My husband and I are parents to a beautiful little girl living with Sickle Cell Disease. Our job is to love her, raise her to walk in her destiny, lift others along the way and live a quality life. In truth, she is raising us and lifting us in our destiny as parents, advocates and people wanting to see a cure for this disease.
Sickle Cell Disease is a severe and hereditary blood disorder that changes our regularly rounded red blood cells to a crescent shape. Red blood cells carry oxygen throughout the body and when they are crescent shaped they become stiff, clog blood vessels and damage organs. In the SCD (Sickle Cell Disease) Community, this is known as a “sickle cell crisis”. A crisis can occur anywhere the blood flows. Consider the enormity of that and you can understand how detrimental this disease is.
What can cause a crisis? Some of the general triggers are extreme weather changes, extreme heat/ cold, infection, stress and dehydration. As the years progress we’ve noticed that consecutive rainy days can also bring on a crisis in our daughter, as well as developing a cold.
Sickle Cell Disease is often unpredictable. You could be doing all the right things and still find yourself in the midst of a painful crisis. I’ve learned through journaling, detailing our activities for the day, whether it was strenuous, did our daughter stay hydrated and well nourished, was she adequately dressed, layered, not too hot, not too cold … and still a crisis would occur.
Typically, winter has been difficult on our daughter. The temperature changes and the fact that she is exposed to larger crowds during the school year along with students sharing colds can be rough on her. Because her immune system isn’t as strong as other students, we encourage her to always wash her hands. This was very difficult during the pre-kindergarten and kindergarten years where children are constantly in each other’s space and sharing every germ imaginable.
Our winter preparation consists of staying warm by layering, coat, sweater, hat, gloves, scarves, staying hydrated, well nourished and well rested. We encourage her to listen to her body and enjoy being a kid. Thankfully her school understands the magnitude of this disease and they work with us to provide a great education and let her move at her own pace. Did I mention that she is an Honor Roll Student? Well she is. She’s bright, beautiful, blessed and a blessing, that’s a whole lot of B’s for an A+ kid.
Every school year we provide a packet to all of our daughter’s teachers and school administration. The packet explains Sickle Cell Disease and how to assist our child. I encourage parents to not only do this, but to speak directly with teachers and school administration. If you need to put plans in place to protect your child’s education in the form of a 504 Plan or an IEP then I encourage you to do so. Start early with teaching your child to advocate for themselves. They should feel open enough to tell their teachers when they are not feeling well and should have access to their water bottles and rest room opportunities throughout the day.
Last year the Make-A-Wish Foundation honored our daughter’s wish to go to Disney World. It was in that moment that I realized something I had been pushing to the back of my mind. It is the part of SCD that no parent wants to talk about and even now I cannot bring myself to do so. I can only tell you that the trip was spectacular, that our daughter smiled on a whole new level and we watched her bloom.
We have had rough days, numerous hospital stays, transfusions, tears and countless missed events. Along the way you grow as parents, you learn what some of your child’s triggers are. You keep an emergency bag packed for the hospital, you keep all doctor’s numbers on speed-dial, you travel with water, pain meds and clothing for layering. You travel but not without finding out which hospital is close to where you will be staying. You may feel tense when you have to RSVP to an event, knowing that you may not make it. You don’t easily turn your child over anyone considering a crisis may strike. You accept that other parents think you are “over the top” with your preparation until you explain that this is your normal and being prepared is what helps your family.