After a seemingly healthy and normal pregnancy, I went in for a regular 37-week prenatal appointment. After losing 2 pounds the doctor was concerned that my amniotic fluid might be low, so he scheduled me for an ultrasound the following day. Tony and I were excited for another chance to see our baby on ultrasound before he was born. Once we arrived to the office, and the doctor came in to do the ultrasound, he told us some news that would change our lives forever.

      Our baby had a very large cyst that took up the whole left side of his brain. He told us that the probability of having me induced would be high, simply for the fact that they needed to get our baby out as soon as possible because the cyst was so large. He set up an ultrasound appointment that same day for a fetal specialist to look at the cyst and determine what actions to take. 

      Two hours later we arrived at the maternal fetal medicine clinic, and got situated in the ultrasound room. The specialist confirmed it was a large cyst; she diagnosed the baby as having Hydrocephalus. She told us that they would most likely induce me that day, because the cyst was so large that they wanted to get the baby out before anymore damage might be caused. She told us that they would place a shunt in his brain, to help drain the fluid. This shocked us, after having a seemingly perfect pregnancy; we just couldn’t wrap our minds around the fact that our child had health issues that would cause him to need brain surgery. We were told to go home, and pack a bag, and that they would be in touch to let us know what they wanted to do.

      Around 6pm, they called and told us to come up to the hospital, and they would start my induction. We arrived to the hospital, and they started me on a pitocin drip. At around 2:30am, on January 28th, after almost 32 hours labor, I had only progressing to 4cm’s so they decided to do a caesarean section. And at 3:09am, Tayden was born. He was rushed straight to he NICU, and that morning he was sent to Columbus Children’s Hospital, for the shut placement. 

      This was such a rough time for my family, and myself. I was so upset that I didn’t even get to hold my child after he was born. And now we were going to be in two different hospitals across town? I had to be away from him for 4 days as I recovered from my c-section, although the doctors did allow me to be there with Tayden on the day of his surgery, so I was thankful for that. It was such a hard time on me, as well as Tony who was playing basketball for The Ohio State University and had to practices to go to, and classes to attend all while dealing with this. I can’t even imagine how hard it was on him.

      After his shunt was placed successfully, Tayden started his long road to recovery. After a 1 ½ month stay in the NICU at Columbus Children’s, Tayden was finally released. After a month of being home, the doctors wanted Tayden to come back to the hospital to be tested for pituitary problems. That’s when we were introduced to Endocrinologist’s, we had no idea how much impact those specialists would have on our lives. After staying in the hospital for about a week, they determined that Tayden had Panhypopituitarism, which basically means that Taydens pituitary gland wasn’t producing hormones that he needed. He was also diagnosed with Hypothyroidism, and was placed on a medication called Levothyroxine. He also has a condition called Diabetes Insipidus, and is on a medication called DDAVP. 

      He was finally released from the hospital, and was home for about two weeks, when Tayden started having seizures. We took him to the hospital, and his Neurologist evaluated him, hooked him up to EEG’s and diagnosed him with a seizure disorder. He was put him on Keppra. Finally he was released from the hospital, and was doing well at home. 

      When Tayden was 4 months old we noticed Tayden wasn’t really progressing. We assumed a lot of it had to do with the fact that he was hospitalized so much, and having other health issues might beholding him back… but then we started to notice that Tayden would never look at us when we talked to him, and we noticed that noise really startled him. So we talked to his pediatrician about our concerns and she referred us to an Ophthalmologist and he checked out Tayden… that’s when we find out more life changing news. 

      Tayden was diagnosed with Septo-Optic Dysplasia, also known as S.O.D. The way the ophthalmologist explained it to us, was that Tayden had very small optic nerves and did not have as many as he was suppose to. They were unsure as to how severe his blindness was, they said we would know in time what he will be able to see, if anything at all. There is no surgeries or much of anything that they can do to help correct this. 

      I will admit, this left Tony and I a little upset. Tayden had already been through so much in his 4 months of life, that this is was just something we didn’t want to hear. We were so confused, and a little naive about it all. Would he lead a normal life? Would he be happy? How well could we raise a blind child? What would this mean for Tayden? With all the questions that we had, we were in need of some guidance. 

      Shortly after we found out this news, we moved back to Medina. Shortly after our move to Medina, Tony left to go play professional basketball in France. It was a hard adjustment, but having my family and Tony’s family, we adjusted just fine. 

      Tayden was doing wonderful, he was hospitalized a few times for various reasons, but things were going pretty well… we even went out to France to visit Tony for 3 months. When we returned home that summer, Tayden became pretty sick. He stayed in the PICU for a few weeks because of his diabetes Insipidus, and he was also diagnosed with Central Adrenal Insufficiency. He was released and was doing well for the rest of the summer. We found out we were pregnant with your 2nd boy during this time. Things were looking up. We noticed Tayden progressing more and more with his therapy. He was doing great. 

      Tony left to go play for a team in Israel, it was rough being pregnant and working, all while taking care of Tayden. But Tony was so supportive and definitely always helped as best he could from where he was. Tayden was hospitalized a few times while Tony was gone, but it wasn’t anything we hadn’t been through before. Tony came home for Christmas, and was leaving to go play for Germany in January. 

      A week after Tony left to go play in Germany, Tayden had an appointment with his neurologist for some seizures he was having. The neurologist changed the dosage to his Keppra, it was upped 5 times what he was usually getting (it was the maximum dosage for Taydens weight). She warned me that he might be tired and irritable because of this dosage change, so we went home and I slowly start to up his medication.

      The very next day I noticed Tayden wouldn’t wake up to eat, which I thought was because of his dosage changed. But then he became pretty unresponsive, and threw up anything I gave to him, so I called his Endocrinologist. They told me to get him to the ER so they could check him out. When I got there Tayden went from bad to worse, they tried to get a IV line in him for 5 hours, my poor baby was so black and blue all over when they finally got a line in him. Turns out he was severely dehydrated (it was because of his Diabetes Insipidus), he was listed as being in Critical Condition and stayed in the PICU at Rainbow Babies. Tony decided to fly home, to be with us. After almost three weeks in the PICU, Tayden was transferred upstairs. Tayden had a Mediport placed so that way they could get an IV line into him with one try, he also had a G-tube put in, incase he refused food again, and was placed on a very strict diet. He was released after almost 4 weeks in the hospital.

   Even though we haven’t seen a huge improvement in his vision, we have learned to accept the fact that Tayden is blind. We see how happy he is, and understand that he can’t miss something he has never had. We now get to experience life in a whole new way because of him. He has taught us so much, and he will continue to teach us and show us so much more. He has been through so much, and has so much more to go through. He takes 5 different medicines every day to keep all his medical issues under control... he has to go through rough physical therapy 3 to 4 hours a day, but he does it with a smile.  He is such a special little boy, with a smile that will just melt you heart. And now that he is a big brother, he has been even happier. And his little brothers just adore him, and who wouldn’t? He’s Tayden. He’s such a blessing. 

This summer I found myself feeling alone. I felt like there weren't many people I could talk to that really understands what we were going through as a family and what was in store for Tayden in the future. That's when I came across a very special Foundation called The MAGIC Foundation. Having a support system out there like The MAGIC Foundation has been amazing. They have helped us see and understand exactly what Tayden's going through. It's very comforting to be able to communicate with other families that are going through the same thing as us. It's wonderful to me that this foundations main objective is to keep parents informed, give them all the support in the world, and striving to find answers for it all.

When your mind is running 100 miles a minute, because you are so confused, so scared, and just don't know what to do or think, to have The MAGIC Foundation there telling you that it will all be okay, and what to expect is one of the biggest blessing that a parent with a disabled child could ever ask for.