Without Neesee

Last night as I laid in bed I began to think about life before Neesee. How did I ever manage without her??? I couldn't even imagine that ever again. I would fall to pieces without her little piece of the puzzle. She has taught me too much... patience... longing... gratefulness.... selflessness... selFISHness...unconditional love...just to name a few. Without her I would wake up in the morning not knowing what to do with myself today. Although having a child with special needs is very hard work...it is so important for me to do this. I NEED to do this! It took me a lil while for me get this and somedays I forget because I get lost but this experience always takes me back to the same place. I need Neesee. I need that lil girl just as much as she needs me. Some days if not more. I've alway been extremely independent. I had to learn that from a very young age...from things that I was put through...long story short my childhood was pretty rough, sometimes non-existant. I was taught that a lot of people are bad and I only had a handful of people I could trust. And sometimes I couldn't trust anyone at all. I became so independent that I didn't need anyone anymore...I didn't need anyone to hold me...anyone to take care of me...anyone to guide me...anyone to love me. I HATED everyone. Then came my husband and he taught me how to love. What a wonderful man..then came Neesee. Wow....what a beautiful lil girl. A blessing. Then her diagnosis...BANG! so again. I hated everyone...I blamed everyone...And for months I hid. but slowly I could hear Neesee's voice pulling me out. Days past, months past, and then came a year...now more days pass...

Recently I can hear her clearly... I hear her say "Mommy I love you"...."Look Mommy this is how you trust...see how I trust you"..."This is how you love unconditionally, see how you still love me even though I cannot walk" and "This is how you need others..it's okay to ask for help sometimes...I need YOU everyday..."I know I should be able to do these things but I cannot so I need you to do them for me, please hand me my toy" and "Mommy I know you are crying but I am crying too bc well my frustrations are more than you could ever understand...so please help me sit up"

It's those things that she says to me that keeps me going. That allows me to see that although I have my bad days I still pull through and we keep on going...stronger than the day before. That although life hasn't given us what we expected...we still have eachother. And most importantly that I need to quit blaming people, God, and myself. It's nobody's fault and it isn't even a fault.

Without Neesee I would not be who I am today.

Without Neesee the world around me would not look as good as it does today.

Without Neesee I'd see things exactly as other people see them.

Without Neesee I would be lost.

Without Neesee I really wouldn't be living.

And after laying there a lil bit longer...I couldn't help but to wander to her room...cover her with the covers...kiss her goodnight...tell her I love her...say "thank you"..........

bc without Neesee.....

.........................

AHHHHHH!!!!

To start: this week has been a chaotic week for me. I've been feeling a lil down and I'm stuck in one of those "why me" moments and I hate it. It really effs me up inside. I feel all anxious and worried all the time....like the walls are caving in on me and no one cares. Things really get to me some days. Neesee needs so much attention and yes I know babies need lots of attention but Neesee needs more....I'm the momma that can't watch her child crawl n play like the other children her age...instead we're doing therapy....I get to watch her get frustrated from being in my arms or on the floor but can't get to her toys on her own...When she won't stop crying and then I start crying saying "please tell me what's wrong so I can help you." When I know that she is frustrated because her body won't cooperate with her. When I work so hard and "other mommas" around me don't have to and get the rewards that I don't....like sitting, crawling, EATING, walking....the simple things.... Uggh..I can't stand those moms...the ones that don't have to do crap..

All the effen laundry I have to do bc everything has puke on it...all the time!....catching puke in bowls, catching puke in the seventy-two burb rags we own, constantly cleaning my daughter, washing her hair cause she puked in it, the ten outfits a day she goes through, her screaming from me cleaning her bc she hates for her face to be touched, cleaning the car seat numerous times, and just about everything else Neesee touches...oh where will it end?

The numerous times I have to put the oxygen back on Neesee's face bc she has ripped it off her face....the screaming again

I am confident that Neesee will crawl and walk and one day run but for now it hurts...It hurts really bad. To watch my child struggle daily. I just want us to be normal sometimes. I know GOD has his reasons and my child is a blessing and I wouldn't change her for the world...I love my lil Neesee....but I hate to see her struggle...I hate for my husband and I to struggle along with her....sometimes it seems like too much...

And after it's all done...this downer post I have to feel bad about bc well...I'm the momma that has it all together right

You hear that? It's me screaming.....

How I stay organized

So I keep this colored coordinated calendar for all my appts throughout the month and since the month is almost ending I thought that I might share just what my past month has looked like...May I add that it wasn't really that bad. Just looking at it makes me overwhelmed. I guess I shouldn't say "my" appts bc only about 1% of those appts are really mine...the rest are Neesee's. Ugghhh...so it's time to wipe it clean (it's a dry erase board) and start with May...sigh....



Another month....and I keep hoping that this month won't look like last's months. PT, OT, DRs appts, well checks, sick appts, hospital stays (Please No)....reminders...phone calls....more phone calls...Speech therapy....another procedure...someone new coming to my home....



I mean don't get me wrong...I love that Neesee gets her therapies and I am close friends with everyone who sees her but sometimes a woman justs need a day off! I mean how much can one person really do????Apparently a lot.....and it's NEVER ENOUGH!!!



sigh



Ahhh my calendar...just a lil reminder of our crazy, chaotic life



And in case you're wondering why this silly woman has a pic of her calendar on her computer...well lets just say it's easier to take a pic of it instead of write everything down at the end of the month so I can refer back to it....hey it's my world I can do what I want...

DaDa DaDa DaDa!

It's pretty clear if you come to my house that Neesee's got "DaDa" down pretty well... Go Neesee!!! However I can't help to be a lil jealous! Damn daddy! Of course it's all my fault cause it's all Neesee and I ever talk about when Joel's at work. But everything is "dada", dada this and dada that....da da da...the cutest thing i've ever heard. I'm lovin it!

Neesee just started speech therapy about 3 weeks ago...So of course the famous momma has to take ALL the credit up to now!!! Which I might add: I work so freakin hard that with that girl!! And not a moment wasted either. I ran out and got all my baby sign books and hit up the great sign with me website all the time and work with her daily...beside it's nice to talk to someone other than myself every now and again. jaja. It's really paid off! Neesee signs "eat" and "sleep" and she claps for "more". She patty cakes and even waves "bye" and "hi" appropriately. Momma's so proud of you Neesee-bear. The thing that she does with the "eat" sign, which was her first sign, is so hilarious. If I'm taking too long to get her "pa-pa" she hits herself with the "eat sign" and it gets harder and harder the longer I take...so ha-larious. It's like she's yelling at me in sign language!!!!!! I love that she can express herself to me in these ways at such an early age. It gives me lots of hope. And even the best part....I understand her! Yay us!!!
Another thing she can do is shake her head no. Very important...When she's done eating or doesn't like something she tasted she will shake her head side to side...even when daddy's tickling her and she's "all done" she'll shake her head no...I got her to do this by asking her lot's of questions all day long until she picked up the concept. It's amazing how much she picks up...never underestimate your children....they know and understand more than we're willing to give them credit for...special needs or not. I'm always picking her brain and finding new ways for us to communicate...I can't stress how important this is for us..

So for now I'll go along my merry way hearing "dada...da...da...dad...daddy...dada" until one day she will say mommy. It'll come...I know it...A year ago...I may not have been so hopeful that she would even talk. The pamplets they gave me at the hospital along with her diagnosis...said that speech is very difficult for them...ha! difficult! me and Neesee laugh at that...I know better...If we have come this far in a year imagine where well be years from now....the possibilities are endless...but today I know that it will come...And I owe it all to my baby girl who has taught me hope and faith...Life is good today. Thank you God!

hugs & kisses & happy day wishes
MartianMommy

Martian Mommy

A lil background...in case you're wondering where I got my name & title. Ever feel like you're from another planet?...another universe even?...that's my feeling most days. So when people ask me where I'm from. I say planet "nono". The one that's undiscovered, lost, and past pluto. No special meaning behind the name just something I came up with. So yup I walk around like a martian from another land, from different ideas, from far far away...cause this world I just don't understand. I swim with the butterflies, fly with the fishes, and try to walk on water. Yup I'm martian mommy.....

Welcome to my World

First of all I wanna say a special thanks to Tiff for introducing this site to me. I am so excited to get started...I've done blogging before and it's therapy for the soul! Really...But my main reason for starting this is to help other families who are struggling with the challenges of raising a child with disabilities...My daughter Neesee Amaya has cri-du-chat, an extremely rare syndrome, which has taught me so much about myself and life in general. It was hard at first and I'm not gonna lie...there are days where I feel I can't do this...but I know I can and I wanna let other parents know you can too. All that is needed is LOVE! And knowledge...that's where I come in. I hope that I can connect with other families who can help me along the way as well. Well welcome to my world...and like I said I am soooo excited!!! I hope I can just meet other parents as well afterall it's our Children's world and we're just in it right???!!!