鈥 attitude. I felt frustrated knowing my son would never play contact sports such as boxing or football. My husband supported me by assuring me that our son will be the best in other things such as music, just like him. I knew from that day on, our lives were going to change tremendously. Talk about an emotional roller coaster! I began to realize that I was dwelling on something I could not control. I was wasting a tremendous amount of energy and time on something that was not my fault and there was no answer to why.

We keep a record on Omar’s injuries and infusions. My husband and I would infuse him when needed.聽While being infused, I would sit beside Omar and continue to say to him how proud I am on how patient he is. At the time it was extremely difficult to keep a hyper 10-year-old boy still while a needle is present.

Medication is always kept at home and at school. We always try not to overprotect. For instance, when he falls down, we encourage him to pick himself up. Our families and friends treat Omar normally. They are very supportive and absolutely adore him.

Omar has a unique personality. He enjoys building Legos, POPs collections, drawing, writing, reading, and playing the video game Fortnite. He is in the high school band 鈥 he plays the mellophone and French horn. He is also a DJ and play golf for his high school. He is now 14 years old.

As the years pass, my husband and I are more comfortable and have a better understanding of our jobs as parents of a child with severe hemophilia. Despite the hardships, Omar has been a blessing not just to us, but also to our family and friends. We adore Omar to pieces and will continue to try our very best to give him a normal life. I know it sounds clich茅, but I am a firm believer that God does not give us something we cannot handle. He knew we were able to take care of Omar with his condition.

We are still learning each and every day. As my twin would always say, 鈥淓xperience is the teacher.鈥 We sometimes lose sleep, our hearts skip a few beats, but our son Omar makes us smile every single day. Hemophilia by itself is manageable.

Hemophilia is here and it is not going on vacation.聽 I hope that our doctors, our scientists, and our researchers, continue to learn more about hemophilia and discover a cure. No one is perfect, just unique and in their own special way. I continue to share my story and hope to inspire many individuals to move forward despite any challenges they may face along the way. As of today, my son and I continue to make nice noise.

 

 

Mily lives in New Jersey with her husband, Harry, and her son, Omar.

*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 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.

 

 

 

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