Hi my name is Daniella and I am the mother of one incredible human being her name is Naylah and she just happen to have trisomy 5q a rare genetic disorder . We are not sure of how many other children there is with trisomy 5q, but we were given someone truly rare. Naylah is non-verbal but she sure will let you know her likes and dislikes , have a feeding tube to get extra calories as her intake via mouth is not much( even tho she will try anything, she has a hard time coordinating her chewing and swallowing) the tube is really making her thrive.
I am originally from Brazil and grew up in Switzerland, came to the US to learn English and study and in the meantime I met David, (Naylahs dad) who is originally from Senegal. We are both French speakers and Naylah can understand some. She has two older siblings from Dads side. Aby and Alex who she is in absolute awes with . David and I separated after 6 years. I am now a single mom and now juggling working, therapies, and doctor’s visits.
We are absolutely thankful for Naylah and wouldn’t trade a single thing about her. What makes her different makes Her.
Miggy: Welcome Daniella! Thank you so much for sharing your story and your precious Naylah with us today. First, can you take me back to the day you knew Naylah would have special needs? Was it before birth, shortly after birth, or sometime after that? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?
Daniella: I had a so call “normal” pregnancy until my 20 weeks check up, when they noticed something wrong with Naylah’s heart. At 37 weeks I was induced, plans were to have heart surgery right away but she was born pink and full of life.
Months were passing and something was “off.” She wasn’t meeting milestones, and barely eating. Cardiologist reassured it wasn’t the heart, he would often stare at her and one visit he said “Naylah’s head is really small and her ears set are really low, I would advice to see geneticist.” So we did. Naylah was 5 months old then, fitting on 0-3 months clothes. The period of waiting was the longest. Until we received that phone call to come to the office. My heart sank, I knew if they weren’t telling by the phone something was wrong but what was it? She calmly came in with a paper, told us to sit down and that Naylah had trisomy 5q a rare genetic condition. So rare, that the only info she could give us, was a google paper with the characteristics of a child with trisomy 5q. I kept looking at Naylah. Looking at the doctor. Looking at her dad who kept telling me in French, “Don’t worry, I’m sure is nothing.”
Gosh. How all the sudden I felt so guilty? How can 3 words all the sudden make you doubt your ability as a parent? As I was reading the notes, tears kept falling. And in just an instant all the dreams I had for this child might never happen and all the sudden our journey was about to change. A heart problem can be fixed but you don’t fix genetics. Is the world going to accept her now? Guilt took over me. I was “mourning” for that child that was in my arms and I was so lost about what our future was going to be like.
That day I was handed out “Welcome to Holland” poem by Emily Perl Kingsley. It has been a dear poem to my heart.
Five years has gone by, even though I wish things to be different for my child, I no longer cry for the dreams I had for her. I’m scared of the future and acceptance from others but it is also my job as a mother to educate those who asks and wonder what’s wrong with her.
Naylah is a pure joy and to this day by being non-verbal and only saying “mommy” and “daddy” I feel like I have a whole conversation with my child. She shines such a bright light.
I advocate for her. I go behind every single thing she needs. It’s our new normal. She is loved, oh that she is.
Miggy: Could you please educate us about trisomy 5q and explain how your child’s needs affect your day-to-day life?
Daniella: Naylah had open heart surgery at 9 months. To repair a ventricular septal defect (vsd) and was put on heart medicine for tachycardia. She did things pretty late. She sat for the first time at 10 months old, walked at 2.5years old. When she was 1 we decided on feeding tube to help her gain weight, thrive and have more energy than sleep and eat. Right before the feeding tube surgery, she was up like a newborn, every two hours to eat 2/3oz at a time. She weighed about 14 lbs before surgery. She is non verbal we are trying to teach her to communicate via the iPad with an app call proloquo2go, as sign language are quite hard for her.
We have a handful (if that) of people that can watch Naylah . That knows all her feed. It’s hard at times that I can’t just hire a last minute sitter . She solely depends on us. For diaper change, to feed her, to understand her wants and needs. It’s an adjustment I can never just leave the house. I have to pack a bag. For the feeds, for the diaper change we never just get up and go. Planning a weekend trip feels like I am leaving for awhile. It’s our routine. I can now do it pretty fast, it just what goes with her needs.
Trisomy 5q children have a small head, small nose, global delay, plagiocephaly, Heart issues can be from genetics or not.
Miggy: What are the biggest worries you have for Naylah? On the flip side, what are your hopes and dreams for him/her?
Daniella: My biggest worries is how the world will see her as she grows. How it will affect her as she understands all you are telling her. My worries is when I’m no longer part of this world who will care for her?
I hope that her voice will come, that one day I will hear all about her likes and dislikes instead of me assuming that’s what it is. I hope one day we will have long conversations and her telling me how she sees this world and I hope one day she is no longer seen as a diagnosis she is not define by that she is so much more.
Our world is finally starting to accept differences and it’s a job of us as a parent to educate our children about all the differences. I still get the “pity” look when they find out she is my only child, a little pat in my back, or how do you do it? Wouldn’t you though? She is your child all you want is protect her but also push her towards the world. I hope her little friends now see her the same way when she grows. They see nothing wrong with her, and really there isn’t nothing wrong, she is Naylah , my daughter who she is always been, she just learn things differently, takes her a little longer but once she gets it, you will see pride shine in her face because she knows she just accomplished something big.
Miggy: How can people best approach or respond to Naylah? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Daniella: Luckily so far we haven’t had many of those. But stares when they ask me her age. She is very petite for a soon to be 6 years old. She is mostly in 4t and has the size of her 3 years old friends.
Or when they see her eating and ask why the feeding tube? I use to stumble in my words but today I just say if it wasn’t for the feeding tube I don’t think she would be where she is at now. I don’t go telling everyone I meet; I have a daughter and she also has special needs. I have caught a few with a surprise look, when they first meet her because “I left something out.” Almost six years later to me she is who she is. I don’t introduce her as, this is Naylah , she has trisomy 5q. Or I have a child but that child has needs. This is my daughter. “While we try to teach our children about life, our children teach us what life is about.”
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to your son/daughter?
Daniella: Naylah has two older siblings from her Dad’s side and she has a special bond with both of them, but her big brother Alex is her world. I mean, as soon as he walks into the door the biggest smile comes on. She often forgets she is the little sister. She will fight him, try to get his stuff, the typical sibling love. I love watching them entertain. He always says it so naturally when his friends ask about Naylah, like hey this is really no big deal, it’s just a feeding tube, it’s just an eye patch like “eh this is how she is and that’s my sister.” I totally admire him for that and often wish us adults had a child’s mind on how we really don’t notice differences it is the society that put labels on everything. I know this little guy will always have his little sister back.
Miggy: Tell us something you love about Nyla. A special story, a personality trait or just something others might not know.
Daniella: Naylah’s hug are totally magical, they are tight and full of love. She is giving you, her very best tight hug. She also loves to make fun of you, and make any awkward situation totally laughable. Let’s say a friend fall, she cracks up, that even the child that just fell in front of her will just start cracking up. I don’t know just something about her. But don’t laugh at her if she is the one to fall. She totally will not think you are funny. Ha! She has a joy for life that is enviable and that’s when I try to not stress myself too much and see that the end of the day as a parent I am doing an okay of a job even tho I feel like the day was chaotic.
Miggy: Are there some ideas you had about having a child with special needs that have since changed?
Daniella: I grew up around children with disability. Totally unrelated from parents on genetics testing–we all got tested. Nature decided this way. I have a teenager nephew with Down syndrome and a teenager niece with hydrocephaly and development delay. I was familiar with therapies and all the “looks” and the worried look from my siblings faces on how harsh this world can be. Then being teenager sort of prepare me on the worries of teenager years something so far ahead but that makes me think about it (period, hormone changes, What if she is still wear a diaper and so on all things that make my heart sink.) What I wasn’t prepared was all the surgeries, the hospital stay, home nurses, family being overseas, and truly knowing at your hardest moment those who come to you and be like I can take over for you. Hold on tight to those people. They mean it.
For the longest time (until Naylah started kinder) I was home with her. I lived for Naylah. It was therapy , doctors, making sure she could get all services provided out there, fighting insurance, getting approvals. I forgot myself for a very long time. Always putting her needs first and I still do. But I am at a point of my life where I can finally breathe, and take once in awhile a night for me, and not talk about delays, therapies and doctors coming up. It is all settling in place.
Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?
Daniella: Breath, just breath. Let it all out, cry, don’t hide yourself, you have nothing to be ashamed of. You are human, what you are feeling is totally normal. Things will be okay. It may take some time but you will get adjusted and this will be your normal. Don’t compare yourself to others nor your child it will cause more pain than good instead cherish her inchstones and milestones.
Reach out to others. Don’t forget yourself for your child needs you and as long as you are happy so will be your child. After each storm hits, the sun will shine again, and that human being you are raising will make you hella proud. Speak up for her, advocate for her, teach others about differences for her. Things will be just fine. Step by step you will be that parent you had imagined to be.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Daniella: The unconditional love is real. I mean we all love our children unconditionally but I always thought we were the one to teach our children about life, instead I have a tiny human teaching me what life is all about.
She taught me about heart issues, feeding issues, reflux, figure out new ways to communicate, special devices. I try to remind other parents that has reach out to me, that you are not alone in this. Yes I haven’t met a child with trisomy 5q yet, but the special need community is huge and each parent will give you the biggest support and even if it does feel lonely at times, there is something totally magical about our journey.
It’s totally the opposite you had envisioned but it is totally worth it. The pain, the sorrow you once felt will be taken over by something far more powerful.
