. . . And I’d have to agree. He is exceptional, he is loved, and he amazes us everyday.

Our story begins when I was 18 weeks pregnant. We were referred for a routine level II ultrasound and I was so excited! I had been waiting for this my whole pregnancy, finally we’d get to see our little bundle, and we’d know if we were buying pink or blue for the nursery. Our big day arrived and I finally saw him. It was amazing to hear his little heart, and see his little feet. After about fifteen minutes, the technician seemed to get very quiet. She was also spending a lot of time viewing his head. I asked if everything was all right and she replied that we were having a boy and that the doctor would be in shortly to discuss the results.

It took the doctor fifteen minutes to come and see us, and those were the scariest fifteen minutes of my life. The first thing he said was that our child had Hydrocephalus. I had never even heard of that before. He explained that he had water on the brain, and that if he lived, he be nothing more than a shell of a child. He told us our best option was to terminate. He said we were young; we could just start over and forget this ever happened.

We were devastated. I cried all the way home. When I arrived home, I called my doctor and told her what happened, and she said “we don’t see people like you here”. It made me feel as if I caused this to happen, it was my fault. So I called around to different doctors and no one wanted to see me. The doctors who would see me suggested we terminate and when we refused, they suddenly didn’t have any openings. We finally got an appointment at University of Michigan Hospital, with Dr. Van De Venn. He was a great doctor! He suggested we terminate, but when we refused he said, “Then we will do everything we can to get him the help he needs”. It was such a relief to finally find someone to help this child. He deserved to live just as much as any other child, and I wasn’t about to allow anyone to say otherwise.

I spent the rest of my pregnancy researching Hydrocephalus. Some days were good days, some days were bad. I’m not a religious person, but I questioned God many times. I just couldn’t understand why this would happen to such a loved child. I later found out I had answered my own question.

I continued to have level II ultrasounds every two weeks, and even had a 3D ultrasound done. Every time we went, his ventricles were larger. The last time they measured them, they were 57mm. At that time they decided he needed to be delivered or he could die. I had a C-section done at 35 weeks. He was born at 10:51am, pink, screaming, and very much alive.

He weighed 6 pounds and 15 ounces, but don’t let that fool you. It was all water. If he didn’t have Hydrocephalus, he would have weighed around 4 pounds. His head measured 42cm, and was very disproportionate to his body. But I couldn’t see that at that moment. All I could see is my little baby. This child I loved, and held for so long, this child that I cried so many days over, this child that needed me almost as much as I needed him. It was the happiest day of my life.

He was scheduled for Shunt surgery two days later. I was allowed to be released after only 24 hours in order to be right there for him before and after the surgery. The surgery went well, and his head began to shrink. He became more alert, and would open just one eye ever so slightly, just to take a peek. He spent a total of 13 days in the NICU and one in the step down nursery.

When it was time to go, we realized that we hadn’t been home since he was born. After all this time waiting for him, we didn’t have the final touches ready! We called family, and they got the nursery all set up for us. Our first night home was scary, exciting, and relieving all in one. But when I laid my head down that night, all I could do was feel pride. We opted to love what many were scared into terminating; we opted to try even when the outcomes best-case scenario was that he’d never be normal.

Normal isn’t a word allowed in my home. Who are you to say what normal is? Zakary is 19 months old, and he can’t walk, or talk, or feed himself, but he can laugh, and he can sign, and he crawls faster than most of us “normal” people can walk. So, no he isn’t normal he is truly exceptional.

Every time he says a word, or pulls to a stand, or actually gets a little food in his mouth all by himself, those doctors are wrong. Every time he blows a bubble, or figures out a puzzle, or blows me a kiss, those doctors are wrong.

Now I hope I haven’t painted an incorrect picture, because he does have very real medical conditions. He has massive Hydrocephalus due to Aqueductal Stenosis, which is improving, thanks to his Shunt. He has Sleep Apnea that needs to be monitored every night. He has Hypothyroidism that he is on medication for daily. He has many brain malformations including Rhombencephalosynapsis, Arnold Chiari Malformation Type I at 20 mm, Absent Septum Pellucidum, Agenesis of the Corpus Callosum, Leukomalacia, and Cysts are growing where the fluid used to be. He has Plagiocephaly due to the dramatic size of his head. He has suffered one seizure, and he suffers from night terrors. He has vision issues including Strabismus, Esotropia, Hypertropia, Forth Nerve Palsy, and bilateral Astigmatisms. He failed his Hearing test, and sees many therapists.

He is doing very well in spite of all of this. He learns every day; he gets a little stronger every day. He is a little closer to those doctors’ goal of “normal” every single day. Sometimes I just sit back, and look at this exceptional child, and try to imagine my life if I had listened to those doctors. There is beauty in faith, in God or just your self, Please don’t let yours fade.