It’s 3 am, and once again I am up monitoring Richard O’s blood sugar. We did well during the day today – his numbers were much closer to target. However, we’re still having problems with the infusion sites. I had to change his sites not once, but twice over the past 24 hours, which has been frustrating to me – his numbers were climbing, and not responding to corrections through the pump. I had to wake up a rather grumpy Hubby after midnight tonight to give me a hand with the site change, and we had the whole “maybe the pump is not such a good idea” discussion. Again. He is still not convinced that pumping will improve Richard’s control, and he is angry that we have to “keep putting holes in him.” He also seems frustrated that I can’t always pinpoint what went wrong with the site.
The funny thing is that when I talked to the pump trainer from Joslin today, she told me that she thinks things are going better than average, overall. Pump starts are just hard for little guys, and because you want to keep them from having lows, you have to tolerate higher numbers for a while until you can really fine-tune the settings on the pump. And personally, I think Richard O is taking all of this in stride – he’s been in a great mood since we started pumping a week ago.
The whirlwind of the past 6 months has really caused me to re-examine my concept of success – what it means to be a successful parent, a successful spouse, a successful person.
I think it is fair to say that in many ways, I have led a charmed life. I grew up in a loving, supportive family, in a comfortable middle-class neighborhood. Schoolwork (from kindergarten through my master’s degree) was never really a significant challenge for me: I did what I had to do; found it enjoyable, for the most part, and got some really interesting opportunities out of the bargain (great scholarships, opportunities to study abroad, performing in major venues like Carnegie Hall). Getting married and entering the working world required adding a balancing act to the mix – how to keep the home fires burning while spending an incredible amount of time at work mounting musical productions, preparing for concerts and competitions, and juggling other professional responsibilities. I made my share of mistakes, but on balance, I think I did a lot of good work, hopefully touched some students’ lives in a positive way, and made some beautiful music along the path.
And then parenthood arrived, and for all of my study, worldly achievement, awards, scholarships, and accolades, nothing mattered more than nurturing this tiny little person who had to fight so hard to make it to this earth in the first place.
When I compare the work that I was engaged in three years ago as a music and theater educator to the work that I am engaged in now as a mother of a child with a life-threatening chronic disease, I am struck by how comparatively easy it was to pull together a musical that 3200 people would see each year. Back then, if I screwed up, perhaps someone’s feelings might get hurt or someone would sing out of tune for a few bars. Now the stakes are so, so much higher – a few hours of inattention to blood glucose testing, and my son could wind up in a coma. The comparison seems a little melodramatic, perhaps, but it is my reality.
For years, I equated success with perfection – the perfectly tuned choir, the perfect score on a test. Now success is being able to root out the cause of a rogue blood sugar, or getting through a meal, or watching my son be a happy boy, despite the many challenges he must face on a daily basis. He is so incredibly strong, so incredibly resilient, and so joyful. That he can retain such a sunny outlook on life despite all that he has been through is a testament to the strength of the human spirit – and the best measure of success that I can find for myself.