I envy people who can just jump in the car and go at the spur of the moment.  Most people don't have to think about whether a building or home is accessible for a wheelchair.  To spend a night away from home can be very challenging.  But this is our life. 

My son, Dylan, is 14 years old and has cerebral palsy.  He is in a motorized wheelchair that he drives himself.  He has a special potty that he uses to go to the bathroom and a lift that lifts him in and out of his bed and wheelchair.  He wears special braces on his legs and special supports on his hands most of the time.  He has to take four different medications, three of which he takes three times a day.  We had to build him a handicap bathroom last summer so that he could have a shower that was big enough to roll a wheel in shower chair into it and a sink that sets low enough so that he can brush his teeth and wash his hands. 

Day to day life can be complicated and exhausting sometimes.  Even though Dylan is 14 years old, he can't be left alone.  He has to have help with most everything he does.  He can speak very well, which we are fortunate for that.  He is very smart, but all physical things present a challenge for him.  During the school year, every morning,  I get up and get myself ready first.  After that, I lift Dylan, (which won't be happening too much longer considering he is bigger than me), onto his potty chair.  He uses the bathroom, brushes his teeth with some assistance from me, washes his face and then I lift him back onto the bed so that we can get dressed.

He is not able to dress himself so I put on his underwear, socks, pants/shorts, shirts, braces and shoes.  After that, I put him in the lift and place him in his wheelchair.  We are both pretty tired after doing all this in the morning.  I then stay with Dylan until his school bus picks him up usually at 7:30 am for school.  Since I have to wait with Dylan to get on the bus, I rarely make it to my work on time.  But I work at a place that is very understanding of my circumstances so that is great.  A lot of places wouldn't be so cooperative.

When Dylan is done with school for the day his grandma picks him up and takes him to physical and occupational threapy three times a week.  They are usually home by the time I get home and Dylan is ready to eat.  I fix him dinner. I have to help feed him. He does pretty good on most things, but is really slow.  After the dishes have been done, I then get him ready for his shower.  He takes his shower and usually gets comfy in his bed.  He has a hospital bed in his room that reclines.  The head and foot elevates so that he is able to watch television comfortably and his legs won't swell as much.  He doesn't have very good circulation in his extremities.  He can watch tv or play playstation 3 from his bed.  I have to wash Dylan's hair and body.  I rinse and make sure he has all the soap out of his hair and off of his body.  He likes to soak in the shower by setting under the sprayer and just relax.  He usually stays in there letting the water flow over his head until the water gets cold. This is good for his tight muscles.

Usually about 10:00 pm at night he is ready for bed.  I have to give him his night time medicine and place him on his side so that he is comfortable.  Usually at least once and sometimes twice during the night he calls me to come into his room and turn him so that he can be in a different position.  It's almost like having a newborn sometimes with night time wake ups. 

When he stays every other weekend with his dad, I get to sleep all through the night for two nights in a row.  I find myself thinking that I hear him call for me to do something.  It's quiet when he is not here.  Going to visit friends and family can be difficult if they don't have any wheelchair access into their homes.  Most business and restaraunts are handicap accesible but can be difficult nonetheless.  Bathroom issues while on the road also arise. 

Never in my wildest dreams would I have ever thought I would be living such a structured life.  There are some limitations for Dylan and I.  But it doesn't stop us from doing all that we can.  We both get tired easily from the extra things we have to do.  It's hard for people to understand sometimes how exhausting this all can be for the two of us.  But I understand, some things you can't understand unless you have lived them yourself.  I would not change anything in my life.  I have the most wonderful son.  He is such a blessing to me.  Together we have grown.  Together we have overcame obstacles, together we have survived.  I love him so much. 

This is our life.  It may not be the most exciting or the most envied but it's ours.  It is where God wanted us both to be.  Therefore, we will live it the best that we can, make the most of it, and continue to be a team.  As long as I am able, I will be there for my boy.  No matter  what.

I Love You Dylan