Second only to standing helplessly by while Bethany has suffered, the hardest thing about having a high maintenance special needs kid has by far, been standing by, helplessly unable to fully be there for my other kids and grandson when they have wanted or even at times needed me.
Before Bethany was diagnosed with a brain tumor, before she became disabled and high maintenance, I was always there to cheer on my precious kids at every little league and soccer game they played in. I even attended all of their practices for Pete’s sake!
I was always available to drive my kids to play dates, take them to the park, lake, and the swimming pool. We even used to take annual trips to the seashore and amusement parks.
We used to all attend most of the homeschooling art shows, science fairs, and field trips that our area support group had to offer.
Attendance at all of those activities and opportunities came to a screeching halt though, once Bethany became too sick and complicated to bring along to all of those events.
I have not been able to drop everything and race down to my son’s house to meet my grandson at birth nor will I be able to when my granddaughter is born this coming July.
I will not be able to attend all of my grandchildren’s birthday parties or join them for every holiday.
And, although they understand and have never once complained about it, being unable to continue doing those things breaks my heart.
Sadly and although it’s not her fault, Bethany’s disabilities sometimes make it hard, if not impossible to do just about anything at all with or without her.
We never know whether or not we will actually get Bethany to go to a planned event, and if she does agree to accompany us just how long she will actually agree to stay there.
If we do get Bethany to come with us to an activity, we never know from one moment to the next if her behavior will become too disruptive or aggressive for her to safely be around others.
We never know if seizures will destroy her chances of having any fun or make it unsafe for her to be wherever it is that we may take her.
Every little event, activity, or function that we may wish to attend with or without Bethany takes enormous forethought, extreme planning and maximum micromanaging!
I need to have a plan in place just go to the bathroom or sneak outside for a few minutes, because Bethany is so high maintenance that she can’t even be left unattended or alone for more than a minute or two. Someone must always be aware of what’s going on with Bethany and what she’s doing at all times!!
For goodness sake, because of such a shortage of respite workers, I was even beginning to worry just how in the world I was going to attend my own daughter Rachel’s college graduation and my other daughter Rebekah’s wedding!
Thankfully, we did get that worked out though!! With the help of a respite worker, I will be attending the graduation and the wedding come hell or high water, and Bethany will be attending the graduation party and wedding reception.