chronic illnessfaith

Friday Words of Faith – Riley’s Story

I am completely honored to have Tiffany Cox as a guest writer today! I “met” her through the awesome organization, The Fight Like a Girl Club where she first shared her daughter’s story. I was so completely moved that I invited her to share it with you guys. It is truly moving and inspiring. Grab your tissues before reading ahead!


If I ever had any doubts about whether God truly existed or if he really heard my cries, those were all erased the day Riley was diagnosed. I witnessed the healing hand of God. Next week we celebrate four years of LIFE with Riley that wasn’t promised to us. I’ve been asked before if this story is made up. Trust me, I WISH! Riley was diagnosed on October 28, 2006 with a rare blood disorder. There is no cure. She had a hemoglobin level of 2.9 and near heart failure. In the past four years, Riley has underwent surgery, chemotherapy, blood transfusions, medications, tests and numerous hospital stays. We’ve been told by doctors that ‘medically speaking’, she shouldn’t be alive. She IS and God has given her one heck of a testimony along the way!


I have seen many things in the past four years since Riley’s diagnosis. Most of them have been while walking the road we are on. I have watched my daughter fight to overcome so much, beating the odds, SURVIVING, fighting back from setbacks and complications. She is my inspiration! Being on this journey has been a true test of faith. It’s not always easy to trust when you are afraid. You want so badly to have control of the situation and force the outcome you want.


I can still remember every detail of that day. I will be forever haunted by the image of Riley laying in a hospital bed with tubes and machines all around her. I remember the look on the doctors face when he had to tell us that he didn’t think that she would make it through the night and the shock on his face when she did. To this day, I still can’t look him in the eye. I remember the kind words from a chaplin who was sent in our room to ‘prepare’ us for our daughters death. I remember the fear and confusion. I remember being told that if a blood transfusion didn’t begin to work on Riley that there was no hope for survival. I remember the anger. I remember the rocking chair in Riley’s ICU room where I spent many hours watching her sleep and begging God to let me take her place. I remember the empty feeling.


Have I questioned God’s purpose? Yes. Have I been angry with God? Yes. But even at the darkest of times when I have felt alone, God has been there. I may not have felt it at the time, but looking back, I know that it was God who got us through the tough times and still gets us through those times today. I went through a period of complete bitterness. I felt that as a Mom, I had let my daughter down. I couldn’t fix the ‘boo boo’ with a kiss or protect her from fear or pain. I had no control of the situation. I questioned God as to why he would allow a child, MY child to go through so much pain and sickness. Instead of praying, I argued. I wouldn’t go around other Mom’s who had ‘healthy’ children. I grew more bitter when other people would boast and brag on how blessed they were. I distanced myself and wrapped myself around the negative, never looking for the ‘good’ in Riley’s situation. To me, nothing good could come out of a situation where my daughter was having to fight for her life. It just didn’t seem fair!


But, you know what? Good DID come from Riley’s situation. We have been taught life lessons that can’t be found in text books or taught in a classroom. I have learned to be grateful, truly grateful for the little things. Not a day with her is taken for granted! I get overly emotional on the first day of a new school year because not only is Riley growing up, she’s beginning a new chapter in her life. One that I’ve feared we wouldn’t get to see. I cry each time Riley reaches a new milestone, rather it be losing her first baby tooth, learning her first cheer or getting a new ‘big girl’ haircut. So when I randomly have emotional breakdowns, bare with me 🙂  I don’t take birthdays very lightly because I know that every year is a gift. God’s gift. God had every right to tell us ‘no’ when we prayed for him not to take Riley. Instead, he has entrusted us to raise her and allowed us to witness HIM through the life of our child. For me, there is no greater honor! Am I overly protective? You better believe it! Do I worry alot? Of course (I’m a Mom) and because we know that just because she may look okay on the outside, doesn’t mean that everything is okay on the inside. We are never guaranteed that tomorrow we won’t be back to where we were four years ago and honestly, it scares me. This disease is rare and we know that she can relapse at any time, but I also know that God knows what’s in store for Riley long before we do.


You can ask Riley about angels and she’ll tell you she sees them. I get chill bumps when she describes how beautiful they are in great detail. You can ask Riley where she was when Mom and Dad were at her bedside those first few critical nights in the hospital and she’ll tell you she was being rocked by Jesus in a rocking chair. I wasn’t allowed to hold her, but she was being held. Some may call her (and me) crazy. I believe her with all of my heart. I believe that she has witnessed and seen things that only others can imagine. I know that even though her body isn’t healed completely from disease, that God has helped heal me as a christian, a wife, a mother and so many more can say the same. My daughter has taught me more then I could ever have taught her about life. I believe she has been given insight and wisdom far beyond what some can comprehend. I believe God has a plan for my Riley!

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3 comments on “Friday Words of Faith – Riley’s Story

  1. Nihlaeth says:

    There’s so much power and hope in your story… You’ve gone through something horrible and you turned it into something positive, I admire that.

    I wish you many wonderful years with your daughter.

  2. Jessica says:

    I believe many near death see things on the other side that we don’t.

    This is different…but we had a 3 month old baby in the NICU pass away last week…a little later another passed. These girls were born exactly 6 days apart, with the exact same diagnosis…both lived 3 months…and died exactly 6 days apart. They were “roomies” and I swear they spoke to each other in their own way and when the one died…she called to the other to come to heaven and leave her suffering. We all believe that…all 80 of us nurses that work on my unit. It was something so beautiful, yet heartbreaking….in a way magical. We never came across that specific anomaly at our hospital and had anyone live. I will never forget those angels.

  3. Judy Jeute says:

    What a truly powerful story. Thank you for sharing.


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