Ch- ch- ch- changes …

It has been a wild and crazy couple of months for the ICU Family. Last I updated, James was having his third (!) eye surgery and his surgeon thought he had finally saved his right eye and we were chalking one up for the good guys.

Recovering from number 4.  These post-op pics are getting a little old...
Recovering from number 4. These post-op pics are getting a little old…

Well, he didn’t, there was no chalk for anyone, and J was back in the operating room on November 4th.   We are crossing fingers, legs, toes, and eyes (sorry J, not funny) that this last operation did the trick. If not, he’ll have to go back YET AGAIN for the placement of a shunt that will bypass his eye’s ordinary drainage system until he grows a little more and the surgery becomes more straightforward.

Have I mentioned how much congenital glaucoma makes us RAGE about the unfairness of it all? Because it does. In case you were wondering.

Of course, all of this has gotten significantly more complicated to juggle because I started back to work full time in September. I know what you’re thinking: you went back to work? Full time? What are you thinking?

Max was forced to do the dishes FOR me!  Also, for those who knew me in my college days, it appears a love for tank tops, underwear and pulled up socks is, surprisingly, genetic.
Max was forced to do the dishes FOR me! Also, for those who knew me in my college days, it appears a love for tank tops, underwear and pulled up socks is, surprisingly, genetic.

The fact of the matter is, I am just not a good stay at home mom.   I recognize and accept this about myself, and frankly wish I were – it would be so much easier for this gang. I mean, it all starts out well – I’m making elaborate homemade meals, keeping the house tidy, reading the Times and the New Yorker cover to cover when the kids sleep, baking cookies, you name it.

That lasts for about a week. Then things start to slip … invariably resulting in frozen pizzas, piles of random laundry and toys strewn throughout the house, spit up stained yoga pants and unwashed hair, and my greeting ICU Dad at the end of the day with a glare of great suspicion and resentment, accompanied by an accusatory “AND HOW WAS YOUR DAY, DEAR?”

By the end of my maternity leave with Max, ICU Dad was begging me to get back to the office.

I’m sure I don’t have to tell you: the intensity of staying home with J is like staying home with a regular kid, squared. By the time I would finish with his medical needs — feeding tube, medications, nebulizer treatments, oxygen, therapists, doctors ‘appointments – I had nothing left to give either of the boys. Zero.

Only big brother gets those grins.
Only big brother gets those grins.

Remember when I went radio silent in August? I was in a bad, bad place. I knew it was time to go back. There was always going to be a reason to stay home — I had to make the decision to go, and then help my family to deal with it.

So I’m a full time working mom with two kids, one with special needs. And we have a small workforce supporting us to make it happen: an amazing and unflappable nanny for James (now known as “P” for purposes of the blog), two awesome preschools for Max (where he’s learning to speak Mandarin!), night nurses, therapists, cleaning person … the list goes on. I am basically working to support our supporters, and those I don’t support directly I spend hours on the phone with insurance to get covered. But I don’t care. You can’t put a price on sanity, nor on the vast improvement in my relationships with the kids and ICU Dad.

It takes us about 60 minutes to get ready for the park by the time we get all of James' oxygen equipment into the stroller…but totally worth it.
It takes us about 60 minutes to get ready for the park by the time we get all of James’ oxygen equipment into the stroller…but totally worth it.

I’ve again been radio silent. But this time it’s because I’m joyously working full time at a job that it turns out I actually love, supporting all of my boys, buying a new home and selling our condo, taking the kids to the park, cooking big family dinners on Sundays and just generally learning to find the happiness and way forward in our new post-ICU life. J is still struggling to get off oxygen, and we are desperately trying to avoid giving him any one of the “regular” illnesses that fly around in the winter time that mean a day or two at home for you and me, but a life-threatening stay in PICU for J. This is our new normal, but we damn well refuse to let fear and uncertainty control our family.

So you’ll hopefully forgive the absence. I haven’t forgotten about this blog – it was my only tie to sanity and the outside world for many months, and I plan to keep it alive, even if my posts are fewer and farther between than before. If you want to keep reading, thank you. And if not … well, who needs you anyway?! Ain’t nobody got time for negativity in the ICU House.

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3 thoughts on “Ch- ch- ch- changes …

  1. This one hit home. I can’t begin to understand staying at home with a child with special needs, but I can totally identify with being a better mom when working. Great to have you back and great to see you writing again. Hope all your boys are doing great!

  2. It’s so great to see J with a smile on his face and Max being a gorgeous big brother. But I can only imagine how tough this is on you and ICU Dad. Stay strong. You’re doing an amazing job. Thanks for sharing your journey.

  3. I will always follow this blog! It breaks my heart and fills me with joy all at once. The joy comes from seeing a family pull together as yours has and its such a powerful thing. I’m also crossing all the things for J especially for the selfish reason that I have the chance to meet you all in a few months 😉

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