Jenessa, the PT and walking!

So, Jenessa's physical theropist came today and worked with her. She still isn't walking, but we are getting closer. And Amy (the pt) watched her crawle through her tunnel and then had her kinda jump onto the top of it and really got her going. She then had her pull herself up to the couch and watched her cruise and then had her take one hand off to play with her ball, but the best part was when Amy tried to get Jenessa to stand, when she didn't want too. It was way too funny!! I tried not to laugh. They then moved over to the car and Jenessa stood at that, but they were playing with a toy that Jenessa loves to push to make it play the alphabet... and Jenessa wanted to sit. This was again a struggle, Amy ended up playing tug of war with her!! Oh it was great!! So Hilarious!! Amy finally won! Well sort of, Jenessa finally gave up on getting her toy down and she walked around her car then and became preoccupied with it. Adorable!! Then we did the stairs and by the end of all of it, my daughter was absolutely exhausted!! But I felt it went good! We now have some things to work on and hopefully by the time we see her again, Jenessa is walking!

Bruno Mars - Just the Way You Are (Cover by MattyBRaps ft. Tyler Ward)

Deedah viewing

Tonight we had a wonderful viewing of Deedah and Me... Which is a documentary from a 8 year old girls perspective of having a younger brother with Down Syndrome (Up Syndrome if you ask him). I watched it with our super moms group and it was very inspiring! I loved getting to talk with some wonderful moms! And the documentary was so sweet and just so pure and innocent. Some of us mom's thought that maybe we should have our children's classes watch it. I think this is a good idea. Society needs to be educated about Down Syndrome and what better way than through the eyes of a child!
Then as I was driving home I heard this song "Just the way you are" By Bruno Mars and it just hit me hard. Because I love my little angel just the way she is and I would never want to change her! I hope that with everything that I have written on here that I have never portrayed that I want her to be a "typical" child. Do I want Jenessa to have everything and be able to achieve everything in the world? Absolutely yes, but I would never change my perfect little girl for anything! So when I got home I found the video before this blog and it just melted my heart!! Hope you all enjoy it too!!

Nightmares

So this morning I woke with an abrubtness due to my dream. I had a dream that some of my "friends" didn't like my openess about Jenessa having down syndrome and these "friends" started to avoid me. The hardest part was waking up to realize that it was both a nightmare in my dream and in real life...
I have pissed of some people with comments about not understanding certain laws, or why certain laws are in place and I have been told that not everyone wants the whole world to know their child has down syndrome. And the hardest part is, I may let everyone know my child has down syndrome, but it is because they are going to figure it out eventually. I mean, seriously... looking at my daughter you can tell. There is no secret.
I am sure I have even pissed people off with my determination to get my daughter services and how much of a b**** I kinda was, but it got her the services she was supposed to be having. And I am not going to even defend this because if you take a step back you would do the same.
I guess to put it plain and simply, it hurts to wake up from a nightmare to only realize it is reality! Ya know, I didn't want a child with down syndrome... I was not over joyed when they told me the news, but as a parent you love you child, no matter what happens! And hell ya, it is hard to watch her get older and see her traits come out more and more, but please don't judge me for it. Don't tell me that what I am doing isn't right because unless you are walking this path with my, you have no clue. You have no right to tell me that telling the whole world about my daughter isn't right. Or that fighting for her services isn't really needed because she is doing so well.
I guess all I can say is, don't judge other people until you have walked a day in their shoes. As Jesus says, let the perfect be the one to cast the first stone. And I am pretty sure, me included, none of us are perfect.

special need, disability or whatever you wanna call it!!

So, as a parent of a daughter with "Special needs" or a "disability", or whatever the hell you wanna call it, I often wonder what is all really means... I mean we can't seriously think that she really has such special needs, if you look at her she may look different, but she isn't really all that different from her cousin, is she? To me special needs means we have to totally rearrange our life because of her and yeah, when looking to move we had to make sure certain services would be provided, but that isn't much. We also had to decide if we wanted to keep her specialist doctors, but she only has two, so that isn't bad. What are her "special needs?" Does she have any?
One special need she has... she needs to look too damn adorable for her own good,
Another... She just has to have pancakes or waffles in the morning!!
Yet another... She wants the trendiest clothes in the world, to help with need one!

Yeah, not thinking that these needs are all that special, but hey they are what make her tick!!

As I look at her I don't see a child with a disability... I see my daughter who is going to need help with maybe more things than some children and she might have to go to some doctors that her friends don't, but she will look so adorable in the process that who cares!! I also see the little girl that can melt mine and her daddy's hearts! She has opened my eyes to a totally new world that before having her I was aware of, but never wanted much to do with. She has taught me how to love deeper and with more of my heart than I ever thought possible!!

She has also taught me that there are some ignorant people out there. The people that at the airport looked at her as she was falling asleep and then looked back at me with a look of terror as they realized that she is "different"! Wow, that is a look I will never forget! Or the sympathetic looks I get from people who know me, I just want to shout, "She got down syndrome, not the black plaque!! I promise it is ok!!" She has opened my eyes and heart and for that I can never repay her!

I know why God blessed me with my little angel and I am so grateful!! So, is it hard to have a child with a "disability"? Yes, but I feel it is even harder to be without her! She is my everything!! And she has made my life more blessed than I could have even imagined!! I always wanted to make a difference and now I get to because I had her!