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Friday, April 11, 2014

Frustration and Love


      Today was one of those days.  Really just this afternoon.  I thought napping while Ari naps was a luxury for this pregnant mama, and it is, but I didn't realize it is also a bit of a necessity.  Ari decided not to nap today, as often happens on Fridays when he takes a 10 minute snooze on the way home from "school."  So, mama didn't get a nap either.  Instead, I spent the afternoon grumpy, tired, impatient, nauseous, frustrated, and brought to tears by nothing.  

      I hate when I get frustrated with my child.  I long for more patience and understanding, and sometimes I just feel like a downright crumby mother.  I know it isn't true, but sometimes it really feels that way.  Thankfully, children are quick to forgive our shortcomings.  Ari might have sensed that I was upset with him when I took a breather on the couch.  He climbed up, with a little boost from mom, and proceeded to give the sweetest hugs to my face.  How can I be mad when I feel that love? 

      It worries me that he seems to completely ignore my requests, especially when he is walking at a running pace toward the fish pond in the backyard.  It's hard to keep my cool when he is in danger and won't even turn to look at me as a call for him to "stop!"  And as my belly grows and I seem to injure myself more easily,  I wonder how I am going to manage running after him and carrying him around as the months go on.  



      I have all these thoughts that bring me to tears, but by bedtime, things feel more manageable.  I stare at him as he falls asleep in my arms.  I stroke his tiny, perfect toes and imagine the cells that formed inside my body to create them.  I think about who he is and how much I love him.  It is absolutely overwhelming.  And I realize that none of the other stuff matters.  He couldn't ever frustrate me enough that I would stop loving him.  He is the miracle of life.  His existence is my whole world.  This is a tough stage in life, and in some ways it will be nice to get past it.  But, I know I will also miss so much about this time, right now.  So tonight I will focus on those things.  The way he learns something new every day, the way he pronounces his first words, the way he says "mama" as he grabs my face into a hug, the silly faces he makes, the way he plays "peek-a-boo" by covering his ears, the way he walks, the love he has for music, the way he always makes us laugh.  There are so many more things to remember about right now, and I don't want to forget any of it.  


Saturday, March 15, 2014

A Birthday Ramble

It turns out this blogging thing is hard for me to keep up with.  Maybe there will come a day when I can write a post weekly or even daily, but for now I will continue to write when the moment calls me to.

Today I feel pushed to write because this is a very special day in my family's life.  Today we celebrate the 2 years that Ari has been on the earth.  I can't think of any day more worthy of celebrating!

It's amazing to me that times of anguish in life often become memories that I want to remember. There aren't many moments in life when our hearts are ripped wide open.  The opportunity to truly feel deeply is one I want to recall every now and again, if only to remind myself that my heart has that capacity.  Without the grief, my heart never could have opened up enough to receive the love that my son was bringing into it.

After we found out our new baby had Down syndrome, I knew our lives would never be the same.  What I didn't know was that I would be thankful for that fact.  I pictured the worst and all we have experienced thus far is the best!  Ari teaches us everyday that he is more capable than the world would give him credit for.  He teaches us compassion for others who are different than us. He helps us learn patience as he learns things on his own timeline.  We are so excited to see how he will help shape his sibling, who is due in September, into a most loving and understanding person.  I wish I would have had someone like Ari in my life growing up.  I encourage you to befriend someone who might ordinarily avoid because they are different.  You would be surprised how much you can learn from them.





One of the things that helped me get through our first days and weeks was reading Kelle Hampton's blog and book.  I read her story of a birth diagnosis, much like our own, and felt so much less alone.  So many parents share the feeling of fear when receiving the news and many people don't know where to turn.  At first, it feels like you are the only one who has ever gone through this.  It can be extremely isolating.  In the last year, I have been honored to contribute to a wonderful project.  It started as an idea to put together stories of diagnosis and submit it for publication.  The publication part hasn't become a reality at this point, but a lovely website has been set up so anyone can access this information.  80 families from around the world submitted stories and pictures  about their journey through the diagnosis of Down syndrome.  What I like most about this collection is that it is divided into sections based on when the diagnosis was given.  So whether a family was surprised with it at birth, like we were, or if they find out prenatally, they can find stories that relate to their situation and hopefully find comfort and direction.  It's called "Unexpected" and can be found at www.missiont21.com
The website is up just in time for World Down Syndrome Day, March 21st.  Please share with anyone who could benefit from it.

Now I will go snuggle my two year old and cry because the time goes by too fast!


Picture courtesy of Virginia Stiles Photography

Tuesday, November 5, 2013

Let's make a change.


A common topic among those of us in the special needs community is the use of the word "retard" or "retarded" in a non-medical, non-musical, but slang sense.  Of course we know, as a society, that using the word towards or at someone with an intellectual or physical difference is hate speech; where we are divided is regarding the use of the word in everyday life as a slang term meaning stupid, unintelligent, idiotic. etc.  It is thrown around with such frequency and is so wide-spread, that people have begun to accept it as a normal and acceptable term to use.  This is especially true in our younger generations who are growing up hearing it and not being made aware of the fact that it is not appropriate.

I used to say it, and I am ashamed to admit that is took the birth of my son to change that for me.  I wish I would have know someone with an intellectual difference growing up, or that someone had told me that it wasn't right to say and that it actually hurt people who heard it.  I would have listened and changed.  I, like most people who haven't been educated about it, thought "everyone says it!" or "I don't mean it in that way."  I try to educate people now, and most are extremely receptive and apologetic, understanding of my feelings.  What I have a very hard time with are the people who get defensive and mean, telling myself or others that we are overly sensitive and ridiculous to fight against this word.

Sephora is marketing a product that has brought these insensitive people out of the woodwork.  It has also provided an opportunity for the advocates (parents, siblings, and friends) of someone with special needs to try to make a difference.  Kat Von D, a tattoo artist, designs a line of makeup specifically for Sephora.  This week, Sephora actively marketed a lipstick by Kat Von D named "Celebutard." Wiktionary defines this word as a "blend of celebrity, debutant, and retard," or "a celebrity viewed as unintelligent; especially a celebrity who behaves badly in public."

Sephora's Facebook page and website have been slammed with comments and requests to take the product off the shelves or simply rename the shade of lipstick.  They haven't yet taken any action to make it right, but we will continue to fight to make it happen.  We can't make the whole word stop saying this word, but this is something we can do.  Naysayers tell us we are overreacting.  They ask "what does it matter anyway?" As Kat Von D herself responded, "It's just a F***king lipstick."  Yes, it is.  But that fact remains that every time something like this is allowed to be marketed and sold, the R word or the use of it in mash-up terms like this, just perpetuates the idea that it is somehow funny and acceptable to say.  And as a friend of mine asked, "can I not even go and buy makeup without having to hear that word?!" I want you to know that I am not getting involved in all of this because I like to fight about stuff.  I assure you that every time I hear the word used, it feels like a stab to my heart.  Truly.  It hurts.

Ari is going to have challenges in his life.  We live in a society that doesn't always see his value as a human being.  He will work harder than most to achieve his goals and he will be doubted at every turn. He may have additional health concerns to face in his life.  Does he also need to fight to live in a world where he doesn't constantly hear a word that demeans and hurts him?  Really?  So, maybe this seems to some like a battle not worth fighting, but it is one I can fight, and I will do anything, no matter how silly some might think it is, to change the world he will grow up in.  He deserves it.






If you would like to help in this cause, you can sign a petition here. Update: The lipstick has been pulled from the shelves.  Here is an article about it.

I also found a great video today by Robb Scott.  It is a spoken word poem he wrote for his son.  You can see the video here.  I wanted to post the words here as well. Enjoy! And please spread the word to end the word!


Breakin' Labels - by Robb Scott

Retard!

It's a word you woulda heard me use a lot,
to describe my thoughts on a rotten situation.
Like that attack on Iraq - that lacked any facts, 
I sat back and said "now that's a retarded altercation".

I didn't use the word as a way to demean or be seen as being hateful.
Only to let you know you ate your weight in stupid,
and you still got a plate full.

So it was ok. It was playful.

But I didn't realize, tied to the other side of that word,
was a slur and people cried when they heard it.
I was oblivious to the insidious nature of the term.......

but I was about to learn it.

When my wife gave birth, there was no plan to rehearse
for the worst, no test for this lesson.
I was stressed and confused, I cried at the news,
This ain't the son that I guessed I was getting!

He's ailing and sick and thin as a stick,
he's too frail to even come home.
They said he'd be slow, success would be low, 
and oh! he's got Down syndrome.

And that's when it all changed....

and I became estranged from that word you heard me use a lot,
my son was the one who rearranged the plot.
and taught me words aren't after-thoughts,
they're weapons -- they're used for good or not. 

So I got to build him an armoured heart,
so this word won't rip my son's apart,
but I don't know where or how to start,
and that right there is the hardest part.

Because I can't protect him.

So I expect when he roams this world alone,
he'll find this word under every stone,
he'll flip it over and bring it home,
and go over it with a fine tooth comb.

And he'll examine all the ways it's said,
the nouns, the verbs, the adjectives.
But I hope at night when he goes in bed,
this word won't stay inside his head.

Instead, 

I hope he dreams of this scene in France,
where he sees the word and they exchange a glance,
he extends his hands and takes the chance, 
and asks the word, "would you like to dance?"

And they prance, and play all day and get dirty, 
spread their wings and sing like a birdy,
Then he tells the word, "I know that it's early"
"but I got to go now that I know you can't hurt me."

And then he goes, and shows the world what we see,
a heart so big you'd hardly believe me,
and though I know it won't be that easy,
he'll break these labels, so he's able to breath freely.



Wednesday, August 7, 2013

A Happy Post

Since Ari entered our lives, I have seen the best in people revealed.  On the other hand, I have also seen the worst.  It is unfortunately much easier to focus on the situations that make you sad and disappointed in humanity;  The woman staring (without smiling) at your child, the comments made on social media, the “r” word being thrown around you carelessly, the stories of people saying terrible things about “those children.”  So tonight, when all I want to do is cry over hearing such a story, I am going to focus on the positive things that have happened lately instead.


I will start by telling you about the wonderful opportunity I had to attend the National Down Syndrome Congress Annual Convention.  A great friend flew into town to support our family and help out where she could.  We were able to attend workshops to better educate ourselves on the vast array of topics regarding parenting a child with Down syndrome.  I think, however, that we got the most out of the social aspect of the weekend.  Upon arrival on Friday evening, I felt a gush of love and pride seeing the convention center and surrounding area filled with others like us, many who have been on this journey for a long time.  I felt like we were getting to meet our new family in a way.  Seeing all these individuals and families walking on the streets downtown, it felt like we were the “norm;” not the minority.  It was quite amazing.


We were able to socialize with many other families and even got to meet (in real life) some of our friends from Instagram.  If I haven’t mentioned it before, my Instagram community is my second family and I am so grateful to have them all on this journey with us! Tim enjoyed getting to talk with parents whose kids were a bit older than Ari, so he could get a better picture of what was ahead for Ari.  




Probably my favorite part of the weekend was the big dance on Friday night.  My friend and I danced and mingled and I teared up every 2 minutes.  I looked around and I saw kids and young adults with Down syndrome who were so happy to see each other, and I saw young couples slow dancing and imagined that some of them hadn’t seen each other since last year’s convention.  There was even a proposal at one point!!  A young man that we were dancing with started clapping and cheering excitedly at the start of a new song.  It was Britney Spears, who he LOVES!!! The DJ spinning the tunes?  Yeah, he also has Down syndrome and he’s awesome.  I looked around me and I saw Ari’s future.  His beautiful, joyful, amazing future and I was overjoyed.  





I was excited to get a hug from Tim Harris of Tim's Place!



The next weekend we took a long road trip up to South Dakota for the wedding of some dear friends and stopped many times along the way, mainly to give the little man a break to stretch his legs.  Once in a grocery store, once at Wall Drug, and once in a cafe, we had people come up to us to tell us how awesome/cute/wonderful our baby was.  They all had some connection to Down syndrome and made it a point to let us know that they saw beauty where others might see something strange and different.  It means a lot to have those encounters.  



And the last positive thing I want to tell you about is a comment that was left on Ari’s birth story.  Here it is:



Hi! My name is Wendy and I am fortunate enough to be mother to Oliver. He has just celebrated his 17th birthday. It is so very simple my dear lady - enjoy and value every moment of this incredible journey you are now on. Your son will be AMAZING and you will have a tie which connects your heart to his with an invisible yet unbreakable thread. Difficult to describe. I have two children, as well as Oliver I have a daughter Anna, now 25 and who was 8 when my son was born. I love my children with every piece of my heart and equally. I would lay down my life or walk through fire for either of them without a moments hesitation. The connection I have with Oliver however goes deeper, right down to the depths of my very soul. I can't describe it any better than that. Maybe one day you too will understand that.


Please have a look at www.facebook.com/OliverHellowellPhotographer and also www.oliverhellowell.com and be enthused, encouraged and inspired by my boy and his achievements. You are still early on in the journey with your firstborn and so may still be harbouring doubts and fears. Please try to both be gentle with yourself - (you are after all only human!) as well as strong and enthusiastic about your son's future because trust me - you will be so so very very proud! Best wishes and love, Wendy.


Well, this made me cry in the best way.  I am so grateful for parents like Wendy who are paving the way for our children.  If you are a parent and have wisdom to share with us newbies, please do so!  It is very uplifting and reassuring for us.  And, everyone, go check out Oliver’s work.  What a talented young man!  He is such an inspiration!

There are more good things happening than negative things if we just keep our eyes open to them!  Have a happy day!



Thursday, April 25, 2013

Ari's First Birthday

I am late in posting this as I was waiting for the edits on the photos to be completed.  My lovely sister-in-law is also a fantastic photographer...lucky me! You can see more of her work at virginiastilesphotography.com

Ari had quite the party.  I would have opted for a small family and friends gathering, but the problem is, we have too many friends! Good problem to have, right?! So, we had an absolutely packed house full of laughter and children and babies, and it was wonderful! I had a hard time choosing which photos to share, so I am going to share a lot of them! 

The theme was "you are my sunshine," because he really is ours.




Singing "Happy Birthday"




He wasn't totally sure about the cake!


    
 

                                         

But he can always ham it up for the camera.





Mama went in for the kiss...and she got it! :)




We had the wonderful performance by my dad of the song he wrote for Ari. Ari accompanied on maraca. I will soon be having him play it again so I can film it and share it with all of you!



I love these of my brother holding my son.



Some more favorites - the latter is Ari with his Grandmas and his Great-Grammy looking on.



I wish we had a picture of every guest! But, enjoy these cuties!








Enough already mom, I'm tired!


Excuse the hand, it was too cute a picture to pass up!



Happy Birthday to my sweet boy! My how time flies!







Tuesday, April 23, 2013

Homemade Almond Milk

I decided to start Ari's transition from breast milk to almond milk instead of the traditional whole milk, at least for now.  Many babies have a hard time processing dairy and almond milk is much better nutritionally.  Almond milk is lower in fat than cow's milk and is rich in Vitamins A, E, and D, and many antioxidants.  It is also free of cholesterol and saturated fat, which cow's milk has.  Although it does contain a smaller amount of Calcium (unless you get the store-bought fortified almond milk), it is more nutritious overall than cow's milk and easy enough to supplement with Calcium-rich foods.  Why homemade?  Because it is easy and fun to make, it tastes so so much better, and the store-bought versions all contain additives and sugar-based sweeteners.  So, let's see just how easy and fun it is!


Take a cup of raw almonds and soak them in water for a few hours (preferably overnight). 


Then rinse them and drain the water.


Now fill your blender with 3 1/2 - 4 cups of water and add the almonds.  


There are many things you can add to your almond milk depending on preferences, but here is what I add:

A small section of a whole vanilla bean


2-3 pitted dates


And a dash of cinnamon


Now blend it up! If you have a Blendtec blender, there is a "whole juice" setting that works great!


Now, you will need to strain the liquid from the pulp (or not- your preference).  For this you can use cheesecloth or what I prefer (and love to say out loud)- a nut milk bag! :)
I use this one.  Pour the milk into the bag over a bowl.


Now use your hands to squeeze the liquid out.  I like to tie the top of the bag so I can really work on it!  I use both hands...but I had to use one to take this picture!


Once you are through, you will have a bag of almond meal left in the bag.  Put that aside...don't throw it away.



I like to put my milk back in the blender at this point for a few pulses.  Then you can pour it into a container (preferably one that seals) I love the ones I bought that have a twist top that seals the pitcher off.  


There was a little left to pour into a glass and sip on.  It is so creamy and wonderful! Seriously, it is nothing like the store-bought kind!


Now, what to do with the almond meal?  You can dry it out by baking it for several hours on the lowest temperature setting on your oven and then run it through a food processor to make almond flour.  This can be used as a substitute to other baking flours or added to oatmeal or smoothies.  If you feel like baking right away, you can skip the drying-out process and put the pulp into your recipe immediately.  Here is a recipe that looks great.  You would probably need to make a double batch of almond milk to get 2 cups of pulp though.  Here is one that takes just 1 cup of pulp, which is about what this recipe yields.  I will be looking for other ways to use this pulp in the coming months.  If you have ideas, let me know!

Coming out of the oven.

After the food processing.


I hope you will try making this yourself! Thanks for stopping by!