Remember when I said my disability only bothered me when it affected my children?
On Saturday mornings, my daughter, Promise (who prefers the nickname Romi), loves to have tea parties. She breaks out her plastic tea set or the glass Dora one she got from our friend Kate one Christmas, and we have tea (chocolate milk) and cake or cookies. We haven’t done this since before her little brother, Cruz, was born; as she pointed out this past Saturday. “Can we pleeeeease have a tea party mama?” She begs using puppy dog eyes, and she knows she’s doing it. I say yes and tell her to go get the dishes she wants to use so I can wash them.
Anyone that’s spent a significant time around my daughter can tell you that while she has more spunky personality than any kid you’ve ever met, she is also very detailed, and likes to think out and talk out everything she does. So it takes her a good ten minutes to get the dishes, because she has to decide whether to use the Dora set or the plastic set, what color of cup I should have and what color she should have, and whether the plates should match the cups or be mismatched.
While she’s doing this, Cruz is getting louder and louder in his protesting, because he is no longer content sitting on my lap. Or playing with a toy. Or being held to my chest. Or lying down. The minutes pass and seem to quadruple in length as it gets harder and harder for me to hold him while he pushes and pulls. Promise plays with the baby (or at least restrains him) while I wash out the dishes. This takes a while because the tea pot had been use to wash paint off of brushes, and the other dishes were sticky. I stand at the sink bent over, using my elbows to support me, trying to relieve some of the pressure and pain from my back, hips, and legs. I force a smile at Romi and ask if she can feed the baby while I get all the ingredients (she’s decided she wants hot cocoa tea instead of chocolate milk tea). “Can I get the ingredients and make the tea mama?” “Sure, I’ll feed Cruzy.” I love this idea, because I can sit down, feed the baby, and give her the directions, and she’s happy to make the tea. “Want me to bring in the high chair mama?” “No, I’ll just set him on my lap and feed him quickly while you make the tea.” forgetting that she doesn’t usually do things ‘quickly’. I take a deep breath and clutch the baby in one arm, using the other to get baby peaches, oatmeal, and a spoon. With him crying and trying to escape I manage to stir the oatmeal into the peaches. I get the first bite into his mouth and he is happy.
I remind Promise how to make the hot cocoa. She spills and splashes while Cruz helps with his spoon and smears baby food all over himself and me. I try to ignore the feeling that the bench is trying to imbed itself into my pelvic bone. By the time I’m done feeding Cruz, Promise has finished making part of a cup of hot cocoa, and I realized that it in fact would have been faster to use the high chair. I would have avoided having to wipe him off top to bottom and change his clothes. “Can I have marshmallows and whipped cream?” She begs. I feel a wave of frustration and I want to snap. I do a quick self-check and realize that my growing impatience is because of my pain, which I can now feel radiating through my arms and into my hands. This is a sensation that I can’t quite explain. It’s not that my arms or hands hurt, but it makes my arms want to writhe. It’s a reminder that I’m in a lot of pain – pain that I’m ignoring and trying to block out. Taking slow breaths I ask her to watch her brother, and I go take some medicine. It doesn’t help the pain immediately, but I feel relieved knowing it will be better soon.
Back in the kitchen, I gently remind Romi that it’s ok to have sugar in moderation, but too much too often is bad for you, and that she may pick one or the other. She picks marshmallows, and decides that we need another little container to hold the marshmallows at our tea party. And another when I tell her that I want to add instant coffee to mine. So I wash out two more dishes. She asks if we can have the little chocolate breadsticks along with our apple bread. For the sake of time I say she can if she gets them on the plates. I ask her to start taking the things out to the TV tray in the living room. “Mama…” she walks back in from the living room with an ‘I know I’m in trouble’ look. “I spilled the coffee. It fell over.” “Ok.” I breathe out, trying to hide my frustration. My whole body is screaming at me and I just want to sit on the couch and prop up my knees. What I thought would take ten minutes to make has now taken over half an hour. “Just clean it up the best you can.”
Finally, everything is ready. All that’s left to do is carry the pot of ‘tea’ to the table. “Mama, we should ask daddy if he wants some too.”
I pause for a moment. This would mean doing the whole process all over again. Making more ‘tea’. Toasting and slicing more bread. Realistically, I know Sal doesn’t really like hot cocoa. He’d probably rather keep sleeping since he works late hours. Finally I decided we should at least ask, instead of me making the decision for him. Family time is important since he leaves for work shortly after Romi gets home from school. She asks him and he says yes. I ask her to hang out with her brother while I get daddy’s tea ready.
Finally we are all on the couch together, enjoying some very good ‘tea and cookies’, and laughing at our favorite TV show. With a pillow behind my back and another under my knees, the pain is starting to lessen. I smile at it all and I know it was worth it.
This might seem like kind of a sad story, but to me it is happy. It is progress. My back started bothering me a lot when Promise was about two years old. Somehow I wasn’t aware of the pain until I was in tears. I think part of the problem was that when I would go to doctors about it, they would brush me off and say that it’s just stress or I just needed to work on my abs. I was convinced it had to do with my CP, but they didn’t want to talk about that. Finally I found a doctor who took me seriously. Unfortunately there wasn’t a good permanent solution, but he helped me by getting me to therapists and AFO specialists, and prescribing medicines to ease the pain.
After taking medicine and not being in so much pain, I was able to better recognize when I was in pain, and that being in pain made me very impatient, because I was always in a hurry to sit down. I started to realize that I had been pretty impatient with Romi for the past few years, and I was determined to fix that problem.
So while it’s true that I am in pain, I thank God every day that I have the medicine and therapeutic techniques to help it not rule my life. I thank God that it is only pain and not a deadly disease. I thank God for wonderful little moments like this, in everyday life, that we tend to take for granted. And I thank God for the reminders to not take them for granted.