10 Minutes With: Melissa Jones
Meet Melissa Jones, a hardworking mother and grandmother who advocates passionately for her youngest daughter Lani who was born with a genetic condition called Pfeiffer Syndrome. Below, Melissa took some time to share a bit about the ins and outs of daily life for her family, tell us about Lani’s fiery personality and wild spirit and share a few ways that others could help make this world a more inclusive place for medically complex and fragile children.
MTEAM: Tell us a bit about yourself and your family.
MELISSA JONES: My name is Melissa. I have four children and four plus one grandchildren, (one is a bonus grandchild). I don't get to see them much because life is soooooo busy with Lani and my husband. We do this journey together but my daughter and her husband totally "get it" and understand how busy our new life with Lani is. My girls are 26 and 22, my boy just turned 13, and Lani is 2. My husband and I have been a thing for 17+ years, lol. We waited 15 years for Lani. We never did anything to prevent pregnancy and my husband, although he was pivotal in raising my older girls, always wanted his "set." Though we were told we'd "never get pregnant or carry to term," we had Kamden four years later and Lani 15 years later. Lani was born at 26.6 weeks, with fire in her soul and determination in her heart!!
MTEAM: Your daughter Lani was born with Pfeiffer Syndrome. Can you explain a bit about what it is exactly for those who are unfamiliar and how it has manifested itself in Lani’s life in particular?
MJ: Lani's Pfeiffer Syndrome hasn't been staged, but we are sure she has Type 1. Lani has craniosynostosis and craniofacial abnormalities that are directly related to her syndrome. Lani's knees and elbows are fused, along with her hips, making her gait a little different from "normal." Lani can't extend her elbows or knees fully, but she has adapted so well. Lani has multiple other comorbidities that make her super fragile and complex, medically. Lani is severely speech delayed and slow at meeting milestones, BUT she has always done things her way and her favorite phrase is: "I do'd it" meaning "I'll do it myself!"
MTEAM: Tell us a bit more about Lani! How old is she? What does she love most? What makes her happy? What makes her uniquely Lani?
MJ: Ha. Lani is 30-months-old. Lani is a fashionista!! She loves to pick out her accessories and hair bows at night, ready for the next morning. Lani LOVES her brother the most and coming in at a very close second is the show “Word Party”. Although Lani loves watching LuLu the panda dance in Word Party, she is not a fan of any animal. Lani LOVES her uni.
MTEAM: What’s a typical day in Lani’s life like?
MJ: Typical day? Ha. Well, she goes to daycare 3-4 times a week which started out to be for occupational therapy, but the people in the center she goes to are her peeps!! She loves her Ms. Ariana, Ms. Randi and Ms. April and they love Lani!! We go to many speciality appointments, nearly two hours one way, but CHOA has Lani and her syndrome covered; they also specialize in craniofacial disorders which helps this mamma with her anxiety!! Lani has four different therapies twice a week and we both work full time, lol...
MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Lani so far?
MJ: Our biggest challenge has been qualifying for any resources. Co-pays with our insurance are ridiculous, especially the first 3-4 months of the new plan period. I work in the healthcare industry and my husband works in shipping at a local factory; we both work very hard and do well for our little family!! Even though we both work hard, we can't qualify for anything because of our income. But, if you factor in Lani's special formula, her therapy co-pays, her speciality appointment co-pays, co-pays for surgery and routine radiology appointments to monitor her hydrocephalus and ICP, we are wayyyyyy below poverty level.
The biggest reward is being Lani's momma. Lani keeps me young and she gives me something internally, I've never had; so hard to describe. Her smile, her bravery and carefree, WILD spirit is so motivational and she really lights up ANY room she trots into!!
MTEAM: What advice would you offer to other parents who are just finding out about a Pfeiffer syndrome diagnosis?
MJ: While Lani's Pfeffier syndrome isn't as profound as others, it still takes us on a journey we never thought we'd be on. My best advice is to follow your instinct and ask the PROFESSIONALS questions; stay away from Google. It's not your friend, in any of this!! The special needs community is phenomenal. I'd suggest finding yourself a few good INSPIRATIONAL Mamma's and Papas space on blogs, on social media, and follow them. I've found so much reassurance in reading about others parents’/families’ stories and successes. It's really, really, really easy to get caught up in the negativity of any syndrome or complexity, so if you find yourself falling into the "hole" reach out!!
MTEAM: How would you like to hear other parents respond if their own children notice and ask questions about Lani’s physical differences?
MJ: My son plays football and we love being football parents. However, exposing Lani to the crowd can be challenging. We get the stares, whispers and snide comments and we know it's because people aren't "aware and informed." Yes, it hurts my heart when the 5-year-old walks up to my 2-year-old and laughs, pointing and saying: “Your eyes are so big; bug eyes”. Moreover, knowing that 5-year-old learned to do that from their environment hurts even more. Lani truly has no idea what they are laughing about and it doesn't register obviously, but it doesn't take the sting out of the encounter for me. So, I would hope parents would educate their children. Teach your children to be kind and say "hi," rather than stare and pick the other child apart.
MTEAM: What key changes would make this a more inclusive world for children with Pfeiffer Syndrome?
MJ: Having the ability to have access to the same resources as others, regardless of income or insurability, would help our kiddos tremendously!!
MTEAM: One of your goals is to raise awareness for Lani and other medically complex or fragile children. What are some of the ways you’ve done this in the past or you hope to do so in the future?
MJ: I have a Facebook page set up for Lani. People are curious by nature, so I make it a point to invite people to her page and I join groups on social media platforms and disseminate information about Lani and her syndrome to help raise awareness.
MTEAM: What’s one thing you’d like the world to know about Lani or Pfeiffer Syndrome or medically complex or fragile children generally?
MJ: Lani is amazing. She is gorgeous, fiesty and very smart!! She loves and hurts, just like any other 2-year-old. If you happen upon a complex, fragile child, smile and just say “hi”; teach your children to do the same... Don't stare: speak.