Ashe Background

Ashe Background

Wednesday, July 18, 2012

Who says lighting doesn’t strike twice?

I sometimes get asked how our life has changed since Lexie has come along. Many times I think they just want to ask if our life is as bad as they think it is. Not bad as in living in a daily piece of hell, but just the constant knowing that you will always have a special needs child. How her appointments/therapies affect our daily lives, whether we feel like we have to do more to accommodate her and if we are prepared for what the future throws at us. I have said this before and I will always say it again. Children regardless of their need are always in need of accommodating parents. Yes, I expected to be running back and forth between school, playgroup events and extracurricular activities.  Of course we did not expect the surgeries, therapies, special gear, and the constant dependency. Does it mean that it is really bad? No, just different. We became parents because we wanted our own children to love, not because we wanted to feel imposed or bothered by them. In all honesty, Eric and I don’t feel like we or any parent should feel like they sacrificed anything for their children. It should always be given willingly and lovingly. The past two years with Lexie have been great! There were ups and downs but our life has definitely been enriched with her and I only hope people understand that when they see us struggling during those not so grand times. For instance, like now.

When I found out I was pregnant, Eric and I knew we could easily have another special needs child. We have seen many families who have had one special needs child and go on to have healthy children. However, my own senses told me that if I would think it could not happen again would be foolish. We had the same odds regardless if we already had a special needs child or not. We know from all of the genetic make-up we had done when Lexie was born that the chances did not grow nor diminish. I can maybe shoot off on one hand the number of families who have two children with hydrocephalus. However, I can’t and neither can my doctor say how many have two kids that are different genders. It is that small. We were told the chances didn’t increase, but they also didn’t decrease. Life does not hand out a punch card when you are born. Just because you have the “special needs parent hole” punched out doesn’t mean it can’t or will not happen again.  I am sure you are getting the picture, but I going to just lay it out for you.  We have found out that our son also has hydrocephalus. Yup, we now have two healthy children and will have two special needs children. When we first spoke with the doctor, she said so calmly, “Ma’am the chances of that happening again are really low, I don’t think it should be that much of a concern.” My reply was short and sweet, “Regardless of what you say, my mind will not be convinced until I see the brain scan on the ultrasound.” We did see the brain scan that day and before the doctor could say anything, I said, “Yup those vents are too big.” Unfortunately for her the brain scan was not at all what she was expecting and I could see the remorse in her face. 

Close friends and family can tell you it was a hard day, but not one that was totally out of left field. Doctor Faucett, who is the High Risk OB, and who also happened to be my doctor during Lexie’s pregnancy was in shock. Many times some doctors can act a little smug, but I remember him just sitting there trying to grasp on to the situation. He looked just as perplexed as the doctor at the ultrasound. I remember him repeating to himself…a boy with hydro, you would think x-linked but maybe not because the sister has it as well. (Only boys can carry the X-linked gene) It was somewhat perplexing watching him try to give Eric and I a solid answer, but we all knew it just was not there. He is a fantastic doctor and I am quite sad that we will not be able to see him throughout this pregnancy. We have already been through so much that he feels more like a great friend than just my doctor. I think it helps because he is used to my candor and bluntness. Here is a sample of a conversation between us to give you an idea.  

Dr. Faucett- If anyone can do it, it is you! You guys have such a great attitude and have adjusted wonderfully to life with Lexie.
Me- Because we had too! We didn’t have much of a choice!
Dr.- Who knows…Maybe a long time ago you made a deal with God that instead of having a horrible person like Hitler as a son, you would have two special needs children.
Me- Well, that will be last time I drink with God again!  (Dr. Faucett is a devout Mormon so I had to include alcohol in there somewhere ;)
See!! Where am I going to find a Doctor that I can tell off and joke with all at the same time??

If you know me and aren’t already convinced that I am one crazy person, this may just do you in. My brain works differently than other people!

I am a HUGE fan of the Cosby show.  I am 99.9% sure that I've seen every episode at least 5 times. I was raised watching the Cosby show and they just seemed like the best family. You had two people who had the best marriage and were constantly throwing themselves at each other while still being very devoted and at times unusual parents. In one episode Vanessa brings home her FiancĂ© Dabnus for the first time. Her parents had no idea she was even seeing anyone and not to only make matters worse he is much older and has way more experience with the opposite sex than her parents would like. Even though he seems like a great guy, has a good job, and seems to have his head on straight her parents aren’t amused.  Whenever I think about life with a special needs child, I think about how Dr. Huckstable used a steak and a trash can lid analogy. 

Dr. Huxtable: Do you like steak?
Vanessa’s Fiance: Yeah, I love steak.
Dr. Huxtable: A Porterhouse.  Juicy… nicely marbled.
Vanessa’s Fiance: Absolutely.
Dr. Huxtable: You like mushrooms?
Vanessa’s Fiance: Oh yes.
Dr. Huxtable: You’ve got mushrooms… and onions too.  How about a baked potato?
Vanessa’s Fiance: Yes sir.
Dr. Huxtable: With sour cream?  Lot’s of fixings.  Can you taste it son?
Vanessa’s Fiance: Yes sir.
Dr. Huxtable: Now let’s say I come out of the kitchen with your perfectly cooked steak, and all the trimmings on a garbage can lid.  Not so appetizing is it now?  Son, that’s how you were brought into this house.  On a garbage can lid.

Basically something so good can be presented so horribly. How people can only see the trash can lid (special needs) and not see the steak (Our beautiful child). 
Did I just refer to a steak as a baby and the trash can lid as the special need? Yup…see I told you my brain is a weird place… you had fair warning!   

Despite the weirdness of this analogy it just always resonated with me. You’re given this beautiful child thinking this baby is going to be just how you pictured your baby to be. You start to imagine all of the wonderful normal childhood moments, their wedding, and finally watching them have their own children, but then you are presented with a child who has special needs that just may never get to do any of those things. The delivery of this child is completely different than what you expected. It doesn’t look as healthy but it is still your loving child and in your eyes will always be perfect. Unfortunately, with our children we still have to carry around that trash can lid everywhere we go and deal with the perception that many people will have about our life. Only assuming how my life is and showing your pity will make me think you don't get what is truly important.   I HATE Hydrocephalus with a passion but I love Lexie and our son more!

Friday, July 06, 2012

Independance Day

Our 4th of July was full of friends, fun, and fireworks!

  We enjoyed a fantastic lunch with good friends, rode in a patriotic bike parade, and ended the night off with fireworks. By the end of the day, we all were exhausted due to all of the excitement and the intense heat from the day. I don't remember 4th of July being so hot but my senses may be off due to pregnancy hormones.

 The kids right before the Evan's Mini Olympics ;)

 Tossing water balloons into the target

Here we are wearing shower caps that were topped with shaving cream.
The kids got to throw Cheetos at our heads and see how many they could get to stick. 

Even the Dads got to join in on all the fun!
The kids had to feed them ding dongs while blindfolded. 

4th of July Bike Parade

Lexie was walking all over the place, but Eric was only able to capture this one of our backsides. 

Amanda, Me, and Gracie
This was about the time when the heat was starting to get to me 
and Eric promptly said, "It is time to go home!" 

Fireworks in Pajamas

           Hope everyone enjoyed their 4th of July and celebrated our freedom to the max!

Tuesday, July 03, 2012

Fourth of July Craft

Talk about knocking out a craft in the nick of time! 
I was actually planning on doing this in Alamogordo, but we were just too busy. 

We made Firework Sun Catchers!
The kids enjoyed the craft and it took them all of about two minutes. However, the next whole hour was spent goofing around with the leftover tissue paper. Who would of thought cut up cheap pieces of paper would be that much fun?! We also made Sweet & Salty No Bake Nutella & Pretzel Cookies that will most likely not make it long in this house. Yummy!! 

A short video of the tissue paper excitement!
Poor Lexie was trying to take her nap during this fiasco.

Boy, Girl, Girl, BOY!

Before we made our way on down to Alamogordo we were able to find out that we will be welcoming a little BOY to our family.  Ethan was overly ecstatic! I reminded the children that we still need to pray for a healthy baby and that we will love him no matter what!

Monday, July 02, 2012

Visiting our Family in New Mexico

Since we have little more than a month before we make the long haul to the D.C. area, we figured it was time to go to Alamogordo and visit with our families. We have not been down in quite awhile so it was a nice treat to see everyone and for the kids to get reacquainted with their relatives. While we were there we were able to attend the Coyazo Family Reunion. Unfortunately, my Grandfather Librado is no longer with us, but it was wonderful that we all came together to celebrate him, his parents, and all of his brothers and sisters.

We were blessed to have Mariachis( my personal favorite) play for us and they happen to be standing in front of the family boards. A family board was made for every child of my great-grandparents. It included their children, grand children, great-grandchildren and in some cases great-great-grandchildren. As you can imagine with any typical Hispanic family, the boards were filled to the max with pictures ;)

Our little family

Me and my Grandmother Maria.
 Every family wore the same color of shirts and as you can tell our color was red. 

Ethan and cousin Jacob took full advantage of the cascarones (confetti eggs).

Here are the kids with their Great-Grandparents; Germ and Lapiz at the Space Hall of Fame

My siblings
Stephanie, Julian, Me, and Jennifer

Gracie and Grandma Margie cuddling

Lexie enjoying a kitchen bath with Great-Grandma Germ.
She loved every minute of it and pretty much flooded the kitchen

Ethan with his Uncle David

The kids enjoying the backyard swing with their cousins

Lexie giving her cousin Promise a kiss

Lexie and Great-Grandpa Lapiz joking around
Gracie having too much fun cooking with Grandma Teresa.

Ethan and Uncle David "horsing" around.

The kids with my Grandmother Maria

The kids with Eric's Parents, Dan and Teresa

The kids with Eric's Grandparents, Germ and Lapiz

Family picture with my side of the family

My parents with a majority of their grandchildren.

The funny thing is that barely scratches the surface on our huge family. ;)