Things have been rough around here the past few months. In January, my mother received a terminal diagnosis and began experimental treatments. In February, I got married, and my little family of Heather and I grew by 3. In March, after multiple hospital and rehab stays, my mother stopped the experimental treatments and came home to be cared for. Shortly after that, Heather was informed that as of April 1 she would no longer have access to the 11 hours of adult support services she receives each week. Yes… 11 hrs… per week…
I feel a little bit like I’ve been banging my head against a wall. I’m busier than ever, but mostly with things that need to be done over and over again.
One of my priorities has been ensuring that Heather is cared for when I can not be here. Whether I’m working, or home caring for mom, making sure that Heather has appropriate support and activities to enjoy is a priority.
I spend what seems like hours each weekend calling my people, looking at my work schedule and Mom’s Dr schedule, making sure that someone is responsible for Heather during all hours of the day. When I get a day or two arranged, there is a brief moment of relief, followed by the knowledge that there are still 3 days left in the week to figure out.
The thing is: she doesn’t care. Even if she could understand the weight of all that arranging, she would tell me not to bother, because she just wants me. She just wants me to sit and sing her a song. She wants me to be home. She wants me to give her a shower. She wants me to help her change her clothes. She wants me to tuck her in. She wants me to be there before she leaves the house, and then again when she returns. All my hard work is thrown back in my face when she aggresses towards me as I try to walk out the door, simply because she wants me to stay. She has a day filled with fun activities ahead of her, but she just wants me.
The problem is that sometimes after all the figuring-out, there’s not much “me” left. The thought of sitting and singing the same song that we’ve been hearing on repeat for the past 3 months is sometimes actually painful. Fighting with her to take a shower, when she willingly hops in the tub for my sister? Not worth it! The weight of being everything to her is sometimes too much to bear. Sometimes, there’s not enough “me” to meet all the needs that need to be met.
I have no wisdom at this point, but I have hope. We’ve been through this before. Life has been stressful, and we’ve gotten through it. We have a fantastic support system, and every year or so, Heather finds new favorite songs. I’m holding on to the hope that life settles quickly this time, and that our new song is right around the corner. For now, those moments when I catch her looking out the window when she wakes up to see whose car is in the driveway and whispering with a smile, “Brookie here”, help me dig deep and find a little more “me” to offer her.
How do you get through the times when there doesn’t seem to be enough “you” to go around?