Bubbles

Bubbles can really make the most awful day (days, weeks, months?) seem better, can't they?

Thank you Bonnie, you are the best Auntie and a life saver.

3640

No, there are no cute Memorial Day photos of Eliza happily enjoying a barbecue. There is very little Eliza enjoyed about this weekend. The ill-fated trip to Toys R Us on Saturday resulted in a two our screaming, crying meltdown. Today's attempt to attend a barbecue was likewise not "well received." When she does have one of these meltdowns through her tears she says "don't cry," go figure. Actually Eliza was quite content to sit in the car in the driveway, but that seemed to defeat the purpose of attending a holiday function. While our hosts and other guests repeatedly told me they didn't "mind" the screaming and thrashing about, they were a bit nonplussed when I pointed out that neither I nor Eliza were enjoying this which was really why we were leaving. Protestations to the contrary I am sure they breathed a collective sigh of relief when we left early.

So what does the above number mean?

Nope, not the winning Take 4 number. Not the last four digits oif my social security number. A very respectable year of billing at a big law firm? Wrong again. It is the number of hours of therapy Eliza has attended since leaving the NICU almost 3 years ago. This does not include the number of hours spent getting evaluated by some therapaist or doctor, or the hours spent in a doctor's office.

What do we really have to show for this? Eliza can't eat any food more difficult or comlex than half an oreo (no cream). She is three and cannot navigate steps on her own. She can't remotely dress or undress herself. She can't attend any gathering with more than 3 people. She can't really say more than a few phrases (although bless her heart she knows the difference between an alpaca and a llama). Would she have been in the exact same spot but have been a happier kid without all of this?

That is the 3,640 dollar question, now isn't it?

On Time

Is this a foreign concept to people? Do people who seemingly live in the same time zone, think that we will seriously entertain their claims that the west side of Manhattan is in a different time zone than the east side of the same barely-two-mile-wide-island?

Why is this vexing me you ask? I'll be happy to tell you why.

If you have not yet gathered, Eliza goes to therapy. Eliza's goes to a lot of freaking therapy. About 20 hours of therapy a week. With the travel time to and from therapy this is about 30 hours a week. In France this would be a full time job. We are on time for our therapy. Always. Really. Have never been late. Truly. ON TIME.

One of Eliza's therapies is a group feeding therapy. The operative word being GROUP. This means we are reliant upon 5 other parents/caregivers in the GROUP to attend on time. ON TIME. Not 10 minutes late. Not 15 minutes late. Why are these kids in group feeding therapy? Because they have sensory issues that impair their ability to eat. What else do kids with sensory issues suffer from? Quiz time here ... an inability to organize their world, an inability that worsens when their world does not flow in the same pattern they are used to.

What does this mean for Eliza? Well it means that Eliza has had unadulterated-call-out-the-doctor-and-the-prescription-medication-shit-fit each and every time these other parents/caregivers have not been on time thereby delaying the GROUP therapy. Great.

So the next time you as a parent, doctor, therapist, nurse, faith-healer, medicine man, guru, social worker, teacher think that 10 minutes or 15 minutes is not a "big deal" to make my kid wait, you spend one freaking day in my child's skin and then you tell me how much those minutes changed your day. I can assure you that you will not like it.

Oh, and my solution to the tardiness of my fine comrades? We are going to show up 15minutes after the allegedly scheduled start time just so we are now there, effectively ON TIME.

Rain Puddles

This weekend, Eliza and I spent the day at the American Museum of Natural History with cousin Peter. The day started out fairly nasty, but brightened up a bit as the day went on. The skies cleared and the park was filled with rain puddles. Eliza, like any self-respecting 3 year old worth her salt, absolutely had to step in every puddle.

Isn't she cute:




Then Eliza decided one particularly large puddle needed to be splashed with her hands. As I was calculating exactly the parts per million germ factor of your average Central Park rain puddle, Eliza reached her soaking wet hand to her mouth and LICKED HER FINGERS, pronouncing the rain water "yummy." There are no pictures of this magic moment since I was sprinting toward her with a Clorox wipe wondering if it was OK to wipe her tongue with said wipe.

Before the germ filled puddle event we had a nice day at the museum, so I'll leave you with some photos:






And one last photo of one of the rare sightings of Eliza actually eating ice cream!

"She'll Be Fine"

When Eliza was in the NICU the thing I most hated people telling me was "she'll be fine," "everything will be OK," or one of the many variations on this theme. At first I used to say to myself "and how the hell would you know that?" Then I simply started saying it out loud to the usually well-intentioned speaker. My response was often not well received. Maybe some recent tragedies in the micropreemie world have gotten me focused on this over used phrase and poor attempt at comfort, but I have started to notice again how often people say this when they really don't know this to be true. Why do people persist in this? Maybe they think that if they say it enough it must be true and the baby will be fine? I just don't know what they are thinking.

In our little micropreemie world, the past few weeks have had a number of tragic losses and unexpected deaths of babies that were born too soon. Some of these babies had been home and relatively healthy for months, years even, yet the lingering effects of their prematurity took their lives. I wonder how many times did their mothers hear someone flippantly tell them "she'll be fine" when in fact the person had no clue as to what they were talking about. When you really think about it, telling parents "she'll be fine" is not only presumptuous, but is pretty condescending, as if the person actually knows something more about the child's condition than you the parent.

In the same vein, I often wonder why people persist in offering up some example (usually mythical) of another child who has the same problem(s) your child has, but who has triumphed miraculously over adversity. I heard a story not long ago about an alleged "21 weeker" who was now a robust 5 year old with no residual problems ("21weeker" can be loosely translated to "mother has no idea when child was conceived"). Should I walk away feeling better or worse that my 26 weeker has a bucket of problems than the mythic 21 weeker? I asked the person telling me the tale of the 21 weeker if it was possible that the mother simply chose not to divulge the problems the child had, because maybe she (like me) was tired of hearing "she'll be fine" whenever a problem was even mentioned. The person telling me this tale couldn't even accept that it was possible that the mother did what we all do, and simply told the person "she's fine" as a way to end the conversation.

So maybe the next time we want to drag out the old platitudes of "she'll be fine" or "everything will be OK" when someone tells us their child's problems, we will instead say "that sounds awful and I don't know what you are dealing with, but if I can help in any way, please let me know." Because sometimes, things just don't end up OK.

Just a suggestion.