Crystal knows the daily struggle of living with sickle cell as a warrior and as a mother. She and her daughter Kyla both have sickle cell. Crystal manages the duel role of being a caregiver to a child living with the challenges of sickle cell, marriage, and the responsibilities of home while experiencing the daily strain of living with sickle cell herself. She’s dedicated to her family to the fullest showing the sickle warrior spirit of not giving up. Her face lights up when sharing about her family; she smiles ever more brightly in talking about her daughter. Crystal and her daughter may have a connection in both battling sickle cell, but they are bonded deeper by their purpose through giving one another strength through their love. It was a pleasure to meet her recently at the Sickle Cell Community Consortium 4th Annual Family & Patient Symposium in Atlanta. Her story is truly inspiring to all mothers. Crystal and Kyla both show the embodiment of what it means to be sickle cell warriors.
P.F.M. Motherhood and sickle cell can be very complicated with risks during pregnancy. What went through your mind when you knew your expecting a beautiful baby girl?
C.D. : I was excited because they told me I couldn’t have kids, but I was “Super Nervous” because I didn’t want to go in crisis while pregnant.
P.F.M. : How did you cope in knowing that your daughter would share the same diagnosis of sickle cell as you ?
C.D. : I was heartbroken and devastated! I would’ve never bought a child in this world fully knowing what sickle cell does to your body, but I also felt like God blessed me with her so he would bring us through. I stayed motivated by always telling my self this is your blessing, how are you going to handle it!
P.F.M. What are some of the challenges that you have to battle with both of you having sickle cell?
C.D. : I try to be positive and do my best to not be in a pain crisis at the same time as her. We both suffer from fatigue often. School and work are daily struggles. I always tell her we are team, and we must do this thing together.
P.F.M. : What do you admire most about daughter’s personality that makes her special to you?
C.D. : Kyla is very calm and mild mannered, and she has a “Great” heart. She’s very passionate about what she believes in. She treats people how she wants to be treated. I’m honored that she is very respectful, and that’s important to me. Kyla is a very well rounded child! It makes me proud to go places, and get compliments on her behavior. People seem just love her so. I had a nurse tell me that I’m doing a great job in raising her. I’m a super proud mommy!
P.F.M. : What do you do to help her cope with the hospital stays and various doctor appointments?
C.D. : We believe in when we’re sick than we’re sick. However, when we are feeling good we do exactly what we want to do. We have fun in everything we do! We travel. We enjoy having a lot of mommy and daughter family time. I always allow her to express her feelings to me, so we talk through a lot of things. If I can’t help you, I can always get someone that can.I can I over compensate for things such as like for school . I bought an extra pair of shoes. It’s my mommy thing because I feel so bad when she’s in crisis.
P.F.M. : What advice would you have for another mom who has sickle cell disease and is balancing family? Make time for yourself, build a support team & do fun things that makes you happy.
C.D. : Communicate with your spouse partner or significant other. A lot of times they don’t really know how we feel. Laugh often it keeps a healthy mind.
P.F.M. : Who are your biggest supporters that help you stay encouraged through the unpredictable pain with sickle cell?
C.D. : My sister and my cousin she are my biggest cheerleaders. My spouse always has my back! I’m encouraged because I know the pain and the endurance of this thing won’t last forever! I always think about what I’m going to do when this pain is over. I always miss my family when in crisis and in the hospital so I try to push through it quickly but cautiously.