Tell me how you really feel (part 1)

(This post is being divided into 2 entries, because it is super long. Longer than I intended it to be, yet not everything I want to say.)

The last post that I wrote… it wasn’t supposed to have ended the way that it did. There was more I wanted to say as to why I haven’t been blogging as much but I just couldn’t get it out.And its just been boiling up inside of me.   

One of the reasons I do not post much is because sometimes I don’t have the same feelings as other parents with children with Ds around Ethan’s age. (I have found as your child gets older, your feelings shift as you get to experience different things in your journey.) But I am just getting to those other phases a little sooner than other parents. NO, I am not saying everyone will feel the way I feel when their kids are older. We all have different feelings and views on our children, Down syndrome or NOT.

I am an aggressive parent. A no nonsense type of parent. I expect A LOT from my children.  I believe in tough love and yes my children better have a reason to cry about if they are crying.  That is just me so naturally I am not any more different with raising Ethan. I expect a lot out of him as well, so screw you Down syndrome because I am not cutting Ethan any slack! Ok I am lying, he does tend to get babied just a tad more than his sisters were at his age, but he is too darn cute. I cave more than I like to admit, BUT I am still pretty aggressive when it comes to parenting and Ds. 

And if you know me personally, you would know how much I love my son. Not only my son, but all children and adults with Ds. I am passionate for the Ds community. I try to support not only the babies and small children, but the adults as well. It is very important for me to support other adults. One day Ethan will be an adult, and I hope others will reach out to support him in whatever he does as well. I can’t expect others to do that unless I am doing the same for other people’s children.

Back in June I attended a fundraiser night to watch our young adults in our Ds association performing some pantomime acts to Michael Jackson songs.  The acts were phenomenal, but the lack of support (from the Ds community) was bothersome. The only other people who attended were other parents of the individuals performing. Everyone seems to get excited when they see a character with Ds on tv or a child in a magazine with Ds, but when actual events are going on in your own town and you have the opportunity to support these individuals from your very own town, no one bothers to show up, is nothing short of bothersome.

 (hard to take a good pic from afar and in the dark... but they were awesome! Standing ovation from the crowd!)

Recently I put together a fundraiser shopping event with an online store that sells Ds awareness items…  it was a  6 week thing! They then donated 15% of the sales back to our local organization… Do you know how much money we made?… $23.  They had 3 sales in those 6 weeks that benefited our organization. An organization with over 1000 people, only 3 people made a purchase. One of those people was me. And I know firsthand how popular this online store is. I have friends buying from there at all times, yet in 6 weeks, I could only get 2 other people to buy from a store that sells Ds items as well as employs individuals with Ds, I wanted to cry. I was simply embarrassed. 

I hear people cry about the lack of community support and services for our children, but I definitely do not see other people jumping up willing to do more. I understand not everyone is in the position to monetary help out, but there are so many other ways other parents can make a difference. Speak up, spread the word, advocate.

That day, I simply sat at my desk for hours. Not able to comprehend anything after that. At that very moment I was at to the point of just giving up. If other parents don’t care, why should I care? But then one look at my amazing son is enough to keep me fighting and pushing. And by fighting for him, I might just win one day… and not only will we be the only ones winning, but the entire Ds community. You might just thank me for my aggressiveness later on.

(to be continued!) 

 (just some sun set pictures... always brings me peace.)

I can breathe

One of my main reasons I started blogging was because I felt so much inside. I had a variety of feelings that had built up inside and new ones accumulating on top of those. At that time, going to friends or family members just seemed pointless. They had no idea what my heart was feeling. There was no way they could possibly understand whatever initial shame, disappointment, grief, and LOVE I felt or was feeling. 

This blog became my outlet. 

Then my next mission then became to show everyone how “normal” our lives were… then recently I realized that maybe our life wasn’t so normal after all. But it was OUR normal. And I was more than satisfied and content with that.  My life… our lives are genuinely and uniquely different. 

And as Ethan nears two years old, I have grown a lot. And I have had many epiphanies along the way.

Now, I am not so easily offended by many things I once was when Ethan was under a year old. I’ve learned that not everyone means to offend you. I’ve learned that not everyone can understand, and not everyone is willing to nor do they care to understand your circumstances. You learn to roll with the punches. You learn when to speak up and when to let things go. Your best friend sometimes is no longer your best friend. And those friends you lost communication with over the years, appear in your life again to offer and show you their support.

Old friendships are rekindled and new friendships are made. You meet other people you would have otherwise never met. They become family.  Your future is being rewritten. 

For the first year after Ethan was born, I would cry whenever it was our turn to talk about our son and our experience. Not necessarily because we were sad, but the immense feeling of love was so new to us. Now I can easily hold a conversation and not one tear is shed. It’s still an immense feeling of love but you learn to have control over your feelings, whether they are sad or happy ones. You are stronger now.  Your Heart still leads you, but Logic remains right besides your Heart. 

Most importantly you know you are not alone. 

Those gloomy dark days don’t exist. Maybe there will be days when there will be dark clouds over you, but never to the extent of those first days or months. 

The cold hard fact of Down syndrome aren't so scary anymore, or at least you learn to make the best out of it. It TRULY isnt the end of the world. 

I can breathe…with ease. And if you are new to this journey, I promise you too will be able to calmly and collectively breathe one day. Whether it be tomorrow, next month or the next 12 months…

Erika

Happy (BELATED) BIRTHDAY - To Meee

Somebody rained on my parade yesterday… but had my day continue to have been full of sunshine and birds tweeting, this is how yesterday’s post was suppose to have gone (please note, today is DAY 7):

         

Day 6 of this 31 posts for 21 (T21 – AKA Trisomy 21 – AKA Down Syndrome), where I post every single day in the month of October (October is Down Syndrome Awareness Month).

And not only is it JUST day 6, it is also my 29 28 BIRTHDAY! Or something like that. Yup, it is!

And another thing today has been is a GREAT day!

I woke up this morning, and I didn’t have more extra wrinkles than the day before! A gray hair didn’t just stand up straight in the middle of my head. And I definitely do not look a WHOLE year older than yesterday.

And I was ALIVE and in great health, and so where my kids and my husband!  

Every single morning, it is a ritual in our house, from my bed I yell out “GABBY, WAKE UP” .. every morning, she replies with a sleepy, “ok – I’m up” but today, without sparing me second after my holler, she replied in her usual sleepy voice “Happy Birthday Mom”.

My little girl loves me. (Both of my girls love me.)

Andrea made me a beautiful birthday drawing straight from her heart and Gabby gave me a card. I was unable to open it till I was at work. Once I was comfortably sitting at my desk at work, I carefully opened the white envelope with lip gloss kisses on the front… that now looked like grease stains. …It filled my eyes with lots of happy tears.. You know what, I think I (and daddy as well) have done a great job raising this kid.

Today is full of a lot of “and’s” that is for sure.

….AND I even made the perfect choice of wearing stretchy pants today, cause guess what, my dear friends (they are more than just coworkers) made sure to keep me well fed today!

I was brought a huge yellow cake with chocolate frosting made  with real Hershey’s!!! AND I was taken out to lunch and overstuffed! AND my coffee was brewed and ready to go, for both the morning and afternoon coffee breaks!

…you hear that, that is my heart, full of love, beating rapidly with lots and lots of love.

I misplaced my wand today. That was a real bummer. I think someone hid it from me so I wouldn’t be sneaky with it. Today, with that wand I would have turned those coffee cups into margaritas!

I have learned a lot in the past 20something (haha- yeah 20SOMETHING is right) years of my life.

I’ve had a rough life, I wont sugar coat anything, but if there is one thing I know, it is that this past year has been the greatest of them all. AND I only anticipate them to getting better.

Happy Birthday to ME… AND may the next 20something years be just and even more amazing.

(pics to be added later)