Saturday, June 25, 2011

Blog Envy

In the world of multi-media, we're all growing accustomed to the varying methods of reaching each other, staying in touch, and having instant access.  When I started this blog, I barely even knew what a blog was.  I simply knew that I needed to write, since journaling has been my primary method of coping with my life since I was about 12 years old.  I felt strongly that I wanted this "journal" of mine to be public, because in my moments of darkness in December 2010, what I felt most strongly was a need to reach people who I had no idea about.  I wanted to reach people who know what it's like to raise a child with special needs because they themselves do it.  I wanted to reach people who have never had any type of special needs reach their inner circle.  I wanted to be accessible for people to say, Hang in there. I've been in your shoes. It's going to be okay.  And I wanted to be accessible for people to say, Wow.  I had a lot of pre-conceived ideas about what it would be like to raise a child with Down syndrome, but your family dynamic doesn't look a whole lot different than my own. I had a mission statement.  These days it seems everyone has a blog.  I'll admit, I kinda love it.  It's like your own personal calling card.  Background?: Blue. Header?: Picture of the fam. Font?: Caetalano. Music?: Yes...No...Sometimes...Oh what the hell- Yes! Why not?!  My blogger calling card style is limited, though.  (Remember- I had no idea what a blog even was just 18 months ago.) Even though I grew up in a household where we had computers even before there were personal computers, and I am comfortable navigating my way around one, I really am clueless when it comes to graphic design and web design. Clue. Less.  So, I have to choose my limited template choices wisely. 

This topic is on my mind because I was messing around with my own blog settings and took some time to catch up on some blogs I love to read.  The feedback on my blog has been pretty good.  Even great at times.  Even mind blowing at times.  But, I haven't spent a lot of time trying to get my blog "out there" and I've seen the backlash that comes with the high profile blogs.  Particularly when they will hit upon "hot topics" now and again.  A "friend" of mine, who I know only through the internet and who also has a baby boy with Down syndrome recently took some unwelcome "heat" for a few simple statements about her experience in an open-forum, largely followed blog. She didn't make a statement that could be debated.  She didn't start drama.  It was simply stated as her name, Mother to a child with Down syndrome and a few details of her experience.  The article itself is a bit of a "hot topic".  It is about the release of a new pre-natal test that could indicate as early as 8 weeks whether the baby has Down syndrome or not.  I clicked on the "Comments" section to see what already hundreds of people had to say...thinking that some would probably say what I was thinking...I couldn't have been more wrong or more shocked.  I stopped reading at about comment #35, when the only comments were those that praised the new test, because "We, as humans, need to stop making room for problems for our evolution." Yeah. I quote. Then again, that commenter's screen name is "Raised by Wolves" go figure. There were many comments degrading the "Right to lifers" and how they were probably going to come out in droves on their high horses.  I stopped reading at comment #35, and no high horses had appeared.  Only people who saw people with a disability as "less than", "unworthy", "unlovable", and "problematic." I stopped reading not because I was devastated...though, I was just a little bit.  But, I stopped reading because I realized just how important my little blog is.  One reader at a time, one blog post at a time, I will continue to relay in the most REAL and honest way I can, what my daily concerns, victories, grievances and inspirations are.  And one reader, one post at a time, I might get the chance to change someone's mind.  Have you heard the tip that if you are attacked, mugged, or worse- that you should immediately start humanizing yourself by saying some personal things about yourself? Things like, "Please.  I'm a Mom. I have two little boys- Christian and Elijah.  Christian is 4 and Elijah is 1.  They love me like I am the sun and the moon."  ...Gotta admit.  Even just writing something like that puts chills in my spine.  The point is that police officers have identified that personal information like this humanizes someone and can often stop an attacker in their tracks.  Though some of you may think I'm reaching with this- I think that educating people about what life with Down syndrome is like is the same: it is about humanizing someone.  It is about sharing what their likes and dislikes are. What their general temperament is like.  How they contribute to the family.  Think about it.  Has my blog and knowing me (if you do) changed any of your views?  I know my own views have changed as a result of living with Elijah.  I had pre-conceived ideas too...and maybe I even still do.  I don't doubt that there will be ways that Elijah will surprise me along the way.

So, I can mess with my headers, try to change my backgrounds (in vain) and curse my lack of any kind of web designing experience, but what I will remember is that it was the content of my blog that was and is most important to me.  It is in the content of sharing what's in my heart that has healing power for me.  Not all will accept it and some will even judge it.   I love reading other people's blogs.  I stick around for those that I'm even a little envious of.  Sometimes it is the fancy background and header that initially get me, but usually it is the content of their words that inspire me.  So I'll take the good blogs and the bad, but I'll save my blog envy for those with real content, real insight and real inspiration. 

Blog Envy? Yeah...get some!

Monday, June 20, 2011

Finding Fulfillment

I said a final goodbye to my friend Keren on Friday morning at her funeral.  I won't go into detail about it here in the event that any of her friends or family that weren't in attendance make their way to this blog, as I don't want to upset anyone further.  I'll simply say that the funeral was pretty traumatizing.  As a result, I have been trying to recall all of the fun that Keren and I had.  Ultimately I have nothing but fond, beautiful memories with her...the only thing that upsets that balance is knowing how much pain she was in and the thoughts of her final burial. In the midst of doing regular life, I am occasionally assaulted by wonderful memories of her.  I remembered just yesterday a hilarious experience we shared:  It was New Year's Eve 1999, and I had cleaned my house top to bottom in anticipation of a big Y2K bash.  The decorations were staged, the food was set and the drinks had started flowing. Keren was helping me in the kitchen when a male friend of my ex, walked into the kitchen. He was looking very stylish in a well-fitted black suit.  Keren and I commented on how great he looked (it's always fun to have people get dressed up for a party).  He asked if there was anything he could help with.  I said, No, but thank you and he turned to leave. When he turned around, Keren and I saw in shock that his entire back was covered in white cat fur.  I mean COVERED, as in, one side of his suit was black and the other was completely white.  I realized with horror that I had cleaned everything, but forgotten to lint roll the couch!!!  Keren and I burst out in laughter.  He quickly turned around and asked, "What??!"  I tried to contain my laughter while I said, "Here, you've got a little cat fur on your back, let me lint roll that for you!"  Throughout the night, everytime I would catch Keren's eye, we would crack up.  She was so good like that.  She could appreciate the funny things in life.  So, this and many other memories will be the sum her for me.  I will always remember her, and she will always be able to put a smile on my face.

Losing someone close to you- especially to suicide- makes you reflect on what makes you happy, what makes a person feel fulfilled. In thinking about this, I found some inspiration from what doesn't make me feel fulfilled.  I don't compare my life to others.  I just don't go there.  People's life from the outside may be painting a far different picture than what is happening on the inside.  There are a lot of people out there who have more money than me, for instance.  It just doesn't do me any good to think about how they might not have to clean their own house, or how getting a babysitter is never an issue about whether or not they could afford it. The reality is, I spent about 8 hours yesterday cleaning and organizing my house.  Is the act of cleaning fun? No, not really. In fact, sometimes it outright sucks. However, when I was finished I had an incredible feeling of fulfillment and competence. I did this. All by myself, I did this.  Of course, if we won the lottery tomorrow, I might rush out and hire someone to clean my house on a regular basis.  I mean, I'm not stupid. Not having to do some of the grunt work can mean more time for the things you want to be doing.  What happens when you only have to do all of the things you want to do, though?  It seems like it's easy to end up feeling like something is missing.  Perhaps this is why the Real Housewives really don't seem happy at all.  For me, the answer is in the work. Doing community service, doing your own hard work with the kids, the house, putting projects into your life that require a little back breaking physical work.  Because there is nothing like getting through it and saying, I did that. Just me. And damn, it felt good.

I had heard from other parents of kids with Down syndrome that "You will celebrate each milestone even more than you did with your firstborn- you'll see."  And they were right!  We have to work harder to get there, but the reward is greater too.  So, I work harder with Elijah than I had to with Christian for him to achieve his milestones, but is it harder to raise Elijah?  Is it hard? No. Not at all.  A friend once told me, "You know, you can vent to me about anything.  It would be okay for you to just break down and say, 'This is so hard'."  I had the sense that she meant to say that I was covering up some hardship about raising Elijah. Putting on a brave face.  I answered her simply, "Thank you- I will." I don't need to break down and say that raising Elijah is so hard, because it's NOT.  I know that is probably hard for some people to believe.  That many believe that raising a child with special needs would be the hardest thing in the world.  It's really not.  There are things that are hard in my life: finances, changing insurance, paperwork for said insurance, losing a friend, etc.  I might break down on any given occasion and say, This or that sucks. It's just hard.  I have done that and I will continue to do that. Maybe I am this "Rock" that some of my friends think I am, or maybe...just maybe, it's not as hard as they think.

Maybe at the end of a hard day, the reward...the moment of I did that is worth every moment of hard. Leaving me with...Worth it. Fulfilled. Happy.


Tuesday, June 14, 2011

Dear Keren

I lost a friend last week.  I got a message asking if "I had heard the sad news about Keren?" I quickly went to her Facebook page and saw posts saying things like I will always miss you, You will always be a light in our lives, We will meet again, etc.  I was devastated.  Tears streamed from my face as I thought that Keren had met some untimely death due to cancer or some such illness that takes life quickly from someone you love.  I even had a moment of "Why didn't she tell me?" What I found out just moments later, was that Keren had taken her own life.  She suffered for many years from chronic intestinal inflammation and got to a place where she just couldn't handle the pain anymore.  My heart is heavy knowing how much pain she was in and how she thought that death was her only relief. 

Yesterday there was a memorial service for Keren.  I couldn't get a sitter for both boys and ended up having to bring Elijah with me.  Since it was at a residence, there were many people with their young babies with them.  When I walked in, there was a book on the entry table for everyone to write notes to Keren in. My note was lame.  Really...I probably made an inappropriate joke, and the reality is that someone (other than Keren) will read these notes and most likely think, How tacky. Can't you write something sentimental?  But it was what I thought at the time.  It was what I know Keren would have laughed at and agreed with. Besides, what do you really say?  There is no perfect thing.  As I lifted my eyes from the book, I noticed some snapshots scattered on the table.  The one just in front of me was a picture of just her and I. I lost it.  We looked so young and so innocent.  So blind to what the world is. 

Keren and I met in 1994. She was friends with some of my (now) exes friends and we hit it off immediately.  Our friendship spanned three marriages (mine, hers, mine again), two divorces (mine, then hers), finding ourselves, countless jobs, apartment living to condo purchasing to buying a house, the death of a pet and everything in between.  I considered Keren part of my "Rock".  My Rock is the small group of girlfriends who I trust with my life.  The ones that have been through the best and hardest parts of my life.  The ones that have never judged me.  The ones that have been a shoulder to cry on and a hand to grab when you're laughing so hard you think you might actually pee your pants.  The ones who I have never, NEVER had to doubt.  Not for one second. 

Three of my "Rock":

(From left to right: Me, Kristi, Keren, and Larissa)

Last night at her memorial service I had hoped to have an opportunity to celebrate her life, to reminisce about who she was and what she loved, and to try to understand why her life would end so young. I had hoped to begin to process the end of that life.  Unfortunately, it was none of that for me.  After an hour and 40 minutes of no eulogy, no speeches, no ceremony of any kind, I grew impatient and tired of the chit chat (that mostly had nothing to do with Keren) and excused myself by saying that I had to get Elijah to bed.  Mostly, I just didn't want that. Chit chat. About nothing.  I wanted to grieve.  I wanted to laugh.  I wanted to honor her life.

Apparently, there was a memorial service, eulogy and some stories after I left last night- which is a complete bummer to have missed.  So, I'm left having to grieve on my own.  I decided to write something, since it has been my most successful form of processing.  I decided to write a letter.  It won't be perfect, or eloquent, or "say the right thing", but since there is no perfect thing to say, I'm going to say something anyway:

Dear Keren,
    I am so sad to lose you from this life. My heart is so heavy that you were in so much pain.  I remember how you used to cry when you went through your first bout of your intestinal you couldn't even painful it was for you. I felt so helpless.  But, the first thing you should know is that I am not judging you.  I know how much you hated judgemental people and how much you would double check with me and other friends that we weren't judging.  So, I am not judging you.  I am simply sad that you felt that this was the only way out. 
    I want to thank you for being such a loyal, supportive, loving friend for so many years.  I can't believe how much we went through together, and how much we grew up together.  I will always cherish our hiking days.  I loved our standing dates at Tree People to hike, talk and take in the sounds and smells of nature.  When my relationship in my 20s was a complete nightmare, you never told me you were sick of hearing about it--you just listened and then told me what a jerk he was (haha..which was always exactly what I needed to hear at the time.) Then, when I was back in "love", you accepted that too, with open arms.  No one is like you.  I don't know if you realize how full of life you were.  You might have been more full of life than anyone else I've known.  Even though I know you were trying to "find yourself" after your divorce, I always secretly loved that you'd just take off at a moment's notice to travel the world and meet some "stallion" of a man that would help distract you from whatever was bothering you.  I loved that you loved food.  And I'm so sorry that your condition made it so painful for you to eat.  Last night at your memorial, there was food from Carnivale- one of your favorite restaurants.  I know you must have been loving that.  Even Elijah thought the Babaganoush was delicious!
     You know, you were really on my mind just a few days before I learned of your death.  In fact, I visited your Facebook page and looked around a bit.  I intended to leave you a message...but I got distracted and hadn't thought of just the right thing to say.  I wish I simply would have said, "I love you. Thinking of you. Your friend, Jen". I am having a hard time because if I would have known that I would only have this much time on earth with you, I would have packed in more dates, more dinner parties, more surprise parties, more sushi, more Pita Kitchen, more hikes and more hugs.  But, I also know deep in my heart that if you were here, you would say to me, Please don't worry, Jen.  I know you love me and you know I love you.  
     I will miss you always. I will remember you always.  I danced for you tonight in ballet class.  I thought I would cry, but instead I smiled.  I really smiled.  I hope you are at peace now, my friend.  I am glad you are no longer in pain.  You were a blessing in my life.
Your friend forever,

Wednesday, June 8, 2011

Summer Inspiration

I'm probably feeling a little big for my britches right now.  I had one of those amazing, everything-fell-into-place days, where I got an insane amount accomplished, but managed to have some fun too.  As a result, I'm feeling inspired.  It's almost summer.  I tend to giggle just a little at the sound of that, because "summer" is reserved for people who go to school  and have a break during the hottest months of the year.  I...being a work from home Mom, do not really have the luxury of a "summer".  However, I am still lured by the idea of a hot, lazy day, consuming watermelon while watching the kids play in the backyard, and a time where less of our minutes are jam packed, scheduled minutes.  Today was Christian's last day of his first year of preschool.  It hadn't really sunk in until I pulled all of the art projects from his over-sized envelope, with his name written in black Sharpie on the front. I'll admit: I was slightly impressed that my big boy actually completed enough art projects to even have an over-sized envelope.  Christian is definitely more of the run and play and build type, than the sit down and have interest in an art project.  I'm not worried, though.  He comes from a family of artists, and I am confident that one day, his inner artist will reveal itself. We'll see. For now, I was tickled by his execution...


I, however, seem to get the most artistically inspired during the summer months. Last year, I tackled the mini living room make-over. This year, while we're working to clean out our garage, I was inspired by this old chair. I intend to paint and recover the cushion to turn it into a fun, new office chair. Time for a mini change.


I don't know what it is about re-working old furniture that has always made me me...I can get lost in my ideas of paint colors (turquoise?...burnt orange?...,) the work of tackling it, and then the satisfaction of standing back, admiring the work, and taking pride in the fact that I did it all by myself.

The most frequent question I got this week was, "Is Christian doing Summer School?"  When I replied no, it was followed by "Camp?" ...Nope.  Don't get me wrong...we'll do stuff.  But, I'm kinda of looking forward to the type of summer where we wake up and decide to hit the beach or the zoo or plan an impromptu playdate.   I want my boys to have things to look forward to but also to have some much needed unstructured time also.  Elijah has been making great progress lately.  It seemed that after he hit that One Year Birthday mark, he had some catching up to do.  He is finally starting to sit pretty strongly.  He still has a tendency to arch back when he gets tired (and his back is stronger than his abdominals), so I have to keep a pillow behind him if I'm not sitting right there.  But I'm encouraged...and inspired to work with him even harder. We started working on even bigger, less mashed up foods this week and are trying to encourage his crawling to be a little more disassociated movement rather than the synchronized arm pull/ toe push military crawl he does.  It is really adorable, but as our PT reminds him, "Cute is not going to cover everything."  :)  

Actually, "cute" does cover an awful lot though...

It took a day filled with lots of little accomplishments with a large helping of fun to get me thinking and inspired about summer.  It doesn't hurt that these are sitting on my dining room table...


Wednesday, June 1, 2011

Balance. ...Balance?

Wow. Life has been busy!  I am having a resurgence of my event design business.  It never went away, but between my last trimester of pregnancy and Elijah's 1st Birthday, I had been very choosy about what events I could handle taking on.  Then, after you've been choosy for...well, 5 minutes, actually, the momentum of your business starts to slow down.  Out of nowhere, I've been getting calls like crazy for more Bar and Bat Mitzvah work- which has always been a huge portion of my business.  I actually love doing these events because they are for kids, and therefore are usually FUN, and since their parents are paying -and have probably been through at least one big event (their wedding)- they know the general parameters of what an event costs.  It's nice.  But, I haven't quite figured out how to manage it all, and when it rains,  it pours.  So, I have been scrambling to meetings and writing lengthy, extravagant proposals in the hopes that I'll land some of these jobs.  I got the first turn down today. Basically, the client couldn't afford me.  That's okay.  I gave her an amazing price (probably better than I should have anyway) and I can't work for free.  So I try not to be irritated that I spent so much time for nothing.  Cost of business, right?  Except when the cost of your business comes at a slight cost to your kids too.  That is tough.  It probably meant a little more TV for Christian and a little less active Mommy playtime for Elijah. As a result, I'm working on having "clocked out" hours too.  Today, I powered through a proposal while Elijah napped and Christian played with the water table.  I wasn't quite done with the proposal by the time Elijah was stirring and Christian was hungry for attention, so I put the proposal on hold, put Elijah into the swing and between swing pushes let Christian help me water some plants.  It felt like...dare I say it? Balance. For just a moment.

Balance has been on my mind lately.  Elijah and I went back to Club 21 last week for the 0-3 age playgroup.  It has been awhile since we've gone- between the drive time (45 minutes) and scheduling, we haven't been there in many months. The Physical Therapist who volunteers his time there once a month was present and I was excited to see him.  He hasn't seen Elijah since he was practically a newborn.  Elijah LOVED it!! He was so interested in all of the people and the other babies!  He and another baby boy, Ricky, were so interested in each other and kept scooting closer and closer until they were nose to nose and practically kissing.  It was so cute!  There was head grabbing and arm holding and it was adorable.  Elijah isn't doing as much, physically, as some of the other babies his age, but he is interested and engaged and motivated and it is really fun to see his wheels spinning!  However, there is one dynamic that I find almost every time I get around other parents who have a child with Down syndrome: It is the concern about services.  Are you getting enough?  Are you pushing for enough?  How many times a week does he have PT? OT? Speech? (Oh! By 18 months he should be getting speech...) Infant Stim? Then there is the added anxiety when you know people in other states (states with more money for services) whose kids are getting 3 times the amount of services we are.

What to do?

I take it all in and remind myself to listen to my instincts. And my professionals.  Do I think Elijah is getting enough therapy?  Do I think that more therapy, given my schedule with my older son and my jobs, would be more beneficial or less? Right now, our 3 times a week sessions do feel like the right amount.  I remind myself that at the end of the day, it's not how many times he has worked with a therapist that will matter- it will be how many times during the day did he get to do things that were beneficial for him?- with me and on his own.  I know that what I do with Elijah, just as part of our regular routine, and the more focused "play" times I do with him matter the most.  This, of course, has it's own pressure.  Am I doing enough?  If I did more would he be more? Do more? This is where I take a deep breath in and ask myself  to go deep inside- Do I believe that Elijah is well and happy and cared for and getting what he needs?  The answer is definitely Yes.

I believe in balance.  I have two children. They both need quality time with me. They both need quality time with Charles. I need time for "me" so I can have that quality time with them.  I need quality time with Charles so that we can do the day to day as a team, without losing our minds (still working on this one.)  :) Work needs to happen- for both Charles and I. And we all need to be taking care of ourselves physically and mentally as well. It seems like a long list, and it is.  There are days that I feel like I'm failing at it all, but there are also days where I feel like we're making a great go of this thing called balance.

In this busy time, I'm looking at the places in my life where I feel drained of energy and the places in my life where I feel filled up.  Every now and again I have to have a talk with myself and remind myself not to over-commit. I also have to have serious talks with myself about where I've been wasting valuable energy- on certain people, places, and things. I'm working on putting it all in check.

It's called balance.  It isn't something that is achieved one time and then you're done. It's about finding it and sustaining it.  I teach this every week in my ballet class, and it's something I can only give my students so much insight on.  I can teach them some of the tricks to finding a balance, but ultimately it's something you have to Feel.  Once you feel it, you get better and better at sustaining it.  So, I guess today- despite all of the chaos that is swirling around my head- I "felt" just a little bit of balance.

My inspiration for working to sustain balance? These guys...