I am writing this on February 4th, 2016. It is exactly 5 years since we walked into the genetics office at Children’s hospital and expected to leave without any answers as to why our baby was failing to thrive and not hitting milestones. What we left with was a packet of information and feelings of overwhelming sadness. And a diagnosis, 18q-, at the time it didn’t mean anything to me, now it means so much. There are so many things I wish I could tell that frightened young mother, many I think would help her, some things she might not be ready hear yet anyway.
I’ll always remember that moment, when we walked into the office. I had never met the genetics counselor before, why would I, but the second we walked in the door I somehow recognized who she was and from the look on her face it wasn’t great news. We were quickly ushered into a room and as we waited for her to return I felt all tied up in knots.
We would learn, though the appointment that had been made two weeks in advance, the genetic counselor had received the results just minutes before we walked in for our appointment. That explained the look on her face when the couple walked in carrying a 7 month old baby and she knew she would be delivering life changing news to them. To her credit she handled the deliver of that news with kindness and grace. I tried to focus while she talked, I nodded my head and tried not to look as if I had no idea what she was talking about when she explained chromosomes and of course everyone has 23 pairs… If you say so. The most important thing she said to us was that Owen would be his own storyteller, we would have to allow his story to unfold. I’ll admit at the time, it seemed like an easy out for her. I wanted someone to tell me what we could expect. Would he walk? Talk? Go to college? Why couldn’t she answer those questions?
Soon we were joined by the genetics doctor. As kind as the genetics counselor had been the doctor was all business and fairly rude. I’ll never forget what she said to me as she looked at my beautiful baby boy. I won’t repeat the exact words but she suggested that children like Owen shouldn’t be born. I just couldn’t understand how anyone could look at him and not see what a beautiful baby he was and how the world would be less amazing without him in it. To this day it amazes me that a doctor who deals with genetic conditions wouldn’t know how to handle the situation with more sympathy.
The doctor thoroughly measuring every inch of Owen, his ears, the distance between his eyes, the length of his toes, with every measurement it felt like she was measuring his worth and he somehow came up lacking. She was throwing out medical terms like micrognathia, that seemed terrifying and unfamiliar, why she couldn’t just say he has a small chin, I don’t know. We were sent home to deal with the unexpected diagnosis. We had a small packet of information that only made me feel more confused and overwhelmed and a card for the genetic counselor, who I called so often in those first days I think she started to recognize my voice before I identified myself. It didn’t take long to realize that she couldn’t really tell me much that I wasn’t able to find on my own and really she was right, Owen would tell us his story as time went on.
I remember that night after we arrived home I truly considered running away. My husband Justin is a great father and I knew in time they would be fine without me. But that is ridiculous. I loved Owen more than anything or anyone I had ever known in my life. I wouldn’t be able to live without him. But that mommy, the one who considered ever so briefly, running away, she is the one I wish I could go back in time and talk to. I would tell her it was going to be OK. But I would tell her so much more too.
First I would tell her that yes, Owen will walk. He will be almost 2 years old when he does but it will be amazing, you will always remember his first steps. It won’t be long before keeping up with him will be difficult, not because he is fast, he’s not, but because he seems determined to make up for lost time. He wants to walk everywhere. He will love to walk on the railroad tracks behind your house. He will always take the path less travelled so stop wearing stupid ballet flats when you go for a walk with him, put on sneakers. He will walk and walk and walk until he is so exhausted you will have to carry him a mile and a half home. He is now 5 1/2 and when he runs it is the cutest thing, a little uncoordinated and awkward but his happiness is priceless. Deep down you think he realizes what a gift it is to be able to run and he wears that joy on his face. Even now, over 3 years after he took his first steps you will sometimes cry at seeing him walk. Some of your favorite photos will be of him from behind because he never stays still long enough for you to get the shot, he just keeps going!
Will he talk? Yes! After 5 years you know he will. Mommy from 5 years ago, you may not want to hear this, he isn’t really talking yet. But he is making so much progress! It isn’t a matter of if, it is a matter of when. You need to know, you will have this amazing connection with your son. You and his daddy will be able to read his cues, the three of you will work as one in the most amazing ways. I know you think that you can’t really know your child if he doesn’t talk to you but that isn’t true. You’ll know him so deeply that words won’t be necessary. The handful of sounds/words he does say at this age will make your heart sing. He can say Mama now, you will never tire of hearing it. On your 38th birthday as your husband carries your cake to the table singing, “Happy Birthday dear Mommy!” Owen will lean over smiling into your face and at the exact moment Justin sings, Mommy, he will say “Mama” and tap your chest with his hand to let you know he too is celebrating your day. This will mean more to you than 1000 words!
Owen has a little friend who is almost a year older than him. She has autism. She is awesome. One day she will say to her mommy, who will kindly share it with you, “Owen is my best friend Mommy. He doesn’t say much, but he knows, when you are really friends, you don’t need to talk.” You will be at once amazed at the wisdom of a child and confused that your family and friends who obsess over his talking don’t get it, they are so caught up in what society says he should be doing. Be thankful for the wise little girls, sometimes moments like that will be your life preserver when you feel you are going to drown in this storm.
I know you worry that Owen won’t have any friends. Give children credit. He is so loved at his preschool, no less than 4 moms at the school have taken you aside and told you that their child considers Owen their best friend. I guess they know you don’t have to talk to be friends too! He even has one special friend who likes him so much that she has a doll at home named Owen, she takes very, very, good care of him. His younger cousin loves him so much, that even though Gabe can talk, he will sometimes make “Owen noises” and proclaim he is playing Owen. Do you get it? He looks up to Owen so much he will pretend to be him!
You will cry when Owen gets glasses. You’ll think it’s so sad. It isn’t. There is nothing cuter than a kid in glasses. It will be until he is 5 years old before your can put his glasses on without a fight. Keep working on it. One day he will wear them without a fight… Some day he may even like them. I’ll let you know.
There are so many things you worry he will never do. In those early days of motherhood, as you rocked your baby, you thought of the future, soccer games, birthday parties, school clubs. The day you get his diagnosis you will wonder what his future looks like, will any of these things be part of it? You’ll be happy to know he is taking swim classes at the Y. He loves swimming and has so much fun! Sure, he gets more one on one attention than the other kids and he is in the class with younger children but he is learning and he is so happy in the water. He is also taking piano lessons. Though you worried so much about his focus and doing what was asked of him, he has taken to it. When you arrive on Tuesdays for his lessons, he RUNS into the teacher’s house and leaps onto the piano bench. He won’t be playing a solo anytime soon but he is working so hard. The important thing to remember is to have the courage to ask people what you need. If he needs extra help in swim class, go ahead and ask. Search and search until you find a teacher who is willing to take on a special needs student, who will be patient and be flexible in her teaching techniques. She will celebrate his progress as much as you do. When you surround yourself with people like this, they ease some of your burden and share in loving Owen.
Some other things you might want to know… he loves art. Most kids do. You will love watching him grab just the right color with confidence as he scribbles or paints. The pride he feels when he starts learning how to cut with scissors will be awesome. He is so creative. Start fostering that now. He loves to create and edit videos on his iPad. He makes some really funny ones, they probably aren’t meant to be funny but they are. You will love watching those videos over and over again. He loves music, playing music, listening to music, sometimes even “singing” in his way. Some of the best times will be when you break out your preschool instruments and have a family concert in the living room.
And yes, I know you aren’t proud of it, but you are wondering if he will still be handsome when he grows up. All that information they just handed to you… Well, none of those kids looks like your baby. What will he look like as he grows up? Let me tell you, at 5, he is one of the best looking kids you have ever seen!
You need to know this, please pay attention. I know this diagnosis is scary. I know that you feel like some of your dreams for your child died today. Over time you will reclaim those dreams. You will have met, either in person or online, people with his diagnosis who have gone to college, gotten married, and even have children of their own. Don’t give up on those dreams!
More importantly, at 5 years old, your child will be doing amazing things, things you never even dared to dream before he was born. Things he wouldn’t have been able to do if he was a “typical” child. Every parent hopes their child will change the world. I can say with confidence Owen is changing the world already. He has been photographed by the amazing Rick Guidotti. Not everyone gets to be photographed by award winning photographers. Even more exciting, those photos will be displayed to show other people that differences are nothing to be afraid of. Maybe one day, when a packet is handed to a family facing a new diagnosis, they will see beautiful pictures like the ones Rick shares with the world. You, Owen’s mommy will be a voice for him, sharing his story with kids all over. You will tell his story and help to teach the new generation that people with special needs aren’t so different from them. Owen is helping to form ideas and opinions that are going to change the world. He is only 5! Imagine what he can do over a lifetime!