When having a special needs child doesn’t really feel like a blessing at all…

If I told you that every day I wake up, I think “Wow, my child is such a blessing” I’d also tell you that I’m a complete LIAR.

Full of Shit, bullshit liar.

Why??

Well, because that is NOT how it feels most days to be called a special needs mom.

Most days as a special needs parent I feel overworked, it feels “unfair” having been dealt this card, & I’m not even sure if I’m gonna survive the day!!!

But I suck it up & do it.

From the tragic hair pulling (being pulled by my child I might add, not me), to the goose bump, nails on a chalk board pinching blows I deal with on the daily

I do it. & I do it well.

This Journey can be a hard pill to swallow:

After all it’s not like I rubbed on a genie lamp & said “oh please your majesty, please! send me the special needs child of my dreams!”

Ummm no!

It’s just the way it is & even after 8 years my family & I are still learning to cope with it all.

Now before I hurt anyone’s feelings here or get people’s socks in a bunch, let me just say I can & AM only speaking from my own experience.

It’s a quite honest one & if anyone cares to challenge me to say this journey is a tray of cupcakes I might have to give them the “yeah, sure” look.

There’s tons of stuff I’ve learned & I do feel like my child is a miracle, however the reason for this post is to shed light on the fact that us special needs parents work damn hard & we have honest feelings.
Also having those feeling & moments is perfectly normal & NO ONE should feel shame if they feel as I do.

Even typical parents don’t like their kids every sec of every day. (I’m a typical mom too) so I know.

[INSERT BIG SIGH]

So Today I’m just throwing it out there. It was a tough one. It was a battle to brush the teeth, it was a battle to communicate with my non-verbal daughter, & I’m feeling sorry for us both today.

Guess tomorrow I’ll do better. It’s all I can do right?

Huggs to everyone struggling today. Sending you all the love & sunshine in the world

Sincerely,

A truly honest SN mom

A Gift to our Daughter

You wouldn't know it from this picture but Our daughter was born with a rare condition called Cri-du-Chat. The terms I hear most are developmently delayed & disabled all words which devastate me on the inside & her on the outside. Anyone could easily see it affects many aspects of her life. Some of those are her muscle tone, fine motor (like holding a pen), & her ability to concentrate. It's those simple things most of us never think about. NeeSee is seven years old & walks only about 20-30 steps at a time before she gets tired, she will only hold a pen for about 2 seconds before throwing it, so writing is a hard task for her; let alone other things that are required in first grade. She will flip books like they are a toy & its hard for her to play with toys appropriately. Eating is also task & very messy as she is learning to feed herself. Her foods are puréed or softened at every meal to ensure she doesn't choke. & that is barely scraping the bottom of the cake pan to get a peek into her world. 

As her mom it's my duty to look for ways to help improve this world & help her reach her fullest potential. I've had horse therapy on my mind for awhile as I've researched it can promote physical & social growth. It's been one of my dreams for her & I'm elated to report that she enjoyed her first lesson. I also have to take a moment & be grateful for how far we've come. When we first started out in the therapies arena, one of our goals was for NeeSee to be able to hold her head up. So you can see she's doing an amazing job at progressing, even if it is slowly. I know it's not easy for her but it looks like this one will be one she enjoys! 

In the end we're hoping Dynamite will help NeeSee with her muscle tone & it will promote growth in other areas as well. It's one of the therapies including OT & Speech that we incorporated into her weekly program.

It's an absolute joy to give this extra gift!

5 qualities FIT people have that others THINK they don't have

1. Discipline. Every day. It's a sacrifice to not reach for the bad food, the comforting foods which make us feel better but ultimately do not serve us. It takes discipline to exercise on a regular basis. And people will make excuses to not do it. They'll point fingers & say fit people don't like themselves and we ALWAYS have to exercise..WRONG! Fit people choose & say "I GET" to exercise. I WANT to live longer, I WANT to feel sexy, I love myself & I admire my selfconfidence therefore I am disciplined.
Which leads me to the next quality...

2. They exude SELFCONFIDENCE. They know who they are & they stand for something. They scream I'M confident & I know it!! Many fit people have not always been fit even if they started out that way. Even in my own life I wasn't always the fit girl. I was once the skinny even scrawny girl who could eat everything & not get fat. Then I became the overweight mother with babyfat that wouldn't go away bc of my bad eating habits. So I couldn't continue the same bc things had changed. I couldn't eat everything anymore and not see the repercussions. Bummer. But really it was my blessing. At 50lbs overweight 170 being my highest weight at 5'2 I had to change my habits or choose to stay where I was. This was my turning point. It didn't come easy & I had to find something that worked. Ultimately after putting myself thru a lot of crazy "dieting, starving methods, and gidgets & gadgets" I learned that nutrition & exercise are the only things that work long term. What you put in you get out. Go stand up for yourself now. I've had the privilege of doing it twice.The self confidence from finally achieving fitness will stick with you everyday & it's something no one can take away. EVER. I promise.

3. They don't make excuses. Excuses are death. They allow you to reason yourself out of things. They give you a cop out instead of a way out. It's your body & brains way to tell your spirit that it need not pass this way. It makes many attempts to tell you "you cannot, don't dare, it's hurts, this isn't gonna feel good" It makes sense we only want what feels good. But let me tell you a secret your spirit wants to free you, the ultimate greatest feeling is WHAT you get PAST the hurt, beyond the sacrifice. That's what you REALLY want. Use this concept in all your goals & man o man! Push past today!

4. Patience. Patience is a virtue. Change takes time. This is by far MY weak spot. I want results now, today. Not a year or even an hour from now but NOW! But it still needs to be cultivated despite this fact. I'm happy WHILE I'm waiting for results to show up, I take it one day at a time, a moment at a time. Success is a whole bunch of 24 hours put together. Stop being impatient & just get started. Do what you need to do just for today...get thru that & then worry about tomorrow tomorrow. Put a whole bunch of 24 hrs like this behind you & I promise change will happen. Stay faithful to yourself & yes! you deserve the time you invest in yourself. Start today.

5. They dont care what people say.Yes they have feelings but it doesn't discourage them or stop them...EVER! They hear it, they take it in, & then they use it for fuel or they dispose it. Just like I limit my bad foods, I also limit the trash I let into my head. I say limit bc we cannot completely control everything bad we see or hear, it's everywhere unfortunately & people aren't perfect no matter who they are. People say things without thinking sometimes...& I'm no exception. But learn to move on. Learn to stand strong in your being. What people say, do, is not always about you, don't take things personal, learn to move on. The more you don't care, the more you learn forgiveness, the more you just keep on moving on & putting one step in front of other despite what going on around you. & The happier you'll be. Remember: hear it, take it in then use it as fuel or dispose it! Hope you give a shit a lot less today...I plan to.

With all this said. Fit people have nothing in them any different than you. Successful people have nothing more in themselves than you have the privilege of having in yourself. It's already inside you.You just need to see it & you need to begin to cultivate these traits in yourself. Get around & stay around people who want what you have, let them build you up, let yourself be inspired, don't be afraid of whats already inside you. You got it. You got this. Hope you use this in all areas of your life today! Thank you for taking time to read this! Love you guys & keep on pushing!

XoXo
Natalia

NeeSee hits another milestone

 I love getting notes like this from NeeSee's school! We are extremely blessed at how well she is doing. For the longest time she had no interest in feeding herself. She would just throw her food, mash it with her hands and throw the food. Now....she still is doing this but a lot-lot less. She now is using a utensil and bringing it to her mouth & even showing several attempts at scooping and bringing it to her mouth. I'm very very excited we are on our way to more independance for NeeSee. First the walking and now this! It is so great to know all the schools, the therapists, ours, and NeeSee's very hard work is paying off. It's all about the lil things with our family. Less messes & more walking is a BIG DEAL. The other day we saw Neesee walking down the hall holding a toy in her hand. Walking with something in her hand????!!! Wow!!! Dad & I were practically on the edge of our seats smiling & laughing bc it was sooooo cool!!! She is becoming a master walker LOL! I love to see her grow & learn. My life is dedicated to seeing her do the best that she can & this is just another milestone for us. It might not seem like a whole lot to some people. I mean when I see Jordan our (typical....for lack of a better word) son doing all these things with ease it gives me great joy & it is also just as big as a deal for us. Forgranted is something we rarely do about anything in this household. Anyways just wanted to drop a quick update on NeeSee since I havent given one in a while.... Hope your day is bright!!!!!

Lots of love,

Natalia & family.

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!!!!!!!!