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!

4 comments:

Sayngel said...
This comment has been removed by the author.
Sayra A said...

Your family is an inspiration to us all. I sit in my world with struggles such as my child not staying in his crib anymore, or how to get our 2yr old to go #2 in the toilet and your faced with so much more. Your children are blessed to have strong, loving, capable parents!

“Put yourself in a state of mind where you say to yourself, ‘Here is an opportunity for me to celebrate like never before, my own power, my own ability to get myself to do whatever is necessary’.” ~ Dr. Martin Luther King

Brad and Amy said...

Destiny & Eric - You guys have an amazing attitude about a difficult situation. I love your Cosby Show / trash can analogy. I can understand how most people might not want two trash can lids, but they fail to see the plump juicy steaks on top. Although I hate hydrocephalus, if God blessed me with two Claires, I would be so grateful for such sweet, patient, and silly children.

You guys will be amazing parents to your little boy, just as you have been to Lexie, and all three of your children will be great siblings!

Beautiful post--love it (even though I hate the news)!

yh said...
This comment has been removed by a blog administrator.