September, awaiting month.
Month of where I rethink things over and over again.
The month of Naylah's diagnosis.
September marks our 2 years in this journey.
I still remember it, as it was yesterday, that phone call that changed it all.
The day that my child, that I thought was a "typical" one 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 that they had received Naylah's results in and we needed to see the geneticist.
I knew at that moment something was wrong. What could of possibly be?
I couldn't imagine anything else being wrong, even by all signs being there.
My almost 5 months old daughter, couldn't finish a 2oz bottle, had a hard time following lights and focusing on people, couldn't roll, was nowhere near able to sit with assistance, wouldn't put feet down if held up, couldn't tolerate for long period tummy time, had not much strength, 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 many progresses were made, so many tears were shed, so many days of doubts have gone by, so many laughters and moments of pride happened. One thing never got blurred; what I felt the day my child was diagnosed with trisomy 5q.
I had this nod in my stomach, sitting at the doctor office while 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."
To then give us the only info she could find, an 8 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. 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.
David, telling me to not worry that her extra chromosomes will make her extra smart. What about the others 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 any of us. Gave us options, if we ever wanted to have another child, and tried to reassure us that chances were that 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 road back home was silent. Part of me couldn't help but think it was my fault. That I did something that made my child 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 had 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 worst it sounded. The more awful I would feel. I was feeling sorry. How could a mother feel sorry for her child that 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 researches. I would 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.
We were writing our own story and maybe one day help a family that once felt lost like we did. With time only, we would truly know all she would require, all her needs, all her treatments and what trisomy 5q was all about, while hoping she would catch up and do the things she is suppose to at her age.
I mourned for that child I "lost" that day. I really couldn't picture too far. When you read about genetics and trisomy all is so scary. What they give you about life expectancy, problems that comes with it; they don't give a chance with transplant to a child with trisomy because most often they are no match so they give it to those who do have a chance. So unfair.
That day all changed, not my love towards my daughter, I knew I had to be stronger, that I needed to let go those feelings I had.
Why did I have the feeling of guilt? Feeling that I had 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 I would just tell everyone that 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 had the feeling I failed my biggest job as a mother. Protect my child from any harm. Protect her from those who will stare and judge. Protect her from people feeling sorry. Those were the feelings I felt.
I wanted people to see her, the same way I did and do. Yet they stare. If it's not her size, is because of her feeding tube, if it's not because of the tube is because of her heart scar, if it's not because of the scar is because she makes a whole lot of sounds instead of words. The list can go on.
It's been two years, what a two years has it been. I once felt lost and hopeless. I once felt like there was nothing I could do but wait.
There is so much more to it.
Two years has gone by, those feelings are far behind, and when they hunt me I shake it off. Put things back in place. I feel proud of all she achieves, I feel proud of her milestones. I am proud of being her mother.
Yet, every time we are somewhere I am still curious about children ages and their height and weight and all they can do and compare 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 the fact she hasn't reached out all her milestones yet. That she isn't talking and eating a full meal orally. It's a daily hard work, teaching her new signs; show her how to use her boards with new images.
When she eats it is a patient game, until she shows interest. She needs help from specialists to get to do things others children her age do. It could of been much worse. She could of been undiagnosed or medically need more things.
She lights up a room with her smile and her cuddles. She is the boss of her own body and mind, when she wants to do something she will do it, always had, always will.
It's not an easy journey, but acceptance plays a big part. I accept her differences and I am proud of the little human being she is trying to become. I accept, that she may or May not catch up on her delay and she will always have her differences and be behind. That she may always have different needs than a typical child. Most of all, I accept the fact 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 different needs than yours that is "typical", is because I am her mother and not everything comes easily, because there will be days I will 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, happy tears and big achievements.
At the end of the day, two years in this journey or not I am just a mother, trying to do what I think I do best, raise my child the best way I can.
While her, she shows me a totally different world, what once I thought was unknown became our new normal and it's totally okay.