Everything will be ok

When we started on this journey two years ago, the genetics counselor said that Owen would write the story of his life, that he would lead the way on what his future would be. I have to admit that I wanted to shake that woman and ask her ‘what the heck is that supposed to mean?’ In those early days, we searched for answers as to what our future would mean with Owen’s diagnosis. We looked all over the internet for answers as to what life would be like as parents of a special needs child. When you get a diagnosis like ours, it hits you. It knocks you off your feet. You just want to know that it will be ok, but you want to know that from someone who has been there. Not from your Mom or your Sister, or a counselor who has been assigned to talk to you. You want the words from someone who has been in your shoes. You want the truth.

As an engineer, I viewed Owen’s diagnosis as I view any problem, apply the correct solution and the problem will be solved. We got Owen into early intervention, and I even asked the evaluator ‘Owen is behind but with help will he catch up?’ I didn’t understand. I couldn’t understand at that point. I was drowning in denial. It took a trip to Indianapolis with the truth in my face for me to see the range of possibilities for my son. In  a session that we were not supposed to be in, we got hit by a freight train by the fact that we may need to be guardians of our adult child one day. Our baby who had just learned to crawl, this baby was going to be our responsibility to the day we die? It was too much to take. Honestly it’s too much to take today. I shut down when I think about it, I truly do. Not that don’t I accept a future where Owen lives with us in our golden years, but I can’t envision a future where Owen can’t live without us.

We thought we brought home a healthy child, only to be told seven months later that the hospital missed something big when evaluating our little boy. In retrospect, it’s not fair to blame them for not catching Owen’s deletion earlier. The only real physical trait is his sub-mucus cleft palate which took the craniofacial specialist’s trained finger to find. The speech therapist we went to when Owen was just three weeks old didn’t catch it. Had our perfect little boy been growing even at the 5% curve, who knows how long we would have fooled ourselves into thinking that everything was fine. However, Owen dropped off the chart, I mean he really dropped off the chart. To the point were we couldn’t live in denial any more.

After we got Owen’s diagnosis, Olivia’s reaction was to gather information and to scour the internet for other people like us. She found the Chromosome 18 page on Facebook. She kept looking at the pictures of the kids. It brought her so much comfort to see that these children were living life. They were happy. She remembers seeing a picture of a little boy wearing glasses and reading a book. She doesn’t know why but that picture spoke to her. After reading blogs and seeing pictures of these beautiful children and the stories their parents would write, Olivia kept asking herself ‘what can I expect for my little boy?’ She sat holding her little baby, looking into his beautiful blue eyes while he would giggle and laugh… ‘why are they not telling me what my future might be like?’ At that point, Olivia didn’t understand that all of the things that they were sharing the Birthday parties, the Easter Egg Hunts, the Christmas mornings, the sleep over with friends that is what is was like.

The surgeries, the doctor appointments, fighting with your kid to wear his glasses that’s only a small part of the fabric of your child’s life. The larger tapestry of special needs families are more alike than different from everyone else. We thought that there was some dirty secrete to being a special needs child that no one would tell us about. Olivia scoured the internet reading posts from parents of all kinds of special needs kids. We both thought that somewhere there was some sort of special answer for our boy. Fact is, raising Owen is different, but not different. Raising Owen who is an amazingly loving boy, is not that different from raising a typical child. Owen craves the attention of girls his age (yeah he’s a real ladies man). Owen laughs at Sesame Street and marvels at the world around him. Owen wants to explore the world, good luck keeping him still.

When we first started on this journey, Olivia kept getting to a point in the parent’s blogs where she would ask ‘why are you not sharing your special needs journey’. She didn’t understand why the parents would hold back ‘the secret’. Fact is there is no secret. When we write our blogs, we try to write to ourselves on the day we got our diagnosis. We try to remember what it was like to have all of those questions about the future of our little boy. The fact is that over time the diagnosis becomes less defining and the character of our children becomes who they are. We’ve grown into the family we expected to be when we were sitting in our little apartment in Del Ray Virginia, when we just learned that we were expecting a baby. The milestones are reached a little slower, but when they are reached they are celebrated with gusto. There are more Doctor’s appointments than expected, and at two and half years a full nights sleep is still met with jubilation. However, there are so many moments we couldn’t have hoped to experience.

God created all of his children perfect. That is one thing I’d love to go back and tell the genetic doctor who told us that normally the human body expels babies like Owen. Sure Owen is missing a chromosome, but it’s like God made him a bigger heart to compensate. We’re so lucky to have our little boy. He is so different from other children sometimes but I don’t care. I live to be Owen’s father….. and that is the secret that no one told us.