Told by Ross's mom, Sheranne, with additional words from Ross.
Purpose, Power, Perspective and Perseverance are the ties that bind my (our) story. Seventeen years ago I was pregnant with my second child (I had lost my first to a miscarriage). The world was right and I already loved this child more than life itself. I would already give my life for this child and do anything for him. It was at my 20 week ultrasound that not only did I find out that I was carrying a son, I also found out that he had hydronephrosis of the kidneys. This means that they were holding fluid and not releasing any fluid back into the amniotic sac. This also meant that my son had no fluid to “breathe” in and help his lungs develop. The weeks went on and doctor visits continued every week and twice a week. We were strongly encouraged by the doctors to terminate my pregnancy. We sought out other opinions and traveled out of town to try and find answers. We did saline injections into the amniotic sac and also attempted to install a stint on his kidney while he was still in utero. This was a story in of itself because the “stint” which was ordered out of London got lost in the mail, then the 2nd one got lost in the hospital and then during surgery it was deemed defective. We were heartbroken and felt helpless but we were not about to give up, we were however about to let go. Let go, and Let God is what we decided to do. We gave up trying to control the situation and fix it ourselves. We trusted it to God to fix with His power! We had many family and friends praying for my son and on August 4th 2000 my son, ‘Jonathan Ross’ was born.
He was beautifully and wonderfully made. His lungs worked, and even though his kidneys were scarred and damaged, one of them was working too! His first year of life is mostly a blur, because even though he was alive and here, I was living in fear. Fear of if he was ok, fear of his kidney failing, fearing he wasn't growing, combined with all the anxieties and fears being a new mom brings. The one thing I did know was that Ross had a purpose and that God works for good in all things. The years moved fast and it became so much better as he was able to communicate and let myself and the doctors know how he was feeling. He was monitored with blood tests and doctor visits but for the most part I wanted to make sure he lived a normal life. I worked very hard to make sure he didn't feel like a sick child. I didn’t want him growing up having the mindset of being sickly. I remember him asking why he was going to the doctor and I would always tell him “You just have some “kidney issues, no big deal.” I’m not sure that it is a result of that or because his body has adjusted to low kidney function, but even now he doesn't feel like anything is wrong with him. I say even now, because last November (2016) we were told Ross would need a kidney transplant within the next 6-9 months. I always knew this day would come. The initial visits to Children’s Mercy Hospital were upsetting to say the least. I remember dreading taking Ross to that first appointment at the hospital. I tried really hard not to question God about our situation but it was easy to feel sorry for ourselves and wonder why we must endure this. I never expected to leave that hospital feeling thankful, but let me tell you, If you spend a little time in a children’s hospital it will change your perspective.
Ross continued with several doctor appointments and went through testing for him to be considered a good candidate for a kidney transplant. Ross had the option of being put on a deceased kidney donor list or to opt to try and get a kidney from a willing live donor. Living donors have a higher success rate and last longer so my husband and I both went through the initial testing to see which of us would be the best match for a live donor transplant. My husband, Shannon was chosen as the closest match and the testing continued with him. The final stage of testing was almost complete when it was discovered that Shannon had too many veins and arteries connecting his kidneys and that it would be nearly impossible to reattach them to Ross. This news came hard because we felt like were so close to helping Ross and yet didn't make it...just like that, one of his options was yanked off the table. I then was the next in line! I had always felt all along that one day I would be able to give Ross one of my kidneys. In fact I was somewhat hurt when my husband was initially chosen over me; it’s hard to explain but as a mom I wanted to be the one to fix this for him. Now, I had my chance. My testing was somewhat of a roller coaster ride. There were ultrasounds, EKG’s, echocardiograms, CT scans, and psychological exams. There were a few concerns and scares along the way about my health but I was finally deemed healthy enough to donate one of my kidneys to my son. This news came in just the nick of time too. Ross’s kidney function had continued to deteriorate quickly and he was now down to about ten percent function and was going to need to start dialysis unless the transplant could take place soon. We took the first opening they had which was July 10th 2017. We were so grateful to have this date and yet we were terrified of it at the same time! It loomed out there like a cloud waiting to envelop us. The cloud was this haze of fear. Fear of the unknown, fear of how the surgery would go, fear of how recovery would be, fear of possible failure, fear of how both our lives would be following this date and how we might forever be changed. I wouldn’t be honest if I didn't tell you that I had fear that one of us might not survive. The percentages are low but the highest risk of the surgery is death. I didn’t fear the possibility of dying but rather if something happened to me, Ross might have guilt. I couldn’t bear to think of this so I wrote him a letter.
The letter is still in my notes on my phone, dated July 10th, 12:41am.
I know in my heart this will all go awesome today! I also know that nothing will happen today without God allowing it. I know you and I are fully covered in prayer! I love you Ross with all of my heart and I would do absolutely anything for you without hesitation. I promise, no strings attached. Please just know that no matter what may come from this, I love you and I would do it again for you. I’ve always said I would give you my heart if you needed it and essentially what I'm saying is I would give my life for you. You are an amazing son and I am so honored to be your mother. I will be anxiously awaiting to see you after surgery. This is a new beginning for you to have a healthier life. “
July 10th was here. I sat at the foot of my son’s hospital bed and wept and prayed for God to take control and I once again surrendered this to Him. Sixteen years had passed since I first had to “Let Go and Let God” and there in that hospital room I was completely helpless and dependent on him. The hospital staff was soon in to wake him and I kissed his forehead, hugged him and left him, knowing I wouldn't physically see him again until I could be released from the hospital four days later. Yes, because Ross was considered pediatrics, he was at a children’s hospital and I was at another hospital about 15 minutes away. Leaving him that morning was by far the hardest thing I have ever had to do in my entire life! We both went into surgery about the same time and I came out first. As I was being taken to my hospital room, my dad came in with the news from Children’s Mercy Hospital about Ross. My kidney had successfully been transplanted into Ross and it was functioning immediately!! I can't explain to you the flood of emotions that overtook me. It hurt to cry but I couldn't contain it! It was tears of joy, relief, thankfulness, and complete submissiveness to God’s power and authority. In that instant I truly realized how much had been out of my control and yet God had it perfectly in His control. I could do nothing except let him finish writing Ross’s story. It is a beautiful story of God’s power, and his purpose for Ross’s life, and the perseverance that Ross had and continues to show in the face of recovery.
Last September (2017) Ross shared his own words for a school paper, “Before I was born I was diagnosed with chronic kidney disease and they told my mom that I would not make it and she should termite the pregnancy but she said no and her and my dad prayed and prayed and I was born August 4th 2000. I was born with one barely functioning kidney and one dead kidney with no function. hey said I wouldn’t make it long but I’m here know 17 years later still going strong....After the transplant they said it could be two to 4 weeks until I was out. But I had perseverance to get out of that place sooner than anybody had seen. I would get up and walk every day when I was told, and do more by myself and I was out of there in less than a week. The doctors couldn’t believe how well it all went and how fast I was out. Perseverance plays a big part in everybody's life from small to large trials. If you want to get things done you need to have persevere.”
It has now been 9 months since our surgeries. We are both doing better than anyone could have anticipated. Ross’s new kidney is functioning perfectly and we are both back to a normal life. He will still have some challenges along the way with twice weekly labs, medications, doctor visits, dietary changes etc. There will always be the risk of his new kidney failing and the daunting task of taking immunosuppressive anti rejection drugs twice daily without fail, but we are embracing our new normal with a renewed perspective and perseverance. I am determined not to let fear and worry rob me of any more precious time. I continue to remember that I am powerless and give God the power. We are going to live this life God has given us to its fullest and not take it for granted! Ross and I have been forever changed in ways we would have never known without this chapter in our life book. We will continue to let God finish writing our stories and surrender our lives to Him, and His control. It has been said that, “Worry does not empty tomorrow of its sorrow, it empties today of its strength.” I would challenge everyone to look at their life with a renewed perspective. As one author put it, “We can complain because rose bushes have thorns or rejoice because thorns have roses.“