Super Lillian

The story of a superhero from a Super Mom’s perspective: 

“Super Lillian was diagnosed with spina bifida at 20 weeks gestation, and she wasn’t given much hope to live. She spent her first 18 months in and out of the hospital. 

In total, we average 1.5 to 2 weeks in the hospital per month. Super Lillian has had 3 brain surgeries: VP shunt placement, Type 2 Arnold Chiari Decompression surgery, and full shunt revision. Super Lillian has also had spine surgery to close her defect. She has had 4 surgeries and procedures to correct her apnea. Also, she had a g-tube placed (and later removed!!! Yay, Super Lillian!)

But there is nothing wrong with her. She does have spina bifida. She was born different. Different isn’t wrong. Anyone who spends any length of time with Super Lillian falls in love with her sweet spirit. She has mobility issues, but that does not stop her when she is motivated. She will scoot to where she wants to be, and she is pretty quick. She has gained so much strength in her core in the past year. She has also become more vocal. Not with words per se, but trust me, she lets us know what she wants or doesn’t want! She loves her sippy cup, as well as the My Little Pony cartoon. The bright colors and songs excite her. She loves music and has a special dance when she likes a song.

Cuddles are the answer to most of Super Lillian’s moods. She is so happy all the time. She is rarely without a smile or happy chatter despite everything she has been through. Her smile is contagious; to know her is to love her. 

Super Lillian is going in soon to get her spine checked soon. Right now, she is enjoying summer. In the fall, she will be in third grade. She will have a new teacher next year so some changes will be coming. Thankfully, Super Lillian isn’t too shaken by change!” –Super Mom Krystal.

Hooray, Super Lillian! We know your superpowers of motivation and joy will make this summer and school year the best one yet! 

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