Monday, December 29, 2008

A Quiet New Year

Paul and I have initiated and cancelled three separate New Year's Eve plans. One plan, fastidiously and secretly planned by Paul, had us heading north to Montreal. Paul had big plans for us, which included another couple and had us staying at the best hotel and attending 'the' hot event in Montreal.

But leaving Luna behind to live it up in another country is definitely not what this Mama had in mind for the holiday.

While life with Luna seems normal and for the most part it is normal, I think I've gotten used to the level of care, which, while not abnormal, is definitely not what your heart healthy kid endures.

Take for example the synerigist shot. These are shots that Luna will endure, exactly every 28 days for the entire winter season (which here in New Hampshire is a solid, oh eleven months, okay, six anyway). Her next shot, which will be the second of the series, is tomorrow morning. Exactly when we were scheduled to head-off for O-Canada. The 40 minute round trip drive to the doctor's, not including the time in the office, is really not bad. But of course I work out of my home and am my own boss. For a dual working family, the 2 hour procedure that must occur exactly 28 days, is, I imagine a source of stress for many.

I should explain what a synergist shot is. The shot is given to high risk babies to help stave off RSV. RSV is a respiratory disease that can wreck havoc even among perfectly healthy babies. (one of my on-line friends springs to mind...her perfectly healthy 12 month boy endured a hospital stay far longer than any of Luna's. And during which the baby was on oxygen pretty regularly.).

So, you can imagine what a disease like that could do to a baby with already lower-than-normal sats.

Needless to say, leaving my baby behind in her Memere and Pepere's care just didn't sit well.

Then Paul and I decided we'd go out on the town. The 'town' is exactly 3 miles from my house and boasts more restaurants per capita than the Big Apple. If, God forbid, we were to receive some type of phone call where we needed to rush home (in reality the call would be in reference to Sienna, the perfect drama queen and not Luna), Paul and I could be home in exactly 15 minutes.

But no one wants to babysit. And not because it's the Big Night, but because no one feels comfortable caring for Luna. I had never even considered this.

I had arranged for a college-aged girl to watch the girls a few hours here and there over the holiday. Paul is on vacation til the 5th and the thought of us dashing off to a movie was so good it felt decadent.

But then my babysitter cancelled. And she cancelled again. Finally, her mother, and a good friend of mine confessed that her daughter just felt too nervous caring for Luna.

My friend delivered this information to me over a glass of wine and the words, like sour grapes, choked me as I listened. I realized, as the sentence "I needed to tell you, and Julie will be upset, but I had to explain the situation..." hovered between us, it wasn't the night and not being able to go out with my husband. It was the reality that heart disease is about so much more. And I would be lying if I said the stigma isn't there. It's there in the way people don't ask about Luna, or how they pretend not to notice the adorable baby right in front of them. I have sensed this on many occasions now, and my friend's words seemed to set-off a back-up system in my memory, where suddenly every incident where extended family, friends, and causal acquaintances seemed not to notice the only baby in the room, came rushing forth.

At the end of the night I was thankful for the honestly from my friend. I had started to breath again, and had tricked myself into thinking things are normal. But they aren't and they never will be. But since I first learned of Lu's diagnosis, my mantra to myself has been, "this heart baby will be the best thing to ever happen to our family". And reflecting back on the year that was, I do believe she is.


Mindi said...

Drop the girls off. We'd love to have them! Forget the suregeries and the worry, everday things can sometimes be the hardest to deal with. When you get it all figured out, let me know okay?

much love.

Jeff Gallagher said...

I can relate with every word of your story, Sabrina. As the parent of another "heart baby" we get all kinds of looks and stares when people peek into the carriage and see Jacob wearing his oxygen. But it is what it is. He is the best thing that has happened to our family this year, and we are giving thanks for that. He and Luna need to meet ASAP!

Happy New Year -- wherever you spend it.

Intl Maman said...

I'm sorry. It isn't just hearts that freak babysitters out. Epipens have the curious ability to do that as well, even when the sitting will entirely take place in an allergen free house with a sleeping patient.

But there are brave sitters out there. And they are the best sitters you could ask for, often moms or siblings of other 'scary' kids who get it.

hugs and Happy New Year!

Mommy said...

I can somewhat relate, although not in the babysitting arena as we have IL who do that. But I did have a close friend recently tell me that she fields questions from many of my other friends about how the kids are doing. They don't want to ask me directly because they are worried if the news is bad I'll be pained to talk about it. So, I do understand the social isolation.

The older Luna gets, and the more "stable" she appears to people, the easier it will get for people to feel capable of watching her. It will just take them a little longer to work of the confidence.

Sabrina, I think of you often. I hope this next year is wonderful for you and your family!