Imagine what it was like running errands and navigating life outside the house with an infant and the weight that was lifted (pun intended) as the older and you got to shed diaper bags and strollers.
Now imagine that you get to pack that stuff around with you for every outing, for the next ten years.
Taking care of a child with special needs is not for the faint of heart - it is hard and heavy and tiring - it's also amazing. Seeing that child light up at the park or coming home from a good day at school fills your soul with light.
Gone are the days of impromptu trips to the park or running to the store, leaving the house requires a plan and a packed bag- making sure that you calculate how long you will be gone and that your kid will have enough stuff to make it through the day. The thought of forgetting something at home can be anxiety ridden because most of the crucial things needed cannot be bought at your neighborhood Walmart.
Last weekend we made the two hour trek to Portland to spend family time at the zoo, we ended up staying the night in Portland so our packing list grew even longer. I packed the usual stuff - clothes for the next day, toothbrushes and jammies. But because both my kids have special needs our packing list can grow quite long.
I started Our Disabled Life to spread awareness about childhood disabilities, educate people and normalize disabilities. I have shared every aspect of our journey with Annie to show people we are just like everyone else, we have challenges too they're just a little different.
Over the passed few years I knew something was up with Tanner and started digging to figure out how I could help him. I suspected ADHD for a while, the amount of energy that kid has is unreal. He has always had behavioral issues but they all seemed to be worse when he was unable to calm down. I have been given unsolicited parenting advice for as long as I can remember, "let him run it off" or my personal favorite "send him to my house for a few days and he'll start to behave."
Annie cannot stand independently and her sitting skills are still building. Her CP makes her fatigue extremely easily so when she is sitting she usually goes down into laying pretty quickly. Because she is on a feeding tube I can't let her crawl around and explore while she's hooked up- usually she is in her highchair between one and two hours while her feeds run. I don't know about you but sitting in a hard plastic chair for two hours at a time sounds terrible. I have been searching high and low for a chair for her, something that supported her enough that i could leave her in it independently but I wanted her to be able to get in and out of it easily. This chair is THE BEST purchase I think I've ever made, ever. She sinks into it and looks so comfy. I can put her in it hooked up to her feeding tube, give her a blanket and put on Moana (again) and let her hang out for a couple hours.
Buy this amazing chair here.
Annebelle’s VNS surgery coming up and if we’re going to be honest, hospital stays are THE WORST. Once your child gets admitted and you get a room you are in for a long stay of repeat Disney movies on a uncomfortable “bed” (that is actually a bench). Most children’s hospitals are amazing at keeping the child entertained because it's hard to keep a child entertained and in bed for days at a time. As a mom of a child in the hospital I am constantly thinking of ways to entertain her while she’s stuck in bed recovering and hooked up to machines. Finally night time falls and I have time to myself and it after a couple days that alone time is actually really boring. Parents aren’t hooked up to machines or confined to a room (for the most part) but that doesn’t mean that we don’t need activities of our own, so with help from my special needs community I have compiled a list of activities for PARENTS during their child's hospital stay.
Raising a child with a disability is crazy- we have our ups and our downs, our tantrums and our cuddles, a living room full of toys and equipment, playdates, doctors appointments, therapy and school. While raising annie has been like raising any other child it has been quite different. While Tanner asks for toys and bikes and scooters Annie needs walkers and braces and therapy equipment. I try to make sure that Annie’s therapy is fun and that she uses that time to play while she’s learning. I have gathered a list of eight must have products for families with a special needs child. (just a heads up, if you use these links to purchase we get a small commission)
I have never really stressed about Annebelle’s focal epilepsy, she hasn’t had a focal seizure since she was a newborn and honestly with the exception of the medication that she needs everyday we’ve been pretty lucky on the focal epilepsy front. (Annebelle battled Infantile spasms as an infant but that was a whole different beast- it had different symptoms, dangers and treatments.) We experienced a terrifying week in the beginning of Annebelle’s life where she was having seizures everyday, multiple times a day, but her body responded amazingly well to her medication and the seizures stayed at bay for two and a half years. I was a naively optimistic mom during that time, I knew that there was a high chance that her focal epilepsy would never go away based on her MRI and brain damage, but I was confident that her medications would continue to work and keep her seizure free- they had for so long there was no reason for me to think they’d stop.
I'm Not a "Special Needs" Mom
I started AB + Me over a year ago to help shed light on kids with disabilities and advocate for my daughter and kids like her. Becoming a special needs family has changed our lives, not better or worse- just different. It has opened my eyes to issues that our society faces that I didn't know existed. I am committed to making sure that my daughter is included in everything that she deserves- playgrounds, school, friends, community activities. I want to help make kids with disabilities “normal” in the eyes of society, where they’re not stared at for needing wheelchairs or feeding tubes because the other kids don't think twice about it. I love informing anyone I can about cerebral palsy, epilepsy and incontinentia pigmenti. To help everyone relate to Annie and realize that she is just a little girl like other kids. She wants to be accepted and played with. These disabilities and disorders have become part of our life and are our new normal, I don't see myself as a “special needs” mom- just a mom.
Halloween has always been my favorite holiday — dressing up, hanging out with friends, getting rewarded for light exercise with an insane amount of candy.
When I had my son, Tanner, Halloween was a whole new experience; I loved watching him get immersed in this experience. Trips to the pumpkin patch, picking his costume and planning out our trick-or-treat route. It was amazing to me how his little legs could carry him through streets much longer than mine could carry me.
When we had Annebelle, a whole new Halloween door was opened, with princess costumes and fairies and someone to match costumes with me. I finally get a year where I don’t have to be a prisoner or a race car driver or a fireman.
I anxiously waited as a nurse waved an ultrasound wand over my belly- after raising a boy for two years I was beyond excited to learn I was having a little girl. I could already see us twirling around in tutus, going to ballet and having a little princess following my every move. The ultrasound showed no obvious problems and at twenty weeks we were confident that the threat of miscarriage was behind us. I finally let my guard down and celebrated this beautiful baby girl growing inside me. When Annebelle was diagnosed with epilepsy and developmental delays were expected our world was forever changed. Walking into the NICU while my daughter was pushed on a gurney by paramedics was surreal, she was born perfectly healthy four glorious days ago.
I have thought about writing this post for a long time but couldn't quite figure out how to do it. While visiting my brother and his wife we met Mahli, We were so excited because Mauli had a walker just like Annie. We had assumed that Mahli had CP because it was the only diagnosis I had ever seen use a walker but I was wrong- Mahli needs her walker for a clubbed foot. This misunderstanding prompted my sister-in-law to ask how we prefer to be asked about our child’s disability and both Mahli’s mom and I just stood and thought for a second. Curiosity is normal. When you see a child in a wheelchair or with a walker or with braces on their legs it is natural to wonder. There are times when investigating your curiosity is totally fine but don't forget, curiosity killed the cat.