It seems I am at the point in my blog to either fish or cut bait. I have shared my intentions of writing honestly about my struggles with chronic pain and disability, and the first two introduction style posts were both uplifting, even soothing; reinforcing the idea to share my vulnerabilities as an avenue of spiritual connection.
Today I have a neck-head-scalp migraine which is hard to smile through. I just put both of my sons into the car with my husband. One has baseball practice and the other has a band concert for elementary school kids at the local high school. My husband typically works on Tuesday evening and I had felt able to push through and do the transporting and attend the concert. Still my husband seeing flexibility with his evening work rushed home as I was about to leave with the boys and took over so I didn't have to. His help, no his consistent super hero efforts juggling so much of our lives, is something I cannot begrudge, though I cannot push down the shame either.
When the boys came home from school I greeted my 12 year old like I try every day with a happy how was your day. I was lying down with ice on my neck and head and I swear part of me sensed a look on his face which I can only describe as resentment. How can I blame him? My husband tells me it is my imagination, yet he does not see my son's eyes when they fall upon me. My 12 year old is in a moody phase; has been for a while now. I worry so he is burdened by what he may see as my helplessness. I occasionally try to open up a conversation, telling him I get it if my condition bothers him. All of my fantastical hopes to raise the boys in a way which encouraged their openness seem to be fading behind his moodiness. I wonder when, why the joyful back and forth where he wanted to share every part of his day slipped behind us. I get he "is at that age" but I also get he is growing up in a home with a mom who is different, disabled, in pain. Often simple routines become juggling acts burdened by short tempers and frustration as my husband operates as a single parent in a two parent home.
My younger boy cheerfully tells me with what seems genuine indifference he does not mind I am not going to make his concert. I tell him how I really would like to go, but.....
The choice is hard. I could go. The headache does not make my attendance impossible, it is more it makes it so hard for me to face traffic, sunlight, noise. The hour of sitting prior the concert would be difficult; sitting always shoots my lower back pain through the roof. The concert would finally start and I would be there trying to desperately hold back tears and a grimace. Other families from the school with their smiles and camaraderie would make me want to hide. A kind word from someone I know a bit better would inevitably trigger my tears. He really seems not concerned if I miss. He is nine. I wonder if this is where the gulf began with my older boy. I try to remember how often I missed and his demeanor? I worry this might be how he began resenting me.
Perspective begs me to share we are not an obviously broken family. I believe I can say with honesty, we are a family who is often mishapened and exhausted by efforts born of love. I keep a mental tally of how often the boys have missed opportunities because of my disability; rarely. More often I have missed participation in their lives away from home. The disability entered our lives with such a subtle force we began shaping our life around where my body could be more comfortable. Our bedroom has become the dining room with a blanket on the floor and the family room where we share with laughter one netflix series at a time. The boys often argue who sits closer to me, though the littler one has a force which his elder brother cannot match. They both know how much they are loved. They are both brilliant and behave magically everywhere, but in our own home. They bicker constantly and whine incessantly and in many ways seem "ok"; pretty typical of boys their age outside their unusual intelligence and aptitude.
I would like to do better, be more. My mantra this past month has been to push myself further into activity, less concerned with pain's repercussions. My attitude has been upbeat if not jolly, with the hope of truly putting this into action. Today I could not meet my mantra. I could have pushed through if my husband had not been able to match this particular juggling trick, but I would not have been jolly. I hate it when the pain is so dominant to squash my happy spirit. I am shamed to say the pain can squash my hope. I am crying just wondering if my pain has created disappointment in my son.
My husband just called to say he got the younger boy to the concert, and then the older boy to his practice. He was driving back to the concert and wanted to apologize he did not see anyone at the baseball practice, which finishes first, to give our son a lift home. I would need to pick him up. Which is fine! I can do that! I want to do that! Maybe we can chat about his practice, how he is working on his slide. Maybe he can hear my love in my voice and remember I am still trying. I have not given up. I will never give up on these boys! The tricky part is not giving up on myself.