Natalie: What are some words to describe Evely? What do you love about her?
Tameka: Strong! She’s incredibly strong. She’s gone through so much in her 2.5 years and she’s pulled through every time. She’s so full of joy. Nothing gets her down. She fights every battle with a smile that could light up the darkest nights. I love how cuddly she is. She’s so easy to love. One of the things I love most about her is how she constantly reminds me to slow down and remember to appreciate the little things.
Natalie: How did your journey begin with Evely (what was going on through your mind and heart during this time)?
Tameka: Our journey with Evely began the day she was born. Up until that day, we had absolutely no clue about any of her diagnosis. It was extremely overwhelming and heartbreaking! As parents we often have this pre-conceived idea about our children. What they will be like, how they will look, what things they will accomplish in their life and who they will become. It can be sad or even devastating when the picture doesn’t end up looking like the one we drew out in our minds. But just because it looks different, doesn’t mean it will be any less sweet. In fact, it will probably be better than that picture you created.
Natalie: What is the name of the condition that Evely has? Can you share with us a little more about it?
Tamkea: Anophthalmia (the absence of eyes) is the diagnosis we learned about the day she was born. Her eyes never developed in utero. It’s not common so, it’s generally not detected during ultrasounds unless you’re looking for it. I can still hear the words “your baby doesn’t have eyes” clear as day. Like what do you mean she doesn’t have eyes?!
I mean, I know people are born blind, but to not have an eye seemed impossible to wrap my brain around. What you see in pictures of Evely are prosthetic eyes. They don’t and won’t allow her to see, but they give the appearance of eyes. There’s no treatment for anophthalmia. I reacted like a typical mother would and blamed myself. Hell, I still do some days! When Evely was 3 months old, we learned she also had CHD (congenital heart defect) and microcephaly (small head). There’s no treatment for microcephaly either. So, I’m still trying to process the whole anophthalmia thing and BOOM!
She’s in the hospital for a month 3 hours away from home with heart failure and now, we’re even more unsure of what to expect developmentally because of the microcephaly. I swear they will change you forever. These children with broken hearts will wreck you in the most beautiful way. You’ll never learn to surrender more when you hand your child into a surgeon’s arms. You’ll never be more terrified than when you love a child you can lose. You’ll never be more grateful for every moment when you face the uncertainty of time.
Natalie: What are your worries and wishes for Evely?
Tameka: My greatest fear is failing her. I want her to live the best life possible. I want her to have quality. I want as much independence for her as possible. Parenting a blind child can be one of the most isolating experiences ever. It also comes with fear. Fear of the unknown for your child’s future. The fear brings on pressure. Pressure to make sure you miss NOTHING that will allow your child to live the best life possible even when the odds are against them.
Statistics shows that 70 to 75 percent of people who are blind wants to work, but are unable to find jobs and that fewer than 10 percent of blind children are being taught Braille. Mostly because Braille learning tools like toys, books and educators aren’t available to those children in a lot of places. We have one day that Evely doesn’t have therapies and appointments so, we usually spend it out having fun. You know? Typical stuff!
We visit our local library each week and it really bugged me that I had to bring Braille books along with us so Evely would be included. So, I spoke with management and I brought in a few of Evely’s books from home that had print and Braille which would allow families to be a part of their blind and visually impaired kid’s growth. Braille books are now available at our local library and families are putting them in hold before making it to the shelves! You can follow this journey at Advocate Life A Mother.
I still haven’t visited any restaurants in our area that provides Braille menus. I am working so hard to do everything I can to ensure as much accessibility as possible for children like Evely! Disability shouldn’t mean disadvantage.
Natalie: I’m passionate about the special needs and self care connection. Raising a child with a diagnosis can bring some big challenges, how do you cope through the tough days? Are there any self care practices that helped you on your journey?
Tameka: I agree! Self-care is SO important. I now understand the phrase “you can’t pour from an empty cup” means. I use meditation and yoga. It really helps me to remember to breathe. Most importantly, especially on those really tough days, I force myself to write down the positive things about that day. There’s always something to be grateful for.
Natalie: Siblings can be such a powerful and amazing source of connection and inspiration. What are some special moments they have shared together, do they understand Evely’s condition?
Tameka: Evely has two sisters. An older sister, Luna Blu (4), and a younger sister, Avani Skye (10 months). Luna understands her sister is blind and what it means to be blind. Luna is so involved with Evely’s therapies and treatments. It is such a beauty thing to watch. The bond between siblings, one being with special needs is something none of us can understand or could achieve. Luna’s love, compassion, and belief in Evely beams every day. She recently learned that Evely’s blindness is permanent. That was really hard! When Luna would talk about the future with her sisters, she’d say “When Evely opens her eyes and isn’t blind anymore….” So, learning Evely’s anophthalmia diagnosis is forever was devastating for Luna. I truly believe that Luna and Skye will learn to accept different and embrace others with disabilities because of their sister.
Natalie: What advice would you give a mum who is beginning her journey after receiving her child’s diagnosis?
Tameka: Having a child with special needs is a lifelong grieving process. Each new milestone or major life event that doesn’t happen for your child, is a painful reminder of what you lost due to their disability. Life with Evely is FAR from what I imagined. It’s way more challenging, EXHAUSTING, and overwhelming. But I have her. SHE IS MINE. So, to my fellow parents with kids with special needs, the grieving process of losing what you envisioned to a disability is continuous and appropriate. Doesn’t mean you’re a bad parent or love your child any less. You create new memories, new milestones and new things to look forward to. But this doesn’t mean the life you dreamed of, the one ripped away by a diagnosis won’t creep back into your heart and cause grief. Cry, scream, GET MAD! Do what you need to do to get it out of your system then go on loving your beautiful, challenging and unique child who is ALL yours!
Natalie: What are some lessons and blessings you have learnt since becoming Evely’s mum? How has it changed you as a person?
Tameka: Being a mom has taught me so much. I had no idea how strong I am until these girls came into my life. I have gained SO much because of them! I am learning the value of true unconditional love, PATIENCE (OMG), and joy. Yes JOY! I am learning to find joy in the simple things. In the small moments. I find joy when Evely does what doctors expect her not to do. My heart is full. My children, especially the one who happens to be blind, is teaching me to see!
Natalie: Outside your motherhood role, what lights you up, what are your passions?
Tameka: Music! I sang full time before Evely was born. I absolutely loved it. I’m taking a break from it right now for my girl, but I plan to get back to it in the near future. Music is still a major part of our lives and it also happens to play a key role in Evely’s development, but I do miss singing.
Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Tameka: Conscious gratitude. Choosing gratitude isn’t easy when you’re grieving. Sometimes it feels impossible. But when you open your heart to feeling thankful, for whatever reason, your life begins to change and your grief journey takes on a new feel which helps to lift your spirits and inspire you to make beauty among the ashes. I think our children are sent to us with their unique and special abilities to shape us into the person we are meant to become. So, love your little ones exactly how they are. They will be your greatest life-long teachers.
Thank you so much Tameka for sharing your incredible journey with us. Feel free to leave Tameka comment below.
Professional Photo credit: Ashlie Moon
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