The Day Everything I Was Familiar With Became Unknown
September is the month where I rethink things over and over again. It’s the month of Naylah’s diagnosis. This past September marked our two years in this journey. I still remember it, as it was yesterday, that phone call that changed it all.
The day my child, who I thought was a “typical” little girl with just a heart issue, was given a diagnosis that I’ve never heard of.
I remember answering the phone, the nurse introducing herself and shortly after that, letting me know they’d received Naylah’s results, and we needed to see the geneticist.
I knew at that moment something was wrong. What could of possibly be? I couldn’t image, even with all signs being there. My almost 5-month-old daughter couldn’t finish a 2-ounce bottle, had a hard time following lights and focusing on people, couldn’t roll, was nowhere near able to sit without assistance, wouldn’t put feet down if held up, didn’t have much strength and had the tiniest features ever. Yet, to me it was just a heart issue, and soon she would get passed it.
What could of possibly be?
Everything seems so blurry now; so much has happened since that day. So much progress has been made, so many tears shed, so many days of doubts gone by, so many laughters and moments of pride.
One thing never got blurred — what I felt the day my child was diagnosed with trisomy 5q. I had this knot in my stomach while I sat in the doctor office waiting for her to walk in. I was waiting for her to tell me something terribly awful.
She simply said; “Your child has trisomy 5q; it’s a rare genetic disorder.”
She then gave us the only info she could find — an eight-page internet paper from late 1980’s. She read part of it to us: “small head, small lips, short neck, heart issue, delay…”
Yes, sounded just like our Naylah. She gave us a couple others flyers of where to reach out for therapy, to log her trisomy in and possibly find a match. It was all so overwhelming. I couldn’t stop staring at Naylah, while I kept repeating in my head the name of her trisomy.
My husband was telling me to not worry — that her extra chromosomes will make her extra smart. But what about the other chromosomes she lost? What would they do?
The geneticist couldn’t inform us much. She asked for us both to be tested and results came back that it didn’t come from either of us. She gave us options for if we ever wanted to have another child and tried to reassure us that chances were we wouldn’t have another one with the same diagnosis. It could only be bad, if she was giving us options to have a “normal” child, the child I thought I already had.
The ride back home was silent. Part of me couldn’t help but think it was my fault — that I did something that made my child’s genetics change. I felt guilty. I asked Naylah that day to forgive me. I cried while holding her in my arms.
That day, part of something I thought I knew became unknown. I had the feeling I’d just received a new child after her diagnosis. My love, on the other hand, became stronger. What she had had a name. It wasn’t anymore, “She has heart problems, she gets tired easily.”
The more I would say “trisomy 5q” in my head, the worse it sounded, the more awful I’d feel. I was feeling sorry. How could a mother feel sorry for her child who she loved above all?
I was picturing the future, where people can be so mean. I wanted to put her forever in a cocoon and never let anyone harm her.
I didn’t want anyone to feel bad for her or feel sorry like the feelings I once had. I didn’t want anyone to look at her differently and treat her in any other way than a typical child.
I started doing research. I’d spend lots of time in front of my computer; nothing would come up besides that damn article.
I was feeling alone.
I couldn’t turn to anyone and ask for tips or help.
I now write about our own story to maybe one day help a family that feels lost like we once did. With time we would truly learn all our daughter requires, all her needs, all her treatments and what trisomy 5q was all about.
I mourned for that child I “lost” that day. I really couldn’t picture too far ahead. When you read about genetics and trisomy, it’s all so scary. What they give you — information about life expectancy, problems that comes with it — it all seems so unfair.
That day, everything changed — but not my love towards my daughter. I knew I had to be stronger, that I needed to let go of those feelings I had. Why did I have the feeling of guilt, the feeling that I’d done something for this to happen? Why was I feeling sorry when it didn’t have anything to do with mine or her dad’s genetics?
Why was I so afraid to tell everyone about her issues and new diagnosis? Why, for the longest time, would I just tell everyone she was behind because of her heart not giving her enough strength for anything else?
I wanted to protect her; that’s all I ever tried to do. At the same time, I was protecting myself so people wouldn’t feel bad for us. I felt like I’d failed at my job as a mother. I felt like I hadn’t protected my child from harm — that I wouldn’t be able to protect her from those who will stare and judge and feel sorry for her.
I wanted people to see her the same way I did and do. Yet they stare. If it’s not her size, it’s because of her feeding tube. If it’s not her feeding tube, it’s because of her heart scar. If it’s not her hear scar, it’s because she makes a whole lot of sounds instead of words. The list can go on.
It’s been two years, but what a two years it’s been. I once felt lost and hopeless. I once felt like there was nothing I could do but wait.
There’s so much more to it.
Two years have gone by, those feelings are far behind, and when they haunt me, I shake them off. I put things back in place. I feel proud of all she achieves, I feel proud of her milestones. I’m proud of being her mother.
Every time we’re somewhere I’m still curious about children’s ages and their heights and weights and all they can do compared to my child who can’t do all that… yet.
I still try to protect her the best way I can, while showing the world her beauty of being different.
I accept that. I accept that she hasn’t reached all her milestones yet — that she isn’t talking and eating a full meal orally. It’s daily hard work, teaching her new signs, showing her how to use her boards with new images.
When she eats, it’s a patience game until she shows interest. She needs help from specialists to get to do things others children her age do. It could have been much worse. She could have been undiagnosed or medically need more things.
She lights up a room with her smile and her cuddles. She’s the boss of her own body and mind; when she wants to do something she’ll do it — always has, always will.
It’s not an easy journey, but acceptance plays a big part. I accept her differences, and I’m proud of the little human being she’s trying to become. I accept that she may or may not catch up on her delays, and she’ll always have her differences. Most of all, I accept the fact that my head may not be always held high. That I may shed many tears and have many days of doubts, but that’s not because of my child’s different needs. Because I’m her mother and not everything comes easily, because there will be days I feel like I failed to do my best and because we all have days of doubts, of fears, challenges that are not easy and choices to make. Along with that, there will be plenty of moments of pride, happiness, tears and big achievements.
At the end of the day, two years in this journey or not, I’m just a mother trying to raise my child the best way I can.
She shows me a totally different world — what once I thought was unknown has become our new normal.
And it’s totally OK.
A version of this post originally appeared on The Beauty of Being Different.
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