Wednesday, October 19, 2011

Life goes on

My life has been a series of unexpected shifts, where I have had to continually check and adjust my expectations.  About 2 years ago, I got the news that my baby boy would be born with Down syndrome, a genetic (read: happens on the gene level.  Does not necessarily mean hereditary.  Just thought I would highlight that often misunderstood conception.) condition which causes mild to moderate intellectual disabilities and developmental delays, which affect things like gross and fine motor development and speech delays. Frankly, I thought my life as I knew it, was over.  I was willing to go for the challenge, but with a saddened heart, thought that all of the hard work I had put into starting my own Event Design and Coordination business would be laid to rest.  I know...maybe it's silly.  But, that's what I thought.  And when I stepped away from all of the random and impersonal Google information I could find, and started connecting via blogs, to real-life families, I started to realize that these people have lives.  They even have big, successful careers in some cases.  I was surprised by that...and hopeful.  I got a shred of hope that I wouldn't have to entirely retire my beloved business. 

Now that my little guy is almost 18 months old, I realize that life isn't all that much different than it was before.  There are some changes- some changes to schedule and more than anything, some changes to perspective. But, ultimately having a business with a baby who has special needs is...well... exactly like having a Baby while having a business.  The special needs part is simply like a few extra appointments on the calendar. I make time for 3 therapy sessions a week for Elijah, and starting next week, that is jumping to 5 therapy sessions a week.  For now, they come to our home and work around Elijah's schedule, so it's not especially disruptive to his general schedule.  I like this time- it's quality time with Elijah, time to learn new tricks from our therapists and a great outlet for me. I realize that these therapists are not technically there to council me, but they "get" what I'm talking about, and that's nice.

My thoughts about how having a child with special needs would define my life are on my mind, because I've had a big week for my business.  A colossal week for my business.  I've taken on a business partner who I know will have as much passion and work ethic as I have had and I am no longer running this one woman (and a few assistants) show! I can actually look forward to the future of the company and begin to put the ideas and dreams I had for it's future into play.  Prior to this week, my brain stopped at how I was going to squeeze a single extra task into my schedule. I used to wonder how and when my dreams could possibly come to fruition when I was doing it all. by. myself. ??? I'm beside myself with excitement.  I have help, I have people I trust, and I'm energized to get it all under way!  We're also starting a blog, which I'll announce to the readers here, so you can follow our progress if it interests you and maybe even get some inspiration for some of your own parties.  Another good friend of mine is going to help me manage that and infuse it with lots of creativity and inspiration, in addition to sharing what fun, new events we've been up to.

Well...that is all for now.  My head is spinning.  I have new logos and fonts on the brain. I have plans for the future on the brain.  I have...too much on the brain and need to work to shut it off for a little while.  Does this happen to you?  The brain spin??  What do you do to calm your brain and settle down? 

Mama needs to get some sleep.... :)

Wednesday, October 12, 2011

Hot Potato

My son Elijah has an issue called "Tactile Defensiveness". It's a sensory "sensitivity", which  is I guess, one way to explain it.  Basically, he doesn't like the feel of certain things in or on his hands.  It's partly why he scoots around on his belly using his forearms and toes, instead of pushing up to a crawl position on all fours.  He doesn't seem to love the feel of all of the weight in his palms.  He does push up to all fours now (newish milestone), but he doesn't use it as a mode of transportation yet.  He eats baby puffs like a pro now, but if you drop a little food on his high chair tray, he immediately swipes at it and throws it off as if to say, "Ew! Yucky! Get that off of here."  It's frankly a little reminiscent of that old game, "Hot Potato", where you have to try to get rid of the potato as fast as possible.  The self feeding is slow going. The day we'll be able to go to a restaurant and plop down a few pieces of fruit, some beans and a couple of crackers and just let Elijah eat on his own will truly be a day for glorious celebration- because it feels like that day will never arrive.  In fact, I looked at our Occupational Therapist this week and said, We have to get him to be able to eat some cake by his second birthday. He will be able to eat cake by his second birthday, won't he? She can't promise me that he will, but she did promise that he'll get there eventually.   That eventually he'll do it all. For now, he's making progress and the progress is huge. (Don't forget to pause the music player at the bottom of the blog before watching the video...)



I don't get a chance to talk about my feelings a whole lot.  I'm too busy. I'm raising boys, running a business, working a job and trying to make enough time for my husband, myself, and my friends so I don't lose my mind by going without free time.  In those times of getting together with my friends and family, I don't try to avoid my feelings or avoid talking about Elijah and how I might be feeling about his progress.  It's just simply that I run out of time.  What's first and foremost in importance to me is the catch up- the fun, reportable news about a new craft project or how hard yoga was last week or the thing that my hubby said that pissed me off (Okay...not MY hubby.  But A Hubby. Anyone's Hubby. The generic idea of a hubby who might possibly piss someone off. Not me, though. ...Not you either. Just need to cover my bases and make sure I point out that these are hypothetical things I might catch up on. You get it.) Since time usually runs out before I can even get to talking about  how I might be feeling about Elijah's progress, I end up saving it for my blog.  It's semi-cathartic to write it all down, and even though I usually don't hear back from 99% of the people reading this, I have some hope that by putting it all out there that maybe I'll give some perspective that wasn't there before, or possibly reach someone who is feeling exactly like I am- because there is comfort in that.  As much help as it is to write it all down though, it's really not enough all of the time.  I need feedback. I need someone to remind me when I'm having a down moment that Elijah is perfect, but that everything is going to take longer.  And that just because it takes longer doesn't mean he won't do it all.  That one day I will look back and think, I should have cherished it even more than I did. But, I just don't seem to have time for these conversations. So, I stay up late with a glass of wine water (...okay, wine), sit down in front of my computer, and then just write.  Usually I'm a little surprised at what comes out.

I made a commitment to myself to be honest and upfront about my feelings on this blog. There is a lot that I censor myself about.  I censor myself because I don't want to hurt people's feelings.  Sometimes, however, I will hurt someone's feelings by talking about my own.  I am not always going to say the perfect thing- in life or on this blog. You are not always going to say the perfect thing either. (Again, a hypothetical "you") We will not always say the right, or the perfect thing.  That is because I am human and flawed.  In the past when I've talked about real-life scenarios for the sake of processing them or sharing them for others to process, I have inadvertently hurt a few people's feelings. I know this because they told me. One person even told me she can't read my blog anymore. This is tough for me. I have a lot of feelings about that, but I'll censor saying why. 

Real life scenario: I hold my breath everytime I go out in public with Elijah, dreading when the question is going to come..."Oh how cute! How old is he?" When I say 17 months, I watch the wheels spinning in that person's brain- adding up why he isn't walking or talking yet. Sometimes people will go so far as to ask if he's walking or running or talking yet.  Usually I just say, "No. Elijah has developmental delays, so it'll take him longer to do all of those things."  I find that strangers handle this more gracefully than the words, "He has Down syndrome so it'll take him a little longer to do all of those things."  I was at my mechanic last week and I had both of the boys with me.  The guys were joking with Christian and admiring Elijah when the dreaded, "How old is he now?" question came up.  Since I actually know these guys a little bit, and Christian even goes to school with one of the mechanics' sons, I gave the whole answer and told them that Elijah has Down syndrome.  They, like most people, didn't know anything about Down syndrome and had a lot of questions/comments.  There was the question of severity. He doesn't seem to have a very severe case of it. I always have to take a little breath before commenting on this one, because I really don't want to come off sounding like I'm trying to school someone or embarrass them or sound condescending. I shared that a person either has Down syndrome or they don't.  There is no level of severity to it. Down syndrome is simply the existence of an extra chromosome in a person's cells. There are varying levels of cognitive ability and some people with Down syndrome can do a great deal with their lives: graduate from college, have a job, get married, while others are more dependent on a caretaker.  The reality is that we just don't know what Elijah's cognitive ability is yet because he's too young.  What I do know is that he seems pretty darn smart to me.  He "gets" a lot of things.  He is interested in and motivated by people, and quickly and easily reacts to them.  I feel that he will have a great deal of cognitive ability, and so I say that (in this case, to the mechanics.) Immediately they seemed to relax. The idea of someone "suffering" or being "disadvantaged"  (which Elijah is neither, in my opinion) is like the game of Hot Potato. People want it off their plate.

Trips out in public are sometimes a little more awkward, and I don't always want to answer the questions, but I get a sense that it's great for people to be seeing Elijah- that he is changing minds about how much of a "sob story" it is to have Down syndrome.  I keep off of the heavier issues and save my feelings about it all for those cherished few conversations and this blog.  And although the following pictures have absolutely nothing to do with this post, I just have to share a few cute ones we took with the boys last weekend.... :)

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And my favorite one...

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Oh yeah....and when I went to go pick up my car, the mechanic gave me 50% off.

Hot Potato?

Wednesday, October 5, 2011

Elijah's Chariots

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It is that time of the year...the annual "Buddy Walk" to support the Down syndrome Association of Los Angeles is just around the corner!  The Down syndrome Association of Los Angeles, or DSALA, is a non profit organization devoted to enhancing the welfare of people with Down syndrome and their families through the development of education, counseling, employment and recreational programs.  They are also committed to helping increase public awareness, understanding and acceptance of Down syndrome.

Last year, Elijah was just 7 months old when we participated in the Buddy Walk- not knowing what we were getting ourselves into.  We had a small, but mighty, group of close friends and family participate in the walk with us...which is really a slow trot around a track- we might be talking about a quarter of a mile here. Certainly, we're not participating in a physically challenging race. ha ha! (Click here to read about our experience at the Buddy Walk last year.)  The Buddy Walk this year is coming up on November 13th at the Santa Anita Racetrack and I am beginning the wrangling. Last year we witnessed so many creative and loving ways that families supported and honored their family member with Down syndrome.  We saw heartwarming T-shirts, signs, and even a Pirate ship float to carry some adorable little boys!! (Yes- Sarah, if you're reading, I now know it was you.  Which is so funny, because I didn't know you then.  But, I should have figured that anyone who was going to go to the trouble of making a pirate ship float and wear pirate garb, were my kind of people!!!) So, this year, I've re-vamped our team name.  It was formerly "Team Elijah", but this year is "Elijah's Chariots".  I kind of liked the multiple implications of the name: In the Bible, Elijah never actually dies.  He is escorted into Heaven by chariots.  Kinda love that.  Then, there is the idea that that our Elijah isn't walking yet.  I like the idea that we will be his chariots for the Buddy Walk this year.  Double entendre anyone? :)

So, the time is nearing, and while I have visions of a chariot float (Note to self: Add to the Honey-Do list asap...), T-shirts with some "Elijah's Chariots" logo on it and signs bearing my youngest's contagious smile, I need to turn to you-my family, my friends, and my readers (perhaps just a fancy way of saying my friends and family. LOL!)  for some help.  I have always been the type of person who loves a good cause.  Whenever I can, I'm donating to friends' races for Breast Cancer or Wheelchair Missions, Multiple Sclerosis and Sjogren's campaigns.  However, until I needed the support and aid of a great cause, I didn't have a true and personal understanding of how much these non-profit organizations can do.  Now that I do, I am putting my heart into it.  I am asking anyone who reads this to consider putting your heart into it also.  If you are moved, consider clicking on this link and donating a small token to aid a great and worthy organization:
http://buddywalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=487077&lis=0&kntae487077=D95D291532A1402AB196A7E6DE0A3C7A
If you are interested in joining our team and participating in the walk with us, we will welcome you with open arms.  Email me if you're interested and I haven't already given you a hard pitch. :)

P.S. Chariot and Chariot themed ideas welcome!  Come on...You know a Party-Planner-by-trade-Mommy isn't going to go all subtle on you now, right??

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New tricks: Frequent popping up onto his knees; Loving the bounce house
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