Remembering Then to Really Appreciate Now

Dear Isabella,

I stumbled upon your pictures at the NICU and it brought tears in Nanay’s eyes. Anak, may our stay at the NICU serve as a memory and reminder for us to realize how far you’ve come.


I never thought I'd be saying this, but may I never forget our NICU days so that I will never take for granted each attempt you make to learn a new skill

Most importantly, may I always remember these days in the NICU, so that we can celebrate your triumphs for each skill that you worked so hard to master.


Anak, I pray that you never lose your persevering spirit. I will always be here to encourage and cheer you on.

With much love,
Nanay

The above pictures were all then.....

This is now.

I anticipate with joy all of your future progress. Take as much time as you need baby girl.

Hair Today... Gone Tomorrow

Isabella does this thing to help soothe herself. She would usually rub the back of her head on the fabric covering her bed to help calm herself down. And because she’s been doing this for soooo long, check out these before and after photos...

BEFORE

AFTER

Projectile Puking

I'm guessing that puking is part of the parenting package. At least for this (referring to me) parent's package.

 I remember when my son was a baby, he would throw up a lot… and I do mean, A LOT!

He even knows when the most opportune throwing up time is (i swear he can induce a barf at will)… such as that one time that we were in a restaurant… he would have a coughing spell that sounds like he was choking even if he was not, then throw up immediately after. And he would do this just as two elderly ladies are ogling him. How lovely!

Another time he chose to throw up at a restaurant, and he did this right before we were about to leave… just when we thought we were going to be spared from embarrassment, he did it, right there, with an audience. The waiter came and had to mop our area suppressing his own urge to barf, meanwhile we were scrounging for all the bills and cash we have so we can at least leave the poor guy a decent tip.

Another “favorite”, was when we went to a buffet and in the middle of our all you can eat dinner, my son decided to entice us with what he had for dinner. In the middle of our meal, of course, we lost our appetite. We cleaned up his puke-mater as much as we can, with the very limited paper towels we had on our table, threw the soiled paper in the trash, and cover the left over mess with the table napkin. We left the restaurant just walking straight to the door not daring to look back. We did leave $30 for whoever was bound to discover the sordid “surprise” we left. How embarrassing!

It was at that time that my husband and I realized that date night would have to be put on hold… at least until Eloi can manage to keep his food down.

I never really understood why he had this affinity for not digesting his food all the way. It baffles me to this day.

And now, enter my little Isabella.

It was understandable that she would puke when she had her NG tube, it was also understandable that she would puke when the food came down too fast in her G tube. And since feeding issues come with her syndorme, her puking was something, shall I say, predicted… something expected. No stress, no judgment, just something accepted as a regular part our everyday life. And since we’ve had all that puking practice in the past, we’ve become, shall I say, (ehem, ehem) experts at this puke business. We made certain that she would always have extra clothes, that we have a roll of paper towel, that we would give her food in parts, and have extra shirts for me, my husband and Eloi packed together with her diapers. We were always armed and ready for the barf battle.

Bring it on!



This afternoon though…. In the comfort and confines of my home, whilst Isabella was sitting on my lap and we were having coo conversations…. I was caught unguarded, and the projectile puke came from out of the blue, shooting from out of her nose and went right into my open mouth!


The physics behind this projectile puking was just amazing! This sort of talent just blew me away… I mean literally… SHE BLEW AWAY ON ME!

(Hahahaha!)

So, What Do You Say?

When my son was younger random people would just approach us and comment about how beautiful he is, how his curls make him cuter, etc. He attracted a lot of people. And we weren’t really surprised, he was a very cute baby.

Now, it’s Isabella’s turn. Random people would just come up to us and comment about how her eyes are bright and beautiful, how her lips are perfect, how her cheeks are so round and chubby that you just want to bite it, how she is so cuddly and squeezable, how she is beautiful and stunning and is no doubt a baby “girl”.

Now this is really nothing unusual. You see a baby, you look.

BUT, something was a little different…. Isabella seems to attract more people than Eloi did. She seem to magnet a lot more “oohhs” and “ahhs”. Could it be that she is that beautiful? Or is it because of something else?

When people do see and talk to her and try to get a smile out of her, they tend to ask this one question “ How old is she?” Now, I always find myself pausing before I answer this question (much like how I somehow try to avoid being asked the question “How is the baby?” or “How are you?”)

In that brief pause, this thought runs through my mind, “Do I tell her how old she really is?”

If I tell her that Isabella’s 6 months old, it will ensue a lot of follow up questions, and those follow up questions also give me a feeling of dread.

          Is she a preemie? (No she’s not, she’s full term)

          Why is she sooo tiny? (because her size is syndrome related)

          Is anything wrong with her? (No! Maybe something is wrong
          with you to even ask me that when I DON’T  EVEN KNOW YOU!)

I know, I know… most people mean well and they do get curious. Although, I have to admit that I did find myself wondering if the reason behind Isabella attracting extra curiosity is because of her ‘”look”. I did get to wonder if people are just being polite when they say “she’s beautiful” or if they see it. I am not a big fan of people staring.

The mama bear in me feels very defensive and protective of her little cub.

What do I say? Do I shock them with the response ‘Oh, it’s because she has a syndrome.” And walk away leaving them dumbfounded and marinating in their confused thoughts. Should I tell them that she has this rare syndrome and then proceed with a full blown lecture about WHS? If I do explain, will it result in the much needed “education of the public” about children with special needs? Do I print out brochures and flyers and pack them with me in my diaper bag ready to hand-out when the questions come?

Now, my husband tells them how old she really is, and when they ask why she’s small, he tells them,
“Because she just is.”

How he answers them makes perfect sense doesn’t it? I should be able to make myself confidently blurt out the same response… BUT, after his response people stay and look and stare at the baby and then look at us, as if waiting for a follow up, as if waiting for an explanation on why she’s small… they seem to not be content with “because she just is”. We stand there playing the “staring chicken game”…. And when it gets to the point that it becomes awkward, too awkward, they usually just walk away.

That “waiting for further information”, bothers me. I know it shouldn’t, but it does. I hope that eventually it won’t.

And since it bothers me, I tell people that Isabella is younger than she actually is. The other day this scenario happened…

          Stranger: Oh, tiny baby! How old is she?

          Me: Pause…. She’s 3 months.

          Stranger: 3 months? She’s too small for 3 months. (then stared
          at me as if waiting for an answer)

          Me: Staring…. Just staring… and eventually the stranger just
          walked away.

I realized I can’t pass my daughter for a 3 month old, so I decided to go another month lower and see if that excuse will “fly”. So with the next stranger…

          Stranger: Oh, cute baby! How old is she?

          Me: Pause…. She’s 2 months.
          Stranger: Smiles, stroked the baby's head a little and then
          walked away.

No awkwardness, no staring, no need to be defensive. There is this relief that that response worked out, HOWEVER, there is also this guilty lying feeling that sits in the pit of my stomach. And this tells me that what I’m doing is not quite right. Why else will my conscience bother me, right?

But, how long I can keep this up? Should I continue on with this “lie” (a white lie)? Should I come up with a better and more honest response that will not ensue such awkwardness, that won’t ensue that feeling that I need to explain?

I know, I know, I don’t really owe anybody, especially strangers an explanation, but, What do I say?