Today, February 4th, 2015 marks an anniversary. It was 4 years ago today that we got Owen’s diagnosis of 18q-. There are days like this in life that mark a change, when after that day things will never quite be the same again. We walked into a geneticist’s office with our presumably healthy 7 month old baby and left with a foreign sounding diagnosis and piles of paper to read. I remember feeling so afraid and so alone. But lets rewind just a little bit.
Owen was born in July 2010, he was our first baby (and currently only). I fell in love with him immediately and was never happier in my whole life. It didn’t take long before the new mommy doubts and struggles started. He wasn’t successfully breastfeeding, which resulted in my pumping for two long years. He wasn’t gaining weight, and in fact quickly fell off the growth chart. He would be nearly 18 months old when he was finally on the charts at a whopping 4%, I love his pediatrician so much, he brought the chart in with a huge smile on his face, beaming with pride about Owen finally being on the charts! He had trouble sleeping, at four years old we still have nights when one of us is sitting up holding him late into the night. He wasn’t hitting milestones. He seemed uncomfortable after every bottle and we finally convinced his pediatrician that he had reflux, even though he didn’t spit up. Even with all these issues we were usually put off by the doctors, they thought we were over reacting new parents. I just kept thinking, “It isn’t supposed to be THIS hard.”
In November of 2010 we finally convinced the pediatrician to give us a referral to the gastroenterology doctor (GI) at Children’s Hospital. The first time we went she got our history, suggested a few things and had us return in 4 weeks, the second time, same thing. On our third visit the same thing happened, no real progress in Owen’s weight gain, no answers and she wanted us to leave and come back in another month. I was furious. The Children’s Hospital is an hour and a half drive from our home and making the drive every few weeks with no changes was wearing on us. I started to argue with her, I may have cried, but I flat out refused to leave her office until she did something. I don’t really know what I thought that “something” would be. She left the room and after about 10 uncomfortable minutes returned and agreed to admit Owen for testing.
So, we found ourselves in January of 2011 spending a week at Children’s Hospital. It was one of the longest weeks of our lives. They poked Owen, drew blood, did x-rays, took his vitals and weighed him at all hours. One test came back with a bit of a question mark, his levels were high, which could be a genetic marker so they wanted to take more blood for genetic testing. They explained to us that it was unlikely to find anything and that the test may have been elevated if Owen was upset. Getting blood from our little guy is very difficult and hard on everyone involved so I was confident that was the case. Besides that, I had no idea what genetic testing could possibly even mean so I wasn’t terribly worried about it.
At the end of the week they sent us home, with no answers and an appointment to return in two weeks to see the genetics team. I was frustrated but at the same time I felt relieved that all the tests proved there was nothing “wrong” with our baby boy.
I can remember laughing and joking on our way to the genetics appointment. I remember walking into the office for our appointment, feeling confident that it was a waste of our time. And one thing I will never, never forget is the look on the genetic counselor’s face when we walked in the door. I knew immediately in that moment that our lives were about to change.
We were taken into a room where the genetics counselor explained to us that Owen was missing a part of his 18th chromosome on the q arm (18q-). As Justin sat there nodding his head I thought, “that doesn’t sound so bad.” I must admit, science was never my strong suite so I really didn’t understand much of what she was telling us. She explained that Downs Syndrome is caused by an extra 21 chromosome. This was somewhat confusing to me since Owen didn’t have Downs Syndrome but it did give me a bit more understanding about chromosomes. I just remember feeling very, very confused.
The genetics counselor was very nice, and patient. She answered all our questions, though at the time I didn’t really know what to ask. Then the genetics doctor came in and she was abrupt and rude. She took all sorts of measurements of Owen, throwing around medical terms that in the moment meant nothing to me and she even said some very hurtful things, which I won’t repeat, that left me feeling that our beautiful little boy was less important than a “normal” person.
We left with a huge stack of papers to read, orders to return to genetics in another 6 months, which seemed almost cruel to think it would be that long before we could come back and ask more questions, and instructions to see NINE other specialists to rule out some conditions associated with 18q-.
I don’t remember much about the drive home. I think I was in shock. I do remember crying when we got home. I remember calling my Mother-in- law to ask her not to come visit over the weekend like she had been planning. We wanted some time to process all this new information. That night I had to go to the printers to pick up invitations for a baby shower I was planning for a friend. I can remember feeling sad, that I didn’t want to have to throw this party anymore for my friend and her perfectly healthy baby growing inside her. While I waited in line at the printers I googled information. At the time 18q- wasn’t part of my usual vocabulary so I think I looked up chromosome 18 deficiency. As I stood there reading I thought that I could just run away, that it was all too much to deal with. I knew that Justin was a great dad and that Owen would be fine with him. I wanted to get in my car and just drive and not ever go home. I realized even in that moment how silly that was since I couldn’t stand to be away from my boy! Most of all I was just so heartbroken. How could this have happened to us? I was a model pregnant lady, I followed all the rules.
I wanted to have somebody tell me that everything would be OK. I felt desperate for someone to tell me what the future would hold for Owen. No one could. Even when I found the chromosome 18 group on Facebook, no one could tell me for sure what our little guy would accomplish because 18q- is so variable.
If I could talk to that frightened mommy that was me four years ago there are so many things I would tell her. Most importantly, I would tell her everything will be OK, your life will not be one sad, tragic story with only the one plot line. You, your family, and Owen will have a rich life and special needs will be a part of that but it will not define you.
I would tell her that Owen will walk. It would be one of the first things out of my mouth because that mommy from four years ago was obsessed with that. Even though on his first birthday he can barely sit up in his high chair and would still not be able to sit independently, he will get stronger. He will take his first steps at 22 months, almost 2 years old. That will be hard. But, you will marvel at the process of walking in a way you never have before. You will appreciate it more than you can ever imagine. You will be amazed at how hard your son works at it, his determination will inspire you. Sometimes, even 2 years after he takes his first steps you will still marvel at the miracle of it and it will bring tears to your eyes.
At 4 Owen still won’t be talking. I know this will make you sad mommy of 2011. It’s OK to be sad, mommy of 2015 is still sometimes sad about it, especially when her nephew Gabe talks up a storm and he is only 2 (yes that’s right your sister will become a mommy after many years of waiting!). Even though this is hard for you, know that is isn’t the thing you fear. He will be able to communicate with you. He can express more with a hug than most people can with big long talks. You won’t think about it constantly. You will have him in speech therapy, he will be making wonderful progress, and even small syllable sounds will bring tears of joy to your eyes. One more thing, you will feel so connected to him, no one will know what he needs like you do, because dear momma, you will speak his language like no one else.
He will have friends. He is loving and kind and there will be children that are drawn to him. He will love preschool and do so well there. And you might even be jealous of a certain little girl who holds his hand at school while he stands there grinning ear to ear because you aren’t ready to be the second most special lady in his life.
You will meet the most amazing people! You wouldn’t have had any reason to know these people in your past life. Thanks to Owen and his “designer genes” you will be part of a group full of amazing moms, dads, kiddos, bloggers, photographers, etc. that you never would have known existed. You will be better for having known them.
You will be a better person for being Owen’s mom. There are so many things about you that will be better, you will have more patience, which is good because you will need it. You will care more about other people than you ever had in the past, your heart will grow to include so many new people and experiences.
Finally I would tell her that she will be so much more than just a special needs mommy. Food allergies stink but because of them, she will become a better cook. And you know what? She will learn she actually enjoys cooking! You will take up photography, not as a professional but as someone who enjoys photographing her gorgeous child. You will take up sewing, and believe it or not, you will love it! You will actually enjoy throwing elaborate birthday parties for your child, so much so that you even start to volunteer to help your friends throw their kids parties. You will continue to grow and mature as a person, not just a mommy.
Most of all, the love you have for your son will grow so deep. He will inspire you, push you to be better, and surprise you. No additional genetic material would ever make you more proud of him than you will be. Trust me on this. He is an amazing little person and you will feel honored to be his mother.