“I had a lot of anxiety that I was sick and that people were placing fault or blame on me.” – Mily, hemophilia mom
Winter can be a beast in New Jersey. Taking a moment to admire the beauty of snow calms me. However, it is crystal clear that some things do not calm us, and it is out of our control. I wish the snow could kill the coronavirus in the air across the US. Coronavirus, not on our planet!
It began on Dec. 29, 2020, and we were waiting for the year to end. We all went through so much this year. I remember that day clearly. I was not feeling so well. My body was feeling very achy. I felt pain in my lower back. I told my husband “something isn’t right.”
I thought it might be a UTI as I clearly described the symptoms over the phone with my doctor. I quickly took the medication that was prescribed. I tried back rollers, Tylenol, heat pads and ice pads. Nothing changed. Later that day, my husband was congested and was getting chills. Our son was having migraines and a low fever. For a few days, we rested. “It has to be the flu,” I kept telling myself, because we do not go anywhere. I teach from home and my son learns remotely. My husband only goes to the grocery stores. However, I did go to my mom’s house on Christmas Eve. New Year’s Eve arrived and we were sick dogs. Fever, chills, headaches, body aches and loss of smell. I was worried but continued to tell myself it was just a flu.
My return date to work from winter break was Monday, Jan. 4, 2021. I decided to take off that day so my family could get tested. We got tested and the results arrived on Jan. 6, 7 and 8. We all tested positive. I was devastated. On Jan. 7 was when we received the results for our son. During this time, I was teaching and had heated up sweet potatoes for lunch. I timed it on my phone right before my class ended. My husband told me my son was positive just before the timer went off and my heart dropped. I was devastated and shocked. I used my Marc Anthony T-shirt that I had on and wiped tears from my face and remained calm.
We followed the rules. We complied. I was supposed to protect my son. My son was quiet about it when he received the news. At this time, we were recovering but concerned, because my son and I have hemophilia. I didn’t know what was going to happen. This virus was too new to read any case studies. I told my sisters and mom. They were also devastated. I didn’t sleep for a few days. I would check up on the guys to see if they were okay. I would constantly check my son’s breathing while he slept. I was still angry at the same time on how this can possibly happen.
My mind wasn’t there, and I felt guilty after testing positive for COVID-19. I had a lot of anxiety that I was sick and that people were placing fault or blame on me. It was mostly in my head, but that was a depressing feeling. The emotional struggles continued. We were quarantining and were terrified that we will get vulnerable family members sick. I felt guilty because I did my best to adhere to all of the rules. But I continue to tell myself, “I am too blessed to be stressed. It could be worse – I could be on a ventilator.”
I did not think that 2021 would bring this to us. What a way to start the new year with this news. Ever since March 2020, we complied and followed the rules. We were focusing on healthy new beginnings as we enter the new year. Things finally registered after a few days. We were given by doctors and family a cheat sheet on COVID-19 a list of things and how to boost our immune resilience and physical mindset: vitamin D, vitamin C, zinc, green tea and tons of water were on the list. We also received urgent care instructions: Tylenol, soups, Gatorade and quarantine for 14 days as per CDC guidelines.
All this created a heightened level of stress, anxiety and depression. We were lacking many things already: the hobbies, the gatherings, friends, family, shopping, dining, going to the gym, and other activities to reduce the stress. I did go to my mother’s house to get out of my house with masks on. I learned to count my blessings.
Again, 2020 was over and we were so happy because we want to continue to reinvent ourselves during challenging times. We have some ideas besides disinfecting the whole entire house, like always. I even posted in the kitchen a list of things to do around the house such as cleaning doorknobs, disinfecting the remote controls and so forth. I later read an article about the symptoms and how it spreads, key symptoms, the diagnosis, treatment, recovery time, and preventive measures. It also said to wash your hands frequently, don’t touch your face, wear a mask (maybe more than one), maintain distance from one another outside or inside the home and avoid close contact with infected people. Again, I was too blessed to be stressed.
I had to discontinue some of my medications because the doctor said it may cause blood clots. I even stopped infusing my son for over a week and a half. I was scared because this virus was so new and there were no case studies on how it would affect people with hemophilia. But the hematologist reassured us that everything was fine and that we could continue with the regimen.
I followed the important protocols and contacted the HTC for my son and myself. I called my son’s high school and informed the principal. At the time, I was still sick but managed to make all the calls. I needed the time off to reflect and get well. I called the pharmacies, primary doctors, school, work and informed them about the situation. He needed the time to make up any missed assignments with extended time, of course. I continue to be stressed and didn’t sleep. I had to stop watching television with all the news related to COVID-19.
The good news is that we received so much support during quarantine. We received groceries, gift cards, much love in text messages, and calls from family. However, I did not want to be judged. Some folks questioned, “Did you wear a mask? Did you wash your hands? How many parties did you attend?” I felt horrible when bad comments were made and did not receive support from some folks. I knew I was being judged. I heard comments like, ” Don’t get me sick!” “It’s your fault!” I thought I would hear comments like, “Do you need anything? “How are you feeling?” Something positive. I decided not to tell a lot of people until now.
I thank God my son is on the 504 plan which protects him from any absences due to his bleeding disorder, which is very important. I also received a 504 plan as an adult and family leave which also protects me from numerous absences from my job. Navigating the emotional challenges of coronavirus while caring for my child who has hemophilia has been tough. Some of us unfortunately do not want to talk about it. It was very stressful living through a pandemic, and it makes it more challenging when you, the parent, have coronavirus and you have to take care of the family as well. Again, there is uncertainty in the world today and my child with hemophilia does not do well with the unexpected changes. However, I am truly blessed because things could’ve been worse. I thought I had to go to the ER that Saturday, but I toughed it out and continued to follow all of the protocols.
These additional challenges did arise because of our hemophilia but I learned relaxation strategies: deep breathing, music, a funny movie, and meditation to keep ourselves occupied and busy. Staying positive was key. I would have to say again that the coronavirus has taught me that it can happen to anyone. I have to be extra careful, remain home, and continue to comply. All of three of us are now doing well. Thank God.
I did turn on the news, read the latest headlines, and saw that people were experiencing physical illness, mental health problems, and economic hardship. Many people were suffering because they were grieving the loss of their loved ones due to the pandemic and still continues. I count my blessings that we are okay. I love this quote, “Snowflakes are one of nature’s most fragile things, but just look what they can do when they stick together.” You can interpret any way you would like -Anonymous
Mily lives in New Jersey with her husband, Harry, and her son, Omar.
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 the 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.
