In loving memory of Reid Dale Miller
Randon Speakman Miller
Reid was born on December 14, 2001 after a perfect delivery and birth. A few days after we brought him home, I had the mother's intuition that something was wrong. At that time he had a terrible rash and a poor appetite and he seemed so pale to me. I had been crying non-stop all day, but it seemed everyone was reassuring me he was fine. I finally called his doctor's office that night and the pediatricain on call wasn't very helpful, so I ended up taking him to the emergency room. There they discovered his platelet count was very low and we were sent to Vanderbilt Children's Hospital immediately. His platelet counts continued to drop and no one could figure out why. After 3 months of seeing many doctors, running every test known and spending one month intubated in ICU (due to complications from a liver biopsy), we went to the Children's Hospital Of Philadelphia (CHOP)for help and a second opinion. There he was diagnosed with complete bone marrow failure- never seen before. All his blood counts eventually dropped and his marrow was filling up with scar tissue. He went to CHOP for a bone marrow transplant. His transplant was on 4/22/02 and his 4 year old sister, Reagan, was the donor. His 8 year old sister, Riley, was the official hand holder. Reid did great during the transplant. He became a new baby who took off developmentally and had a smile that could melt a room. His new marrow worked beautifully and we were about to be discharged home when he developed a rare heart complication. At this time we still aren't sure what happened but he left us here on earth on May 24th 2002. The website provided us a means to update daily and turned out to be a demonstration of the care and love shown to us by so many. It visually demonstrated and allowed so many to see the power of prayer and to realize that no matter what happens, we always have hope.
On January 18, 2004 after much prayer and a huge leap of faith, we were given an angel here on earth, Reese Addison Miller. She has brought so much healing although never a replacement for sweet Reid.
In December of 2005 we were very suprised (but thrilled) to find out we were expecting another baby. On July 19th at 35 weeks, I went to Vanderbilt for an ultrasound. My pregnancy had been going well and all previous ultrasounds looked reassuring that everything was ok. I had noticed his movements slowing down and immediately after this ultrasound they decided to take him quickly by c-section as they could tell something was wrong with his blood flow. He was born at 1:20 in the afternoon, had to be immediately intubated and transfused. They knew at birth that he had the same condition as Reid. It was the most shocking and heart breaking news to hear. Once again, this is our journey of loving and caring for the newest angel in our family. We hope he will be able to have a bone marrow transplant soon and his biggest sister Riley is a perfect sibling match.
Sadly, that day never came. Randon had many setbacks and went home to be with his big brother and Jesus on September 23, 2006. It was later revealed that Randon indeed had Acute Myeloid Leukemia. Our hope would be to discover the faulty gene responsible for breaking our families' hearts and to know weather our precious daughters could be carriers for this never seen before genetic bone marrow/leukemic condition.
Thank you for visiting our page and reading our story. This continues to be our thoughts and expressions on our lives of becoming survivors after enduring heartbreaking loss.
Monday, November 9, 2015 7:55 PM CST
I can not believe it has been three years since I updated this site. I almost could not get in-I tried every password I could think of - no way to reset-and finally, something worked.
I can't imagine this site being gone-so many memories here. I can't bare to go back and read most of them-but there is so much comfort just knowing they are here. Whenever I do go back and read some things- I feel in some ways that I don't even know that person. Sometimes I cringe at some of the things I said. It feels in a way like a lifetime ago and yet yesterday. My heart still aches and I don't even completely understand how we all got through it all. I'm just so thankful I had this source of therapy to get me through it all- it helped me fall in love with two things - writing and reading. In 2001, when my sweet baby boy was born. everyone was just starting to have an email address- no smart phones, no high speed internet- just an email address. I often wonder how much easier our situation might have been if I could have texted and had a camera phone- there is even a caringbridge app now! I even remember having to wait hours sometimes to find the one computer at the hospital free so that I coulld post an update. I'm still amazed at how many people cared and waited for those updates.
I stopped updating this site as life moved on. Now, I have a facebook, instagram and twiitter. Oh yeah, there is linked-in and snapchat too. Who doesn't know what is going with me anymore? Well, and for that matter- who really cares? We pretty much know everything about everybody- down to the pictures of their food. We are in information overload. I find it fun most days knowing and seeing what is going on with everyone, but yes, it's often too much. Too much time watching everyone else, and too little time enjoying each moment here. And we all wonder, how much of that is even real?
So, how are we doing? Life is fantastic! I still love my husband, adore beyond measure my daughters and I love life! Yet, I still have so much pain, sadness and disappointment. It's not everyday- its just kind of there. Life is so different because of the experiences, just as everybody's is as life takes them on the unexpected and undesired journeys.
So many years later, am I satisfied with how we all took our circumstances and experiences and used them for good? Most days. I have some disappointments maybe even regrets. At the time my heart was so broken, i let my professional life go- I never renewed my speech pathology license and let everything expire. However, I cherish all the time I had at home and with my children. I thought I would never sweat the small stuff again and be grateful for everyday, but I'm often right back in the rut. I still know it doesn't matter- none of it matters. That hasn't stopped me from over reacting, losing my cool a few times, really getting mad at someone over something silly, speaking without thinking and being hurtful. I'm as human as I've ever been perhaps. But I am still different, still changed. I absolutely love the musical Wicked and the song "For Good." Definitely because of all five of my precious children, the heartache we experienced, the heartache we saw others' experience and the people who cared for us and extended us amazing love and grace - I have been changed for good.
I was definitely sent on an unexpected journey- an interrupted life. Most of us are at one time or another. There were always streams in the dessert, rainbows and sunshine on our face to get us to the next day. It's not the life I would have chosen, but I'm so grateful for all I have and for my family. I love my family so much, not for what they've accomplished, but because I sincerely love who they are and the joy they give me.
I"m not sure if any of those books I wanted to write will ever get written. I"ve written many thing in my head during many sleepless nights tossing and turning. Perhaps the thoughts were better left in the book of my head. I'm not sure. But I"m trusting that even though many years have passed and memories have faded- I'll continue to try and follow God's plan for me!
So, I'm thankful that the memories are still here! It's a source of comfort. As for answers, we are still praying. So far, it's been disappointing news as they search to find the gene and see if my girls could be at risk of the same- a thought that is extremely painful-but hope is always what keeps everyone going. So, please keep your heart full of love, and thank you for honoring my boys by being aware that anyone can have an impact- anyone can make a ripple in the pond of life!!
Read Journal History
Patient Room: We are all home!!!
alexslemonade.org alex's lemonade fund foundation home page
www.marrow.org info on becoming a bone marrow donor