Homage to my Mother (because she deserves it, dang it!)

So, our story begins, almost exactly 28 years ago to the day, when I burst onto the scene (almost quite literally) and graced the world with my presence. While I'm sure my mother's womb was quite comfortable, I've never really been known for my patience. Some things don't change. My dear mother wasn't expecting me for another 6 weeks but, you know, there I was just the same!

My mother has been the one constant in my life, the one person that I have always known will forever be there for me. My mother's story could be described as: passionate, tumultuous, heartbreaking, emotional, loving, kind, sacrificial, and oh so deep. There are things that I have been told, things that I have seen, and things that I remember from my childhood that have helped me, in my adult years, to connect with my mother on a new level: a deeper level. I don't know if she even realizes that. My mother was never afraid to show us how very human she was/is. I cannot count how many times in a day she would tell me that she loves me; no child can hear that enough. 

How many times did I crawl into bed with my mother during a midnight thunderstorm? Ironically enough, I now love thunderstorms because they bring a piece of my mother to me even though we are separated by so many miles. I remember scaring her half to death on several occasions while trying to wake her up in the middle of the night. She has endured endless teasing for those moments!!! And yes, I have now experienced the sheer terror of a tiny, delicate, creepy little hand grazing your arm in the middle of the night making you believe that all of your worst nightmares have been imagined and the monster under the bed has finally come to collect his dues. 

How many times have I seen this woman's heart break, shattered into 3 trillion pieces and watched as she, piece by piece and bit by bit, put it back together and emerged stronger than ever. Unfortunately, I know that I have been the source of that heart breaking for various reasons, at various times. For that, I am sorry. But, you know, she's got this resilience that I just cannot even fathom. She knows that life goes on, you cry for a bit, you learn from whatever it was, you put on your big girl panties, and you move on. She's a rock.

How many times have I compared my own mothering to that of my mother's??? Do you know that woman worked a full time job, ran children around to countless extracurricular activities, did pretty much all of the laundry in the house, cleaned constantly, and still had a hot meal on the table almost every single night??? Yeah.... I don't do that. Bless her. I didn't recognize everything that she was doing back then. My bad.

As I grew older I had to separate from my mother. No easy task. Our relationship has had bumpy times in my adulthood. Trying to adjust to life as an adult and not relying on your parents for everything is so much harder than anyone ever prepared me for. I love my mother. I miss her everyday. My heart literally aches for her on a regular basis. I call her whenever I can. But I so wish that I could spend every holiday with her, that she could watch my children grow with me, that she could see me, in my role as a mother, on a more regular basis. 

Here's some randomness to end our post:

• My mother never missed a single choir concert, dance recital, or any other performance. Ever. 
• Birthdays were a big deal to her. Some of my fondest memories are of her pulling me out of school during lunch on my birthday to take me to the restaurant of my choice.
• Sometimes my mom would skip her lunch hour to attend school functions, doctor appointments, or other important things. She was a full time working mother. But she never missed anything.
• My mother, sister, and I all cackle like old hens when we're together. Never fails. 
• My children know that their nana loves them beyond anything they could ever imagine. We video chat with her and sometimes I don't get any screen time. They take it all up. Two of my children can't really speak, but Nana doesn't care, she just lets them rattle on and on and on and on and on..... and they do.
• She has taught me to embrace my feelings and my emotions. This is so vital and so important. I love deeply and care deeply because my mother did. That is what I watched her do. 
• When I was pregnant with my first child, at the age of 19, I climbed into bed with my mother during a thunderstorm. No joke. And she just put her hand on my belly and told me she loved me and dozed back to sleep.
• My mother is not perfect but she is perfectly mine. And she is perfect for me. And I love her more than I could ever say.

So, thank you to my mother. The woman who gave me life, taught me to feed myself, dress myself, wipe myself, work hard, love myself, and how to be a mother. 

She deserves this shout out (she picked the title, even)! We laughed and laughed as she talked about how not one of her children had, as of yet, given her a public shout out this year. Silly me, I was doing things on a personal level. But who DOESN'T want a public shout out? To be told that they're amazing.... I do!!!! 

P.S. to my brothers: you crazy, technology-obsessed, funny boys.... You didn't call me on my birthday (2 days ago) and ya didn't call mom on her day/ get her a card (for the one who lives there). We get it... you texted/facebooked.... Mom called you little shits ;) And we laughed and laughed at your boy-ness!!!!

Love you all!!!!

My secrets are my life

As I sit here in an empty house: a quiet house: a clean house, I find that I have ample opportunity to think, to reflect on who I am, who I want to be, what I do well and what I could change. Sitting here in my solitude I discover things about myself that I've kept hidden, some things that I've been open about, some things that hurt me, some things that I'm proud of. And I realize this one vital part of who I am..... I am HUMAN. I am who I am. I am beautifully emotional, even complicatedly so. I am messy and organized. I am a daughter and I am a mother. I am a friend and an enemy. I am kind and I am not. I am flawed: perfectly flawed. I am loved and I am not.

I have spent the majority of my life apologizing for who I am, trying to change the things about myself that make me unique. Being emotional and intuitive has never won me a plethora of friends and relationships. BUT it has won me lifelong friendships, loving relationships with family, and a marriage to my best friend. It has made finding my place in a new family incredibly difficult. BUT it has dealt to me a sixth sense, a way to decipher who is for my good and who is not. I can't remember a time when I didn't have that gift. That's not to say that I've always used it, but it's always been there.

People either hate me or they love me. With almost complete certainty, I can say that this is completely true. Some people really don't like me. I've endured bullying and unfair criticism in my life. And that's okay. Because for every person that hates me there are 5 more that love me. You can't win over everybody in your life, everybody that you come into contact with. You're not meant to. I'm okay with that. I've learned wonderfully valuable lessons from those that have expressed dislike for me. Namely, how not to treat others. But the greatest lessons that I've learned are from those that love me. Unashamedly, I will admit that I am not always easy to love. Yet those that love me are still here. Because of this I have learned that you don't give up on those that love you and that you love.

Every single day is a struggle for me. On any given day that you see me I may be ruled by the amount of physical pain that I am in. I was 10 years old when I started hurting, 14 when my neck problems were discovered, 15 when I had my first cervical fusion, 21 when I had my second, 27 when I had my third (just 2 months ago). Some days a smile is harder to give than almost anything else in the world. But I try to do it anyway. Some nights when I go to bed I wonder how long I'll have to deal with agony of being trapped in a body that, at times, feels downright torturous. It's been 17 years since it started; it's been 5 since it got to this current level. I hope everyday that this last surgery will provide relief. There have been days since January 29 (my last surgery) where my pain has been as low as a 3 on that annoying scale that they give you. Before the surgery I didn't think that was possible, or ever would be possible again.

My daughter has special needs, that is, she has down syndrome. I never knew how much that would define my life until recently. It is my night and day; it is what drives our lives; it is who we are as a family. And I need to shed some honesty on this life here. I'm struggling. Don't get me wrong, I love her DEARLY. But guys, I'm tired. I watch as our 18 month old catches onto things that Kloey still doesn't understand. My heart skips a beat when he calls me Mama and she still doesn't. It is bittersweet when he learns something that she has been working on practically since she was born. I cry. I feel alone. I wonder if anyone else feels the way that I do. I've never known a time alone with my husband and when I look forward into our future I realize that I never will. We will always have Klo. I know that and I accept that. But is it selfish to say that sometimes the idea of that just exhausts me? Am I allowed to say that? The endless therapies are draining. And while I know that she is growing, that she is learning, it just seems so slow, so tiring. And it breaks my heart. I watch her day in and day out struggling more than any other child just to learn something as simple as holding a spoon, or walking backwards, or climbing stairs. She will be 5 years old this summer. She is repeating pre-school. And that is fine because that is what she needs. But, my goodness, those IEP meetings are so overwhelming! They hand me this piece of paper that says something about scores and averages and all I see is that Kloey is 40-60 points below the average child. As they keep talking and talking and talking I just keep thinking, "STOP! STOP! STOP! She works so hard!!! WE work so hard!!! How is she so behind? Why is she so behind? Slow down and tell me what she does WELL!!! Tell me what she does right! Stop telling me that she is behind. Don't you think that I know that?!! Don't you think that I see that every single day of her life?

And while I focus so much on all of that I realize that my other children keep growing, keep learning, and that someday they will be gone. And I find myself wondering: do they know that I love them? that I would do all of this for them if they needed it? can they ever understand that sometimes my exhaustion comes out as impatience? will they ever see what this might have been like for me? do they know that I want to freeze time? to stop everything just for one moment. Just to look at them, smell them, run my fingers through their hair, and hold them as tightly as I can without suffocating them. Can they ever know how big of a piece of my heart each of them has?

For everything that I have learned in my life, everything that I have accepted, I still cannot accept that I might be a good mother. I make too many mistakes. I feel overwhelmed so much of the time. I am so flawed. But every day I vow to do better. Tomorrow is a new day. Today turns into yesterday. Yesterday turns into a lesson. And before you know it, your life is full of lessons and full of yesterdays and today is just a new addition to your reality.

She is with me

Today has been a day from suckville. For real. Despite the busy day, the emotional tolls, the physical pains and aches, I am more than happy to update the blog for day 5 of Down syndrome awareness month.

Kloey is a part of our family, a very big and important part of our family. Naturally, we take her with us on outings, errands, and vacations. This does require more time and energy on our parts but the joy that we get from having our entire family together is priceless. 

We do not, could not, and would not exclude her from anything, from being a part of this family just because she requires a bit more work. Yes, people sometimes look at us differently but who cares? I don't. My sweet girl is just being herself and we're all there to experience our day together.

Some have suggested that it is admirable of us to include her in this way. We never even thought of it that way. I guess one day we just put on our big kid panties, rolled up our sleeves and said, "Well, time to take the family on a vacation". There wasn't even a thought of "where should Kloey be when we all go to the beach. Or, "how can we escape the extra work and energy that is Kloey?" It was more like, "what extra resources do we pull to make this more bearable?" or "what can we do to make this fun for the WHOLE family?" 

I love having Kloey with us. Just as I love having Kourtney and Joseph with us. Kourtney loves having Kloey with us. Joseph adores his big sister Kloey. Kloey is Kloey. Kloey is us.

So, the next time you see me with my little girl, tackling a day at the beach, running down the sand with her for the one millionth time, while she is giggling like a crazy person tasting sweet freedom for the first time, just know one thing.... I'm not even thinking of her diagnosis. Her siblings and father aren't thinking of her diagnosis. And she is DEFINITELY not thinking of her diagnosis. All she's thinking about is running through the sand, making friends, and probably when would be the best time to snag the cookies that are waiting in the cooler.

A post from my first year of DS awareness

The Final day of Down Syndrome Awareness Month...

To Kloey Alice:

I knew that you were there
yet, it did not feel quite real.
You grew and grew each day
but I did not know your soul.
Movements came all day and night
the connection was not there.
A thought of something extra
filled my heart with fear.

Each day I struggled endlessly
to know the girl inside.
I tried and tried
to no avail
to calm my racing thoughts.

One night you came.
I knew right then
you would not be the same.
As you struggled for your breath
I struggled with my pain.

You came into my arms
I looked into your eyes.
I was calm.
A smile formed.
But did not last for long.
I knew again
with certainty
you were what I feared.

A day passed by
without much thought
without much feeling
without much love.
I felt the need to run that day.
I felt the need to cry.
I felt that everything was lost.
I felt that life was done.

Then I saw you helplessly
laying on your own.
I grabbed your hand
and said your name
and cried for all your pain.

I fell in love that morning.
I fell in love with you.
I fell so deeply that despair
could never overcome.

I fall in love each day
with everything you are.
You teach so much of love
of being who
and what
you are.

Today I cannot possibly
imagine what I felt.
That day that was so numb for me
was fear and nothing else.

I do not fear you little one.
You do not have to worry.
I know that you have come to me
so that we can share this journey.

Thank you for joining us this month. I love you all!!!

My escapee

Why don't we lighten things up a bit? How about some humor in our lives. My stress is your amusement.

My Klo is an escape artist. Oh, is she ever!!! She absolutely LOVES to be outside. She loves taking walks. She loves playing at the park. And she LOVES TO RUN AWAY FROM ME!!! Not everyone, mostly me.

You see, Klo has an endless desire to stress me to the max. She'll run right into the street. She'll run right up to a dog. She'll jump into a stream. Stresses me out.

Here are some of her escape tricks:

1. Be unfailingly adorable and full of sweetness so as to build up a wall of trust and affection.

2. Practice your ninja-like silence. If you're always quiet, they'll be less suspicious when the opportunity to escape arises. 

3. Memorize their patterns. When do they tend to leave doors open? When are the yard gates open? Typically while bringing in groceries or taking out the trash. Duly noted.

4. Learn how to walk and run on any surface without it hurting the soles of my feet. 

5. Watch them. Don't let them see that you're watching them, but watch their every move.

6. Inch your way ever so slightly to the escape portal of choice.

7. Make sure that pesky baby isn't in the way.

8. If said baby has made an appearance this is the time to push.

9. Wait until the parentals are distracted (i.e. the baby cries after being pushed; Mom is explaining to Dad why she bought the expensive spaghetti sauce [don't know what his deal is, that woman's food hasn't ever disappointed him. I feel its proper place is face down on the floor that Dad just mopped])

10. Slide silently out the portal and down the stairs.

11. RUN! 

12. Laugh uncontrollably as the wind hits your face and the air fills your lungs. You're FREE!!! You're FREE!!!! You're....

13. BLAST!!!! Foiled again. WHY MUST THEY BE SO FAST?!!!

14. Hatch a plan for the next portal escape.

15. This time... dupe the big sister into unknowingly concocting a plan with .

16. SUCCEED

Seriously. Girl finds her thrill in giving me panic attacks. Yeah.

.....We're working on that.

It happened

Kloey was treated differently because of her diagnosis. Someone saw her as a problem, almost like a bug to be squashed, not as an innocent and loving soul. And I wasn't fully prepared for it. She is my baby and the love I have for her far exceeds anything that I've ever felt before. It outweighs any fear, it dissolves any apprehension, and it overflows in my heart every minute of every single day. When I look at Kloey I see who she is and who she has helped me to become. But when these people saw Kloey they saw something defective. And that hurt me.

Here's the story:
We signed Klo up for dance class. She is walking this year so we finally could. She loves to dance, twirl, leap, whatever it is. And she LOVES music. We thought this would be a great opportunity for her to be involved in something outside of physical therapy, occupational therapy, speech therapy, and the very necessary pre-school (yeah, the girl is busy). This would be something fun. This would allow her to do something that she loves.

We got her all dressed up in her leotard and tutu and headed out. We actually forgot to take a picture which I'm grateful for. As soon as we got there and the dance teachers saw Kloey we felt the atmosphere change drastically. Now, I had told them that she has Down syndrome, I wasn't blind siding them at all. We thought that maybe it was just initial apprehension and that we should go ahead and try anyway. We didn't have an opportunity to talk to them about expectations or anything as class had already started. But, in my mind, this was a class for 3 and 4 year olds, there wasn't going to be a lot of structure anyway. I was wrong.

Kloey was THRILLED to be there. She loved shaking her hips in the big mirrors that lined the walls and she followed one of the instructors around trying to do exactly what she did. I thought it was adorable. They thought otherwise. They started to get frustrated with her after only about 5 minutes. They were visibly angry and upset that she was running up to the mirror. They kept letting kids cut in front of her in line but when she tried to get in line (she doesn't understand taking turns) they would put her in the back of the line. Over and over again they did this.

I decided to go in and see if I could maybe help them to loosen up. The instructor practically threw her at me and said with a nasty look on her face, "I just don't know how to approach this". Okay, now I was pissed. She was doing NOTHING that a typical child wouldn't do. She was there to have fun. They saw her diagnosis and dismissed all possibilities that she could ever be in a "normal" dance class. They set her up for failure.

I may sound dramatic but just know that my husband saw all of this as well. He agrees with the actuality of the events above. And to know Jordan is to know that he is the least dramatic person, and a very non-confrontational one at that. We were so upset.

She would put her hand on some of the girls' shoulders and say "hi". They would look back at her as if she was something so low that they could never be bothered to utter a simple "hello".WHAT are their parents teaching them??? As soon as the other kids started looking at her like they wanted to get rid of her and her differences we decided it was time to leave. I could barely hold in the tears. She loved dancing so much, she loved being around kids and just having fun! She cried the whole way to the car and for 10 minutes afterwards.

We took her to the McDonald's playplace and spoiled her for a good hour. She felt better. We didn't.
I got a refund from that studio and she lost the opportunity to know and love a beautiful and tender soul. She missed an amazing opportunity to learn and grow through accepting someone who was a little bit different than what she was used to.

Shame on her. And shame on her parents for not teaching her how to treat those with differences. And thank you to her, for throwing me into the realm of reality and helping me to realize that I am indeed strong enough to endure it.

(We are trying another studio next Tuesday. We've met the instructor and she seems amazing)

The beginning of everyday posts

Hey All!!!! It's October and you know what that means..... DOWN SYNDROME AWARENESS MONTH!!!! This month I will post something new every single day in honor of down syndrome awareness. My hope is to answer questions, raise awareness, and break down barriers.

Let's start with a very, very touchy subject... Be excited.

Last year I had the opportunity to speak with a mother who had recently gotten a positive prenatal down syndrome diagnosis for her child. This was to be her sixth child. She shared her story on a social media site with other expectant mothers and what she said is nowhere out of the ordinary. She and her husband decided that, with this diagnosis, they were going to terminate the pregnancy. She was 26 weeks along I believe.

The other mothers started to praise her for her courage and good sense towards her unborn child. They were saying things such as, "You are such a brave mama", "that was the best thing you could have done for that child", "don't worry, you'll keep trying and you'll get it right next time".  ..."you'll get it right". "brave mama". "best thing for that child". These phrases resonated in my mind and I was so sorry for all of these people that believed what they were saying. And I was angry.

I knew that my child was GRATEFUL for having life. I knew that I was brave for giving her life. I knew that I had already "gotten it right" with her. So, anyone who knows me knows that I couldn't keep quiet on this matter. With as much sensitivity as I could muster, I decided to send her a private message. It went something like this:

Hi. My name is Stephanie and I have a 3 year old daughter who has down syndrome. I know that it can be a scary diagnosis and that there are a lot of ideas and stereotypes about children with this diagnosis but let me tell you a little bit about my Kloey. She is the most lovable person I have ever met in my life. Every morning my life lights up at the sight of her early morning happiness and smiles. She plays, eats, sleeps, laughs, has favorite foods and shows, just like any other child. She has so much worth. I'm sorry that you felt that you needed to abort your baby, please just know that I am here for you if you have questions.
Something close to that.

She sent me a message back:
Hi. Thank you so much for that message. I have been have conflicted emotions since I made my decision. Your daughter is beautiful and I wonder what my little one would have been like and how my life would have changed.

She regretted her decision. She wanted to meet her child. But her child was gone, simply because of an extra chromosome. I am not trying to be insensitive here, I am simply sharing our conversation and the before and after of this mama's emotions and thoughts on the matter.

My goal here is to eliminate this idea of "Diagnosis=lesser life". It simply is not the case. Diagnosis=lots of emotions and a different plan, not any less of a life. If I can change one mind out of the over 90% who decide to terminate after a prenatal diagnosis of Down syndrome, then I have done my job.

Be excited. It's Down syndrome awareness month.