“Our journey with Evely began the day she was born. Up until that day, we had absolutely no clue about 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 devastating when the picture doesn’t end up looking like the one we drew 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 the picture you created.
My pregnancy with Evely was extremely smooth. No sickness, no issues, no worries. We were told at each ultrasound that our baby was happy and healthy. So, we were prepared and ready for a healthy baby.
Labor and delivery at our birthing center was smooth and peaceful. Shortly after our beautiful 6lb 9oz baby girl was born, after her first latch and first snuggles, our midwife said we were going to leave the birthing center and head to the NICU for testing. Evely still hadn’t opened her eyes and wasn’t responding to light at all.
Jon took Evely to the hospital. As I was getting myself together to meet them there, Jon called me and said he thinks Evely may be blind. He said there had been absolutely no response to light at all, and that seemed to be the only logical explanation. What’s crazy is Evely and I both dosed off while cuddling before there was ever any mention of anything being wrong, and I saw her in my dreams with big brown eyes.
So, imagine the shock 16 hours after Evely was born, being told that not only was she completely blind, but she also didn’t have eyes! Evely was born on December 23rd so, Christmas wasn’t exactly going as we hoped.
Her diagnosis was anophthalmia. I can still hear the words, ‘Your baby doesn’t have eyes’ clear as day. What do you mean she doesn’t have eyes?! I know people are born blind, but to actually not have eyes seemed impossible to wrap my brain around. I reacted like a typical mother would and blamed myself. Hell, I still do somedays!
Evely also has microcephaly, CHD, failure to thrive and severe GERD (she is now 100% g tube fed), but those diagnoses would come later. After a 5 day stay at the NICU, we went home thinking that blindness would be Evely’s only struggle. Boy, were we wrong.
Evely did eventually end up with beautiful brown eyes. She now wears prosthetic eyes. They don’t allow her to see, but they give the appearance of real eyes. She had hydrogels implanted at two months old and received her very first pair of eyes at 11 months old.
I swear they will change you forever. These children with broken hearts, congenital heart defects, 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. Getting to Evely’s CHD diagnosis was NOT easy.
At 2.5 months old, after already sharing concerns with my husband, I told Evely’s specialty doctors that I thought something was wrong. They blamed her blindness. I insisted it was deeper than that. They asked me what her symptoms were, but I never had any ‘real’ answers. Looking back, I’m sure I sounded insane.
I told them that I just felt something wasn’t right. I told them that she slept all the time, that I had to wake her to nurse her, that when she was awake, she cried the entire time and that I’d never seen her smile. Crazy, I know. A few weeks later, we were out of town for what was supposed to be a vacation. I still couldn’t let it go. I know mommin’ a child with special needs was new to me, but being a mother wasn’t.
While on vacation I called our pediatric doctor and explained everything. I told him what the specialty doctors said and asked his thoughts. He said, ‘You know your child better than anyone else. If YOU think something’s wrong, something’s probably wrong.’ He sent requests for tests at the hospital closest to us and said we’d have her looked at and hopefully it would be something that could wait until we were back in town.
Well, it wasn’t! Evely’s heart was failing. BADLY! In addition, she had a severe leak and two holes in her heart. She was sent to MUSC in Charleston, South Carolina, and that was our home for the next 30 days.
After the very first heart procedure she was a COMPLETELY different baby. Active and happy! Evely showed NO traditional symptoms with any of her heart issues. It took them a while to figure everything out because her natural heart rhythm is her own, and it beats like no one else’s which meant she was challenging to monitor because they couldn’t keep her on a machine because it would misread everything.
It took a team of 30 cardiologists to come up with a plan of care for Evely. She’s come a LONG way since then. We’re currently on our longest gap between cardio visits. And we made it here because of a gut feeling.
When Evely was officially diagnosed with microcephaly, which makes her head smaller than normal because of abnormal brain development, we were DEVASTATED. It hit me even harder than anophthalmia and CHD. There are so many CHD success stories and so many people who are living full lives without sight. But microcephaly was especially scary.
Not knowing and STILL NOT KNOWING how much of her development and growth it will affect, not knowing if she will ever walk or talk, not knowing if or how much she understands from us, is a scary thing. Microcephaly affects different people in different ways. Sometimes, if you’re lucky, an MRI will give you a clearer answer. And if you’re not, like us, it’s all just ‘wait and see.’ I talk to Evely a lot which is hard when the conversations are all one sided.
I’m not sure what goes on in that tiny little head of hers, but I do know she definitely knows that she is deeply loved, and she knows how to love. And that alone puts her right where she needs to be!
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 child with special needs 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.
It 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. However, because of this experience, because of this loss, I have also gained SO much! I am learning the value of true unconditional love, PATIENCE, and joy. Yes JOY!
I am learning to find joy in the simple things. In the small moments. I find joy when she does what doctors expect her not to do. My heart is full. MY CHILD WHO IS BLIND IS TEACHING ME TO SEE!!!
Luna and Skye (her sisters) will learn to accept differences and embrace others with disabilities. To date, Evely has had 4 eye procedures, 2 heart procedures and 2 GI related procedures. She’s seen by many specialty doctors and has therapies 6-8 times a week. As far as genetics go, we are still without answers as to why any of this happened. But she is so loved.
Life with Evely is FAR from what I imagined. It’s way more challenging, EXHAUSTING, and overwhelming. But I have her. SHE IS MINE. The grieving process of losing what you envisioned to a disability is continuous and appropriate. It 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!”
This is an exclusive story to Love What Matters. For permission to use, email Exclusive@LoveWhatMatters.com.
This story was submitted to Love What Matters by Tameka Diaz of Greenville, South Carolina. You can follow their journey here. Do you have a similar experience? We’d love to hear your journey. Submit your own story here.
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