Friday, April 29, 2016


Life is a little bit of a whirlwind around here. A time when all areas of our lives seem to be busy at the same time. If six hours are allotted for sleep, it's a good 24 hours. Work is crazy busy, Children's and our non-profit are taking their share of time, Sarah is having a full schedule, and our boy's around the clock care just got a little more intense with a broken leg.

It's a good thing (not really) this is not Jacob's first break. It's good Jacob has a firm diagnosis of osteoporosis. It's a good thing I'm busy. If I weren't busy, there are many phone calls in the last week that would truly bug me, and would get a little piece of my heart. Luckily, life forced me to move on to the next thing during the day rather than me getting stuck.

A broken bone freaks people out. It's something people can relate to. Maybe it even happened to  you? Jacob's healthcare agencies, therapists, school teachers and therapists, some who hardly ever  bother to follow up, have all made a point to not just email me this week, but made sure I returned their calls. They want to know how Jacob broke his leg, they want the details, and they want to somehow figure out how they are going to not break a bone on our boy. They come with suggestions coming from a good place but not always making sense. There is a sense of fear and helplessness. The irony is that this is not life threatening. My boy has been so very sick so many times, and I have not always heard from these people when Jacob is fighting for his life in the PICU. Not a beep. A broken leg, and I have a full voicemail inbox. Does it bug me? Yes, it does bug me.

Jacob's so very dear endocrinologist who share so many of Jacob's health issues called me today. She's on sick leave, she's not doing well, she is sick, but she wanted to talk to me directly about Jacob. She was so genuinely sad that Jacob has a new break after four years of no break. She felt he had been doing so well, and that this was a setback with the plan we had come up with to manage Jacob's brittle bones. Her true sadness for our boy was what I needed to hear. It wasn't about writing an incident report or figuring out what hoyer lift to order, it was true compassion for our boy and what we could do to help Jacob from not having another broken bone. I don't think I realized how much I needed someone to meet me on that level rather than me having to once again put on my professional poker face explaining osteoporosis and saying once again that I don't know when and how Jacob broke his tibia bone. I simply don't know, and I won't make up this stuff - not even for an incident report.

I felt I could be Jacob's mom for the first time in a week, and tell her how I truly feel about a broken leg. I didn't have to be the one spitting out facts and comforting the other party that they can still safely care for my boy. I told her how sad I am to see Jacob being in pain. I told her how I start to second guess myself when I change Jacob's diaper. Am I using enough care when I roll Jacob from side to side? Jacob is not a little boy anymore. He's so big. Am I using proper technique every time I move and carry him? Are we doing everything we can?

We did get a piece of good news when we saw orthopedics this week. Jacob doesn't need a cast! Jacob should heal fine with a knee mobilizer. Jacob's tibia bone has already started to fuse, and there are large concerns about skin breakdown in a cast with a kid like Jacob. This makes carrying and caring for Jacob so much easier.
Jacob a week ago in his splint as we found out about his broken tibia bone.

Wednesday, Jacob got in his knee mobilizer.
As I am sipping my wine, catching up with my hubby, and watching Jacob peacefully sleep on his monitor, I know I get over this too. We're all on team Jacob, all caring about our boy. Hopefully, I even eased someone's worries and fears as much as Dr. G. did today with me. After all, it's not about me, it's about our boy. We have four weeks of this knee mobilizer to start. We'll then go back for new x-rays, and hoping our boy's leg will be back to normal. Time will tell, time will heal.
Love, Maria.

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