Tatum's Tales: Lia

Welcome to Tatum’s Tales

Tatum’s Tales is a special place where we share the beautiful stories of children living with rare genetic diseases, syndromes, and other extraordinary challenges.

Parents submit their child’s story, and in return, I have the joy of photographing their little one during a complimentary mini session. These stories are more than just words — they’re powerful reminders of strength, love, and resilience.

I’d love for you to take a moment to read their stories, leave kind and uplifting comments to show your support, and share them on your Facebook or Instagram so even more people can be touched by these amazing children and their families.

If you’re new here, I invite you to start at the beginning and read Parts 1, 2, and 3 of Tatum’s Tales: https://www.sarahthompsonprice.com/tatums-tales-1/

Meet Lia!

Lia is a triplet!

I first met Lia and her sisters through a mutual friend who referred them to me for their newborn photos. Over the course of several photo sessions, I gradually learned about each girl’s unique health challenges. Their strength and resilience left a deep impression on me.

I was truly touched when their mom took the time to write out each of the girls’ stories so I could share them here. I’m so excited to finally share their beautiful photos along with their stories.

They are such a sweet, loving family, and I feel honored to tell their story. I hope you’ll take a moment to read Lia’s journey, keep her and her family in your prayers, and share her story with everyone you know.

Lia's Story

When people ask us what we want for our children, our immediate response is that we want them to be compassionate, kind and accepting humans. Sure, bragging rights about milestones, good grades, scholarships and career successes would be amazing bonuses. But ultimately, we just want our children to be good, kind people. 

Our daughter Lia, is our reminder. She has mild hypotonic cerebral palsy, and is globally delayed developmentally, which means from a physical (gross and fine motor) and cognitive perspective, she is far behind her peers. Don’t get us wrong, we still talk at length about her accomplishments, but her accomplishments are so different from most and she has to work 10x harder for them than others her age. 

From the start, our little warrior has faced an uphill battle. Born at 28 weeks, she, along with her two sisters, spent the first 2.5 months of her life in the NICU. The first few days were critical and stressful – a blur of learning new medical terms, signing off on life saving procedures and a whole lot of wishing, hoping and praying.

As the weeks went by and we moved into what the NICU called the growing and feeding phase, we stood by with baited breath as the girls had eye exams, brain scans, ultrasounds and many other tests that would determine their overall quality of life.

It wasn’t too long after we were home that early intervention services started for all three girls. All three were delayed as expected, but there was something a little different with Lia. For the first few months, she was very quiet, didn’t try to move much, struggled with keeping her bottles down and most alarmingly, I remember feeling that she didn’t know that we were her parents. To this day, I can not describe why I felt that way, but there was something different in her eyes. As if she was didn’t have that unspoken bond that we had with our other girls.

As the months went by, Lia’s progress was limited. At 10 months old, she was still not sitting up and at a year old, she was still wearing three-month clothing. Her sisters were starting to interact with each other and Lia would sit on the sidelines. Sometimes watching, sometimes not even noticing. Her body was either very floppy or too stiff to coordinate the proper movement to do things like hold herself up, roll over and of course, walk. Her cognitive understanding was low and simple commands were received with a blank stare. She very rarely interacted with her sisters or other peers. The sadness and frustration we felt as parents is indescribable. To watch your child struggle is terrifying and heartbreaking. The “What if’s” and the “When will she’s” kept us up at night. 

Fortunately, we had one thing that would catch her attention and encourage active participation – music. It was one of the few things she “did” with her sisters. The crazy dancing and wild singing started early on and to this day, Lia can sing every single word to Uptown Funk. (Should we be embarrassed or proud of this?) But it also takes her a ton of effort to say the words, “I love you.”

At 23 months, she finally conquered walking. We were worried, as we knew that she was displaying all the warning signs of a serious condition. But we continued to hear the same thing from her doctors – give her time and she will catch up. Consider her beginning, consider all the things that could have gone wrong. 

So we waited, we practiced gratitude, we held on to hope and we kept going through the early intervention motions. The expectation is that micro preemies will typically catch up by the age of two and much to our relief, Sage and Cameron mostly did. Their progress no longer qualified them for early intervention services and this was one more milestone to celebrate. We continued to work with Lia, but the gap in her delays seemed to be widening from her sisters. We knew she was at a high risk for cerebral palsy and developmental delays. So at 2.5 years, both the pediatrician and neurologist agreed that it was time to start running tests. 

The definition of cerebral palsy is “a condition marked by muscle coordination impairment and/or other disabilities, typically caused by brain damage before or after birth.” Most think of those having cerebral palsy as being wheelchair bound, having very little control of their muscles and not being able to communicate. While this is the case for some, the reality is that there is a wide range of symptoms that could stem from CP depending on where the damage is, how severe it is and how it affects each individual.

All of the tests came back as normal from a genetic perspective, but the MRI showed a very minimal amount of damage. It likely happened in utero or during the traumatic delivery – we will never know. The good news was that the damage was so minimal, that the radiologist marked the scans as normal. When we received the call, we breathed a huge sigh of relief. We called all of our family and friends to let them that she did not have cerebral palsy. The celebration never quite felt right however, as now we were back to square one and we couldn’t deny her delays. Fortunately, her neurologist was thinking the same thing and she called us back into her office a few days later. We talked through the MRI and the damage in detail and together decided that she does in fact, have a mild case of cerebral palsy. While the damage was minimal, her delays are not. The doctor took a closer look at where the damage was and immediately connected the damage to the reasons behind her floppy arms, stiff legs, uncoordinated gait and general lack of cognitive understanding. The official diagnosis was equally a giant blow and a giant relief. 

Now at 4.5 years old, Lia’s days are spent in a special education pre-school where she receives occupational, physical and speech therapy and then feeding therapy outside of school. My husband’s and my days are spent scheduling appointments, battling insurance, talking to her teachers and making sure she is fully prepared to take on this world in the best way she knows how. 

There is no end date to these things and the moment when we finally admitted and accepted that, was the moment that we learned how to understand her better, how to handle the tantrums with a little more grace, how to deal with blank stares when we ask her to do something. And more importantly, how to let her just be the perfect little girl that she is. We were forced to turn the “What if’s” and the “When will she’s” into “She will be fine”, plain and simple. She will be just fine, no matter what. We have redefined what fine means for her, for us and for our family. 

We have also learned that Lia will indeed catch up. It’s a different kind of catch up than what’s written in the books. She’s writing her own book and setting her own milestones. She will work hard on a chapter for months, master it, and then rewrite it all over again a few months later. We never know when the regressions will come and we can never say with certainty when the milestones will hit. But what we can say with certainty is that she is one fierce little girl. Starting her life at 1lb, 12 ounces, she has proven that the uphill battle is no match for her.

She surprises us daily and keeps us on our toes. Her laughter can make the worst of days turn into perfection. Her beaming smile can charm the grumpiest of people and her sweetness can melt any heart. Plus her hugs put a bear’s to shame. We never know what to expect with her and while the unexpected was once a source of huge frustration, now it just is. We sing and dance through the hard, the unexpected, the worries and the milestones. She is a true warrior and a force to be reckoned with. There is no doubt in our minds that big things are in store for this special girl. Our beautiful Lia.