To Delete or Not to Delete

For quite some time I have been contemplating deleting my little piece of the blog world.  I just can't do it, though!  Since I haven't been able to pull the trigger, why not type up a post?!

When I started Tina's Place way back when, I didn't know what the fuck I was doing!  I quickly found a little niche with the crafting blogs.  It felt good, I had a purpose even.  Something happened along the way, that I think happens quite often with not only moms, but women in general...I started to lose my path, my fire, my passion...for EVERYTHING.  My sewing machine is collecting dust, I usually only bake for special occasions these days, and I just could not(and still haven't) find something I can be passionate about.  I have been struggling to carve out a new path for myself, and it sucks.  I hate this lost feeling that I wake up with almost daily. 

That being said, I'm certainly not giving up!  I have been trying to see things in a new light.  See my  struggles as gifts.  As shitty as my struggles are, they will get me to the place I want to be some day.  Its a slow process, though.  I am so tired of striving to be what other people are.  I don't want to be like THEM...I want to be like ME! 

Some things that I have started implementing on my journey:
*Working out because I WANT to, and it feels good...not because a program tells me I HAVE to!
*Not restricting what I eat...back to good 'ole moderation!
...these two have been tough for me.  I have always done better(by "better" I mean, lost weight) on a strict program with specific guidelines.  Let's face it...the programs I have tried are NOT sustainable.  Seriously, the SECOND you tell me I can't have something I want it even more than I ever did pre "life style change"!  If programs work for you, that's fuckin' great, but for me they're not realistic. 

Anyhoo...
*I started a gratitude journal.  I firmly believe that what you put out is what you get in return.  Being a Debbie Downer day in and day out is just no way to live.  I'm trying to put a positive spin on everything...and I mean EVERYTHING. 

Which brings me to:
*Mantras! You know, "start each day with a positive thought"-type shit.  Some mornings I forget...I mean, I AM trying to create a new habit here.  Rome wasn't built in a day.  The mornings that I do remember to say even just one positive thing, (or insert a few throughout my day) I can honestly say I go to bed at night with a more peaceful heart.

I know this is a little random, but fuck it.  Maybe I'll be back, maybe I won't...but its OK either way.

"I express gratitude for all the good in my life.  Each day brings wonderful new surprises." 

More Happy Thoughts

Happy Thought #4

Yoga for 60 minutes!

 

 

Happy Thought #5 

Made Donuts with Emily!  She makes an excellent assistant.  OK, so maybe not, but I get to brush up on my one-handed mom skills! 

 

Happy Thought #3

Happy Thought #3

45 minutes of cardio/strength last night...and looking forward to yoga tonight!  

I heart yoga.

Happy Thought #2

Happy Thought #2

Played virtual dress up with my sissy this morning.  

The hubs has his chief' dinner next month, and its the first time I'm going in a few years.  Ya know, social anxiety and all. 

I am so very proud of my honey.  He works so hard, and he finally found some time to update his certifications, which lead him to being appointed the captain's position this year!  Being the proud firefighter's wife that I am, I feel I need to support him in this.  He would do the same for me.  

 

This is the inspiration outfit my sissy found on Pinterest:

Clearly, I will not be sporting the Chanel hand bag...but a sparkly top and dress pants are right up my ally!

A Little Rusty...

...ok, a lot rusty! 
Every time I say I'm going to jump back into blogging, I peter out after one post.  I miss it.  I think I really need to get back into it.  I have been so damn stressed out lately, but trying to remain positive.  I know that a positive attitude will prevent me from spiraling downward until I break into a thousand pieces.  Believe me, I crashed a lot during the last 1/3 of 2013.  It just seemed like we could never catch a break!  We'd get a tiny bit of goodness, then, BAM...EFF YOU MULDOONS!

2014 is an even number, that's got to be a good start...right?  OK, so positivity.  How do I do that?  I think its only natural to feel like shit sometimes, but I was feeling like shit 90% of the time.  Just thinking out loud here, but maybe I'll post one positive thing (or more if there are more) a day.  A picture, a thought..something like that?  I have the time for a quick post at the end of the day, or the next morning.  hmm, that sounds doable. 

So, first Happy Thought post of 2014...

THE KIDS WENT BACK TO SCHOOL!  YEE HAWWW

OK, that wasn't so bad.  I think I can handle this...

Being A Special Needs Mom

I have been wanting to write this post for quite some time.  On many levels, any parent may feel these very things.  I don't want it to seem like my struggles are harder than the next person's.  Let me also be clear, this is not a pity party.  I would not trade this life for anything "easier" or less stressful.(well, maybe some days...) 

I am lonely.
I have an incredibly supportive family. They always come when I ask.  My husband is beyond amazing.  But I am lonely.  On weekends when everyone is off doing fun things, I am home with my kids. Sometimes when the afternoon is hard, I'll call my sister.  Knowing that she is at work, but praying that she answers just so that I may hear her voice.  My husband works long and difficult hours.  Most days, I see him for five minutes before he leaves for work.  Most nights, I am fast asleep when he gets home.  Occasionally, I remember a kiss on the cheek or a gentle rub on my leg.  

I have a seven year old toddler.
When you have a baby, sadly they grow and need mommy less and less.  My son has become so independent over the last two years, it makes me a little sad.  My daughter on the other hand, seems frozen in time.  Yes, physically, she's growing.  She's tall for her age in fact.  Emotionally and cognitively, she is stuck.  Currently, she is not ready to potty train.  I am still changing her diaper.  Something we all look forward to moving on from, I can not.  I don't know when I will be able to(though, I have hope it will be in the next few years)  I have to constantly be by her.  She has only been walking for about three years.  She is still unsteady.  She puts things in her mouth.  She has no sense of danger.  She is curious.  I can not turn my back on her.  It makes me a little sad.

I am afraid.
Every day, all the time, I fear two things.  One~that Emily will out-live us and will need to be cared for.  How scary is that?  Two~What if something happens to me?  I know where and how she likes to be touched.  I know her favorite foods.  In our own way, we communicate. At this point, I think I can read her mind.  My husband and parents are quite capable of figuring all of this out...BUT I AM HER MOTHER.  We have been connected since she was a star in the sky, SHE NEEDS ME to help her navigate through this crazy life.  I am terrified.

There isn't enough time in the day.
Everyone on the planet can relate to this.  After my son was born, and I was in "survival mode", I would stay up late, work out then sew beautiful things until my husband got home from work.  Now, I have all I can do to stay up passed 8:30!  My "me" time is grocery shopping when the kids are at school.  I have tried so hard to get creative again, but so far have failed miserably.  A couple times a month, I will paint my own nails.  Every so often, my sister and our friend will come over after the kids have gone to bed and we have a little "girls night in".  I'm trying, but its hard.

Reality.
I can only have so much hope.  I still hope that I'll hear her speak one day.  I will always hold on to that one.  Maybe one day, she'll be independent enough to live on her own.  However, as she gets older, there are things I have to let go of.  My beautiful daughter will probably not bring boys home to meet her daddy.  She will probably not get married, or make me a grandma.  I get emotional thinking about that part.  We have so many hopes and dreams when we hold our little babies for the first time.  It is devastating to grieve the loss of the child we held in our minds.  Devastating.

The Guilt. 
Its awful.  I feel guilty that I caused her Dup15q.  I feel guilty that I don't do enough.  I feel guilty that she doesn't get to experience things that other seven year old little girls get to.  I feel guilty that my son has to wait for his needs to be met.  I feel guilty that we stay in because I'm afraid of people staring at her.  I feel guilty that people have to wait too long for her bus.  I feel guilty that I snap off at my husband for no reason.  I feel guilty that she doesn't "look" like a special needs child, when others do.  I feel guilty.  Honestly, the list is endless...

Small gains are HUGE victories.
Three months ago, at the age of 6 3/4, Emily learned how to drink from a straw!  It.was.HUGE.  She also can remove her own coat now, and we're in the early stages of having her dress and undress herself.  Little victories like that are what keep me going.  The smile on her face keeps me going.  The "Emily hugs"(she does not wrap her arms around my neck...she lays her head down and presses it hard.  Her love spills out when she does...its simply magical) keep me going.  The fact that I KNOW SHE CAN DO IT keeps me going.

All that being said, I AM PROUD TO BE THIS GIRL'S MOTHER.  For all of the heartache, pain, fear, doubt, insecurity, frustration, uncertainty..and all of it.  I LOVE THIS CHILD.   She is a gift.  We get through it one.day.at.a.time.  It could be so much worse than it is.  The fact is, I have a beautiful child that is happy.  Really, what it all comes down to, what we want for our kids...is for them to be HAPPY. 

So what has happened since last I blogged?

Easter 2013

  

 My sister and I turned 32!

Among the gifts I received, a bread machine!!  WOO!

 And I got my hair did!

Yesterday we got some professional pictures taken of our little family!

We have never had professional pics done, and we loved it. 

 It was a terrific morning!

Photos by Anthony Ziccardi Studios!

Sick Kids

I've said it once, 

and I'll say it again...

Sick kids suck.

Hoping my babies are on the mend today.

Biscoff Nests

If you haven't tried this stuff, you.need.to.

So here is the easiest recipe ever...its actually the peanut butter cookie recipe that we've been using since I was a kid substituted with the Biscoff Spread.

1 3/4 c flour
1 tsp baking soda
1/2 tsp salt
1/2 c sugar
1/2 c brown sugar
1/2 c shortening
1/2 c Biscoff Spread
1 egg
2 tbs milk
1 tsp vanilla
1 bag pretzel m&m's

Preheat oven to 375
Add all ingredients in a bowl except m&m's and combine well.
Using a 1 inch cookie scoop, scoop dough onto a parchment lined cookie sheet.

Bake 10 mins.  Immidietly after removing from the oven, insert 3 m&m's...don't burn your fingers!
Cool and eat. *(you will be a few m&m's short, but these are just as tasty without them!)

Cabin Fever

I have had some serious cabin fever this week!  To top it off, we got about a foot of snow Thursday night into Friday.  Ugh.  Luckily, the temps are supposed to start climbing, so I don't think it will stick around too long!  The snow brought a snow day of course.  Emily hated it.  She would much rather be in school, and she let me know it...all day!  This snow day also means that the kids will now lose a day of Spring break.  Hurricane Sandy brought us many days of no school...as well as almost 12 days without power!  That ate up all of the allotted days off for the year.  Freakin weather.

This morning my sister got me out of the house, and we went to Old Navy.  I love that store!  I can always find something that makes me feel good...and I don't get to go often enough.  Today's favorite purchase was a pair of super cute sunglasses.  Over the Summer, our cars got broken into...yep, right in our own driveway!  Hub's car got most of the damage--they ripped the flippin dashboard out, and stole his bag of tools and other various items. They ripped the radio out of my car, but left it on the ground...but the little turds(detectives think its kids) took my most favorite pair of shades!!  Bastards.  So hooray for new sunglasses, and longer days! 

Don't forget to spring ahead!! :o)

I have a SEVEN year old?!

When did that happen?  Craziness, I tell you!  We kicked off her birthday on Thursday by participating in World Rare Disease Day.  We all proudly wore our Dup15q shirts, and Emily's school even wore blue too!  There was a Facebook event created, and it was amazing to see all of the participants supporting our kids!  Truly felt the love from all around the world!

On Friday, her actual birthday, I brought cupcakes to her school!  So much fun.  Got to hang out for music time, then we all sang to my big girl!  It also happened to be mismatch day!  

I've been loving instagram by the by!

Then Saturday was the family celebration!  Emily, unfortunately, started coming down with a cold, but she was a trooper and hung on til cake time!

Today is Monday.  Back to reality, but I love Mondays!  I always feel motivated to get stuff done around the house.  Today I don't have the little guy I normally watch, so I can REALLY do some movin and shakin!

I'm laying in my bed with a crying almost five year old, and a luke warm cup of caramel mocha coffee from McDonald's.  my hair is dirty, and I'm still in my jammys.  Frankly, I don't care.  I've been reflecting a lot on my life over the last few weeks.  After david was born in 2008 i used to try to be super mega mom.  Sewing, working out every night, blogging, and putting a smile on my face.  People used to ask me "how do you do it?".  Honestly, I think I was in survival mode. I could go on three or fours hours of sleep and be good to go!  The last two years have been amazingly difficult.  When hubs started working his second job, I was blinded by exhaustion.  The kids and I were trying to get into a groove, and it just seemed like a rhythm would never fall into place.  We thought we were going to lose the house.  I cried.  I cried a lot.   Everything was put on the back burner.  Everything that made me giggle inside felt like such a chore. I was lost for a long time.  Just unhappy.  I knew that I loved my husband, and I loved my kids.  So why wasn't that enough?  I kept waiting for some big revelation.  I knew deep down if I just got off my ass, things would start to change.  I.just.couldn't.

I'm not sure what is different today compared, to even, say, last week...but I feel it.  The winds of change.  It feels good.  We do have a rhythm now.  Emily is beginning to communicate.  Not with words, of which she still has zero, but she has her own ways of telling me her wants and needs now.  And not just crying when she's unhappy with something.  I feel a shift with her too.  She's become so much more confident over the last few months.  I've started picking up more sign language, and I really feel like she understands when I use it.  Seriously, it thrills me.  My biggest hope and dream is to hear her say "mommy"...even if its just once.  But until then,  i know that she'll be ale to tell me her needs in some way shape or form.

David is mellowing out.  Kind of.  He drives me nuts, and knows exactly how to push my buttons, but he just melts my heart.  He's kind and helpful...a gentle soul.  His teachers love him, and his speech has come so far in the last year!  He tells me he loves me constantly.  I like to think he says it extra for Emily.

Hubs and I are shooting for a date night once a month, or a movie night on the night or two he's home.  I'd rather have some time with him on the couch than no time at all!  The house stuff is figured out, so that is a huge burden lifted.  I love him more now than I did 15 years ago.  No, really! Starting to ease back into the things that I love, but above all, I'm taking care of myself.

I'm doing this from my iPad, so hopefully this posts!  No idea how to add pictures either! Lol. So out of the loop! Lol

So Long, Summer!

I really can not stand the summer months!  Its too hot, too sunny, and too boring for the kids.  I lovingly look forward to September every year.  It is my official start to Autumn.  My favorite.  Without fail, I ease into September like stepping into my favorite pair of jeans(which now, sadly, have a hole in the ass).  It doesn't hurt that school starts up again, either!  Hubs decided to take a few days off from the full time job to spend it with the kids before they head back.  I love him.  Today is the first day of his long weekend, and I feel relaxed already.  Even David seems calmer this morning.
 I feel like we've been stuck in this house since June.  We take a trip down to my parents' house once a week for dinner, and we made it over to my aunt's house once or twice.  Throw in a few sleepovers, and that's been our summer.  I'm almost embarrassed when people ask the kids how their summer has been.  Honestly, its been shitty!  LOL  We don't have a pool and we can't afford day trips...so all David can do is stare blankly when the question is asked.  I am determined to try and give them a better summer next year.  Even if we do only stay home, I have GOT to come up with a way to make it less boring.  I realize that there is only so much that I can do, but I promise...I'll try harder next year!  

On a Dup15q note, we were stunned this passed weekend to learn that Fen Li, from Bead Flora and Jewels decided to donate a portion of her proceeds to the Dup15q Alliance!  She even threw in free shipping for the weekend to sweeten the deal!  My sister "met" Fen back when she was planning her wedding.  Fen HAND BEADED all of my sister's bouquets.  They were(and still are) exquisite!  Marie and Fen have since become friends, and dear, sweet Fen, hearing of Emily's diagnosis kindly "paid it forward".  I am deeply touched.

So on a sappy note, I'll leave you with a few pics of the kids that I snapped off yesterday.

 

Blogging Vacation and a Diagnosis.

I don't even know where to begin.  I've been in a serious rut.  I haven't blogged, baked or done very much sewing.  I hate that, but I just can't seem to find the energy.  Hubs is still working obscene hours to make ends meet.  I'm on a two week hiatus of babysitting Mason while both of my kids are home for the last two weeks of summer break.  Its been a nice break, but I miss the money! LOL  School starts again on the 5th for Emily and the 6th for David.  

David has been giving me a serious run for my flippin money.  Its been an intense power struggle over the last few months, and it seems to be escalating.  I'm at the end of my rope, and I'm pretty much willing to do anything to get this kid back under control!  Bed time is the WORST!  I have to start early every night because I know its going to be 20-30 mins of back and forth with him.  Someone just recommended 60 mins of quiet time before bed(no tv, video games, ipad, etc).  I'm going to attempt 30 mins to start and see how that goes.  Its so hard being on my own @ bedtime 5 nights out of 7.  

Emily has been doing well.  She loved her summer session...she loves school...and that makes me relax.  In June she had to have some dental work done.  She had a massive cavity that I never even knew about because she won't let us look in her mouth very often.  Have you ever been bitten by a 6 year old that has super human strength?  Its no picnic!  Anyhoo, we took her to the dentist for the first time...and I had no idea HOW he was going to get a good look...but he was fantastic!  He got in there just enough to see what he had to and decided it would be our best bet to put her under general anesthesia to have all of the work done.  Well, the next day, the monster cavity decided to rear its ugly head, and the whole left side of her face was swollen!  After and seriously traumatizing trip to the oral surgeon, that was taken care of.(seriously, we've been through a lot of stuff with Emily, but this ranked top 3 worst experiences EVER!)  About a month later she had the rest of the work done, and she's good to go!   

In other Emily news, after many tests, and even more trips to clueless doctors, she has a diagnosis.  She has what is known as, Chromosome 15q Duplication Syndrome...or "Dup15q".  I was a little sad a first, because the genetic counselor couldn't really give us much information on it.  I felt as though we were still in the dark.  It is very rare, but other kids have presented with similar duplications and symptoms.  I went right home, and consulted with Dr. Google.  I found the Dup15q Alliance.  There it was, right in front of me...a home for Emily...somewhere she would finally belong.  In that moment, my sadness lifted, the clouds parted, and a sense of relief washed over me.   Through their facebook page, I have been put in contact with families all over the US, and the world!  I do not have an exact number, because surely, there are kids and adults walking around that have not yet been diagnosed, but we're talking less than 1000 affected worldwide at this point and time.  Its rare.  

I feel I have a new sense of purpose.  This is what I'm supposed to be doing.  Educating, and spreading the word about Dup15q, and kids like my beautiful Emily.  Everything is starting to fall in place.  I feel my confidence rising, and my energy slowly coming back to me.  It won't happen over night, but I'm getting there.  I still miss my hubs, David still exhausts all of my emotions at bed time, and everyday has a new struggle.  However, I have decided to bring more positivity into my life.  For a while, I was full of negative energy, but I have consciously decided that I must allow the positive in, and let it take over.  Yes, some days are hard...but every moment is a chance to start over.  

 

lady bug cupcakes

i've been wanting to share these cupcakes since the weekend, but my memory card crapped out!  my sister took some great pics, but i had to wait for her to upload them!  (thanks marie!)  so here are emily's 6th birthday cupcakes!  i went with lady bugs!

i used a grass tip on my pastry bag.  a little advice(that i, of course, had to learn the hard way!):  don't try to pack all of your butter cream into the bag and expect it to easily come out of this tip!  i blew out 2 bags before i realized that!(that's what i get for rushing!) work in small batches!!  the holes on this tip are small, and when you're trying to shove 5 lbs of frosting out of holes no bigger than a pencil point...you're going to have some problems! 
i got the lady bug picks, picket fence papers and mini flower sprinkles from shopbakersnook!  this is a fabulous resource for bakers of all levels!  prices are reasonable, selection is huge, and shipping is super fast!  there are so many things out there now for anyone to take a favorite cake recipe or box mix and turn it into something special and unique.
everyone loved them!

and how about a side of goofball?

bad irish girl...BAD!

i should be ashamed of my white irish hiney!  they only thing i'm good at when it comes to st. patrick's day is making a mean batch of corned beef and cabbage. followed up the next day with a nice pan of hash!  i dress the kids in green, but i am just too lazy to decorate!  and honestly, i'd rather spend my money on easter stuff!  

this weekend is daylight savings time!! WOO HOO!  over the last few weeks, i've noticed the days getting longer.  love it.  also love not having to wait in the dark for emily's bus!  it was a little scary...and just weird!  as if the poor thing doesn't have a long enough day, she was climbing the steps to the bus without the sun even being up! 

the girls that hubs works with have been asking for baked goods, and who am i to deny a craving?    i haven't sent them in anything since christmas, so they're due for a fix.  i found caramel cups @ the dollar store today...think i can make them work! 

david will be home soon, i think i should try to be a little productive! 

six.

my beautiful emily marie turned six yesterday!  my oh my!  i can't believe it was six years ago that our world was flipped upside down with this wonderful creature! 

your smile lights up my world, sweet girl! :o*

busy week

did i really get my whole house cleaned before david got home from school?  you bet i did!  not sure how, but i'll take it!  ok, so i dusted everything yesterday, but hey, whatever works!

i don't love busy weeks like this.  i tend to get a little scatter-brained and overwhelmed.  tomorrow i have to
*go to shoprite
* bake a million cupcakes for emily's birthday on thursday
*and i have parent/teacher conferences @ emily's school.
action packed for sure.
 then on thursday i need to
*deliver those cupcakes
*attend the parent group meeting
*emily has therapy after school(we're helping someone earn her master's degree!  exciting for her, but also anything that will benefit emily is a bonus of course!)
*and i have to figure out dinner...i'm thinking pizza at this point.
 really wish i had the patience for meal planning. 

super excited about my secret opportunity that i'm scared to talk about just yet!  the pessimist in me says "keep your mouth shut, or it will blow up in your face!"  the optimist in me says "EFF YOU PESSIMIST, shout your news from the rooftop!"  let's see who wins over the next few days lol

how 'bout some recent pics of the kids.  gosh, they're getting big!

 Emily recently donated another 8 inches of hair to Pantene Beautiful Lengths! 

David is just a big old goofball!  His new favorite thing is singing and dancing to New Kids on The Block's "Hangin' Tough".  I kid you not.

phases

every time david goes through a new phase, i want to crawl under a rock.  this latest one is a battle of wills!  i will come out victorious child...you better believe it!  bed time MEANS bed time!!   you already went pee, you had your sip of water, you have your 5 blankets--in the proper order, your fan is on, and lightening mcqueen is ON!  now SLEEP! 
...oops, i think i forgot to turn mcqueen on...oh well...SLEEP ANYWAY!   

its been a while!

wow, i haven't blogged in so long!  i come back, and i have over 11,000 page views?!  nuts i tell you! 
i miss my little 'ol blog.  i'm hoping to start writing again on a regular basis. 

emily is about to turn 6...SIX!  where does the time go?  before i know it she'll be taller than me and want to drive the car!  i can't take it.  she is currently sporting a black eye due to a mishap @ school!  the poor thing!  par for the course!  she has started transitioning into the next class at her school.  i'm sad to have to let her first teacher and new little friends go, but its time for her to move along.  she'll only be across the hall, she'll still see them!  love her school.

david is doing terrific in school!  they moved him up to the inclusion class already!  he is still receiving speech 3 times per week, but he's moving right along!   i am told that all of his peers love him(YAY!) oh--and he's potty-freakin'-trained!  100%!  i didn't think i'd ever see the day.  thought he would be in his LUVS til he was 30 for christ sakes! LOL

hubs is still working his balls off.  its still difficult to only have him home 2 nights a week to help me with the kids, but it has gotten easier over the last year.  he loves his part time job, and thank goodness for that!  if he hated it, we'd probably hate each other too! lol  one day at a time.  luckily the kids have finally adjusted, and its been easier for all of us to get through a night. 

what about me?  i'm not killing myself with baking, and crafting, and sewing and.... 
i was doing much too much, in a small window of time.  i was burnt out.  still am a little.  i'm trying to work on me.  make myself happy, and not do things because i feel like i have to.  part of me wants to get back to that...part of me doesn't.  thanks to pinterest, i have a new interest in this blog, and my creative side.  people are pinning me.  say what?!  it blows my mind, it really does!   i've also started watching my friend's son 2 days a week(soon to be 3).  its nice to have a little one in the house again, but i get to send his cute little tush home at the end of the day! lol  the money is nice too! 

i've also had an opportunity come up that could be pretty cool...thanks to this little blog.  don't want to jinx myself though, so that's all i'll say for now!! :o)