It is HARD to split your family up.
We are fortunate that our life is such that Dempsey ALWAYS has at least one parent with him. Most days his brother, Sawyer, is even at the hospital visiting. However, we are typically split up for many hours of the day while each parent practices self-care and while we sleep. Brother is often sleeping at the grandparent's house, Mommy sleeps at home (I cannot sleep at the hospital- too many sounds), and Daddy sleeps in Dempsey's room.
This is what works for us. But it is still hard on us.
Trying to be positive and upbeat 24/7 is tiring. Some days it is easier than others, but it drains a person. For me, being positive becomes challenging at times because I'm a naturopathic person by nature and watching my son be continuously poisoned (they treat cancer with cancer-causing drugs... go figure) takes a level of endurance that can't be seen or measured. This has to be that much harder for those families traveling a harder journey.
Again, I encourage and pray for those families.
Entertaining a child who is hooked up to a "power tower" can be challenging and exponentially harder if your child is room-locked. Praise God CHOC (Children's Hospital of Orange County) has quite a lot of stuff for the kids to do- playrooms, outside play area, Seacrest Studios, Turtle Talk, music therapy, XBox in the room, TV, movies to check out, etc. However, not every child is able to participate or experience all of these options. Dempsey is one of the more fortunate ones. We would take him out of the room but that means we have to steer his "power tower". This is challenging because his "power cords" (aka his infusion tubes) are not the same length, we try not to run the tubies over, we try to not run over or into his heels or our toes... I've failed at this. Ouch!
Watching the clock all the time to make sure our kiddo is back in his room by the time the nurses need to draw his labs... making sure to get back to the room so he can pee in his "pee bottle" because they track his output... making sure to get out of the room to obtain some sanity and get some exercise... so many things on the schedule to manage.
This is all just hospital life and doesn't take into account non-CHOC life like Sawyer starting school and neither of his parents being there for his first day because we were at the hospital with Dempsey. Managing time so that Daddy (Jake) can get away from the hospital to do self-care, spend time with Sawyer, get Sawyer to his soccer practice, work on days he just can't not work...
Prepping food to bring from home is another element that requires energy and planning. We have had some help in this area and it is a HUGE blessing. Planning meals and making sure we have some varied options handy so that we allow for Dempsey's tastebuds to be potentially picky... This is tiring BUT absolutely worth it because it is ABSOLUTELY NECESSARY that Dempsey NOT eat hospital food!! With bringing food from outside the hospital, we have to be diligent in bringing the utensils and appliances we will need. Thankfully a Magic Bullet and some small utensils are all we have needed, but still, we have to make sure we have these things.
Having Dempsey's labs drawn and waiting for the results... another drain on our energy. We are always believing the best will happen but there is always a twinge of worry/ doubt as well. It's tiring trying to fight those demons back constantly. Even though God has been faithful and steady in his protection and provision for Dempsey... we know that He could choose to remove the desired blessings in an effort to teach/ grow/ sanctify us through a bigger picture plan we aren't always privvy to. We trust His plan, but we are expereinced enough to know that what is good for us isn't always pleasant.
It is exhausting just being away from home. Everything is different. Nothing is normal. Familiar is relative. Once you get there you're counting down until you leave. We try to make the absolute best of the time in the hospital but it's not home. Not only is it not home, this is all a journey we don't want to be experiencing... yet we have no choice.
So, I hope this offers a little insight into what some cancer families go through. It is just a minute piece of a ginormous picture. Suffice it to say, your prayers, support, encouragement, understanding, grace, and available listening ears or sturdy shoulders for crying on are always valuable and some of the best gifts you can provide a cancer family. If you are ever curious about what is acceptable or what a family's journey is like- ASK THEM. Communication is important and helpful on so many levels.