Finally, Something to Celebrate

This week will mark a full month home with James. (If you are pointing out in your head that he technically had to spend one night in PICU after his surgery last week … don’t be an a**hole).

This is what texts used to be like between ICU Dad and I in January and February:

photo 1

You see, at that point we really only knew James by his numbers: oxygen saturation (anything above 90 is acceptable), heart rate, respiration rate, blood pressure, ventilator settings. That continued for a long, long time. James’ numbers told us everything — if he was in pain (high heart rate or blood pressure), if he was starting to work too hard to breathe (respiratory rate), or if he was about to go into respiratory failure and need an emergency re-intubation (i.e. the day after he was extubated and sent to the bone marrow transplant floor, only to have his sats drop into the sixties and race back to PICU with the rapid response team to get the breathing tube back in.  That only happened once, but damn it was scary.)

Now? Our texts go something like this:

photo 2

Because I finally have a baby to care for at home, on top of a very energetic preschooler! I don’t have time for this sh*t.

It’s been a busy, stressful, exhausting and wonderful month at home.  I’ve shared some of it already, but we’ve had a lot going on in the background.

Recovering.  No complaining if you have seen this picture before ... I like it.
Recovering. No complaining if you have seen this picture before … I like it.

J is recovering very well from the surgeries last week.  There were a few very sad days when he was in a lot of pain and we were all crying, but we made it through them and he’s comfortable again.

Max decided he was ready to be potty trained right after J came home.  He was basically like “Guys, I know we’ve been busy the last 6 months, but this is really getting a little ridiculous.”  Okay, actually he was like “Mommy, I’ll just wear underwear to camp today.”  And I was like “Oh.  Okay, then (?)”  (As an aside, finally having a potty trained kid is the BEST).

We’ve started looking for a new house, because one month into this apartment with two children … NFW.  I know what you’re thinking: what kind of lunatic would want to attempt a move after the year we’ve had?  The answer:  these lunatics!

James has now been through all of his early intervention evaluations, and we’re waiting for the meeting with the EI program to determine the extent of services James will receive. The evaluations could be viewed as profoundly depressing.  But I accept James for whatever he may be, so I’m focusing on what he needs, not what he lacks. (I will continue to repeat that to myself until it’s true 100% of the time.)  I’ve started preparing a package to advocate for the maximum resources for James, and I’m definitely going to have my lawyer hat on that day.

As an aside, a tip for any readers who are the parents of complex kids themselves: J’s medical history is REALLY complicated. I got sick of explaining it to every Dr. Tom, Dick and Harry who sees him. So I made up a medical resume for him, with headings like “Hospitalizations”, “Surgeries”, “Diagnoses”, “Current Medications” etc. I update it every time there is a new development, and just keep a few printed out in my file for J. Pretty much everyone is shocked when I hand it to them, but it makes life so much easier for me (isn’t that the most important thing?) and James (oh yeah, also him).

Oh, and did I mention the most amazing one from just today?  James laughed for the first time. HE LAUGHED.

Obviously, I cried. But not nearly as hysterically as when he first smiled. J’s not the only one recovering after this month, I suppose.


7 thoughts on “Finally, Something to Celebrate

  1. Hi, I’m an old timer Mom of a complex son (my Nicholas is 25!). My niece Olivia introduced me to your blog and my cousin’s daughter Toby is also a friend of yours, I think. Such a small world! Reading your words takes me back to the early days of our family life with Nick and our daughter Natalie. I think you know this already, but I will say it anyway…. it will be OK. It will be better than OK, your life will be full of challenges with your sweet boy, but you will crash through floors of your personality to find new floors and you will be one of those wise, kind people who does not flinch when confronted with deep joy or deep pain. Perhaps you would like to have a look at my blog to catch a glimpse of what life might be like for your family years from now – Not every day is pain-free, but enough are that we all agree, life is good. Very good. I send you a gentle hug.

    1. Donna — thank you so much for your kind note. Liv did mention that I should reach out … but I’ve been very bad at that recently (hence this blog!).

      You and your family have already been a great inspiration to us (in part because of your experience with postings abroad — ICU Dad and I are rolling stones at heart!). I hope you don’t mind if I get in touch in the future once things have settled a bit 🙂

  2. Really enjoying this blog, thanks to the lovely Donna Thompson for sharing! Am happy to hear you all are doing well. I really love the idea of my resume. My little one starts school this fall and I’ve been thinking of what to make that succinctly summarizes * errrrr * everything about her…and you just helped me out! I write the special needs parenting blog for Today’s Parent: and would love to write a post about this and link back to your original if that’s ok?

    1. Thanks for stopping by. Absolutely okay! I often feel like I’m flailing around in the dark with all of this, so I’m pleased as punch to have thought of anything useful at this point …

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