Mayday on One May Day

It was one of those typical days. We have our routine going on and everything was just how it should be. It was close to 8pm, around after dinner, and we were with extended family at an aunt’s house. I was helping to clean up after dinner while the husband was getting ready to pack up and leave. My son was enjoying himself as he played and laughed with his cousins. I was getting ready to wash some dishes. I then heard my husband, calling for me from the living room, asking for some assistance as Isabella started throwing up. I took some kitchen towels with me on my way.


When I got to where they were at, I saw that look on Isabella’s eyes. That look that I saw 6 months ago. That “focal seizing look”. I then told my husband that I think Isabella’s having a seizure. He didn’t think she was and even added that Isabella is just sleepy (which of course a possibility since it was already close to 8pm… her bedtime). I insisted that she was seizing and went to pretend to put my fingers to touch her eye just to demonstrate, and make a point, that Isabella was just staring emptily into space. She did not blink. My husband was trying to talk to her… distract her, to demonstrate his point that she was not seizing. I still insisted and told him that this “look” was the same look I saw that first time that she had a seizure. I started looking at the clock while he took Isabella to the bathroom with her Keppra medication as it was almost time for her to have it. He gave it through her g-tube.


I started collecting our stuff…. The whole family oblivious of what was already going on. Then followed my husband to the bathroom to check how things are going. She was throwing up her meds, looked weaker, tiny twitching started to happen. I told him that it will be 10 minutes in 2 minutes. My husband finally acknowledged that it was indeed a seizure and asked for me to come get the Diastat.


It took awhile for us to figure out how to open the medication. We had to re-read the instructions. We kinda both forgot how we were told to administer it. When we finally able to give it to her, I asked my husband what happens next. He said that it is supposed to take effect immediately as it is administered rectally. We waited. I was still watching the clock.


I went to my aunt and told her that Isabella is having a seizure and if it does not stop we would be calling 911. My husband called our son to let him know that his sister is seizing. We wanted him to see what her seizure looks like. He figured that had this happened on our drive home we would not even know that she was already seizing in her car seat and since her brother sits with her at the back of the car, he can help us see it.


My son already knew what this meant…. He was going to stay behind while Mommy and Daddy leave to go to the hospital. Thank God we were at a relative’s house.


10 minutes passed (which actually felt like forever since the seizure started), and the seizing has not ceased. I called 911. I stayed on the phone and my husband was talking to my aunt figuring out logistics for Eloi and driving, and pick up, etc. We were quick… we were thinking straight and we were on top of it. I stayed on the phone with the 911 dispatcher and waited for the paramedics to arrive at the front of the house. When I heard the sirens coming closer I called for my husband. When the paramedics arrived, instead of having them come to Isabella, we took her to them. It was one less trauma for all my nephews and nieces and the rest of the family to see. My husband and I were calm and collected…. Unusually quiet, but calm and collected nonetheless.


I rode the ambulance to the nearest hospital. My husband followed. When we got there I gave them the rundown of things that she has. I could just tell them the name of her syndrome as that covers all of it, but since it is rare, and they can’t even spell it, I had to name them all her complications one by one. I have to stress over and over that she has kidney issues just to make sure that they will not give her anything that can damage her kidneys. We would not want to add one more thing to the already long list of things. I sat and watched them work on her.


The ER team poked and prodded and administered does of different kinds of medicines. Then they decided to intubate… I felt it was not necessary but let it go, as I know that they are doing their best and following procedure and have every good intention to help my daughter get through the seizure. I can’t really do much, but to wait and watch and pray.


We were asked questions and we filled out paper work… an hour after we got there, the seizing finally stopped and Isabella was heavily sedated on the ER bed. That’s when we started talking to them about taking Isabella to Stanford as that was what was done the first time she had a seizure… and also because they know her there. They called Stanford and their team will be coming to get her. They got there passed midnight and we were settled in at Stanford around 1am.


The first thing they did was extubate her, and while we were there Isabella was trying to wake up. She was groggy and crying, but awake. She needed to sleep though but she kept trying to be awake. Eventually, after trying to fight the meds, the sleepy meds took over and she was asleep.


My husband and I were not worried nor were we crying. We were just there. A little stoic maybe… but we were there. We started talking about how to break the news to our son that we would have to postpone our trip to the Aquarium the next day (one of the three trips that we already promised me but didn’t get to go because something comes up with Isabella that prevents us from going), planning how to get our son to school on Monday, how to get a substitute for work, how one of us would have to go home and one stay at the hospital. Then we remembered the dog we left at home in her crate (poor doggy… she would have to go make sacrifices too).


The next day, the first thing that Isabella did was try to sit up. She was still too weak and groggy from the meds that she can’t. She was grumpy and crying. After rounds we were told that they need to adjust the meds. They suspect that the seizure happened because she was already bigger and the dose was not enough. A little later after a consult with our neuro, we were told that she was going to be discharged.


When we got home and got settled in, and perhaps after all the adrenalin has left my system, I finally found the time to feel and cry over what just happened. I was worried about how the seizure is going to affect her development. How far back will Isabella lose the skills that she (and everybody working with her) worked so hard to develop?


When I awoke the following day, I saw Isabella sitting like she used to, rattling a toy and smiling as if nothing happened. My girl is so resilient…. Mama’s got to learn how to become more like her.

Ready for a garden tea party!

(This picture was taken that afternoon before Isabella's seizure.)

My Two Boo's

Here is a video my son booing his sister.

Pardon the "W" sitting as I did not want to interrupt their happy moment.

My "Changed" Life

“Your life must have changed after having been given a child with special needs”.



Someone told me once… and yes, I may have to say so that my life has indeed changed. But doesn’t every baby, special or not change you in a way?


Sure we have more doctor’s appointments to keep, more specialists to meet, and more prescriptions to fill than the average family. We have a nurse instead of your standard baby sitter, and specialists come to our house instead of us taking our baby out for play groups.
We will be spending our money longer on diapers and formula and maybe even co pays…. But we get to save on baby clothes, because our daughter takes her time to grow… so that is savings that can go in the bank… Cha-Cha-Ching!


And, yeah, we don’t really need to stay up all night feeding our baby because a kangaroo pump does that for her, but we still have our share of sleepless nights and restless days,  because just like the “others” we do still deal with colic and constipation and teething.

We probably spend more time at the hospital than any typical family, but at that hospital, we see other parents like us who have put in their hospital time as long as we have and we feel no different from them. Actually, in a way, we feel a bit ahead from the typical parents because if we need to have our baby stay at the ICU, we have the most expensive baby care team in the world watching her while we go out and have dinner... Date Night!

Our typical-parents-with new-baby counterparts go look at calendars and dates and proudly talk about milestones and how old their babies are, while we try to stay away from developmental charts and just focus on our daughter as an individual and beam with pride to see the upward curve on the growth chart she made specifically for herself…. But that really does not make us any different. We beam and boast just as much as the typical parents do no matter how trivial and small they interpret our achievement to be.

“Oh my Isabella didn’t throw-up all her feeds today…. Good job baby girl!”


That feeling of pride we feel as parents is no different from theirs…. Though,I may be a bit modest there…. Because honestly, those “little trivial milestones” took a lot of hardwork, and really our pride is magnified 10x more than that of the ordinary parent. So in that respect, really we are better of… but really, its not something to brag about… even if it is... so I won't.... I mean, I will try not to.

We will be packing a diaper bag and a stroller with us for a longer period of time than the "normal" parents… and our baby will stay younger longer for what her actual age is… but so what?

All that time we have ahead in the infant-to-baby-game makes us experts in the diaper-bag-bulky-stroller-hauling- and moving-business. We can have our eyes closed and still be able to formulate the right consistency for semi solid baby foods. We also look great doing it. No baby weight to lose, no more sticky-hair-sleep-less-nights-i-look-like-a-mess days... well maybe not a lot of that, and most definitely not a night-after-night-after-night (mare?) ordeal. Most importantly, we can have her and baby her for longer than any other parent in the world.

And the tears? Sure, there are lots of them, maybe more than what is considered "normal".... but what else is out of the norm is the amount and intensity of the "tears of joy" we get to experience. There really is nothing like having tears of joy... imagine that intense feeling of tears from sadness and grief, and flip it to the other side.... hard to imagine huh? ...we'll if you could only be me for a day, then you would probably understand where I am coming from, that is if a day would be enough really. Oh, we have many many many tears of joy to enjoy!


So, did my life change?

It most definitely has….


Who wants to live an ordinary life anyways?

The Many Different Reactions of People

I find it amusing watching how people react upon mentioning that my daughter has a disability. Well at first I felt very defensive, sometimes ashamed… but now, even if I still lie about her age to most people, I take no offense in the oftentimes off reactions of people. Its sort of like being a part of a social experiment... sometimes shocking, sometimes dumbfounding, sometimes awkward, but most times amusing. Here are some of my classic experiences…



The Awkward Silence

Lady: Oh, look a tiny baby. How old is she?
Me: She’s 10 months.
Lady: No! She can’t be 10 months. She’s too small. Is she a preemie?
Me: No… she has a syndrome
Lady: Silence…. A really long and awkward silence.



The That’s Lucky

Most of the people in our church community are aware that many daughter has special needs. They may not know exactly the name of the syndrome she has, or the many complications that came with my Isabella having the WHS, but they know that my daughter has special needs. So it’s not really a surprise is a curiosity will propel someone to actually approach me to ask about details….

Lady: So you’re daughter has a disability?
Me: Yes. She has a syndrome.
Lady: I heard she was just at the hospital and was in the emergency room.
Me: Yeah, she had a seizure.
Lady: Oh, I’m sorry…We prayed for you.
Me: Oh thank you for all your paryers.
Lady: You’re lucky do you know that?
Me: I guess so.
Lady: Watch it. You’re going to win something big.
Me: Like in the lottery or at the casino?
Lady: Yeah. Cause having a baby like that is lucky.
Me: Oh I hope you’re right.
Lady: Watch it and you’ll see. That’s lucky.



The Is Something Wrong With Her

Lady: Oh, look at this small baby. Is she a preemie?
Me: No… she’s just small.
Lady: Is something wrong with her?
Me: No, nothing wrong with her…. She has a syndrome, but nothing is wrong with her.

The lady then, with that pity look in her eyes and a small smile on her lips, touches me on the shoulder, touches the baby’s head, then walks away.



The What’s Up With Her Eyes

I was at the photo store picking up a set of pictures. I was reviewing them on the counter when the lady behind me goes

Lady: Oh look at those baby pictures.
Me: Smiled
Lady: Who’s baby is that? What’s up with her eyes?
Me: She’s mine. What do you mean what’s up with her eyes?
Lady: Oh, I’m sorry…. Then she immediately walked away.


What I really wanted to say was…

Me: What?!? Her eyes are not proportionally spaced enough for you !?!



The She Looks Like an Elf

I brought the baby with me to work one time. Most everyone at work know that my baby has a syndrome. Not everyone know the details, but nonetheless its common knowledge at work that my baby is a special needs baby.

Co teacher 1: Oh look at her. She’s looking around.
Co Teacher 2: She seems aware of what’s around her

Isabella then smiles, moves her hands around and kicks

Co teacher 3: Oh look she’s smiling.
Co teacher 4: And she’s looking at you
Co Teacher 5: It seems like she knows you.

(Duh? I’m her mom?)

Co Teacher 6: She’s just really happy and smiling.
Co Teacher 7: Yes she does.
Co teacher 8: She’s so cute.
Co teacher: 9 She looks like an elf!


I know they all mean well and most of them just probably don’t know what to say, or how to react but wanted to say something. I’m sure when they saw my Isabella, she was not what they were expecting her to be. They were probably thinking that my baby is a non responsive vegetable, and while I do respect all that, and honestly take no offense at it, I was surprised with the “elf” comment.



The She’s Not 15 months

So, this follows the story of when I brought my daughter to work…

Co teacher 1: So, how old is she now?
Me: She’s 15 months.
Co teacher 2: No, she’s not 15 months?
Me: (I’m thinking, Are you seriously saying this?)
Co Teacher 3: Is she really 15 months?
Me: Yes. I’m sure. (Are they doubting me… the mommy? )
Co teacher 4: She looks more like 4 months.
Me: Yeah… she’s the size of a 4 month old. But I’m sure she’s 15 months now.

What I really wanted to say was…

Me: Yeah… remember? About 4 months ago I had a baby? Remember that?


This whole conversation with my co teachers kinda surprised me really coz I what thought was common knowledge, I guess isn’t really “common”.



The Don’t be Frustrated

We work with many doctors/specialists. Out of the many doctors we work with, we only met one who has actually met or seen another child with WHS. This one time that we had an appointment with him, our conversation went like this...

Doctor: Tell me the things she can do now.
Me: She rolls, she puts her hands together, she outs her thumb in her mouth, and she can sit supporting herself with her hands.
Doctor: Does she smile?
Me: Yes she does… she smiles a lot and at everyone.
Doctor: (To Isabella) Are you going to smile for me little princess?
Me: Go Isabella, smile for the doctor, come on… come on.

Isabella does not smile.


Doctor: That’s okay. She’s probably smiling and you just don’t know it because of the down turned mouth that WHS kids have.

Me: Oh, but she does smile and you can really see it. Come on Isabella, smile for the doctor.
Doctor: That’s okay. You don’t need to be frustrated. I’m sure she’s smiling right now, but we just can’t see it.
Me: (I’m thinking… but I really do see it and its an obvious smile, and I’m not frustrated because she does smile and, no… I don’t think she has a prominent “downturned mouth” that I can’t tell if my own daughter is smiling).



And this is my most favorite…
The My Condolences

I have not spoken with this friend for a loooong time. I was busy with my pregnancy with Isabella, and then dealing with complications towards the later part of the pregnancy and then the long list of things right after she was born… when we finally got the chance to talk, here is how our conversation went…

Friend: Hey. I have not spoken to you in a while. I hear all these things through the grapevine about what’s going on with your daughter, but I was not really sure until I actually get to talk to you. So how is your daughter?
Me: It’s a long story. (Then I started choking on tears). She has a syndrome and she has all these complications. Underdeveloped brain structures, fluid in the brain, brain cysts, liver cysts, hearing loss, small kidneys, acid reflux, kidney reflux, cleft palate…. It just seems to go on and on…=
Friend: So how are you?
Me: I’m coping… I’m trying my best.
Friend: Well… my condolences.

Now this got me thinking…. Is my condolences something you say when you send your sympathy in general, not necessarily, specific to someone passing away?... I’m confused.