At Lil Helper, we support all families and all kids. That’s why our CEO Mohammed takes such pride in listening to customers and taking their feedback as much as he possibly can. Whether it’s designing larger menstrual pads, updating our cloth diapers, or our God Forbid Guarantee, we take every customer comment to heart. That’s why Mohammed started designing G Tube Pads for medically complex kids! Learn all about the process on our TikTok.
I recently joined the club of parents of medically complex kids. And while my little guy doesn’t require G Tube Pads, he has a rare genetic condition that requires other care, like medical alerts and daily medication.
Driving to a medical appointment recently, I heard song lyrics on the radio that spoke about a pregnancy. The line that broke my heart was “Just as long as he or she is healthy, that’s ok”. This is a common phrase people say when asked if they re hoping for a boy or a girl during pregnancy.
Well my little one isn’t ‘healthy’. He has a chronic, genetic condition that requires medication and monitoring for life. But at just 2 months old he is also: funny, sweet, bright, and so fiercely loves and is loved by his big sisters.
As a new mom to a medically complex kid, I wish people knew how hard it is when folks ask how he’s doing, if he’s healthy, etc. It’s a complicated question. And it can feel like “wishing for a healthy baby” means you’re wishing for a baby not like mine. Instead, lets wish for babies that thrive, and that bring joy to the world.
With this in mind, I asked parents of medically complex kids in our Unsnapped online community, what they wish people knew. Here’s what they had to say:
What I wish people knew as a parent of a child with shaken baby syndrome:
Yes, we spend 4 days a week in back to back therapies. No, I have no idea if it will help her regain a normal future. Yes, it is both terrifying and heartbreaking. No, I will never regret her.
What I wish people knew as a parent of a child with over active Mast Cells.
My child wears an Epipen because he can go into anaphylaxis at anytime. No we don’t know what triggers the episodes. Don’t hesitate if you see anaphylactic symptoms blue to the sky, orange to the thigh.
What I wish people knew as a parent of a child with Autism Spectrum Disorder.
No, we are not scared of the label. Yes, my child has many skills and has an amazing vocabulary. Yes he’s too loud, doesn’t stop moving and is always seeking sensory input. My child is NOT rude for not answering your questions or doesn’t smile and say Hi back to you. STOP putting people on Autism Spectrum in a box.
What I wish people knew, as a parent of a Deafblind, Autistic, and intellectually disabled child:
Those squeals and screeches that you whip your head around in shock at in the grocery store, that you roll you eyes at in a restaurant, that you gossip about being distracting during meetings, those sounds are music to my ears. They are the soundtrack of my life, the sounds of my child learning to communicate and make her thoughts known in a world not made for her. She is learning to use her voice, and I’ll never tell her to stop. She deserves to take up space in this world.
What I wish people knew as a (queer) parent of a child with Coffin-Siris Syndrome:
I will always meet my child (and yours) in a place of radical acceptance. He is exactly who and what and where he is supposed to be. He is valid and worthy. He doesn’t need to meet milestones, or use his words, or be quiet in public, or eat with a spoon - and we aren’t killing his or our joy by trying to make him. You can think what you want about my “permissiveness,” but he is safe with me to be who he is - and your kids are, too.
What I wish people knew as a parent of a child with ADD/ODD a speech impediment, dexterity issues, and an IEP.
Those melt downs in the stores you see and gossip about are overwhelming but I wouldn't trade it for anything. The mess he makes sometimes when we go out to eat is okay because he is trying to hold his fork the right way. We have counselor's, speech therapists, and occupational therapists but I wouldn't trade it for anything. This is my miracle man and well at times I am tired and overwhelmed I am just so glad he is here.
While our babies are medically complex, they are also loving, loved, and deserve to take up the same space in this world as any other child - including supportive products like Stoma and G Tube Pads, designed with joy, empathy, and dignity in mind.
Does your child have unique needs? Is there a product Lil Helper could design to make your parenting journey easier? Let us know in the comments below!