Shawn and I had a good cry together last night. Clare goes back into the hospital on Thursday this week for her cardiac catheterization on Friday. She has come through five caths already, so I know her track record is good. Yet with each looming cath, the fear creeps back in. I hold her longer, find more patience with her toddler obstinacy than I thought I had, run my fingers through her curls and kiss her smooth cheeks as often as she lets me. I relish in her big toothy grin, blowing me kisses and waving bye as she rounds the corner into another room.
(There is a pattern in my blogs - nights that Shawn is out-of-town, I find myself in the basement alone, thinking these thoughts, depressing myself. When I really should be in my bed, watching a movie, and eating ice cream. So, you may want to take the opportunity and do that now. I am not making excuses for my thoughts. I am warning you that they are dark, and I need to get them out.)
Lately, we have noticed that Clare desperately needs this cath. She has high blood pressure but the fact that she could not pump any blood out at the blood draw last week signifies low blood pressure. I know her blood pressure must be all out-of-whack again (my medical term for it). I know her heart is working too hard. But tell that to a 2-year old who has recently learned to walk. Who finally has the means to explore this great big world (or at least the first floor of our house). She does not want to stop. Clare wants to go, go, go. But the fatigue is there. And with the fatigue comes crankiness, frustration, and tantrums. Tantrums which drive my stress level through the roof because I can visualize what it is doing to her heart. Add to that a 4-year old who understands his parents are on edge about something (which to him comes out as snappish and short-tempered) and so he responds to these undercurrents with his own outbursts of anger. And then add a normally happy, content 4-month old who is experiencing his first virus, complete with fever, rash, and diarrhea, so he is inconsolable unless he is held and nursed around the clock. The equation adds up to one mommy and one daddy who are maxed out at the moment.
In church yesterday, we were sitting behind a middle-aged couple we often sit near (the gentleman is the same one who I caught holding hands with Clare one time). Clare has charmed this man, so he always has a smile and greeting for us. I imagined arriving at church without Clare, being questioned by this gentleman about her absence, and explaining WS, her heart defects, and her passing. At the same time, while the congregation sang "On Eagle's Wings" (a beautiful hymn which is often played at Catholic funerals... "And He will raise you up on eagle's wings, Bear you on the breath of dawn, Make you to shine like the sun, And hold you in the palm of His Hand"), Shawn was imagining that hymn being played at Clare's funeral. Why do we imagine these things? I tell myself that it does no good to dwell on the depressing. Yet part of me feels that if I can plan these scenarios out, walk myself through them, if someday, I am forced to actually live them, I will be prepared. I know this is a big fat lie.
Today I read an article in Brain, Child about the death of a child. (Yes, I question why I am reading this article when I am already thinking morbid thoughts, but I forced myself to not be a wimp and finish the article.) The author writes, "Before becoming a mother, I never knew that having a child means crafting not only a life but also a death, that each of my babies would carry within him or her not only the potential for death but the inevitability of it." I was too new a mother when Clare was born to know what motherhood was like without the very real presence of death lurking in the background. When Jamie was an infant, I followed all the advice about preventing SIDS. I cut his grapes in half to protect from choking. I never left him unattended in the bathtub. Yet I never thought anything would really happen to him. The mantra is that that happens to other families. But the reality with Clare is that it just doesn't happen to "others." It may be us. And I know I am trying to come to some sort of terms with that knowledge.
In all probability, Shawn and I will outlive Clare. Given the severity of her heart defects, her average lifespan is 50 years old. Younger than my parents are now. That's a hard pill to swallow. But what I wouldn't give right now to be guaranteed those 50 years with Clare. Fifty wonderful years. I don't care if she still lives with us, is a bagger at Hannaford, whatever. I just want those years. All the years I can get.