I have seen many things in the past four years since Riley’s diagnosis of Autoimmune Hemolyic Anemia. 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 a lot? 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!

Tiffany Cox

6 thoughts on “Meet Riley – Fighting Autoimmune Hemolyic Anemia”

  1. Irene Bushaway says:

    I envy you your faith. My daughter has to girls with NPC and I cannot believe in a God. I wish I could then I may see a reason for this. I am glad for you and riley though. xxx

  2. Barb says:

    Fabulous encouragement! Is it possible to pass my e-mail on to Tiffany Cox? This is one of my favorite of all the patient stories leading up to Rare Disease Day!

  3. Hugh Hempel says:

    Yes Barb! I will definitely pass your e-mail on to her! Thank you for your support!

  4. Hugh Hempel says:

    Your daughter and grandchildren are in my prayers. I want you to know that I care – And because I’m a hugger – lot’s of hugs for all of you.

  5. Madeleine says:

    Amazing story of strength, hope and faith. The part about Jesus holding Riley on the rocking chair hit me hard! 7 years ago I was in a bad car accident, was in and out of a coma, had no memory or comprehension of anything, yet my family tell me that one evening early on in ICU I just came to and told them that I saw Jesus and he told me I’d be ok. And I am!!!

    I’ve never been an overly religious person, so for me to say that at that time brings me enormous faith. Keep the prayers going, have faith and God bless x

  6. Fred Olds says:

    I often wonder how it is that things happen. How I ended up here at Riley’s story. How angels talked to a little girl, and ended up talking to me. People say God has a plan for everything. But God help me I do not understand.

    I had conversations recently with two cancer researchers. Both had personal confrontations with cancer of rarer varieties. They were stunned to find how far behind current standard of care was for their particular disease compared to the research they were aware of for lung or breast or colon cancer. The result- they started foundations to assist patients with those cancers.

    Coincidence can be a convenience to explain the extraordary. We look at signs all day,and by coincidence of our trajectory and those signs we turn; we sign; we stop. But we look for signs,as well. A sign of hope,omens; something that will give us some meaning despite our experience. I can’t help but believe that there is more than coicidence in two cancer researchers being where they were and changing the course for those diseases. And today, coicidence is far too random a possibility that I run across a little girl whose angels reconfirmed my faith when my faith was fading.

    God bless you Riley. Contiue to be brave. Say hi to your angels and thank them for me, too.

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