For two years after our daughter was born, we prayed for another baby. We were blessed with our daughter Tayler on May 27, 1999. Being parents was all we really ever wanted to be. Tayler was our amazing daughter who, from day one, was larger than life. We were so elated with being parents we knew we needed to be parents again. So for months and months we hoped we would be pregnant again. Two years passed and we finally got the news that I was pregnant again. We couldn’t wait for delivery this time to find out if we were having a sister or a brother for Tayler. We were unbelievably happy to find out we were having a baby boy. His ultrasound picture is still in a frame on my desk that says, “Love at first sight”. This pregnancy, however, was different. Nathan was not nearly as active as Tayler, but all the tests came back that he was healthy and there was nothing to worry about.
Nathan blessed our lives on Oct 15, 2004. He was perfect in every way, including a perfect delivery and perfect scores. Nathan, however, was fighting a battle none of us could have imagined. He was too weak to eat and couldn’t nurse, so we fed him with a dropper for days. Still we were told that he was fine and there was nothing to worry about, but my husband and I did worry. We knew in our hearts something was wrong.
Nathan was scheduled to be discharged from the hospital; the car was packed and ready for us to go, and then our pediatrician came to see him. We begged him to take a good look at him and to make sure he was really okay. He noticed Nathan’s collar bone was broken and decided to do x-rays. Not only did the x-rays show a broken collarbone, but they showed infection in Nathan’s lungs. Nathan had group B strep and he needed immediate antibiotics. We were told he was so sick that he may not make it through the night. He was whisked away from us and taken to the NICU. Our family gathered and prayed, and we even baptized Nathan in the NICU. Nine days later, by the grace of God, we brought home our son.
Our joy was soon dampened again by the screams of a baby we so desperately wanted but couldn’t console. The screams were all day and all night and he even whimpered in his sleep. Again, our guts said something was terribly wrong. Sixteen months and four fired doctors later, we found a doctor that would listen to us. Finally we were going to get answers. Nathan’s stomach had not developed correctly and needed to be repaired. Now we could finally get Nathan on the path of healing! But again our lives took another turn. After weeks of sickness and uncontrollable vomiting, the doctors ordered CT scans of Nathan’s brain. When the doctors came in to give us the results, we just knew the news wasn’t going to be good. We were told to go straight to Iowa City because Nathan had water on his brain and needed surgery. We arrived in Iowa City that night and after the neurologists took a look at Nathan’s scans, we were given the news. Nathan didn’t have water on his brain; he had Agenesis of the Corpus Callosum (ACC). We had no idea what that was or what it could mean for our family and our little boy.
Nathan was born with ACC, which is the absence of the center of his brain. This means there is no way of connecting the two hemispheres of his brain. We were told he would never walk, talk, or learn. ACC comes in different degrees: partial absence or full absence. If you have partial you can live a normal life as many do, but full absence is much different, and Nathan has full absence.
We were told to take Nathan home and love him, but he will never be able to do much. Loving him well was covered, but accepting he would never do anything; how could that be? We needed him as much as he needed us. Now we could have laid down and cried, feeling sorry for our new life with him, or we could stand up and with faith and give him every opportunity to learn and thrive. Trust me when I say laying down and crying with denial is much easier, but that would do nothing for our son. So we picked ourselves up, hugged our daughter who loved Nathan as much as we did, and moved forward.
Now when I say we moved forward, it wasn’t an easy street. There were tears and gut wrenching emotion that could tear you apart. But as we learned more and more about ACC we also learned what we had to do to help him. Along with Nathan’s ACC, he is also diagnosed with Sensory Processing Disorder or SPD. All of Nathan’s senses are heightened, so no loud noises, no seams or tags in clothing (not even the printed tags in clothes), no food with texture, no baths because the water sends him into sensory overload, no smells and NO sleeping. To top it off, with all of that comes a high tolerance to pain. We may never know if Nathan is really hurt or not because he can’t sense pain like you and I do.
We dove ourselves into therapy and IEP meetings. Enrolled him in a special needs pre-school and, much to the doctors dismay, he walked. Three steps at a time, but he walked. And much to their dismay, he talked and was learning. Somehow, Nathan has found a way for some signals to get through his body and connect some dots. Somehow, Nathan can run, play, learn, and never (and I mean never) stops talking.
At age 7, we were finally referred to the Mayo Clinic in Rochester, MN. The doctors there informed us that nothing down the center of Nathan’s body developed correctly. His vision is impaired (cataracts at age 5), his nasal passages are almost completely closed, his esophagus isn’t developed, his stomach isn’t developed correctly, his bowels are not developed, and he has hearing loss and wears hearing aids. We also found out that none of the “maps” in Nathans brain are wired correctly. Then the news came that Nathan has Shapiro Syndrome, which means he cannot regulate his body temperature. Nathan has to be monitored all the time because he can have a heat stroke or go in to hypothermia when not in constant temperature, and we keep him inside in the summer and highly regulate the temperatures of the places he goes.
With two working parents, we looked everywhere for someplace for Nathan to go before and after school. First we hired staff to come to our house in the mornings and afternoons. Then we found a home daycare for him after school. As much as everyone tried to help us nothing seemed to be working. No one understood him, and we felt as though he was being pushed aside and punished for things he could not control.
We just knew we had to find special people to be with Nathan, whether that was family, friends, or anyone who could understand what we were going through and could be trusted to be with him. Not many helped and not many that helped stayed. We lost friends and made new ones along the way. But then we were told there’s a place that helps families and loves the special ones. That’s when Hand-in-Hand came into our lives. This is a place I can send my son that is fun and safe for him, and I can have peace of mind when he is there; a place that welcomes him and loves him too. I actually cried just at the thought of this place.
We enrolled Nathan at Hand-in-Hand for after school and fun programs he could do, and we found a family at Hand-in-Hand. Nathan especially loves Inspiration Studio and Sunday Funday. They do amazing things for amazing kids, and our family believes we should support them in any and every way possible. What would families like ours do without them?
With all of the things Nathan needs help with, we have a place he can go. He can go and learn, play, and be loved. I know we are not the only family that thanks God every day we for Hand-in-Hand. Our daughter Tayler has now worked at Hand-in-Hand for 2 years, following her passion for special children. She, too, has found a home and a place to fall in love each day with kids like her brother.
Nathan was our gift and now Nathan gives the gift of hope and strength to all around him. He is a crazy, amazing, beautiful, smart 12 year old sixth grader. He has taught us more about compassion, unconditional love, and about what life is really about in his short 12 years of life than we could have ever imagined. Hand-in-Hand has given us peace of mind and a place for Nathan to just be himself. No judgment, just unconditional love.
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