May 31, 2010: Memorial Day and a Birthday

Happy Birthday Daddy and a very, very big thank you for serving your country ...




I miss you every single day.

Art ...May 2010

While fully recognizing that every parent thinks his or her child is an artistic genius, here are some of Eliza's latest creations. Eliza tells you what she is going to paint before she starts. Eliza gives most of her paintings names that describe not only the main subject but the context.

Saba Snail (we have more than our share of snails):



Bridge Over Water (luckily not troubled waters):



Giant Squid ("like at the museum Mama"):



Green Ice Cream Cone (only green thing Eliza will eat is Pistachio ice cream):



And of course...

Bosley (our cat) Running on a Dirt Hill:



She really is quite the picky little artist, very cautious about mixing her colors, very specific about her media and brush choice. But really she is just stinking cute:






Oh and the "cat" she is strangling... a gift from cousin Karen. The "cat" bears a striking resemblance to Nana Wilda's cat Smutty, who Eliza adores. Hopefully Eliza will be moved to include Smutty in her next series of water colors :)

Not That You Were Counting, But...

As of yesterday, Eliza has been home from the NICU for 1,432 days. Add in the 100 days in the NICU and Eliza has been with us for 1,532 days. Of these she has slept through the night 57 nights.

People, this is not good math.

Emu

As an encore to "Humpback Whale" Eliza gives you "Emu" in chalk:



It is exhausting channeling your inner artiste.

Busted

When we were on Saba in March and April, Eliza quietly stopped using her bottle and started to exclusively drink her formula from the box it comes in:



or from one of her valveless sippy cups:



In the evenings Eliza gets a couple of medications that I was able to mix in her formula in her bottle. They are luckily tasteless, or at least mix well with the yummy vanilla and chocolate flavors offered by the kind folks at Nestle Nutrition.

Since giving up the bottle I would mix the medications into a cup of formula and give Eliza her formula in a cup at night. This worked well for a couple of weeks.

Then Eliza started insisting on having her formula in the box at night. So I would poke the hole for the straw, pour out about an ounce of formula, make the hole slightly larger so I could place a medication syringe in the hole and use the syringe as a sort of funnel to get the medications in the box. This method worked well for about a week.

Until tonight.

Eliza took the box of formula I had "altered" (Eliza would perhaps use a slightly stronger word, like "poisoned" or "tainted") and handed it back to me, opened the fridge, got a new box of the identical formula and said: "I want this one."

Huh.

So I told her to go in the living room and that I would bring it to her (giving me time to "alter" this box). No dice at all. She smiled very politely and said "I'll wait here for it, thank you."

I am pretty sure I am totally busted.

At least she said "thank you."

Blah, blah, blah

Eliza and I had a grand time today. Eliza got three of these:



Each one was like a nail in the proverbial coffin of her relationship with her pediatrician.

Then we got to put Eliza on one of these:



Of course Dr. G's scale is not made of shiny brass. But brass or no brass the damn thing did not move past 29 pounds. Eliza is now officially in the 50th percentile for a two year old. She is four. Actually she is now 50 months old, but who except for me is counting?


Note to gentle readers: If you have a 4 year old who is say, 35 pounds and eats "only" 3 chicken nuggets a day, or a 3 year old who is also only 29 pounds and only eat 8 jars of purees a day, I forewarn you I will NOT feel your pain, but likely suggest you do some higher math before trying to make me feel better with these comparisons. I know you will mean well, but my empathy gene is on vacation this week. It will be back next week.

Mother's Day

My first Mother's Day in 2006 was just not your typical Mother's Day. As great as it is to be a new mom, spending the day in the NICU is just not something that you wrote down on your "to do" list 9 months earlier:



This year, Eliza is less wrinkled, I am more wrinkled; I now wear glasses, Eliza no longer wears her CPAP; we both are chunkier (me more so than Eliza); my mom is shorter, but she still fits in her cute white jacket and my mother's hair looks EXACTLY the same (in fairness it has looked exactly the same for the past 40 years).



Happy Mother's Day all ... especially those moms who have to spend it in the NICU.

Stolen Post

Sometimes another Blogger's post is totally worth heisting. So long as you give credit where credit is due, it's not really plagiarizing.

I found this great list here

and then here

Only to discover it started here

For those of you who don't want to follow the growing list of links, here is the text of this great post:

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.

2. Because we’ve discovered patience we never knew we had.

3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.

4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.

5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.

7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.

8. Because we are strong. Man, are we strong. Who knew we could be this strong?

9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.

10. Because we work overtime every single day.

11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.

12. Because we are more selfless than other moms. Our kids need us more.

13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.

14. Because we inspire one another in this crazy blogosphere every single day.

15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.

16. Because we never stop pushing for our kids.

17. Because we never stop hoping for them, either.

18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.

19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."

20. Because, well, you tell me.

Nurse's Week

May 6th marks the beginning of Nurse's Week. The week culminates on May 12, the birthday of Florence Nightingale.

If you are lucky, you and your loved ones have never really needed to rely on skilled nursing care.

Then again, maybe those of us who have had to put our lives, and the lives of our family members, in the hands of nurses are the lucky ones since we have been given the opportunity to meet some extraordinary people.

It is impossible for me to ever adequately thank the nurses who cared for me and Eliza. They helped Eliza when my body failed her. How do you thank someone for that?




Thank you all.

Artist in Training

One of Eliza's favorite animals:




The humpback whale.

Not a bad rendition for a 4 year old who supposedly has the fine motor function of a 20 month old!