They say sometimes it takes a village to help raise children, for us that village included two beautiful women. But our village started before the diagnosis of cystinosis, in fact these two shared my family journey years before the birth of my children. Sometimes in life GOD will plant individuals in your life for a reason that you may not understand. For many the diagnosis of any chronic illness is devasting and often leaves many feelings alone and hopeless. For my family that factor was no different, and we are grateful to so many for their support and love. I (we) are appreciative of all who have played a role in our cystinosis journey and so pleased to have had these two encouraging women who we loved and adore.
My children’s Godmother- Lonya Moss-Walker who I love like a sister has always been there for my family and I. She was there when both of my children were born. For this cystinosis story my friend allowed me to express all my emotions (being shocked, feeling numb, and the disbelief). Throughout Victor’s journey I have never doubted that she would always be there for him. She has on several occasions informed Victor that his illness is just that and is not who he is. She is caring and often plays the role of a second mother, a wonderful auntie, and his biggest cheerleader of support. She is a great role model of strength and perseverance, and her influence on Victor has been to never give up. As a friend she has never let us as a family feel that sense of hopelessness again.
And lastly, I have to say that in our cystinosis village we have been blessed by an extraordinary woman, our pastor my friend Pastor Robin Hedgeman. Our Pastor has prayed for Victor and our family from the very beginning of his diagnosis. She has been very instrumental in helping us to recognized that GOD always has Victor in his arms and to believe and trust in him. She has helped our family understand that our church family is an excellent resource for support. In fact, she allowed us to host our first penny drive fundraiser at the church. When in the hospital she and other members from the church have offered spiritual guidance and support. Our pastor, my children’s unofficial auntie has even attended Victor’s graduation cookout. Often during youth Sunday when my children are the worshipped leader, they have expressed their love for our pastor. Victor has learned through her guidance that his faith and his loved for GOD that cystinosis will not stop him from achieving his goals in his life.
These two magnificent women helped lift me personally when I felt so deep in despair. Without their understanding and love and desire to help I am not sure where I would be as a mother, caregiver and advocate for cystinosis. I can honestly say that these two phenomenal women shared their strength and inspiration so that I could be a strong advocate for Victor and others with this illness.
In preparation for Giving Tuesday, we are honoring the “Great Givers” who’ve had an impact on our cystinosis community. If you’d like to learn more about Giving Tuesday and to make a donation, visit our event page.