Week 5–“Why Details and Planning Matter to The Disabled Community…” The Agonizing Truth Behind Everyday Living

Week 5–“Why Details and Planning Matter to The Disabled Community…” The Agonizing Truth Behind Everyday Living

It’s obvious.  Jason and I are not “Type A” people.  Some “Type A” people seem to thoroughly enjoy talking about the details of ANYTHNG. Not to mention, the absolute necessity of planning out their day, week, year, etc… Sound familiar to any of you?

Jacoby is the purest form of a “Type A” individual I know. She beat her twin brother, Kaleb, out of the womb, and has been taking charge ever since. Details and planning have always been top priority to her, but it’s her “it will all work out”‘ parents that have needed to make some SLIGHT adjustments since her accident.  There are days that I wonder why God would allow a family that functions like ours, to take care of someone as organized as Jacoby; it just doesn’t seem fair to her.  Although, there is never enough time to “ponder” too long on these injustices. Gotta be planning and laying out as many details as my chaotic brain will allow for the day.

Let me give you a few examples of the planning that is required just for everyday activities, such as:

  1. Getting Up! For many of us, the alarm goes off, we push snooze at least twice, but then we stand up.  We use the restroom, wash our face, brush our teeth, comb our hair, do make-up and then get dressed for the day.  A shower may or may not be needed.  However, when Jacoby’s alarm goes off, she needs someone to come and roll her to her other side for 10 min. Then she needs to be rolled on her stomach for around 15-20 minutes to stretch out her hip flexors because she sits in a wheelchair all day. After this, we roll her back over, help her use the restroom, and get her dressed. All clothing must be put on carefully because nothing can be restrictive or bunched anywhere. (Something as simple as bunched clothing could result in a hospital visit.) We then proceed to wash her face, brush her teeth, put on make-up, do hair, etc… On shower days, it generally takes anywhere from 1 1/2 to 2 hours to get ready in the morning. Can you see how planning matters?
  2. Transportation!  Transporting Jacoby is not for the faint of heart. For most of us, when we want to go somewhere, we walk out to the car and get in.  SPOILED. We quickly buckle our seatbelt, and off we go.  Not those in a wheelchair.  Jacoby rides in an accessible van that has a ramp that comes out of the bottom of the vehicle.  This allow her to drive up into the vehicle, but then she has to be buckled in on all four sides of her chair and across her chest.  Let’s just say it’s not very appealing to watch a 41-year old momma bend over and try not to get stuck while buckling her in the car.  I’ve realized the need to stay in 1/2 decent shape just so I can buckle her in the car.  (Somebody knows what I’m talking about here!)  Once again, upon arrival, you do the whole process all over again.  Do you see how they have to add in extra time for events? Do you see how it takes a special individual who is willing to do the “extra work” just to be a friend to these precious people?
  3. Going Out With Friends! Jacoby is just like any other 19 year old girl.  Going out with friends is essential to the hormonal balance of her soul.  However, going out with friends requires some… You guessed it, pre-planning.  First, Jacoby cannot use the restroom on her own, so right before leaving, she has to plan out what time it will be 3 1/2 to 4 hours later.  Whatever that time is… Is the time she will need to be back home to avoid an accident.  Even then, Jacoby hardly drinks while out just to be safe. Secondly, is the place everyone is meeting handicap accessible? Will there be enough space to move around inside? You would be surprised how many places are still not handicap accessible. You want to know these details before you show up with your loved one.
  4. Going on Vacation! Planning and details have never been more important than when we are leaving on vacation with Jacoby.  Simply put, you are taking your loved one out of their environment COMPLETELY and creating a whole new environment. After reading about the planning it takes for the activities I listed above, can you imagine HOW MUCH MORE planning it takes when you are in a foreign environment altogether? Jacoby asks several questions before going anywhere on vacation; thank the Lord! We have been so blessed because Jacoby is naturally a planner, so she has made our job much easier.  She thinks of all the “roadblocks” long before we ever do.  We recently came back from a beautiful vacation in Hawaii. I won’t go into too much detail, but the excursions that were listed as “Handicap Accessible” were expecting the individual to be able to get up out of the chair to board the boat. Furthermore, they would need to park the chair and have them sit for the excursion on a metal seat. I can barely sit on a metal seat! R u kidding me?  I wish you could have seen the look on my face when they told me those words. It. Wasn’t. Pretty.
  5. Getting Ready for Bed!  I don’t think anyone can ever understand just how many details go into the bedtime routine for someone who is a quadriplegic, or disabled in other ways. I know I certainly didn’t until Jacoby’s accident.  I remember thinking about how much I complained just over brushing my teeth and washing my face.  How. Embarrassing. Jacoby’s bedtime routine normally starts with stretching in the wheelchair.  After sitting all day, tendons and muscles become extremely tight, so this is something that needs to be done to keep the tendons and muscles loose and flexible. Stretching takes around 15 min. Then Jacoby needs to be helped with brushing and flossing teeth, washing face, and undressing for bed.  We have chosen the evening to do her bowel program which takes 1 1/2 to 2 hours.  Do you see how planning out evening events would need to be strategic for individuals with these types of needs? Long story short, the late night (2:00am) “slurpee runs” college students do don’t mix well with these type of schedules.

Honestly, this part of her life is hard to share with others because it’s precious to us; it’s precious to Jacoby… it’s precious to me. The whole purpose of detailing out these five areas is not to overwhelm or guilt anyone; it’s not a pity party either.  Jacoby and other disabled individuals don’t desire your pity; instead they prefer to be understood.  Here are some helpful action steps you can take from this information:

  • Getting ready in the morning is quite a detailed process.  Stopping by unannounced is NOT a blessing to these individuals. Always give a “heads up” before stopping by, if possible.
  • Be willing to learn… know you WILL serve! Spending time with disabled individuals is not for “the faint of heart.” For instance, I talked earlier about transportation.  When loading someone in the car who uses a wheelchair; it puts them at ease when you show them you don’t mind learning how to buckle them in or getting them settled.  The last thing they want to do is inconvenience anyone because they would rather be doing it themselves.  Realize the “uncomfortable” stage will pass once you have learned and practiced it several times; practice makes perfect.  But truly, they will just appreciate the fact you find them valuable enough to go through the learning curve and serve them; they’re very aware that it takes extra time and energy.
  • Be willing to do some homework.  Nothing means more to Jacoby or myself than when someone texts or calls about making sure the venue/event is handicap accessible before they set the plans “in stone”.  Before making plans with the group, try to remember the obstacles the disabled overcome just on the simple things many of us take for granted. Doing homework on “going out options” ahead of time can save these precious individuals a lot of stress and uncertainty.  Sometimes, it just doesn’t work out, and that’ ok, too.  Again, until Jacoby’s accident, these things never even crossed my mind, so please know I’m not trying to condemn anyone, just educate.
  • Listen up! All of you who are raising up little designers, teachers, builders, dreamers, writers, engineers…please read these blogs to them.  Teach them the value and the importance of helping the disabled.  When we went on vacation to Maui, not ONE excursion was able to accommodate an individual that needed to stay in their power wheelchair.  We. Can. Do. Better. Than. This. Think BIG. Create BIG. Invest BIG. Teach BIG. Thank you… From the bottom of my heart.
  • Just remember one thing! If you are friends or family of someone who is disabled, don’t forget many things need to happen before they can “officially” go to bed at night.  Try to keep in mind that an additional 1 1/2 to 2 hours is needed once they get home.  If they leave early from an event, now you may have a good idea why.

At the end of the day, in the midst of all the chaotic details and calculated planning, God is STILL sovereign. He has “the bigger picture” and uses disabled individuals to teach us more about who He is. After all, isn’t that the goal?

Carpe Diem, my friends…

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