The Rocking Chair

I’m in Matthew’s room, packing for a weekend trip. Erynn has been following me around the house chatting away with excitement about our weekend. But now she is quietly sitting in Matthew’s rocking chair and is quiet. 

And then she says, “I hope I get to rock a baby to sleep some day.”

I think I told her something simple like “maybe”, or “it’s a possibility”, or “hopefully”. 

But then I started thinking about it. Erynn is a carrier of OTC. Just like Ruth. Just like me. It’s entirely possible that she may not; that she has bitter sweet moments to rock her own OTC baby; or, that she has babies that aren’t carriers and are at no risk of devastating ammonia spikes. 

The science is there. Or, at least on the horizon. It sounds like something out of a science fiction movie and for many people, it’s a terrifying idea. But for me, it’s a giant bright, shiny beacon of hope. A hope that someday it will be possible and acceptable for doctors to remove the OTC gene and replace it with DNA that codes for a functioning urea cycle.

Is it playing God? Maybe. But I believe that God gave those scientist and doctors the knowledge and the skills to create these tools. I believe that God uses them to save a family from heartache and uncertainty.

I hope that some day both of my girls can fearlessly have children and spend the wee hours of the morning peacefully rocking their babies to sleep.


After all…

I’m feeling a bit of rage coursing through me.

I’m afraid for the next person who says to me “I’m just a little concerned about his breathing.”. They may or may not end up with a broken nose.

Here’s the thing. I know you are concerned, but your statement implies that I am ignoring a serous problem; that I am not concerned.

Here’s what you should know. He was seen by 3 PICU doctors who did not offer any help or advice about this ‘breathing problem’ when he was hospitalized this summer. He was seen by his pediatrician, who was “concerned” and sent us to a pulmonologist. The pulmonologist was “concerned” but said it wasn’t her problem and sent us to an ENT. The ENT said there wasn’t a problem and put him on Nasonex. And then the problem continued to grow.

His nurse was “concerned”. The home-health nursing supervisor was “concerned” and curious about what we were ‘doing about it.’  The nurses that draw his weekly labs mentioned every single week that they were “concerned”. His three therapists were “concerned”

We tried to get back in to see the ENT earlier than planned and couldn’t. His geneticist tried to get us in earlier and couldn’t. His hematologist was “concerned” and wanted to admit us to the hospital so that we could get seen sooner. I didn’t want this so, we saw the pediatrician again, who was “Very Concerned” and sent us to the hospital, where he spent 4 days in the PICU. While there, he saw more ENTs and was scoped to get a clear picture of his sinuses and throat. He also saw several PICU doctors. They tried mixing helium and oxygen as well as various flow rates of oxygen. Nothing helped. The ENT once again said it wasn’t their problem. It’s neurological. The on call neuro agreed that we needed to have an MRI and see his neurologist.

Today we saw neurology. I’ll give you one chance to guess what she said.

Yep. She’s concerned about his breathing and wants to know when he’s going back to the ENT. She’s agreed to schedule an MRI but doesn’t think we’ll find anything helpful. After all, he does have a severe brain injury.

I mentioned his sudden loss of strength in his neck and legs. But… he does have a severe brain injury. Now, I’m no neurologist. Or doctor of any kind, for that matter. But, it just doesn’t seem right that an overnight loss of muscle control can be blamed on an old injury and that there is nothing to be done for him.

It’s a common problem when it comes to Matthew. Everything is “Well, he does have a brain injury.” or “We know what to do for kids with this problem who are older, but we have no idea what to do with a kid as young as Matthew.” (To which I would like to scream, “Then Google it!”)

Most people want to stop there, as if that excuse is enough. I won’t. I can’t.

I need a punching bag.



Tornado Tango


I left an appointment the other day, with my mind spinning with information, the doctor’s concerned, and the list of doctors that I needed to make an appointment with. It hit me. Our lives are like we are dancing with a tornado. There is a massive storm spinning on our horizon. Every once I a…
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Prayers and Reality

Me With You

Recently Erynn and Ruth have been having trouble sleeping. I’m pretty sure that it’s the manifestation of their anxiety after Matthew’s three weeks in the hospital this summer. We’ve been praying with them, but a couple of weeks ago, we switched from praying with them to getting them to try to voice their prayers on…
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