GRACE SONDE
Motherhood & Lifestyle
MY JOURNEY WITH SICKLE CELL
At what age did you experienced your first sickle cell crisis?
I can’t pin point my first sickle cell crisis but my first memory of a sickle cell crisis was when I was about 5yrs old, it was in my knees. I remember the pain being so bad I couldn’t stretch my one leg. It lasted about 2 days, but during those two days I remember hopping around to the bathroom and spending most of the day sleeping.
How was your childhood experience living with sickle cell?
My parents did their best to make sure I had an as normal as possible childhood. I went to school, we went on family vacations, I participated in sports and all the other things that come with a normal childhood. However, my mother made sure to teach me to know my limits and not to over stress myself. She also made sure I was always up to date on my medical exams and medications.
Did you plan to have children?
I always knew I wanted to have kids, but growing up I wasn’t sure if it would’ve actually been possible.
Would you say there was a great support system for you growing up? (Including family, friends, healthcare practitioners)
With sickle cell it is so important to have a support system and more so now that I am a mother. Growing up and now, my support system is my family. This is because my older brother also has sickle cell so he understands all my struggles. My parents and my older sister also played and continue to play a big role in my support system because they have seen me at my worse and they know my best. Lastly, my husband we are partner's so we know how to lift one another up and make up for what the other is lacking.
Did you ever worry that your future children could inherit the sickle cell disease?
No, because I knew that whoever I decided to have children with couldn’t have the sickle cell trait. So I was very careful during my dating years.
Did you experience any fertility problems before conceiving?
No. I conceived shortly after getting married.
What medication were you regularly placed on prior to pregnancy?
Folic Acid and hydroxyurea.
What medication were you on during pregnancy?
Prenatal vitamins and Folic Acid
Has becoming a mother changed you positively?
Absolutely. Being a mother has also made me stronger.
What systems have you put in place with your family and friends if you ever required medical attention?
I am blessed to have a husband who is very involved and can keep the household running if I am sick. Also my daughter is very close with my siblings and my parents so if ever they have to assist my daughter doesn’t feel uncomfortable having them around.
Has having sickle cell made you a spontaneous or scheduled person?
By nature, I am a scheduled person. I don’t think that has to do with my sickle cell but I'm sure it doesn’t hurt my health condition either. Being that sickle cell can be in unpredictable I do find myself flustered when I get thrown off my schedule because of it.
How important is a support system for a mother with sickle cell?
Very important, and I mention it every time I talk about motherhood and sickle cell. My main goal is for my daughter to not miss out on things because her mother has sickle cell. So in order for that to happen I have to have a support system in case I am sick she is still able to go to school on time, go to playdates, dance class, and be read a story at bed time.
Do you have any hopes for the future of science and sickle cell disease?
My main hope is for sickle cell to gain the awareness it needs. So many people don’t know about it, or if they do they only know very little. My hopes are also that they come up with a non-invasive cure for the disease.
What do you think is lacking or can be improved within the sickle cell community?
The sickle cell community lacks transparency. I feel like not enough people are talking about it and bringing awareness surrounding the disease.
What is one thing you would tell someone trying to conceive with sickle cell to prepare for or to prepare to do?
Number one; not be scared and to trust God and your medical professionals. Also make time for ample rest, stay hydrated and have a positive mind set.
TOP TIPS & ADVICE
What advice and tips would you share with a mother living with sickle cell balancing motherhood, being a wife, business woman and everything else?
I would like to tell her… YOU'VE GOT THIS. As sickle cell warriors we are used to working twice as hard as our peers. Also, find ways to reduce your stress and have systems in place for when those difficult days come.
CONNECT
Instagram: https://www.instagram.com/gracesonde_/
Email: Hello@gracesonde.com