Life as a Leach

I would love to have some photos of people wearing their blue to show their support for Rare Disease Day!  If you're willing to play along, take a picture of yourself and email it to me:  juliebleach@yahoo.com  I'll post the pictures on here as a special "Hope...It's in Our Genes!" post!  Thanks! :)

Today is Rare Disease Day. Nope, it's not a coincidence that it's on February 29th! As the mom to an adorable little girl with a pretty darn rare disease, I can tell you that it is ridiculously hard to deal with at times. You're constantly educating doctors and breaking down the walls around those doctors who don't want to admit they've never heard of the blah-blah-blah syndrome you just spouted off.  Repeated internet searches are in vain because there's never anymore information.  There's no expert...oh wait, that's you!   You , the mom, are the expert.  Nobody can tell you what to expect at each stage because no two cases are alike and your child is pretty much one-of-a-kind because she doesn't have a primary diagnosis to cause this crazy-rare disease. But then, it can also be pretty cool to know that God has entrusted you with such a wonderfully special little girl.  He knew that it would be tough and that there would be a lot of challeng...

There are sooooo many images related to Choosing Joy!  These are some of my favorites... I want to make this one...or buy it from someone who did!  :) I thought this one was pretty clever.  It was the poster for a sermon series. I really hope this says "Choose Joy" and that I'm not actually saying something offensive in French.  If it says "Choose Joy," then I think it's beautiful.  If it is vulgar, then I'm sorry...I only speak German! I thought this one was cute!

Rare Disease Day is this Wednesday, February 29th.  I want to invite all of you to wear jeans/denim/blue on Wednesday in honor of Abby and all of the others living with a rare disease. It can be extremely isolating when you are a family dealing with a rare disease.  As much as people want to understand, they just can't.  Starting Rare Love has allowed me to connect with others who share similar feelings, but battle different diseases.  Likewise, participating in events like Rare Disease Day helps to raise awareness and feel just a little less isolated. Watch this short video about Rare Disease Day and please consider joining me on Wednesday!  :) PS:  It's considered a "rare" disease if it affects less than 1 in 2000 people.  That really puts into perspective just how rare CCMS is...I don't think they can even say "1 in ____."  1 in 1 billion?  All I know is that it is extra rare, and we are extra thankful for her life!

They're my favorite!  :) PS:  The turquoise thing is her Passey Muir Valve, which is why you can hear her so well. 

I didn't write this post, but I wish I did!  It was written by a brave young woman named Sara who battled disease for a long time and passed away in September.  Her writing spoke to me so much, and I hope it touches you as well. ------ Joy is a big part of life... no matter how you define it or what brings it to you. I'm sure there are as many things that instill joy in people as there are people to describe it. Maybe for you it's the smile on your child's face in the early morning hours when you walk in the room to lift them from their crib. Maybe it's walking along the beach as the waves crash on the shore and seagulls make a choir in the distance. Maybe it's pulling into a gas station where the price is below $3/gallon. To each their own. But here's a question: have you stopped long enough to figure out what brings you joy, define what that joy feels like to you and realize that, like everything in life, it can be a choice? I made ...

I am reposting this from http://www.5minutesforspecialneeds.com/ , which is a phenomental source of support if you have a special needs child.  Ellen at http://www.lovethatmax.com/ loves it too, so she often links their posts and I eagerly hop over to read them when I have a second.  They never disappoint. This was written by a mom named Suzanne who has 2 children with a mitochondrial disease.  I usually just link to good posts I want people to read, but this was worth an actual re-post.  It was a good reminder to me.  Sometimes I am so worried about making the most of my time with Abby that I forget that Caleb is growing older by the minute too!  He deserves my attention and adoration as well, and it's something I have to create time to do sometimes.  Life with Abby is very busy, and I sometimes worry about Caleb's needs getting pushed to the side.  Matt and I work hard at giving him individual attention.  They have "Man Time" every ...

 Where's Abby???? Peekaboo!!!!!

What do you do with a couple of screws, a bunch of nails, a sturdy rock (painted during a previous craft time), and a cardboard box? Carpentry 101!  This great idea was found in my new Family Fun Magazine, and I knew that Caleb would love it. I was right! An hour's entertainment...thanks, Family Fun!

If you'd told me last year some of the things I'd be doing in February of 2012, I'd just laugh at you...or cry and shake my head!  I was so completely overwhelmed with the craziness of everything that I couldn't even imagine what things would look like a year later.  This was evident as we reevaluated Abby's IFSP (Individualized Family Services Plan) for her therapy services!  Some of our goals a year ago were for Abby to have head and neck control, to sign one word, and to take one bite of solid food.  My, my, how things have changed!  The girl who couldn't hold her head up for even a second a year ago is now crawling up the stairs and walking with a push walker.  The girl whose thoughts were locked inside her head a year ago are now exploding through her fingers.  The girl who refused to even let a spoon pass through her lips a year ago now willingly tastes just about anything you give her--and likes it!  Things I didn't think I'd be do...

Congratulations to Sarah C. for winning the Lock and Lock giveaway!  She was #22, which was the "Magic Number!" Thanks to everybody who entered.  We had about 30 entries and some really great song submissions.  You all have good taste.  :)

On Friday night, we went to the mall to return some shoes and get a few things.  While eating at the food court, we had our first experience with kids making fun of Abby.  A few boys were laughing and pointing at their throats, making faces.  They were silly middle school boys and I was the only one who noticed it, so it wasn't a big deal and I didn't say anything at the time.  I did mention it when we were in the car on the way home, though.  Here's the rest of the conversation. Caleb:  Ohhhhh, I wish I had seen them! Me (a little afraid of what he might have done): Oh yeah?  Why? Caleb:  Well, I would have marched right up to them and very calmly said, 'Don't you know you're looking at a miracle?!' Ahhh, I love that kid!  I'm so proud of the way he loves his sister.  I don't doubt that he will say that statement to more than a few kids.  My boy, changing the world...one punk kid at a time!

I ran some errands on Friday after I got off of work because I had a little time before I had to pick Caleb up from  MMO.  We needed some things at the grocery store and I had to pick up four more of the never-ending prescriptions from two different pharmacies.  (Why, yes, it is  that complicated!) While I was driving, I saw a little yellow helicopter lift off from the hospital, rise above into the sky above me, and take off toward Baltimore. My little yellow helicopter. Just like that, a flood of emotions came pouring back into my head.  I remembered that night so vividly:  the painful contractions that wouldn't stop, despite the heavy medications; the roar of the helicopter engine as it sputtered to life; the naive, excited squeals of a three year old boy who had no idea how much his life was about to change; the fear that gripped me during that 20 minute ride that seemed to take 20 hours; the calmness of the very capable flight nurse; the song "I ...

Check out Carter's Hope (there's a button on the top right of the blog that links right to it!) to read about a beautiful little boy named Carter who left the world way too soon.  His mom contacted me about posting a Story of Hope to encourage other families facing a special needs situation, and I happily agreed!  You can read what I wrote  here .  This organization is just starting out, but I think that it will be an awesome encouragement to those families who are just starting out on this journey.

Have an indoor snowball fight with washcloths, of course!! Hey, whatever gets me through the day...

Read I just recently finished a great book called that was absolutely amazing.  No spoiler alerts here, but it's about a former Olympic runner who was captured by the Japanese in WWII and became a POW.  While it is terribly difficult to read at some parts, the theme of unwavering hope and courage is prevalent throughout the novel.  He truly never gave up.  This book isn't a #1 best seller for nothing!  It is definitely worth the read.  I flew through its nearly 500 pages in a week...and I don't have a lot of time to read!!  Watched Caleb earned a movie night by earning all of his magnets for three days on his daily chart, so we finally rented Mr. Popper's Penguins.    He had read the book with Matt (one of Matt's favorites as a kid) and had really been looking forward to the movie version.  Warning:  it is nothing like the book!!! That's not a bad thing, but something you should know up front.  The similari...

I have entered a photo contest sponsored by MOPs (Mothers of Preschoolers).  I included 3 different photos of Caleb and Abby, so please vote for them...you can vote up to 5 times a day!  Thanks!  :)

Emily is a 17 year old who has been such an inspiration to me in the last two weeks or so that I have had the pleasure of knowing her!  You see, Emily has CCMS...you know, Cerebrocostomandibular Syndrome. And she is 17!!! I have really enjoyed getting to know her story and emailing her mom.  With Emily's permission, I wanted to share the blog she just started about her journey with CCMS.  I hope that you will check it out and give her some blog love!!  She is a lovely girl, and I hope that we will be able to meet face-to-face one day.  Until then, I will happily read her blog with tears in my eyes.  :)

Little Mozart has discovered the piano! This girl LOVES music.  She dances and claps to any kind of music, and really enjoys the piano.  Her favorite song is "Little Red Wagon" by Raffi.  She starts bumping up and down as soon as you start singing it! As a fun giveaway to celebrate 200,000 hits, I want to hear about your favorite songs!  Simply leave a comment here, on Facebook, or through email sharing your favorite song, the name of the writer/band, and a short little statement about why you love it!  You can enter up to 3 songs!  Just post each entry separately, because I'll be numbering all of the entries and having Caleb choose a number.  Multiple songs in one comment will only be counted as one entry. As a bonus, you get an extra entry if you link this giveaway to your own blog or Facebook page!  Just write in a comment that you did so.  (You can get an extra entry for each one if you put it on your blog and FB page!)...

I love this picture.  Look carefully at the wall!  This is the photo I use for the Rare Love icon on Facebook. I'm a big fan of this one too.  :) And some days, this is my mantra!

I thought these were pretty funny...beware a tiny bit of language! 

We've hit 200,000!  You know what that means????  Another giveaway!  Stay tuned for details! We actually hit 200,000 last night, I think.  I'm not sure.  I was much too busy holding down a screaming, thrashing little boy so that Matt could get the blasted eye drops in while Abby smacked poor, defenseless Caleb on the head to notice the exact time.  I can't wait until we're done with these drops.  Come on, Wednesday night!!

The "R-Word" (used to describe people with intellectual disabilities) is very offensive to me.  Way before I was blessed to have Abby in my life, I hated the word.  And I've said that before. I came across this blog post, which is one of many I have enjoyed from Love That Max.  Ellen's writing is real and from the heart.  She also has a whole lot of courage to do the Twitter experiment she did!  I am too worried about getting people mad at me, but she showed a lot of guts! If you're an "R-Word" user, it would be an awesome Valentine's Day gift to the millions of children and adults with intellectual disabilities (and those who don't, but people assume they do because they're in a wheelchair, on a ventilator, etc.) if you'd consider a different word.  Thanks, From a mom who hopes the term is never aimed at her daughter.

If you look on the right side of the blog, you'll see little icons with pictures of some of the people who follow my blog....or at least the ones who linked up using Google Friend Connect!  Of those 71 people who are currently following, I don't know over half of them.  We're about to approach 200,000 hits...before I went into the hospital with Abby, I had a little over 5,000 hits total in almost 4 years.  I now get about 1,000 hits a day, and I know they're not all from my mother!  ;) Does that freak me out? Nope! I'm not naive.  I know that putting our life out on the internet has dangers.  I try to be very careful not to give anything more than our general Maryland location and do a lot of initials for places we go.  I don't link to local places and only include the names of friends' kids with their permission--especially now that more than 6 people read it on a regular basis! But the reason that I choose not to worry about the danger...

Caleb is going to help me make chocolate pudding (for his writing practice!).  He comes into the kitchen with his goggles on.  When I ask why he's wearing them, he replies quite seriously, "Well, you never know when something might fly up and hit you in the eye.  Safety first, Momma.  Safety first." ------- Caleb:  (When Abby throws a toy at him because he won't let her play with the one she wants):  Don't throw things in anger, Abby!  (voice of experience) ------- Caleb: (in a sing-song voice to Abby):  Well, good morning, cutest little baby in the world! ------- Me:  Okay, Caleb, what do you want your next reward to be for getting all of your magnets for 3 days on your daily chart? Caleb:  Hmm...I know!!!!  A trip to Disney World!!!!!!  (his last reward was a movie night at home...)

*  The eye drops used for Pink Eye are pure torture for both the parents and the child!  If that isn't motivation for constant handwashing, I don't know what is.  I was positive I was going to get a visit from Child Services tonight based on the screaming I am sure the neighbors could hear coming from my house. *  I'm getting close to 200,000 hits!  I'll do another giveaway when I do... :) *  We're going to the Melting Pot tomorrow for an early Valentine's Day dinner.  Can you say food coma?!   It takes a crazy amount of planning to get to go out by ourselves (and we had to change the date once!), so this is very exciting!  *  I passed my English as a Second Language Praxis exam, which means I am now certified.  Huge sigh of relief!! *  Whitney Houston died today.  She had issues, but she was one heck of a singer! *  Matt was gone all day and all night today. Usually when this occurs, I try t...

Caleb has been working on his writing, but not with old fashioned pencil and paper!  We've been using Cool Whip and chocolate pudding, which double as great textures and tastes for Abby to try.   I think it's safe to say that it was a hit! And Caleb even did some great spelling practice, spelling and writing words like cat, bat, and bed.   He has officially declared himself The Master of Words. I pray for his future kindergarten teacher! :)

Those first few terrifying weeks of Abby's life, the doctors told us an awful lot of information.  They told us that Abby's chances of getting out of the NICU were very slim.  They gave us lots of statistics that showed us the odds were stacked against her. They pointed out every little physical imperfection on her body, from her ears, to the bridge of her nose, to her fingers.  They discussed life expectancy, pediatric hospice, and DNR orders.  They told us that she would never sit up, much less walk, but offered assistive technology to make our day-to-day easier.  They were quick to set our expectations straight by informing us that she wouldn't be much more than a vegetable, if she lived . But there was a whole lot the doctors didn't say. They didn't say that Abby is so much more than a statistic.  They didn't describe the look of adoration that would glisten in Abby's eyes as she signed "I love you."  They forgot to menti...