I’ve been something of an emotional wreck over the past week – there’s been a lot going on, and my communication skills have been, well, shoddy. I’ve felt isolated, but unable to reach out, overwhelmed, but unable to ask for help, and fatigued, but unable to close my eyes and sleep.
In the past seven days, we’ve had appointments with Richard’s pediatrician, his endocrinologist, his insulin pump trainer, his physical therapist, and our family’s social worker. I’ve exchanged emails and phone calls with his early intervention coordinator and his feeding team. I’ve spent several nights wide awake between 1 and 4 am as I’ve tried to fix abnormal blood sugars, get Richard O’s pump and his meters downloaded onto the computer, and change out his infusion site after it stopped working. There has been much frustration as I’ve seen extremely high and low blood sugar numbers, discovered that Richard O hasn’t gained any weight in 3 weeks, and survived another minor bout of constipation and vomiting.
It’s a lot to handle. So, so much to handle, and I am definitely feeling the strain.
In the midst of all this, last Saturday marked six months since Richard’s diagnosis with T1. Six months since my life as a mother and caretaker changed forever. I feel like I’ve aged 20 years in those six months – I have all this intimate knowledge of a disease that I wish I had never had to learn. My son has been to the hospital four times in those six months – 3 days in the PICU after diagnosis, a trip to the ER in January for dehydration and an ear infection, and an ER visit and a separate week-long hospital stay following his vomiting bug in March. I could wallpaper my entire bedroom and bathroom in the EOB forms I’ve gotten from the insurance company in those six months. Still, at least we have good insurance coverage – without it, we would be facing well over $30,000 in medical bills right now, and that is probably too conservative an estimate.
But it’s not all bad news – even though my frustrations and sorrows have been many, we have made some headway, too. Richard O’s A1c (the blood test that indicates his overall glucose control) was 8.2% yesterday – down 0.3% in the month that has passed since we started pumping. His A1c at diagnosis was 8.9%, so we are headed in the right direction. And Richard’s CDE said we’re doing a great job of staying on top of his blood sugars, despite all of my worrying. T1 is just really, really tough to manage in infants and toddlers, since they are constantly growing and changing.
I have to believe that the next six months will be easier than the last six have been. Some mornings it is a real struggle to decide to get out of bed in order to face another day. I am so deeply, deeply grateful that despite all of this, my son is a happy, loving, curious, intelligent, and inquisitive toddler. His sunny attitude keeps me going when I feel like giving up. And I have the most awesome mother in the world, who has rescued me more times than I can count…and I have to thank my dad for being so understanding of that. And, though I don’t thank them nearly enough, I know I have had a veritable army of friends and family who have uttered many prayers and rendered countless acts of service on our behalf.
So. there we are. Six months down. A lifetime to go.