Attention to Detail

So I signed up for this babycenter thing online when I found out was pregnant....you know one of those things that tells you what's happening during your 15th week, 16th week, 17th week of pregnancy...and on and on....you know the one you check religiously because it's your first pregnancy and you are just so excited and need to know every little detail that is going on with you and your baby...Yeah...that one. Well after Neesee was born and after her diagnosis and all the hurt and grief from it as well...the updates kept coming.....
They kept coming and well.... telling me what my child was SUPPOSED to be doing...yup. I should have cancelled it but instead I just stopped checking this one email that I would get weekly....
Well the other day I decided to take a peek at it and it said your 22 month old and what she is doing....it said now that your child is more mobile....instead of taking her for a walk in the stroller...take her around the block by her hand...(well Neesee doesn't walk) so that was a hit in the stomach...and then I read on it said "your toddler is paying a lot of attention to detail lately and when you take her for a walk around the block, don't be surprised if she stops to stare at rocks or pick up leaves and just look at them closely...that she will be paying attention to detail....so I quickly thought "ok whatever" and closed it out only to feel a little bit of sadness for what "she's not doing". I've gotten through a lot of this feeling and don't feel sad very often anymore because I tend not to pay attention and just go with the flow...I have learned that we go at our own pace, while the rest of the world is in a hurry...But when it's staring you right in the face in black and white...it hard not to notice...of course it was my fault for reading it...but that's beyond the point.
So this morning I'm getting laundry done, dusting, catching up on housework...when I hear Neesee playing with something.....so I look over and guess what has this lil girls attention???!!! The damn little door stopper at the bottom of the wall behind the door!!! What the heck!!?? Talk about attention to detail!!!! There she goes impressing me again....I'm just a proud mama!!!

Acceptance

Would it hurt your feelings if I said that life was gettin easier?? That life is so freakin great that I don't even believe it!!!! They say that to mourn a loss you must go through the phases: Numbness, Denial and Isolation, Anger, Depression, and Acceptance. My hubby & I did exactly that...not neccessarily in that order or even at the same pace but we eventually got to acceptance. Funny thing is I know there will be times when we will go through exactly that same process for other things in Neesee's life. For example like when other people's kids are driving...or when the other mom's girls are dating...I'm trying not to future trip here but I know those are things that I will have to mourn and think about in the future......But for now for her initial diagnosis we have arrived at ACCEPTANCE. Yaaaayy!!! I have really seen the light...the positive side of everything. I have seen that it gets better...maybe not before it gets worse but it does get better. Life goes on and Life is freakin fantastic. I love my lil girl and all the energy and life that she brings into our lives. She is the most fabulous lil girl with a great sense of humor and the cutest faces ever! She brings so much happiness to my life I could burst!!Literally!
AHHHHH Life is GREAT! I feel whole again only this time with more umph! I never thought I would say this but I love having a child with special needs...I get a lil wierd when people look at me with sadness when I tell them about Neesee and all the "things" we have to work hard for...but in reality...I feel sad for them...I feel like they are missing out...NOT ME. Not us. I enjoy everything I get to do with Neesee. Of course I still feel sad at times about certain things but the awesome thing is that I can always see the good that comes out of every experience...some people may say that I got to where to this stage fast but I guess I had to. I'm the kinda person who would have died if I stayed in the dark any longer...so I had to arrive and I had to arrive fast. I don't like to feel sorry for myself...I like to make decisions and I did. I made to decision to live life and to live it as it was handed to me...And I'm happy to say I'm doing a pretty damn good job! I see it in all the things that Neesee does now. Neesee's not a "vegetable" and I don't see her as the child "who may never do something" I see her as the child that can do anything...just as everyone else believes their child can be anything...I to believe. I mean why not? Why do I have to demand less of my child just because she was born different. Nah...that's not me...so saying that let's talk about all the new things Neesee's doing...Can you believe that Neesee has 11 signs total now. My favorite one is "hat". Her version is two hands palms up as to say "what?" and taps them to her head...it is the cutest thing!!! She say's dada...daddy...da...ba...yeah... and "daaww" for dog...oh yeah and she says "yuck" too. how funny is that? She can honestly answer yes and no questions with a nod of her head and appropriately too.....also in addition of being able to blow kisses with her lips...she can now use her hand to blow a kiss your way...if you ask her to do a "mad face" she will give you one!!!! It's the greatest...Neesee's in the stage where you can get her to do a lot of things...so we're having a blast right now. Neesee is able to tell you where her head is as well...but if you just ask her "what's that?" well everything is a "daaawww" (dog) right now. Neesee is sittin unassisted now, crawling all over the place and even getting into tall kneeling. She will crawl to furniture and lift herself into tall kneeling to reach whatever she wants to get or atleast try to. Her reflux is a lil on the up and down right now...depends on the day I guess. That's the one thing I can definitely do without! Neesee if off oxygen in the day, still on it at night. And sleep is no problem for my lil munchkin...she sleeps anywhere from 10-12 hours a night with one nap in the day...This part is truly a blessing!!! Well speakin of sleep it's gettin late and I better get to sleep myself. Nite Nite.

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Finding Nemo & George Lopez

Bet you're wondering what they got in common, Huh? Well let's just say my babygirl likes watching them both. Well one more so for the song that comes out in the beginning...that being George Lopez...she absolutely loves the lowrider song...it is so funny!! As soon as it starts playing she starts kicking her feet and making silly noises letting us know that she just loves it!!It it so hilarious to watch...she already has a knack for music....as for Nemo....The other day Neesee was sitting up on her benches for a whole hour without falling while watching Nemo!!! That is sooo huge for us because Neesee hates to sit unassisted...well I should say more like can't sit unassisted due to her weak muscle tone. Guess that is unless she has some motivation or something to keep her preoccupied! What a booger! So here Neesee was sitting on her benches UNASSISTED and then came my other surprise...for those of you have watched Nemo a hundred times like me and Neesee remember the part where the mask falls down the trench and then Dory and Marlin see a lil light....well on that part I was watching Neesee follow the light back n forth and up and down...and then...the MONSTER!!! AGGHHH...the big fish then starts chasing Marlin all around while Dory is trying to read what the mask says...and Neesee is cracking up...making all these lil noises like shes rootin for Marlin!! Oh my goodness my daughter is soooo smart! She knew exactly what was going on and was responding accordingly...And for a mother of a child with Cri-du-chat...well that was certainly a blessing...my daughter never fails to amaze me..I know she is in there but it's little things like this that make it all a lil more Amazing......

Neesee's first Vacation: Disneyland!!!

What a trooper!! That's really all I can say about our recent trip. Never in a million years would I have expected Neesee to do so well with a long car drive or with so much stimulation. This would have never and I mean NEVER have even thought of being possible 6 months ago. I am so glad! We all got to get away from the hectic life style and enjoy ourselves. Neesee really liked Disneyland but what child doesn't? Front of the line and no waiting really...all thanks to Neesee! Guess that's a perk of a child with a disability...it took some of the pain of lugging around her oxygen tanks. Thank you Disney! Neesee not only handled the 7 hour drive to the disney park but also...the drive to my uncles, which Joel and I completely underestimated. Geez...We were even able to visit our friends. So Neesee got to meet so many new people and family she had not met yet and enjoyed the rides at Disneyland...all in one trip! Way to go Neesee...I think she handled the trip better than us...I was soooooo pooped! Some of the rides that all of us enjoyed were the snow white ride, the finding nemo ride, the pinnocchio ride, the haunted mansion, and even pirates of the carribbean!! Neesee was sooo cute on them all! We had so much fun! There's no hiding from the world for us no more! Look out world! Here we come disability and all! Oh yeah and the greatest part...no one asked "what's wrong with her" just "she's cute" and "aw..look at the baby!" My kinda vacation!

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.....

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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???!!!