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.
Epilepsy has been a part of our lives since the day Annebelle was born, keeping her safe and preparing for seizures is incredibly important. Annebelle had a Vagul Nerve Stimulator implanted and we have a magnet that we swipe across her device is she has a seizure, I keep her magnet on her wheelchair, her chair goes with us everywhere we go so I know it is always with us. I also have to make sure I bring her medication with us, seizure medication is extremely strict and her meds have to be given at the same time everyday - skipping one dose can cause seizures. She also has an emergency medication, for situations where her seizure lasts more than five minutes or cluster for over 5 minutes, thankfully we have never had to use it but we always have it with us just in case. One of the many not so great side effects of epilepsy - seizures make annebelle throw up. Because of this I always carry hospital vomit bags and 2-3 changes of clothes. I have had to go by a new outfit because I did not bring enough changes of clothes so I try to avoid having to do it again.
Packing our entire lives into the car to go anywhere has become our normal, I don't think about it anymore and packing their stuff is like second nature. I have a system and know exactly how to pack my car to fit everything comfortably.
If it takes packing and planning and exhaustion to make sure my kids get to experience all the amazing things in childhood and be a part of it, then that is exactly what I will do.