New Diagnosis, New Year…

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Today is Avery’s 2nd birthday. While writing this post over the last few days I have been able to reflect on how far he has come, and how much Jeremy and I have grown not just as parents but as people. A year ago tomorrow will be the one year anniversary of when we received his diagnosis. Ironic that I am at the very point in my story where I speak of that day. With that said, I wanted to begin this post by speaking in the present tense and wishing our son a very happy 2nd birthday.

How could we have known a year ago that your diagnosis that was “suppose” to change life as we knew it, would indeed change it- but for the better. I have titled this blog “Lessons From Avery” because he is truly the teacher. In just two years, Avery has taught us patience, gratitude, empathy, kindness, and most importantly the ability to know and care for the things that really matter in this world.

There is a quote from Mae West I love that says…

 “You only live once, but if you do it right, once is enough.” 

Thank you Avery for teaching us how to do it right.

 

When I was first told that Avery’s tests would take 4-6 weeks, I did the math right away and thus knew that the week of his birthday would be the earliest that we would find anything out. This of course gave me a rush of mixed emotions. I wanted his birthday to be special, as it was his 1st, and I did not want bad news creating a large dark cloud over us during that time.

I recall harboring feelings of nervousness about his 1st birthday. The first year of his life seemed to go so slowly. He didn’t appear to be growing in the ways that other kids around me grew. He wasn’t crawling, and had no solid form of communication, so to us it felt as though he remained as a 6 month old. The idea that he was reaching the age of one year felt scary because somewhere deep inside I knew he was not there developmentally and everything in my being wanted time to stand still so that he could catch up to his age. I am beginning to see that the feeling of wanting time to slow down will always be with me as I subconsciously wish that if it did, Avery could “catch up.” Looking back, those feelings I had make me sad. I tend not to admit how I’m really feeling until much later, so in hindsight, I can now see how truly scared I was.

The day after his birthday I made the call into the Genetics Department. I apologized to the nurse for “jumping the gun” by calling prematurely to ask if the results were in. I could tell by the tone in her voice that the results were indeed in. “I understand, and I would do the same. The genetics counselor will have to call you back to discuss.” The tone in her voice was overly empathetic, and once I set the phone down I knew we would know Avery’s diagnosis soon.

I was standing in the kitchen when the phone rang. In one sentence with absolutely no pauses or hesitancy, she said, “He tested positive for Trisomy 21.” The room began spinning and I was speechless. She continued talking, giving explanations of what this all meant. Finally, I had to just tell her I wasn’t listening to anything she was saying and I needed to get off the phone to process and breathe. As soon as I put the phone down, the tears came rushing down my face. It’s hard to explain my feelings at that moment…I was relieved the waiting was over; I was scared for the unknown future; I was sad for my baby boy who I knew would have challenges; I was nervous to make the phone calls to my parents and my brother, for I knew how heartbroken they would be. After a few minutes (which felt like hours), I gathered myself and walked into the other room. Avery was sitting there playing, and as soon as he saw me, he smiled.

It is the most bizarre feeling to be told such life-altering news while the very person for which it is about is sitting in front of you completely oblivious and untouched by it. Not only was he untouched, he was the exact same little boy that he was 30 minutes prior to that phone call. How could I be sad when he is perfect? Immediately I felt guilty for my tears. In my mind, if I was crying or upset, it was a direct reflection of how I felt about my child. Although these may have been irrational thoughts, it was all a part of processing what I had been told.

I was in survival mode. I quickly convinced myself that this diagnosis was not permanent but rather something we could “fix.” In order to not completely drown in sadness, I had to hold back feelings of grief. Still to this day, one year later, I feel as though I haven’t fully allowed myself to grieve. I hold certain degrees of denial about what the future holds for Avery, and the older he gets, the harder I think it’s going to be.
It’s an interesting thing to reflect upon the days after we found out because I am still learning how to maneuver through the changing feelings that a mother carries when she realizes the road to be traveled is unknown. Like any other parent I have good days and bad. It’s a scary thought to think about the future, so I am dedicated to being grateful in the here and now.
An old friend of mine who is battling Cancer reached out and said this to me recently….”This world is about family, friends, and the memories we make. Everything else is trivial and can be changed on a dime. The world is tough, but once you have it figured out, it’s actually pretty easy. Situations crush us only if we let them. If we allow people to stand united around us, and help, we can hold much more weight collectively.”

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