The Taylor Note

I have been grieving since I was 25 weeks pregnant. When my OB said that something was wrong and I needed to see a specialist. Grieving when I had an emergency C-section and he was in the NICU. Grieving when he was airlifted to New Orleans. Grieving when he had open heart surgery at 8 months old. Grieving at every delay and every diagnosis. Every specialist visit and every therapy drop off. 

But what I grieve the most is that people don’t understand. 22q11 is rare, so rare that in a country of 332 million people, only 1 in every 3,000 births is diagnosed with it. I had no idea what 22q was when I was pregnant, nor did anyone else that I knew and here I am three years later knowing his diagnosis and all his delays along with every single possibility of things he might not be able to do in his life like the back of my hand. 

I get a lot of comments like “I don’t know how you do it,” or “I don’t know what that is,” or “You are so strong,” 

I do it because I have too. Because I have no other choice. I know these things because I have to know them. Because if something goes wrong or he gets hurt and we have to go to the emergency room I have to be able to spout off every single detail about his past three years. 

 I am not strong, I struggle with it everyday but I put the strongest face I can on to push forward and give him the best that I can. I do not want his childhood filled with more trauma than he already has had from his infancy. 

When he was two, right as we had figured out that he had a speech delay, we were at the grocery store, waiting to check out. When an older lady turned to us, talking to him as old ladies do, her smile instantly fell when she had asked him a question and he didn’t reply. He didn’t even acknowledge that she was there. She asked me how old he was. I replied with 2 and she turned to him again and asked if he was going to speak to her because that was rude. 

I vividly remember interrupting her and saying no because he can’t talk yet due to a syndrome. She hummed her disappointment at me before she turned back to her line. From that point on, I knew no one would understand. I imagined how many times I would have to interrupt adults who would scold him for not acting “Normal”. I imagined how many times I would have to explain why he acted the way he did.  Why he wouldn’t speak to them, or answer when he was asked a question. Why he couldn't participate in certain things. 

I grieve that people don’t understand when I explain things he cannot do because of his delay when they counter that their child has been doing that since they were 2 or since they were 1. I understand that they are trying to relate their experience to the conversation. I am well aware that it's normal and not meant to be anything bad or malicious, but I grieve it. 

I grieve it especially when I see him struggle to make friends whenever we go anywhere with children his age. How he sits off by himself and plays alone, observing the other kids around him. He would rather interact with adults than kids his own age and I fear the isolation he would have in school because of it. 

School is an entirely different beast that I will grieve when that time comes. A new fear that is going to implant itself in my heart and head as he only has one more year left of being protected at home. A few weeks ago I was scrolling through Tik Tok when a video crossed my FYP, a preschool teacher yelling in a video telling parents to stop babying their children and maybe they would talk. She stated how she ignored the kids unless they used words, that she doesn’t do things like being handed stuff as a form of communication. 

This has already consumed my thoughts after I watched it. We are already aware that he may be put in special Ed due to his delays, but what happens if he gets a teacher like this? What if he gets ignored because he can’t speak? What if he hands her something, like his lunch or his water and she ignores it because he “won't”  use his words. 

I know these are frivolous things I am worried about but I grieve that one day I am going to have to deal with a teacher like this. 

I have grieved for a long time, since spring 2020, long before he was born and I will continue to grieve for years and years to come. Each old grief will get replaced by a new grief and the cycle will continue until who knows when. And while most of my griefs have changed and evolved these past three years, my grief that people won’t understand will stay with me forever.