CMV Spotlight: Lindsey and Finley
Spotlight on CMV
Welcome to Sunshine and Shattered Dreams! I am so glad to have you.
My world for the last few years has been advocating. The only story I have been sharing is mine, which is not the only one out there.
This year, I have decided to use my platform to shine a light on the warriors who fight CMV and the parents who advocate alongside them.
I am so excited to have you! Please introduce yourself and your child. Tell us a little about your family:
Hello! I’m Lindsey! I’m a 26 year old mama with 3 kids! Our family is from the Austin, Texas area and we love swimming, finding fun places to eat, and going on walks with our two dogs. Our oldest is 7 his name is Declan. He’s a helpful and loving big brother who loves Fortnite and sports. Finley is turning 4 this month (he is our cCMV kiddo) he loves music and toys that light up, and then there is Laikyn who is 1, she’s our sassy one. She is so gentle and caring toward her brothers. We used to be super busy with appointments, therapy and activities but those have calmed down since Covid-19 and we’ve pretty much just been hanging at home since early March!
Samantha: Before your child’s diagnosis, had you ever heard of CMV, how much did you know?
Lindsey: I had NEVER heard of CMV before. I literally knew nothing and went straight to the internet to try to educate myself as much as possible and was shocked at how little most people knew.
Samantha: How did your journey begin? What was going through your mind?
Lindsey: I had been very sick my entire pregnancy, my doctor just kept telling me it was really bad morning sickness and eventually it would pass. We went into our 20 week anatomy scan so excited to find out if we’d be having a boy or girl. Unfortunately, the appointment turned into anything but exciting and the news that we’d be having another beautiful boy was overshadowed by “red flags” our doctor saw. An echogenic bowel was detected, and our baby’s head wasn’t on target for how far along I was. The doctor said we’d have to run further tests to determine exactly what was wrong.
I completely broke down. It just didn’t seem fair, we had planned and prayed for this baby and now something was going to be wrong.
I got blood panels done and had an amniocentesis that determined I had contracted CMV in the beginning of my pregnancy and that my son was most likely affected.
We switched OB's to someone more knowledgeable and kept seeing an MFM every week to follow growth.
At 28 weeks, my husband and I went to Houston to get a fetal MRI to determine how damaged Finley’s brain was, I remember being so nervous and sitting still while they tried to get images felt impossible. The MRI determine that his brain just wasn’t developing properly. Doctors said, “this child is going to live a challenging life. He will likely never walk, talk, or even breathe on his own. He will most likely be in a vegetative state. The chances of you delivering a live birth are very unlikely and if he does make it to term he may not have the tools to survive outside of the womb and may pass after delivery.” They then offered resources and thought an abortion might be our best option.
I couldn’t even talk. I just collapsed into my husbands arms and cried. What the heck were we supposed to do? Our little Finley already had a name and purpose. We decided that whatever happened would be in God's hands. We talked about and planned with our doctors at home what delivery would look like and how much intervention we wanted. We decided even if Finley was only with us for seconds, hours, days or even years that we would fight for him and only show him love.
We came to terms and accepted that our lives were going to change forever.
Samantha: What secondary conditions does Finley have? What does a typical day in his life look like?
Lindsey: Finley has many secondary conditions from CMV. He has cerebral palsy, epilepsy, cortical visual impairment, severe hearing loss in both ears, microcephaly, global delays, sleep apnea and is feeding tube and wheelchair dependent.
Although Finley is almost 4 he functions at the level of a 5 month old and requires complete 24 hour care.
Finley is up bright and early usually around 6AM. His morning starts with a diaper change, two different seizure medications and water right when he wakes up.
We then put in his hearing aids and hook him up to a CPT vest to shake any mucus or junk out, while he is getting his shake treatment he is also hooked up to a breathing treatment to really help clear his airway. After that we make all the kids some breakfast and blend Finley’s food up and push it through his G Tube with a syringe. Usually while he eats breakfast he watches one of his favorite movies which is a rotation between Frozen 2, Moana, Coco, Sing or Tangled. Him and his little sister are the only ones who don’t seem to be sick of the same movies over and over and over again! Haha! After breakfast we get dressed for the day and play on the floor or go on a walk. After that it’s nap time! Hallelujah! After nap we do another diaper change and CPT treatment/ breathing treatment and the kids usually have lunch or a snack. I have to blend up Finleys lunch and do another tube feed.
Then play until it’s time to make dinner! During this time I usually do therapy and stretches with Finley. Well put him in his special chairs or play with switch toys and then eat dinner! After dinner, we take a bath, get on our pjs, do ANOTHER CPT treatment and breathing treatment. Then we do some more stretching. We give Finley his seizure medication again and then we all lay in my bed and read, or sing then go to bed. Finley has sleep apnea so we hook him up to oxygen or apnea machine (whichever he tolerates that night) This is not Finley’s routine, I still have to give attention and play with two other kids. In between all this there are snuggles, diaper changes, boo-boo kisses and cleaning. After the kids are in bed I can finally do a big clean of the house and set up the stuff we need for the next day!
Samantha: What is your biggest fear for Finley?
Lindsey: My biggest fear is losing Finley. I think about him dying more than I probably should. Every-time we lose another CMV baby in our community I hold him close and cry because although the days are long and challenging I can’t imagine life without him.
Samantha: What is your greatest hope for him?
Lindsey: My greatest hope is for Finley to impact the people he meets. He can’t talk but I feel like people are drawn to his sweet spirit.
I used to have high hopes. I wished the doctors were wrong and that one day he’d just get up and run. I hoped he’d have a family of his own one day but I’ve come to terms with his diagnosis and I don’t want to set unrealistic goals or expectations for him.
Now all I want for him is LOVE. I want to give him a life surrounded by family, friends, teachers, doctors and advocates who love him.
Samantha: How do you take care of yourself? This journey can feel solitary, like you are in it alone even though you know there are many more out there fighting the same fight. Where do you turn to fill your cup?
Lindsey: Filling my cup is something I’m working on. I’m lucky to have a great support system who lets me cry and vent when new diagnosis come up. My husband, my mom, my siblings, a few close friends and my sister in law.
I still feel really isolated at times though. I fee like they’ll never truly understand so I mostly look to my husband because sometimes all I need is a good cry or a break and he’s always willing and able to feed, bathe, play and manage the house while I get myself a little break.
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Lindsey: You’ll learn not everyone’s journey is the same. CMV effects every kid differently so sometimes it’s hard not to compare your journey to someone else’s. Let go of all your expectations and live in the now. Once you come to terms with the reality of it all things seem easier.
Every milestone is a special blessing. No matter how small and insignificant the milestone may seem. They don’t have a timeline, they come with incredible effort and sometimes a lot of intervention through therapy. Celebrate like crazy for every single one. Be proud of not only your babies accomplishments but how much you’ve accomplished and grown.
Having a child with any special needs is so hard. It’s draining and exhausting but so rewarding and full of love. Give yourself the credit you deserve. Even on the days you feel like you are failing, I promise you, you aren’t.
Give yourself the grace you deserve. ❤️
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Lindsey: “Enjoy the best things in your life, cause you ain’t gonna get to live it twice” – Mac Miller
Thank you so much, Lindsey.
Hank is a fan of watching movies on repeat, too. Sing, Secret Life of Pets, Moana, and Hotel Transylvania. And Toy Story is king.
It's very hard not to think about the end of their lives and the pain that it will bring because it's such a real situation for us. We will outlive them and one day we will go on without them, much sooner than our hearts will be ready for.
But knowing that they are here with us to change lives and impact their worlds, gives me so much peace.
If you would like to follow Finley, you can follow Lindsey on Instagram @lbarrera9
To learn more about CMV and ways you can get involved, please visit the National CMV Foundation.