The Year My Daughter and I Were Born

Ok, so I took that title from a book I read recently called "The Year my Son and I were Born" which is based on a woman's first year trials with a baby with DS. Nonetheless, I felt the title was appropriate for ALL moms who have shared in these experiences.

Last Thursday marked the day that Hector and I were told (so kindly...not) that the doctors at Baylor thought Emily had Down Syndrome. I remember the conversation so vividly as there has not been a one that has impacted my life so greatly.

RECAP:

DR: "I have a question, who do you think the baby looks like?"

ME: "Well right now we all think she looks like Hector"

I'm thinking this is a sick attempt to tell me that Hector isn't the father. Even though I was 100% sure since he'd been the only guy I'd been with, I couldn't help but flash back in my mind quickly...

DR: "I don't think she looks like either one of you"

ME: "OK.............................................???"

DR: "Do either of you have a history of chromosomal abnormalities in your family?"

ME: "NO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"

DR: "She's extremely floppy"

ok what the hell do you think babies are doing 3 days out of the womb?

DR: "We think the baby has Down Syndrome"

ME: "Are you kidding me? I'm 24, not 40 and I'm perfectly healthy"

Everything after that was a blur because I was stunned, angry, pissed at the doctor for her lack of bedside manner, sad, and everything possible. I just sat there crying and telling myself that this couldn't possibly be true because I had a FLAWLESS pregnancy, ate the way I was supposed to.....

That night we went back to my grandparents for a few days because I needed the extra hands and remember my family convincing me that the doctors had to be wrong because Emily just didn't look like she had DS. She was perfectly healthy!

We got that awful call the next week from that doctor telling me that the Mayo Clinic had confirmed that Emily had Trisomy 21 ( a scientific way of saying Down Syndrome).

I remember just dropping to the floor crying and crying, harder than I ever had. It's a sort of feeling of grief. Not because your child is dead, but because the perfect child is no longer that.

I spent hours and hours online looking up stuff about DS because all I had learned in my two semesters of college biology is that Down Syndrome is something that happens to women who have babies after the age of 40, or cousins that sleep together...NOT ME!! The more I read, I got sadder. Unfortunately, the internet is full of old misconceptions and basically told me my child was a "mongaloid" or a "retard".

We plugged in with the Down Syndrome Partnership of Tarrant County which has helped me learn about programs and therapies to get my daughter into. Though I had that support, I wasn't ready to go to DS Christmas parties and meet other kids with Down Syndrome. I didn't want to see what would happen to my kid. I just wanted to keep her a baby and her innocence intact.

This past year has been the hardest of my life. Everything has changed. I had so many plans for how my life was going to be and it has been everything but. Yes, I know that it could "be so much worse" than it is. I'm really tired of hearing that. No, we don't have heart problems. No, Emily didn't have feeding tubes or ear tubes. Yes, she has grown. Yes, she is developing along the same path as other kids. But that doesn't discount the fact that our family has struggles too. We have to put forth WAY more effort than other parents with typical children do in order for our child to do things like bring her hands together. I hate hearing the phrase "mild Down Syndrome" because there is no such thing. DS is DS no matter how you put it and it just so happens that Emily's symptoms aren't as bad.

I hate spending my days planning around physical therapy, oral motor therapy, ECI appointments. Worrying about tests for her heart and ears that end up coming back normal. I hate that I have to stress out daily about what child mine is going to be. I hate the feeling that I'm not doing enough when she's struggling with something. And I hate that I feel that all of this is my fault. I hate it all....still.

Emily just celebrated her first birthday this past week and it was a time of celebration and a time of reflection. Has this caused me to grow as a person or has it just made me bitter and weak? I don't really have the answer to that yet. I want people to quit telling me that everything will be ok because they don't know what it feels like. They just don't know. I want to be allowed to feel whatever I do at this point.

I believe that everything happens for a reason and that sometimes those reasons are hard to understand. My child is the love of my life and apparently she is here to teach me something. I just don't know that I've learned it yet.

Carpet Burns, Teeth, and Sarah Palin

Emily is crawling! Well, sorta....it depends on what your definition of crawling is. She's been doing this army crawl since she turned 10 months old which is totally better than nothing. At least she can get anywhere she wants to and she can do it pretty fast. I've heard from a few people that their typical kiddo army crawled until they got ready to walk and never did a regular crawl.



What is regular anyway?



Because Emily is our first child and I have never grown up around babies, everything she does is normal to me. Someone else has to point something out to me in order for me to understand that we have a problem, if you even want to call it that. But I like the fact that I am learning this parenting stuff with her because it will sure make it easier the next time around!



Right now, we are in the process of teething and boy does it SUCK! My child has been the gripiest thing for the past week. It's either the teething or my PMS rubbing off on her. Is that even possible??



Nevertheless, I'm happy the teeth are coming in because we've stressed out about her possibly missing some of her teeth. I've read this can happen with a child with DS. Thank goodness this is not the case, or at least yet!!!



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So I've made up my mind about this law school business. I am so going! I know that if I don't do it I will live my life in regret. I'm kind of tired of people telling me that I can't do things because Emily has Down Syndrome. The last time I checked, Sarah Palin ran the biggest state in America while having an infant with D.S. Everyone says "well she's Sarah Palin". Fine, and I'm Heather Pulido. I can do it too. No one lives the life I do. Not even close.





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Keeping it ALL in Perspective

I am officially 9 months from graduating from college with my Bachelors of Science in Legal Studies! It will have taken me SEVEN years from the time I graduated high school to graduating from college. I have made some poor choices in life that have delayed this process, but I am so glad I finally got back on track to get it done!

We've decided to wait until I have a degree before I start looking for a job, er, career. The economy stinks right now and jobs are limited so having a degree under my belt will definitely help me get my foot in the door and increase that paycheck.

I have no idea what I want to do with myself afterward. I used to have all of these plans but now my priorities have completely changed. Law school is going to be 3 years which puts a big blackout in my "family building" years. I don't want to be pregnant during law school and in order for me to go next fall, I would have to get pregnant now so that I could have the baby and have a couple of months to recover before school starts. I just now got back into a size 6 and would rather not pack on all that weight again.

I like the law but am more fascinated with the politics of the law and history. I used to say that I wanted to have my own political talk radio show like Rush Limbaugh because I am darn good at arguing about these things. I like to say that I am the "Conservative Movement's NEXT Diva". (Ann Coulter has the title of the "Diva" right now). The last time I checked, you didn't need a JD after your name to be a pundit.

There is SOOO much I want to do. It feels like I have this purpose to do something great but I don't know what it is so I keep waiting for it to be revealed to me. But I am so impatient and I hope I don't make a bad choice thinking it was the right one. After my lack of judgment for about 5 years which landed me in hot water, I am petrified of making another bad decision. I have to ask Hector to make all decisions for me now because I am that afraid of it.

Grow up Heather!!!

The plan right now is to graduate in April and start applying to Grad schools in the meantime. I am contemplating getting my MBA or a Masters in Human Resources because that degree is SO powerful! HR's make rediculous money and you use the law in that job too. I have plenty of time to enroll in law school because I'm not even 25 yet. If I enrolled next year, I would be a 29 year old lawyer! I think putting it off a few years won't hurt too much! :)

I am so thankful now though that I have a husband who backs up anything I do. I know he gets frustrated with my indecisiveness but he is all for me being in school and getting as far as I can go. I am so glad that he's a good person and is real...something I have never really been around.

I was talking with my little sister the other day and was telling her that sometimes I wish I could go back and rewind to my senior year in highschool. What I wouldn't give to have those years back. I would have been done with school and I think I could have saved a lot of heartache, figuratively, and literally. But, then I know that if I hadn't taken the route I did then I wouldn't have learned anything. I wouldn't have Hector and definitely not Emily.

Oh what a great return I got!

Yada yada yada

For a person who used to spend all of their free time political blogging, I absolutely stink at keeping up with my posting now.

So Hector went to Mexico for 7 days, our first separation from each other in 2 1/2 years and it was awful. Not to say I didn't enjoy the time I spent hanging out with my family, but 7 days of limited communication (international calling rates are atrocious) with someone you spend every second with really sucks. He had to leave and visit his grandfather who had a stroke and was doing pretty bad. He hadn't been back to Mexico in 5 1/2 years so it was a good trip for him.

While he was gone, Emily and I did some damage at the stores. I am so glad my cousin Amber is as compulsive of a shopper as I am! Emily was fussing anyway so we took her out and loaded up her stroller with our bags. Seriously, we looked like a couple of girls who got our first credit card or something. When we got back to my grandparents' house, Mamaw just shook her head and said " you better hide all of that stuff before Hector gets back".

That was the plan and I thought it would work, but no. Ok, seriously, I have one of those husbands that every woman dreams of. He notices EVERYTHING! He noticed my new haircut and color, which was great, but then he noticed my new flip flops. What the heck? Every man I've ever known would never notice something like that. Hector knows when I change my polish color on my toes, a new lip gloss, EVERYTHING. I know most people are telling me to shut up and appreciate my adoring husband, but this is not a good thing when you are trying to slide a few new purchases by him.

Emily is on her way to crawling!! We were putting her to bed after Hector got back home and noticed that she was trying to get up on all fours. She managed to get up, rock forward, and then fall on her face. I am so excited that she is making this effort.

I have finally started to learn to let go of this comparison issue. Emily has fallen a couple of months behind other babies in certain areas, but I've learned to not look at what other kiddos are doing but rather at what she is doing. However, when compared to most other kids with DS, she is doing phenominal. I am so happy that the situation is not as bad as it could be.

She is very smart though (just like mama!). We won't know how she will do cognitively until she's about 2 years old, but her genetics doctor gave me some hope that she thinks Emily's IQ will actually be in the normal range. Of course it will be in the lower half, but she may escape being classified as having mental retardation. We will see how she's doing as she learns to talk and reason. Right now, she's just really good at manipulating her mom and dad! :)

Super Emily

After flipping out when Emily wasn't sitting up the moment she turned six months old, I've seen some dramatic improvements in her development. She has been sitting up for over three weeks now and getting better every day. She is now starting to be confident to go get stuff way out of her reach and usually ends up on her knees. We're on our way to crawling! Kelly, her physical therapist, thinks she should be crawling pretty soon and will hopefully be on time with the other kiddos.
I know that every child is different, even "typical" children, but it's still difficult to grasp the fact that Emily may struggle sometimes. So far we have been MONTHS ahead of the game when compared to other babies with Down Syndrome. I read on the chart the other day that most babies with DS don't sit up until 10 months old so the fact that she did it at 6 months is unbelievable!
My child is such a trooper! She aims for perfection and won't accept less than that. She tries very hard to do things and gets mad when she can't. But she always pulls through in the end and figures things out. I have so much admiration for her.

Keeping Austin Weird

We went to Austin this past weekend for a little R&R from our everyday stresses that have plagued us lately. We stayed with a friend so we didn't have to pay for a hotel which was AWESOME!

I've been bugging Hector for the past year to move down there. I told him we need to sell the house and get a move on it so that I can network for a good job after I graduate law school. Hector says that once I become governor then we can move down there. After listening to Governor Perry two weeks ago about succession, I actually may be President rather than Governor.

There are some odd people in Austin however. Seriously, these people have no shame. Maybe it's because we are so uptight here in DFW that these people seem like they are from another planet. But really bugged me are the freaks that broke into our Tahoe!

Hector went out to the car Saturday morning to get something for me and then came back and told me that someone had broken the window. I thought he was kidding, but sure enough the window had been completely shattered and there were marks on the ceiling where the thiefs had tried to pull out the DVD player. Too bad it was factory installed so it's impossible to pull out. I guessed this pissed off these people so they grabbed my day planner which was in the back pocket of the driver's seat.

Oh no you didn't! I KNEW I shouldn't have left that in there! Fortunately I had taken out my license and bankcards to put them in this little mini card holder that day. I had put the planner in that pocket to lighten the load in my tote/diaper bag. When we got back to our friend's house, I looked at it just left it in there because I assumed that no one would want it. Well at least these jerks have knowledge of all of Emily's doctor and ECI appointments.

The police sent a forensics person out to dust the car for prints. I asked him why we didn't hear anything and he said it's because the criminals know that the alarm doesn't sound unless you actually open the door, so they use a screwdriver to pop the window which only makes the sound of bacon frying. Damn, we had smart thugs hit us up. How come we never get our car broken into by the people you see on "World's Dumbest Criminals"?

So we had to spend $160 for a new window which put a dent into our spending money on anything else. That should be a phrase on a a bumper sticker: I went to Austin and all I got was this lousy window!"

A Spoon in My Side

A few weeks ago Hector and I were washing the dishes when we realized that a spoon had fallen down the disposal. Of course we didn't realize it until after we heard that horrible sound after I turned the disposal on.

Hector reached down and got the spoon out. Luckily, the spoon just managed some bumps and bruises as its edges had been compromised.

Nevertheless, I washed the spoon and then put it back in the drawer. A few days later I grabbed it to eat some jello (yes, jello) and noticed this metallic taste. Since the finish on the edge had rubbed off, the metal underneathe had been exposed and had this awful taste.

So the other day, I am looking for a spoon to eat something with and Hector asks why I am digging around in the spoon section rather than just grabbing the one on top. I tell him that I am trying to avoid the one that has been damaged.

He looks at me like I am the biggest dope and asks how come I didn't just throw the spoon away. "Seriously?" I reply, " then there will be an uneven number!"

That would bug you too......right?