Please welcome Kaitlyn Ball from Our Disabled Life to the blog! She's an amazing mom of two children with special needs and is here to share what's in her bag. Take a look at what's in your purse or diaper bag right now; are you prepared for an overnight stay or emergency? Read through and see if Kaitlyn's bag looks similar to yours.
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 they got 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.
Annebelle will likely be in diapers for quite a while, she is not developmentally ready and I am not ready to push the subject yet. Because of this I still carry a diaper bag when we leave the house, I have to make sure we have enough diapers and a pack of wipes as well a change of clothes just in case.
Annie eats a bite or two here and there but her nutrition comes from her feeding tube. This might be the most important bag I pack, anything I forget means I have to go home because I cannot buy these supplies at a store and she cannot go all day without food. In her feeding bag I need her feeding pump and the charger. I usually prep the pump with a bag and tube extension when I pack the pump but I also have to pack an extra tube extension and feeding bag because it is not unusual for her pump to get clogged and need a new bag. I have to calculate how long we'll be gone and how much food she will need. If we are going to be gone for a long chunk of time I usually bring enough food for the entire day - better to have too much than not enough.
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.
Annie is non-ambulatory and has poor muscle tone which means that she is completely dependent on me or her wheelchair. I have to force myself to not just carry her everywhere, it seems easier at first but she cannot help hold any of her own weight so that 30 lbs of dead weight takes a toll pretty quickly. I always take her wheelchair with me and I am always looking for wheelchair accessibility.
The Portland Zoo was fun and all the kids loved it, however almost all of the viewing areas were down steep steps. Annebelle was forced to look from a platform that was quite a bit away from the animals or I had to take her in and out of her wheelchair at every exhibit.
Annebelle is nonverbal and cannot tell me if she is hot or thirsty or tired so I have to constantly check on her. If we are going to be in the sun for long periods of time she needs a sun shade and a travel size fan. I have to make sure I keep her hydrated and push water through out the day. I constantly look for shaded spots that will fit her wheelchair while still making sure she is included in the fun.
Annebelle is developmentally around a one year old and still sleeps in a crib. When we have overnight stays anywhere we have to make sure we bring her pack’n’play. Both of my kids need Melatonin to sleep and for a long time Annie needed a sleep machine to sleep (which I almost always forgot to bring).
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.
What essentials do you take with you on a family outing? Let us know any additional tips you have in the comments below!
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