5 years

With all the sadness, raw emotions and craziness of life lately, it feels awesome to write about our princess.  5 years ago today, August 23rd 2007, our sweet little bundle came into this world.  Everything about her was and is perfection.  Her birth story was so easy I felt robbed at the end, left thinking there was surely to be more struggle than that??  And just as she came into this world, she has remained (for the most part!).  She is soft, gentle, adorable, all the things that little girls are made of.  I spent my childhood dreaming of this....a little girl who gives the best hugs, snuggles all the time, begs for her back tickles, giggles so softly and has just enough sass to keep it interesting!  We do our nails, she does my hair, I do hers, we argue about outfits, and how many stuffed animals she can bring in the car to run an errand.  She loves her animals, anything stuffed or rock hard plastic.  She loves them.  As of late, she loves babies, cuddling them, changing them, wanting to be like mama.  It melts my heart.  She loves to cook and clean and help in anyway she can.  Always willing to help EJ or Nolan, she doesn't need to be asked twice, she listens the first time and doesn't complain.  Yep, she is that awesome.  She also is intensely shy with EVERYBODY, including her grandparents, and any close family, besides us.  With us you will see her karate chop daddy like nobody's business, beat up her brother and carry Nolan around (mind you he weighs only a little less than she!).  She will come out of her shell I am sure of it, in the mean time, I like that her outgoing, silly personality is saved for us and our four walls.  

Well and then there's this guy in our lives around here.  His music begins early in the morning and plays late in the day.  His posters adorn walls, her three T-shirts of his are worn EVERY week.  We have a purse, necklace, notebooks, folders, stickers and everything else you can imagine that say Justin Bieber.  It's officially Bieber Fever around here.  She sings his songs endlessly, and the best part about this story is how it began.  People who know me know I'm anti TV watching and pop media; NOT for me (Real housewives addict!) but for the kids; so beyond talk radio you won't hear or see much else during awake hours round here!  So, when Graham brought home his Valentines last year from school and Audrey found one and sheepishly asked, who's this? I innocently said, Justin Bieber he sings music.  And that led to; what kind? And that lead to instant love; that hasn't wavered.  Yep at 4 1/2 she's boy crazy!  Talk to us in 10 years- we know; not good!!!  But now its adorable and sweet and takes our shy girl and turns her into a dancing; guitar playing machine and its priceless...

 Thens theres this guy; her best friend; silly face extrordanaire!

In the Bieber Fever Audrey decided on Friendly the Clown for some entertainment; except se decided to do without the clown; so he came as Bob the balloon twister and face painter!

The paper going potty!

Baking a cake on daddy's head; he's a rather good actor :)

Eleanor winning the balloon guessing game with Elmo!

oh the biebs how she loves thee :)

The bounce house of death...oops I mean fun

balloon sword fighting

So, this years birthday wasn't the easiest to plan, with my heavy heart, but the memories, the fun that was had, it's all worth it.  Every bit of energy and dedication to making a perfect day for my girl was fantastic.  Today, her actual birthday is marked with our family traditions; presents wrapped and waiting outside your door when you wake up; decorated kitchen table and breakfast of donuts with candles and "no healthy stuff"!  Topped off with dinner at the "grape restaurant" aka the Olive Garden; and to those that know Jeremy well, you know he loved it ;).  

compare

You know how there are phrases that people say to you throughout your life and you keep hearing them over and over and over and they never sit well...well, to me, it's this: "stop comparing, you have to stop comparing."  I think that is the biggest load of bull shit ever.  Hear me out.  To be human, is to compare.  To understand your surroundings, judge your life, is to compare.  Think about it, how do you think you are fat or skinny?  You compare.  How do you judge if you are smart or dumb? You compare.  All of us compare our children to other children, DAILY, on charts when they are born for weight and height...on tests throughout their schooling, it's based on comparing all results and that is where they derive the top and bottom, by comparison....it's how we live.

So, to imagine having a child with special needs and NOT compare them, well that is impossible.  That word doesn't even do it justice.  It's all you do, when you see a child the same age, when you see a pregnant woman thinking that could be you, when you hear of someone complain of mundane problems, you compare, thinking what your life would be if it were that easy.  It doesn't matter, you compare and you get the other end, where you are with someone in much more dire straights and you breathe a sigh of relief, because you compared; and realized you didn't pick the short straw and it feels good.

How on earth do any of us, not compare?  I don't know.  I don't think it is remotely possible at least not for me.  I am trying to get to a place of acceptance.  To feel the pain, the heartache, the disappointment and realize it isn't going to change.  It isn't going to be any different, that isn't my life.  The moments when I see a mom walking into a store with 4 healthy, typical children, I can't help but compare, dream, wish that was my life for a moment...but it isn't.  It is never going to be my life.  But, there is also a woman walking into that same store, probably on the same day that will never hold her own child, either unable or lost them tragically, whatever the reason, you can compare, but when you do, you must include both ends of the spectrum.

My dad seriously the most wise person, who has his fair share of tragedy and lessons in loss, told me today, "it may not get better, but it certainly can get worse."  That may sound so depressing to the average person, but to me, it was EVERYTHING I needed to hear.  See, everyone keeps telling me how it's going to get better, it will be OK, everything will work out, and I just can't see it.  I just don't feel that way.  I mean come on, I told myself that 2 years ago when I gave birth to a child with Down Syndrome and then a year later he had epileptic seizures and was unable to even smile; a year after that, here I sit, with yet another blow and worse yet, knowing the pain in the path that faces me.  Knowing that it isn't EASY, it takes a LONG time to get better, and quite honestly, after three major blows in three years, I am thinking that it truly DOESN'T get better.  I don't think that negative, I think it's realistic and I am scared to be positive now.  Scared to hold my head up.  Scared to think it's gonna get better, it really is.  Underneath my pain, the light is there, dim, but there, and it does pull me back and say it does get better.  But, what I really needed to hear, what I really needed to stop and think about is, it could get worse.  Because it can.  I can make this situation a lot worse than it is right now.  I can give up and watch my marriage crumble, my children suffer from a mom that's sad and can't pull herself up, then there are just basic tragedies that occur and can strike at any time, cancer, car accidents, loss.  So, YES, it can get worse, that is for certain.  And the last thing I am going to do is let that happen and look back and wonder why I didn't do anything about it.  I am going to make sure that I did ALL that I could to make it better NOT worse.  That is ALL I can do, that is all I can focus on.  Making sure day in and day out, I am living to my fullest.  There will be moments of sadness, comparison and grief.  But, I will work my ass off on focusing my energies towards, happiness, gratitude, love and laughter.  It has to feel better to do that, for all of us.

I want nothing more in this world than our children's happiness and I want them to know that I did EVERYTHING I could, every single day to give that to them.  I am sure to fail, fall short and do it wrong; but I will try my very best.

happy endings

WARNING: this post lacks hope and happiness; if you don't want to read, I understand.

The thing that I am so obsessed with right at the moment and seems difficult to get past is this, very simply put, happy endings.  I feel like everyone else gets them and we didn't.  I feel like a victim, stuck in a bubble that I can't pop.  Trust me I tell myself daily, focus on the positives, let those overwhelm you, not the crap.  But, honestly right now, I can't.  I just keep crying to myself thinking, why us? Why again?  Why didn't we get our happy ending? Is this a life lesson for me, for all of us? Am I not learning enough or doing enough so I "needed" this?  I'll tell you this, I don't want to learn more, grow more, do more, I want to just be flipping happy.  Is that so hard?  Apparently it is.  Apparently having one child with Down Syndrome wasn't enough of a life lesson.  I realize that there are far worse things in the world than having two children with special needs.  I realize that we were blessed with two typical children first, a boy and a girl.  And what more could I ask for?  Why am I greedy and wanting more?  Shouldn't I just be satisfied with all the good in my life and let the rest lay as it may?  I wish life were that easy.  I wish I could just see what I have is a beautiful family and embrace life's challenges with the gusto that I desire.  But, somedays it just isn't that easy and in fact seems impossible.

It's tough when those around you continue on and their lives seem to be granted with their dreams and desires fulfilled and you look and think, didn't I deserve that too?  Am I that awful of a person that I need extra hills to climb to become better?  I stop writing this, thinking, I don't want anyone to know how truly difficult this is, day in day out, to look around and feel sorry for yourself.  I despise it, people who do that with their life.  Can't stand people who can't get their head out of their own shit and realize the blessings that surround them.  And please know that I do.  But, right now, this is where I am at.  Tired of staring at my new baby and instead of seeing the wonderment of tiny little toes and fingers, I watch to see if his eyes can track me, if he can hear me, if he is strong enough, watching Youtube videos of 5 week old babies and if he is "normal".  It's obsessive.  There is no other word for it.  If you haven't been there you don't know, and unfortunately I have before.  Known before, the pain of milestones passing and missed, the pain of your two year old not speaking and still eating pureed foods and bottles.  Watching others at a park simply climb and explore with ease while ours can barely stand...it's heart wrenching.  Most days I focus on how he can do so many things, like giggle and smile and love and it does fill my heart, because in life the simple things really do matter the most.  But, in our world, day to day, it weighs heavy.  The reality of his limitations, the dreams that slowly die.  I feel guilty writing that, as if to say Nolan isn't "good enough".  And so my anger comes, pissed that I can't feel badly, pissed that I can't stop comparing, pissed that I can't just be happy with my son in all ways, all of the time.  But, it's the truth.  And the saying, "Truth hurts" well it's true.

I spoke to a mom online a week ago about losing her 2nd child to a rare chromosomal abnormality, she has a living child with DS as well and I asked her point blank, "is it easier to lose them?" Meaning was it easier to lose her child or live with a child with struggles?  Her answer was honest and I so appreciated it, she said, the diagnosis was harder for her then the loss.  And that I would think is true.  You see, having two children with a diagnosis, I lose the biggest thing I have at the moment, the hope of having a typical child again.  Seeing them develop and grow and talk.  I so mourn that, am dying to recapture it.  Thinking I MUST have that again.  I can't believe that I don't and won't.  I can't be around anyone pregnant.  My favorite blogger recently discovered she was pregnant and announced it online, I am so jealous I can hardly breath.  I want to be pregnant again, dreaming of this new life.  Dreaming of that typical baby and how quickly they surpass all things and slip into independence and growth.  I miss that terribly.  So, to imagine my favorite inspirational material, now pregnant, it's awful.  Mainly because I have these conflicting, unpretty thoughts about how I want someone with me on this journey, but then I stop and realize that means their dreams will be unrealized as well, and who wishes that on their friends.  It's so complicated, messy and just not good.  I wish it were simple.  That I could see the reasons and meaning and understand the need for this in our lives.  I wish I had faith, hope and gratefulness all the time, to pick me up when I am fallen.  But, right now, I feel down, in the dirt and coming out seems nearly impossible.  It isn't something I can talk to my friends or family about, they all have well meaning phrases of support, but in reality very few people can remotely understand our specific experience and that is so isolating.

When I first became a mom to a child with special needs, I remember people saying it was too hard to have friends with typical kids.  I thought that was ridiculous, why would I need new friends?  Then, as new babies are born typical, as they complain about daily challenges raising typical children, or complain about simple things like potty training, you find yourself understanding.  Understanding that their life is simple, easy and taken for granted in so many ways that they will never know.  And you aren't about to be the downer that tells them how hard it really is.  You want to hold your head high, smile and relate and be "normal".  Don't want to stand out as "different" or less than or be pitied by anyone.  What is worse than that?  Being the family that people sigh a relief that they aren't.  But, of course they do, they think you are extra strong because you have two children with special needs.  I am not extra strong, or brave, or extraordinary.  I am a mom, just like you and struck twice and what else am I to do besides get up and keep going.

It's what also is difficult about a birth diagnosis, because you want to be sad, cry and be bitter, but you still have a precious life in your arms.  People don't grieve with you because they don't know what to do.  They don't know if they should say, "I'm sorry." Is that offensive, mean to your child that is here? Some say yes.  Some say no.  It's different for everybody.  For me, I need time to grieve, this time, more than ever.  I need to know that it's ok to grieve and cry and doesn't mean I don't love EJ or Nolan, of course not.  I love them intensely and adore them the same as our others, truly.  But, I grieve the loss of not having a typical child again, that is after all what we all wish for.  But for us, our happy ending is still in the making and one day, one day, we will have it, right?

life goes on

It's crazy to me how time just keeps passing with or without you...life truly does just go on.  I have always been a person aware of life tragedy since before I was 4 I lost my brother, suddenly and tragically, so I knew life can change with a simple breath, from one to the next, your earth can be shattered.  But, the thing about life is that it simply keeps moving and you can either stay in your bed and watch it move outside, or get up and do something.  I am more of a get up person, wanting to live a happy life, with memories and fun, so that is what I choose to do with each day, most days.

There are some that I have not gotten out of bed, finding solace in cuddling my new baby and knowing my big kids are having a great time with Grammy, but also crying till my eyes hurt, feeling sorry for myself and bitter with the world.  It ebbs and flows, the grief and the hope.  I realize I didn't tell any of you Everett's specific diagnosis, because of so many reasons.  But, mainly because we know so little, there isn't much to find and most of which you will is highly depressing, shocking and NOT good.  So, what's the point of that?  Also, because I don't want you to see him as a diagnosis, it is my most disliked thing about Down Syndrome, that it is so recognizable and people instantly have a take on what that means to them.  They place him in a box that has been created in their head, good and bad.  So, with EJ I prefer you see this....

We are hopeful at the moment.  Since with the limited research and people available to contact.  We have yet to find a baby that was born with this condition that was perfectly healthy and there was nothing wrong with him physically and so we wonder, what if he just grows and we never would have known?  He eats like a champ, is growing great and well, cries in the middle of the night!  So, yep, he is a baby, a typical baby.  

We have found peace and our hearts healing, hanging with our kiddos, just absorbing their happiness and love for each other, it really is contagious.  We were up north with my dad at his place and the kids have a blast...to say the least...they fish, go on jet skis, go on the water trampoline, tube behind the boat...play in the "hot pool" as we call it!

Nolan would stay in the water all day and night, LOVES IT!

This is Grandpa at 9 am, letting Jeremy and I sleep in with the baby, gotta love him, he's a brave man with three kids in a hot tub!

Graham was obsessed with the blowing balloon rockets!

And he drove the jeep with one leg up on the other and one arm propped up on the other seat, he's just too cool :)

Mr. Nolan loves the iPad, playing and eating it!

We got home and this was in our backyard!  Gotta love living in Stillwater!

Little Miss Justin Bieber, she's obsessed and excited about her upcoming party, which changed from Pokemon and Karate to Justin Bieber... :)

Her friend Emmerson got her ears pierced the day before and Audrey chickened out, and woke up the next morning and begged to go, all day long, so we did.....

Still smiling

ugh it's about to hurt that sweet face!

She's looking at me like....you said it didn't hurt that bad....

Nothing a carousel ride can't cure!  She's very excited about her hello kitty earrings!

 We've just been packing in the fun this summer, really trying to enjoy every moment and the Washington County Fair met us with perfection of fun!

Jeremy "loved" the superman spinning ride, as you can see!

Princess on her pony, she could stay there all day.

The pig races were AWESOME...who knew...

This is Hamma Montana bringing it home...:) (I won't eat bacon for a long time...)

Balloon animals, a shark and unicorn

Daddy needed to break 2 bottles to win the biggest dragon around and well...he did!

I'm telling you Jeremy has many talents, but fair games, he is the MASTER...not sure what that's about, or what special talent it involves, but he never let's us down!!!!! He went from that, to win Graham his goldfish....and of course he threw the ping pong in the top container and could have gotten a crab, but ewwww....this mama nixed that and just said a goldfish is fine thanks!

So, life does go on...and not only that, it is beautiful, and we treasure these moments.  The ones with our big kids and their laughter and our little kids and their sweet snuggles and smiles.  Each one is a blessing and comes with a boatload of lessons.  They teach us to stretch our hearts and minds and truly are priceless.

I must give a shout out to your support and love.  It's been amazing and we so appreciate everyones kind words, generous meals and gifts and even phone calls and letters, it means a lot to us.  And a particular special thanks to Mary Bolger Cookies and Cakes by Mary, of sending me personalized, monogrammed cookies in a package just because.  She makes the most amazing cakes for our parities and always goes above and beyond, thank you.  Please check her out and order an amazing cake you won't regret it!