Breakdown

Sometimes I wonder when the grieving process will end. When will it stop hurting, when will I feel normal...."..And then I realize that it's stuck to me for the rest of my life. I tell myself "you should be OVER it" by now but I don't think you truly get OVER something like this. The LOSS of a child is extremely dramatic. & yes NeeSee is still with us daily. So for that reason most people don't get it. But it's more than that. It's me missing playing with barbies, her asking me mom please buy me this. Mommy I want that. What I wouldn't give for her to throw a tantrum bc I wouldn't buy her something. Ether way.... It still is not what we expected. Recently I had a conversation with my aunt. She had lost both her sons within a yrs time. At the time her sons were my bestest friends. They were my cousins Lil Randy " Tito" and Isaias. My aunt shared with me her loss & it's effects. Even though I couldnt relate exactly, I could relate. She had lost children & I had lost a child. There's NO comfort for that. Period. The best we can do is talk to other parents who been thru the same thing, enlist the support of our spouses, & provide support for others & just live & move forward the best we can.

I really miss my cousins bc I could really use their advice sometimes, I miss the daughter I was supposed to have bc I love to play barbies with her, but most of all I miss the vibrant me who used to be before I met with all the heartache. But you know what I really think all of this is gonna make me better somehow.

To my Tia,

No matter how hard it gets or how much you miss them. I know we will see them again. I hope you can find some peace somehow somewhere. Love you to pieces.

XoXo

Sometimes we START OVER

Having a special needs child is not the easiest thing. Nor is having a relationship with that specials needs kid, nor is a relationship with your significant other, a relationship with a friend, friends, a relationship with a career, a relationship with housecleaning, a relationship without worry, or even a relationship with sleep.

Sometimes keeping it together for ME anyway means falling apart & then starting ALL OVER. I am human & I accept that. There is only so much lack of sleep I can get, only so much of me I can give before I begin to give up on ME. I'm beginning to understand this process because it is a process of GRIEVING. My grieving usually happens behinds closed doors with my family. I hate to put so much burden on my husband. He truly is the greatest man. He leads this family despite how much control he thinks or I think I have bc it is my weak moments that he steps it up. I want him to know I'm so grateful & I couldn't be WHO I am without him.

But back to the starting over part. If you're starting over today know that we are starting over together. I'm starting over accepting the fact that my lil girl needs constant care & that I'm her BEST CHANCE. But really we are all our BEST CHANCE. If you have to start over today with your peace, with your faith, with your family, with the things that matter. Know that it's ok.

BEGIN AGAIN. It's what I do on the daily.

WE can start over together. You ready? Hit that restart button & lets do this! Love you ALL to pieces.

XoXO

Try a zillion times

Speech therapy went AWESOME with Neesee again!! It's such a great feeling to see her show off all the work school & I put into her. This lil girl works HARD!!!! She's got a lot more guts than most ADULTS I know. Totally fearless & persistent. We will work on saying "giraffe" a million times if that's what it takes for her to learn. We will practice walking 10 zillion times if that's what it means that she will one day walk on her own. A lot of u give up way too soon in the game of life!! Most of u don't even start playing bc it scares u to pieces u might lose. Who cares!!!!! Go scratch your knees up for goodness sake. There's no winning or losing there's only NOT doing. If falling & scratching ur knees up is what it's gonna take for u to learn to "walk" then do it!!!!!! If doing some therapies 3 xs a week, working with mom, school, doctors, hospital visit after hospital visit means ull get "better" then do it!!!! You don't hear Neesee screaming & complaining she's got it worse than you. She just keeps working hard. & the best thing is she will never give a damn what any of u think, say, or do. Her only concern is moving forward. That to me is amazing right there!!! Cheers to Neesee & everyone who doesn't give up when the tuff gets harder!!!! Thank you for teaching mama so much baby!! I appreciate u!!!!!!!! 

Cherries & pie

I really wish I could have started out my writing again on a more positive note but ya know if its one thing ive gained in life it's that everything is not all cherries & pie sometimes. Sometimes u get pie & sometimes u get crud. It's all part of the process. & the true test is how we handle these types of situations. If u've been on my fb lately you have prolly seen that we are goin thru a situation.  Neesee has been admitted to the hospital. It has been a really long time since we've had one of these too. (I'm very proud to say)  At least an overnight stay anyway....a couple yrs :) which in the Criduchat world is ages!!! Yay for Neesee!!!!! But in the meantime here we are.... Confined to the four white walls, tangled mess of endless cords & dinging bells. :/

It's night two, day two & things have gotten worse, not better. Again no cherries & no pie for us this morning. I guess whatever this is is just running its course. I've immersed myself in prayer & positive thinking. I'm calling favor over my baby & my family to pull thru this. It's amazing how things have changed since the last time we've been here. I remember my hubby & I going at each others throats out of the loss & grief of watching our baby go thru such a horrible experience. I remember just loads of anger, questions of why, & a very very unhappy girl. That unhappy girl was me.

Today I'm thankful this experience is a lil different. Bc our Neesee has brought us much growth bc my hubby & I have brought much growth...we are now working as a team, WE are the cherries & pie. In a situation where things look gloom, we have to be the light, the sweetness, the cherry, the pie. What I mean by this is that we by no means are happy about this obviously. The situation is here & it's gonna run its course. whether we agee or not. period. We can either be mad, bitter, angry about it sure. That's easy. We can yell at one another, walk around complaining etc. but why not handle it different? Why not get thru it with enthusiasm, love, caring, prayer, and humor?

We all have our own situations in life. My experience may be similar or different from yours. Nothing is equal in all of us...we don't have the same opportunity or the same background, all intelligence isn't equal but one thing that is constant in all of us is choice. Free will. Whatever it is that your going thru today can mean something different than the meaning u've been attaching to it. You can choose to be the cherries, the pie. Quit looking for things to change & be that change.

As I sit here in the hospital it may not be MY ideal situation. But maybe, just maybe it may be just what u needed today. Maybe it's YOUR ideal situation: For us to be sitting here in this hospital speaking to u today.

Hope u all have a great weekend, go out & make positive choices, use my experience to your benefit. Cause things may not be ideal today but at least ur not spending the night at the hospital.....;)

Cheers to the freakin weekend!!!!!!

SHE'S MY HERO

So I just finished reading the 5p- newletter and I'm such a crybaby...and the only thing I can think of is that sometimes life just isn't fair...If I could take all of our children's struggles and make them my own I would....I would walk with a walker for the rest of my life if it meant your child didn't have to, I would never speak again if it meant our children could....I would visit doctor after doctor and have them prick and prod me...as long as they weren't doing it to my Neesee....I would bang my own head in frustration instead as long as your child would be heard...I would take my food through a tube as long as the next child could eat...I wish I could do anything and everything....if only GOD would let me....I love our children more than words can say and my heart goes out to all of them...and I have realized something today....I am NOT my daughter's hero but SHE is MINE.... I love you Neesee.....

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.