In Loving Memory of Josie Fernandez
Hosted by Erica Jolene and Jenny Park | Transcription HERE
Today’s episode is dedicated to honoring the beautiful life of our little friend, Josie Fernandez.
Josie’s life was filled with so much love. Love for her family, love for her friends, and so much love for her four-legged friends. To honor all the love that she brought into this world, I put together a montage of love for our little Rapunzel.
Our hearts are with Josie’s family as they navigate the unimaginable. Please keep this family in your prayers. For those who would like to help them through this challenging time, I will be sure to add a link to their donation page as soon as it is ready.
You can listen to Josie’s full story in all of its beauty in the episode “Love Needs No Words” from Season One.
Welcome to Atypical Truth. I'm your host Erica Jolene. Today's episode is dedicated to honoring the life of our beautiful little friend, Josie Fernandez.
If there's one thing you'd want people to know most about your role as Josie is Mom, what would it be?
I would want people to know that I am the lucky one to have Josie as my daughter. I cannot tell you how many times I hear people say how lucky Josie is to have me as a mom. But in reality, she's given me far more than I could ever give her in return. I call her my little slice of heaven. And it is so true just to be in her presence to feel her pure spirit. It's more than I could never ask for. I didn't know that I needed that in my life before I had her
What is Josie's favorite activity?
So, she loves anything in water she loves soaking in the bath. In her hot tub in the pool in the summer. I call her a little mermaid because you can just tell. She gets this weightless feeling and she's able to move her limbs more. It's it's pretty cool to see. She also likes to hold us as we call them cuddle time "hold yous" in our house. Or watching shows movies listening to music playing toys. She just if she's awake, she wants to be in the middle of it. She wants to say I love that about her.
Okay, I think I know the answer to this, but I am excited to hear your description. Does Josie ever gets sassy or annoyed? And if so, what is the cause?
Every single day, every day this girl sassy. She's annoyed with something. I mean, the eye rolls, the dramatic size, the growls you know this, your kids put you through the same thing. And she's recently started saying she'll tell you no. It's this little in the back of her throat sound and it happened when it first started happening. I thought, "Okay, she's she's answering me. She's saying no. But maybe it's a fluke?" But now, it's all the time when she's awake. And you ask her a question and she will tell you no. So that's another big sassy thing we're dealing with now.
Wow. That's amazing.
It is amazing. It's incredible.
What a milestone...oh my gosh.
Who would have thought...
That is hilarious! Oh, that is hilarious. So we've talked about Josie's sassiness but I also know she has the most beautiful smile and boy do those eyelashes set that smile ablaze. I mean, girl is on fire when she smiles.
And of course, she learns to say one word and it's. "No." I mean, that's just who she is. She's going to tell us how she wants things and let you know when it doesn't go her way. And she definitely doesn't have a certain something that makes her annoyed. I mean, one day, she's mad that you're doing her hair or the commercials during the movie are pissing her off. And so it's just day by day what bugs this girl, but definitely physical therapy is a big one that irritates her. And it's it's been so funny to watch because her physical therapist is incredible. She's been with us since we brought Josie home from the NICU at two months old. She is the most upbeat happy over the top positive person. So just see the dynamic between her and then Josie who's fake sleeping, eye rolling, telling her no...it is, it's hysterical. It's pretty funny.
The girl has some eyelashes that's for sure.
What makes her smile and how would you describe that and then happiness if for those who've never met Josie
So I think her family especially her big brother Noah, make, that's the, he gets the most smiles, eye contact, everything. Um, her nurses, her dogs. I noticed her smile a lot, you know, the people she's used to seen every day. She's very expressive with her facial expressions. So when she's happy, even if she's not smiling, her eyes are wide open. You know, she's looking at you. She wants to engage with you. Where if she's annoyed, she's rolling her eyes. She's turning the other way. So I think It's pretty easy for someone, if they took the time to really look at her and engage with her to gauge her facial expressions. She's good about getting her feelings out there. Her smile can light up a room and lights up her entire face. So when she's happy, and she's smiling, you know it. It's infectious.
I love it. Yes, it is from someone who's always witnessed it online. It definitely is.
So your son, Noah, who you mentioned earlier, how old was he when Josie was born?
So he was five, he had just turned five. He just turned eight last month, he's my Valentine's baby. So he was five when Josie was born.
how has his love for Josie change to you as their mom.
I mean, watching Noah, and the way that he loves his sister and how connected they are, it's truly been one of my greatest joys in life. It's shown me the meaning of unconditional love. You know, as well as taught me that love, it's not bound to words or physical actions or what something can do for you. Part of loving Josie is taking care of her and so he sees all this. But he's very knowledgeable on her condition. on her oxygen use. He's such a help. He just learned how to suction her. And he's so proud of all those little things. He wants to be involved. He always has. Their relationship is just based off of their love for each other. It's not what Josie can do or the things they do together. Noah genuinely loves Josie for who she is. It's hard for me to describe the closeness of their relationship because I always say you have to see it. They are like little soulmates. And it's always been that way. I mean, since we brought Josie home from the NICU, they've just been connected. He seems to understand her on another level. I know, because he'll tell me things like, "oh, Josie's watch this episode and she doesn't like it." Or, "No mom, she doesn't like that color of shirt. No." And I finally said, "Does Josie talk to you? Does she communicate with you?" Because I'm like, "how do you know these things?" And he told me, he said, "Josie just does a really good job of getting her feelings out there. And I understand everything that Josie does."
And it was so profound for an eight year old. I was like, "Okay." So I tell people if Noah says something that Josie likes or doesn't like it, go with it, because clearly they have something going on. They'll be at the other end of the house yelling at me. "No mom, she hates that show. Change it, to something else." I go with it.
That is amazing.
Just go with it. Just go with whatever Noah says he understands her better than anyone else. So...
Yeah. And so how does he go about educating others, like, especially friends or, I'm sure he takes the lead even when an adult enters your home? How does he do that?
He does. He's extremely protective of Josie. I mean, even I have to watch what I say if I say something like, "Oh girl, your breathing sounds terrible." He's like, "Mom, that is just rude." And I have to say, "I don't mean it rude." And he tells me, "Well, how do you know that didn't hurt her feelings. Let's just try not to say things like that." So...
My gosh, I need him here!
He's the best little advocate. So when we have a new nurse, you can almost see that hesitation. And he'll say things like well, she needs to be suction now or she likes this. She likes to lay on this side. And so he does a good job about sharing her likes her dislikes. It's so sweet. And he does a good job of letting other people know about about his sister. He does a good job of painting who she is what she likes. You know, he had a friend come over not too long ago. And his friend actually just came in sat by Josie like it was no thing and I assume because their conversations at school are about his sister what she likes what she doesn't like, it wasn't a big deal.
What have you learned from Josie?
The biggest lesson I have learned from Josie is just truly how to live life. I mean, despite dealing with the unimaginable pain and suffering each day, she still finds a way to be happy. And every moment that she feels okay, she's in a good mood and she's smiling and giving kisses and spreading love to everyone around her. She's really taught me what's most important in life. And that's just to be appreciative of what you have and enjoy each good moment that you are gifted. I mean, she doesn't care about her disabilities or the machines she's hooked to. She is simply grateful to be alive. She has taught me not to stress about the things I cannot change. And just to be kind to the people around me and be grateful to be here. I mean, I feel like if everybody could live life like her, it the world would be a much a much better place.
I agree. I absolutely agree. If there was one thing that you could share with other complex needs caregivers to make their lives just even one tiny bit easier, what would it be?
Enjoy your child? It's scary. You're grieving. I mean, it's horrifying. I'm still scared all the time. But when I look back to when Josie was little, I was so caught up in grief. That I feel like I didn't fully soak her in as a sweet little baby that she was, and I wish I would have known those were the easy days.
Those were easy. I mean, I didn't know what I was wrapped up in grief. I couldn't look at other babies in the store and think that that should be me. Soak in your child every day that you have them because they are a gift. These kids are a gift from above. Soak them in every day that you have them.