Life in the world of MRDD

Okay, so this could possibly be the most challenging of the blogs that I write about, simply because this is my daughter, and I would never want to do anything that puts her in a place or category that makes her look different or makes anyone that reads my blogs think less of her. I love my daughter with all that is in me, and I would defend her to the ends of the earth. Don’t mess with her, don’t hurt her, don’t belittle her, and we will be fine. If you do, Mama’s claws will come out in full force.

The reason for my blog about my daughter is that I know that there are other mothers, fathers, sisters, brothers or cousins out there that live with family members that are MRDD,(Mentally Retarded, Developmentally Disabled) and to be honest there are NO outlets, and no communication avenues that I have found! I have lived with Nikki for two years now, and I am a fairly new mom who has looked the internet over with NO results.

MRDD has such a wide scope that it is hard to describe, it is hard to pin down what it encompasses. But as far as this blog, I will give it my best shot as to what our world is.

Our daughter was born with a heart defect, which (in simple terms) left her gasping for air, deprived of it when she was born and in turn caused brain damage. She was born in a very small hospital in Ohio and was quickly flown to a larger hospital for critical care. She then was subjected to numerous surgeries and care during her youth. Multiple times Nikki was given the diagnosis that she would not make it through the next surgery and her parents should prepare for the worst. EVERY TIME, Nikki pulled through, she fought, she survived and essentially she was left with half a heart and a pacemaker and she is a thriving, energetic and exceptionally happy 30 year old woman/girl.

Nikki’s dad calls her “A party waiting to happen”, and that pretty much sums it up. Her favorite band is Hanson and she loves Billy Dean, whom she has seen both in concert which she pretty much listens to on a daily basis. She holds nightly concerts in her bedroom with the company of our chihuahua/farm dog, Roku(whom by the way thinks she is a St.Bernard). But to be fair, she loves all music and loves to sing to the top of her lungs and loves to dance. Which is a great thing, which challenges her to a name that band or singer game and I put my money on her. That in turn can also be a bit of a bother… if perhaps you want to watch or listen to something else then you have to compete. So we can go from Hanson to Dolly Parton to Rob Zombie in a matter of minutes at any given time of the day.

Now, on the softer, sweeter side, she loves her doll babies, her treasures (collecting anything that any one gives her), coloring, certain TV shows and she loves to help out around the house. She is the best at folding laundry, dusting, washing dishes and keeping up on chores. It makes her happy and fills her with self worth and helps me out tremendously!!

Nikki is very functional and is VERY smart when it comes to certain things… and don’t think that you can get something over on her, because she remembers EVERYTHING!  She can stick up for herself and has all the attitude to show for it. But Nikki can not read and can not tell time and if you think about those two things, just begin to try to imagine what your world would be.  She has a desire to want to know but only functions with the capacity on a cognitive level of a four year old. Do you know what time it is when the sun goes down? Do you know what time it is when the sun comes up? Well most of us would say yes, but when the time changes and when the seasons change, it becomes a little more difficult. Do you know what the word yield means? Do you know when you enter a building and it says “you are here” how to maneuver your way through out?  Nikki’s world is small in someways, there are very few people who “understand or get her” and so therefore she is isolated even more.  Family and friends love her but are sometimes not sure how to handle certain situations, thus become afraid and therefore tend to neglect because it is “uncomfortable”.  There are the tried and true, who will stand by her and be there for her no matter what comes, but those few are a rarity.

Nikki’s mother died over 2 years ago… Who gets you more than your mom?  In comes me. Ignorant, strong willed and totally in love with her father. She is in some ways grateful for me, and tells me so, but in other ways threatened that I am taking the only ONE person left who truly gets her, HER DADDY!!! Can you imagine? Now, I am talking about one of the most loving, caring, appreciative people you will ever meet. But even when friends and family leave, at the same time her mommy leaves, she still holds on to the the things that she knows are right.

Sometimes Nikki calls me Mom, and sometimes she call me Fay. I can usually tell when there is something that maybe she is mad or upset at me about. But the other day, instead of saying Mom (her biological mother), she called her Patty. That is a BIG deal. That is something to make your heart melt. I encourage her to talk about her mother to others and feel free anytime that she wants to express how she feels. She is free to do so but then, when she does talk about her, she always looks at me like she is in trouble. If she say’s her mothers name, it’s like I have beaten her for it.

Now that is just the tip of the ice berg of this blog and my purpose of writing about this, is, as a step mother, and living with a daughter that will forever, in her mind, be a little girl. Sometimes a grown up, some times a teen, that can be challenging and it can be hard and it can be difficult. There is little to no information or shoulders to lean on, nor friends to ask for advise or an understanding ear. I want this blog to be one!!! I want to hear from others that have like or similar situations to be able to express their feelings, emotions and issues that happen on a daily basis.

The world of MRDD is so vast because there as so many different levels and situations and scenario’s that are no two families that will ever be the same, but if we talk about it more and open up to each other and share experiences, good and bad, we can help each other. I need it sometimes and I am sure that there are others like me that do as well.

So I will be posting more as time goes on. The good, the bad and the ugly. Its just like any other “thing”. If we hide and don’t talk about it, the easier it becomes to keep it as something we shouldn’t talk about. But I want the world to know I am proud to be a mother and a part of this wonderfully made person’s life. That I have nothing to hide, EVER!!!

Please… Let me hear your voice!!

Mom, Fay, Stepmom

 

 

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