Thank you to BlackMomsBlog.com for publishing my piece!
Spreading Awareness of Sickle Cell Disease through Education, Advocacy, and Empowerment
Thank you to BlackMomsBlog.com for publishing my piece!
I’ve asked each of our immediate family to share their own words about how Braden having sickle cell disease impacts them. Here are thoughts from one of his big sisters…..
I love these pictures of me and my baby brother. These are hands down my favorites for many reasons. When I left for college I missed out on a lot of things that you can’t see through a phone call. One of those things was my brother Braden. These pictures were actually the weekend of my grandfather’s funeral. And the first time we’d gotten to truly bond in years. In these pictures and that weekend he was a normal, carefree, CRAZY 😂, kid. It wasn’t until I actually moved back 2 years later that I saw the reality of his situation. Yes there were TONS of moments like these. But I’d never actually seen him in a real moment of sickness. And the first time I did it scared me. I still remember that unshakeable, feeling of helplessness. THIS is what families of children with Sickle Cell disease deal with every day. Fear, worry, sadness, helplessness, EVERY DAY. THIS is why my parents started The B Strong Group. THIS is why we share as much information and events as we possibly can. We want these families to know that we understand their struggles. We understand their emotions. No family should have to go through this alone. #SickleCellAwarenessMonth #TheBStrongGroup
Summer time is when the kids are out of school, their schedules are less structured, wake up times and bedtimes may be a little later but to the person with sickle cell disease there are additional things to keep in mind.
Summer time brings hotter temperatures (especially in the South). Those with sickle cell disease must be careful to not be in extreme heat conditions as this can cause complications including pain crises due to sickling.
People with SCD are at a higher risk of dehydration especially during the summer. Drink water and consider carrying a water bottle with you! Try to drink at least 10 cups of water and perhaps even more if you are planning to be extra active.
Swimming pools during the summer time can be so much fun but never swim in cold water. Extreme temperature change can trigger sickling and cause a pain crisis. Dry off immediately after leaving a pool.
Please be aware of the outside temperature. Also, be cautious of going from the heat outside to air conditioning inside. That can trigger a pain crisis as well. Have a blanket or jacket available to regulate your body temperature.
Be sure to eat foods that will help your body. Consider foods that contribute to hydration such as watermelon, broccoli, grapefruit and tomatoes. This can help supplement the fluids your body needs.
I know there’s so much to consider when you are managing a chronic disease but try to relax and have fun. Do things that make you happy. Remember that you are so strong and resilient and that you inspire so many people!
We were invited to share our story at an American Red Cross Blood Mobile presentation. Generous donors funded a bloodmobile for our local Red Cross office. We were happy to represent The B Strong Group and share our story to let the donors see who their generous donation impacts. We were able to meet the donors and thank them in person. We shared our sickle cell story and told the about our organization and the things we want to do. We want to support those with sickle cell disease and the other organizations that provide support for those with sickle cell disease. We are determined to promote the importance of blood donation to those with sickle cell disease. We especially want to encourage African Americans to donate blood because a lot of sickle cell patients need our type of blood, as well. Blood donation will always be a priority to The B Strong Group because a blood transfusion helped to save our son’s life. We will never stop advocating.
A look inside the new blood mobile that was donated to the Columbia Red Cross office.
Not too long ago, my son and I participated in a fundraiser for our local children’s hospital. We arrived for our portion of the event a little early and proceeded to check in to let the organizers know that we were there. I recalled greeting several people with a smile on our way to the check in table. Later on when it was time to do our interview, we were introduced to the interviewee and he said, “I saw you earlier when you came in and you had this huge smile. I had no idea that you were a mom of one of the miracle children we were going to interview. Why are you smiling?”
I immediately processed the question. I thought about how I was feeling at the time. I thought about how well my son was feeling at the time. We hadn’t had a hospital stay in a while and we were managing his illness very well. I then proceeded to answer our interviewee, “God is good! Why not smile?”
Trust me, this journey is not all smiles and I’m human but when I think of all the goodness that God has granted us, I must smile. It took me a while to get to this point. The guilt, the constant worrying, the “woe is me”…..I had to learn to deal with it all. It took time, prayer, sharing how I felt, listening to those who wanted to help me to get to this point of smiling. When I catch myself sliding back into the gloom, I check myself and my attitude, say “Thank you, Jesus” and I smile.
I smile because my God is good!
You must be logged in to post a comment.