David Mullineaux would have been a Special Olympics “Champion”
-By Robin Potter
-Special Thanks to Robin Mullineaux
-Special Thanks to Carol McKibben
David is my angel. He taught me patience and how to live in the here and now. Most of all, he showed me how to love unconditionally. David was born with Down Syndrome. We knew six months into my daughter Robin’s pregnancy that something was wrong because of a spot on her Sonogram/Ultrasound or Ultrasonography. Robin’s doctor explained to her and her husband Mike that this was an indication of a 30-70 percent chance of having a normal child. He cautioned that it was more likely a 30 percent chance the baby would be born with Cystic Fibrosis or Down Syndrome. In our case, it was Down Syndrome. Both Robin’s pregnancy and David’s birth were difficult. A last-minute C-Section was necessary to keep mother and child out of danger. Mike worried not only for his son but that he could lose his wife too. Then, on August 22, 1994, David was born. After David was secured in an incubator and Robin was awake with Mike, I went in search of my grandson. Lying in a tiny bed, with no clothes and spread-eagle under a warm light, he was the most beautiful baby I had ever seen. It mattered little to me that his head was encased in a clear helmet. All I wanted to do was talk to him about all the adventures we would experience together as he grew older. He even seemed to register my voice and respond to me. Three days later, David underwent surgery to connect his tummy to his bowels. Most of the family, including David’s little big sister Ashley, sat vigil with us at the hospital. We were so fortunate and blessed, because in the past babies like David would have died soon after birth with no way of being fed. The operation was a success, and David would remain in the hospital for as long as it took to have a bowel movement. Yes, we were praying for poop! Eight days later the miracle occurred and proved the operation had been a complete success. David came home several weeks later. I was pursuing a college degree at the time and drove the six hours from Ohio University College to Maryland every chance I could. It was worth it to drive a twelve-hour roundtrip just to hold David’s hand for a while.
David and His Family Fight Back
David progressed normally until one night Robin was visiting a friend who noticed that David was turning blue. In fact, he had stopped breathing. Fortunately, an emergency squad was very close, and David was life-flighted into the D.C. area from Jefferson, Maryland to Georgetown Hospital. He had contacted RSV, a virus, that would only be a cold in a healthy child or adult but was life threatening to David. He had not yet developed fully-formed lungs. He was put on a respirator, and his hospital stay was lengthy this time. Visiting him required we dress in special gowns and masks. Then, more bad news. Pressure from the ventilator was too much for David’s little lungs. Our only real option was a heart lung by-pass machine, Extracorporeal Membrane Oxygenation, or ECMO. The ECMO would take over all David’s functions and give his lungs a rest. Two tubes were inserted through David’s neck to connect him to the ECMO. This was the only option left if he was going to make it. More bad news immediately followed. Mike’s father suffered a heart attack; leaving my son-in-law torn between going to his Mother and staying with his wife. I told Mike to go to his Mom and that I would take some time off from school in order to stay with Robin and take care of Ashley while he was in California. I will be forever grateful that I could be there for them. The ECMO required that David lie on his back and not be moved from that position. As time went on, his system began to break down. Mike was back from California by then, but someone had to be with Ashley and that was her Grammy, me. David remained on the ECMO machine for 29 days, the longest anyone in his condition had ever been on the ECMO and survived. God was with us, because on November 2, 1994, David came off the ECMO. He was a very sick little man, but he was alive. He had been poked and prodded and stuck with needles on every part of his little body. Even worse, the powerful medicine he had to be given took his hearing away. We didn’t know it yet; it was later that we discovered he was deaf. David returned home from the hospital on November 18, 1994, and was with us that Thanksgiving. Being home required on-going therapy and treating a very deep open sore at the base of his skull. Robin cleaned it daily until it healed. She was so strong through all of this. Just like a mother bear taking care of her cub. I kept Ashley occupied until I had to go back to college and make up a lot of work. Then, not long after, Mike called me with more bad news. When they realized that David had lost his hearing, Robin had reached her breaking point. After everything that happened, she realized that her son would be deaf. It was too much for her. I was months away from graduating. It had taken me over fifteen years-one class at a time-to get to this point, but I did not hesitate. I left immediately and went to my child who was in terrible pain. Mike’s Mom flew out from California, too. It took all of us to take care of Robin, David, and Ashley. It took a month to get Robin back to a healthy state so she could do what she had to do. She was a Mother and a wife and her children and husband needed her. Mike’s Mom had to go back to California. I stayed. They still needed my help. During that time, David suffered with another bout of RSV and went back to the hospital again. I stayed at home with Ashley and worked with my professors on a solution to finish my last quarter of college and graduate. David was in and out of the hospital regularly. One day, as I was putting together a portfolio for one of my classes, I noticed David kept trying to raise his head but was having great difficulty. This time he had pneumonia. Along with it, we discovered that multiple intubations had contributed to making David’s air way smaller than a little finger. Surgery was necessary to enlarge his airway. Doctors used cartilage from David’s ribs to make his airway larger. But, in order to do that, he had to have a tracheotomy. I never wanted to be a nurse for many reasons; however, with David I learned right along with Robin and Mike how to take care of our angel. I even learned how to change a Trach! If it weren’t for our tag teaming, I don’t know how any one of would have made it. God was with us every step of the way. I learned from recovery struggles with David that I am truly stronger that I ever imagined. But, Robin and Mike have supernatural strength when it comes to caring for David. They are amazing parents.
Recovery Round One
All of this was really only round one of what awaited us. There would be many more challenges to overcome. But, what is important for others to know is that special needs children are gifts from God. Having a special needs child puts your values and your strength to the test. All in my immediate family have learned things about ourselves of which we didn’t realize we were capable. Children like David show us the true meaning of unconditional love. It is that unselfish love of another that lends strength to us. These children should be cared for with the utmost respect and thankfulness that God chose us out of all of others in the world to raise his Angels. If you are ever given the opportunity to make a decision as to whether you are going to keep or terminate a pregnancy because you know you are going to have a special needs child, do not throw away the chance! Special needs children are unexpected blessings from God. Because of everything that had happened in my life up to David’s birth, I was prepared to step in and do whatever was needed. I knew my daughter and granddaughter and son-in-law and grandson needed my help. I would do it over again in a heartbeat. We recover from so many things in our lives, but it is important how we handle each recovery. The saying is true–if it doesn’t kill you, it makes you stronger. My daughter has a core of the strongest steel ever made and a heart of love for others. Her whole life has been about helping others. I am so proud of her.
A Special Bond
Our family has a structure of looking out for one another. We’ve gone through problems just like any other family but we will always stick together. If you ever go through trauma as we have, know that it can create a special bond or it can rip you apart. Instead of pushing each other away, pull together as we have always done! Recovery is something that happens to each of us in one form or another. It is how we deal with it that is important. I know I will keep hitting the balls out of the park as they get tossed my way, and I am going to recover each time because of my faith. We all get one life, and we need to make the most of it. Know that you are never alone in your recovery. We are all in it together to recover and survive. We owe it to ourselves to not let life get us down. We are bigger than that!