one year…

One year.

August 29th marks the one year anniversary of the day that my life changed forever. I was driving back to work, after dropping my older kids off to our babysitters’ house, when my phone rang. I looked down and noticed that it was my wife’s doctor and I knew that something was wrong because he NEVER calls me. I answered the phone and the tone of his voice immediately confirmed my feeling and he asked me, “Are you driving? If so, you may want to pull over.” I quickly pulled the car over to the side of the street and that when he gave me the news that we were having a boy and that he had Down Syndrome. I remember my head felt light and it felt like my thoughts were swirling around in my head without a place to land. “What…”, I asked. “What does this mean?” Dr Weary went on to explain that it meant that our little boy had an extra chromosome that would make him different from my other children. NOT broken, not worse, just different. But all I could hear was “Down Syndrome” repeating over-and-over in my head. If I am honest, I had always feared having a child with disabilities. I always felt like there was no way that I had the strength, the patience and the courage to face that challenge and with every one of our other pregnancies, I begged God not to let that child be disabled. And now I was going to be that parent. That afternoon, when I told my wife the news, we wept uncontrollably, both in sorrow for our precious boy but also for ourselves. It felt like our dreams for our boy, and for our family, were all crashing down around us. What did this mean for our son? What did this mean for us?

About four months later, I would find myself in my wife’s hospital room, waiting for the doctor to give us the results from an ultrasound they did on our baby Timothy. My wife had been admitted into the hospital earlier that week, due to a worrisome rise in her blood pressure and it looked like we faced two months of her being there, while our son finished his nine months in the womb. Then the doctor delivered the news that felt like a punch in the gut. He told us that my wife’s blood pressure had continued to stay at a dangerous level and that our son was in real distress inside of her and that he had been struggling all night. And he said he needed to be delivered immediately. What??? We have two more MONTHS to go, not hours or days! How can they take him so early? Will he survive? The room quickly became a swirling space of chaos, as nurses and doctors rushed in-and-out, preparing my wife for an emergency c-section that was happening in minutes, not months. I was pushed off to the side while they took care of my bride and I remember standing in front of the large picture window in her room, silently crying out to God in desperation like I had never felt before. “God, I could lose my wife and my baby today! PLEASE don’t do this! PLEASE don’t take them from me!! Please….please….” I shook with fear and desperation as tears poured down my cheeks.

Less than thirty minutes later, in an operating room full of nurses and doctors, we heard the tiny cry of my precious Timothy. The nurses were frantically working to clear his lungs and help him breathe, but he was fighting. I walked over to the warming bed and saw my tiny boy, whose head was no bigger than a tennis ball, fighting for air but showing how strong he was. He was never going to give up….and neither was I. The following day in the NICU, as they performed an ultrasound to check him for some of the classic complications that come with Down Syndrome (DS), the doctor noticed that his digestive tract was blocked and he was not passing food. This was a bad situation and required surgery immediately. “What? He’s so tiny! How can he have surgery?!?” The doctor then explained that their facility could not perform that “procedure” and that he would need to be transported to another hospital the next day. I will never forget the heart pain I felt as I watched the ambulance pull away with my little Timmy in it, all while my bride continued to struggle to get her blood pressure down and avoid a stroke. My heart screamed out to God that I could not do this and that I could not lose one, or both, of them. I was not strong enough. I sat in the rocking chair in her room, darkened to encourage her to relax and rest, and silently cried. It felt like my emotional and spiritual knees were buckling underneath me and I was collapsing. But God delivered Treshia and that evening we were able to leave the hospital and drive to meet our baby at his new hospital. By the time we got there, he had already been examined, connected to every machine known to man and was scheduled for surgery two days later. We sat together in his tiny little pod, feeling completely numb from the storm we had just been through, but also terrified of the oncoming storm ahead.

On his sixth day of life, my little fighter faced his next challenge and he had more strength and courage than his father. We wheeled Timmy down to the operating room and then handed our son into the care of complete strangers, who would open him up and make repairs on his bowels that were no bigger around than a pencil. Not surprisingly, Treshia’s blood pressure had spiked, due to the stress and worry, and she laid down on one of the couches to sleep. As I sat there in the waiting room, feeling so alone and desperate, I silently cried out to God not to take my son from me. I begged Him to deliver Timothy through this trial and to let him be strong. After two of the longest, most helpless hours of my life, the doctor came in and gave us the news that our little fighter had done well and was back in his room. We praised God for protecting our son. He was OK. And we walked back to the NICU unit, a walk that we would become very familiar with over the next three months. Timmy would spend the next three months in the NICU, recovering from his surgery, fighting through cold-after-cold, building up strength and slowly gaining weight. Our lives became divided, with one of us taking care of the older three children while the other spending time pouring into our baby boy….and then we would switch. Two kids in school, one with a babysitter, one child in the hospital, two full time jobs….it all became a blur. At many points along the way, it felt like I was not going to make it. Like I did not have the emotional or spiritual strength to endure any longer. Like the Lord had lied to me and truly have given me more than I could handle. It would take buckets to hold all of the tears of pain we cried those three month, but an equal number of buckets to hold the tears of joy we wept every time Timothy would face a new challenge and beat it. He was so strong. He was so brave. He was my hero.

On April 3rd, Timothy came home from the hospital and our lives have continued to be a whirlwind of colds, infections, doctors appointments, tests and struggles. Unlike our other kids, his progress is measured in ounces not pounds. We have to do physical therapy with him every day, preparing and strengthening him for the day that he will walk and talk. He still is on oxygen and sometimes has to be fed through a feeding tube in his stomach. But he is my boy and he is such a fighter. And I cannot imagine my life without him….TRULY. I will not lie to you….It has been hard. Brutal at times. But it also has been such an incredible time of joy, growth and celebration. We have had a community form around us like I have never experienced in my entire life. People cooked meals for us for the entire time he was in the hospital. Three months worth!! We have heard from people around the world who have prayed so faithfully for our boy, whom they have never met. We have been plugged into a DS community that has offered us advice, understanding and love from others who have walked this road ahead of us. Our marriage is closest it has been in our twelve years together because we have fought together, have supported each other, have cried together and have celebrated together. Our kids have grown up more and have begun to see others around them who are different, but they see them as God’s children, not as weird or defective. And I have learned to lean on God in a way I never did before. I have experienced His strength through me, pushing me at times and carrying me at others. He has been so faithful. He has been so good. It has been a tough year but it has all been worth it.

ALL of it.

(This post was originally posted on the Dad Matters blog page)

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~ by kuiperactive on August 26, 2014.

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