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