Life as a Leach

I love this song.  This is what I strive to do.  I'm far from perfect and the scratches on my hand from a panic attack are a visible reminder that sometimes my anxiety gets the best of me.  The last few days have been tough, but today is a new day.  I count on one thing The same God that never fails Will not fail me now You won't fail me now In the waiting The same God who's never late Is working all things out Is working all things out Yes I will, lift You high in the lowest valley Yes I will, bless Your name Oh, yes I will, sing for joy when my heart is heavy For all my days, oh yes I will I count on one thing The same God that never fails Will not fail me now You won't fail me now In the waiting The same God who's never late Is working all things out Is working all things out Oh, yes I will, lift You high in the lowest valley Yes I will, bless Your name Oh, yes I will, sing for joy when my heart is heavy For all my days, oh yes I will For all my days, oh ye...

Last week, Abby was at feeding therapy when we saw our awesome feeding GI (yes, she has two GIs!). He knows about Abby's surgery series, so he asked, "When is the next big thing?"  Knowing exactly what he meant, I filled him in on this upcoming surgery that's now less than a month away.   Since then, I've thought a lot about the phrase "The next big thing."  Given that our life tends to revolve around surgeries and appointments, it is easy to get sucked into focusing on the next surgery.  It's bad enough for me to do it (which means very little sleep leading up to surgery!), but it's just not healthy for my kids to dwell so much on surgeries.  In the year leading up to our Make a Wish trip, we often focused on trip planning to keep our mind off of Abby's five surgeries that year.  I decided tonight that we needed to focus our minds on things we are looking forward to, rather than the surgery we are all dreading.   So, the kids and I sat down ...

Surgery dates and times, that is! I got a call Tuesday night from CHOP about Abby's VEPTR surgery in April.  It was supposed to be the 6th and now they are changing it to the 23rd.  To those of you who don't have a medically complex child, this may not seem like a big deal.  But given the fact that we are planning for a one month stay and Abby's many appointments are a juggling act as it is, this threw me into a tailspin.  I'd completely blocked out April for surgery and scheduled a ton of stuff for the beginning of May...yay. A few tears were definitely shed over the frustration and stress of it all.  Then I pulled on my big girl panties and got to work. After making many phone calls to The Ronald McDonald House (we were at the top of the list when I put in the room request in September...with the date changes, I'm sure we probably won't get in...), ENT, the dentist, audiology, my boss, etc., I think I have everything figured out.  Matt had also bloc...

My dad recently saw a bumper sticker that said "Joy in the Journey."  He knew we would like it, so he looked for it on the Internet but couldn't find it.  So what did my awesome dad do?!  He made one!  I love it!  It fits right in with my other bumper stickers (rare disease and RMH!). Thanks so much for the thoughtful gift, Dad!

So Abs found out from the ophthalmologist today that she needs to start patching her eye for two hours a day every day.  Her left eye that turns in is getting worse, and she is basically unable to see much of anything out of that eye.  Her vision measured 20/100 in the left eye WITH her glasses on. No big deal.  We've dealt with many worse things! But it is definitely going to take a bit of convincing to get Abby to buy into the whole thing. The alternative is putting drops in her eye that make her vision blurry for the entire day, which I think sounds a lot worse.  I thought I'd be able to find cute patches that would entice her, but the girly disposable patches online aren't all I ended up buying a few different brands of tan patches at the drug store to test them out.  I have a feeling that the adhesive will do a number on her skin like it usually does, so I started looking for some alternatives.  I found some cute ones that cover up the entire len...

Tomorrow is the big day.  I'm writing this ahead of time because I plan to spend our day making memories and enjoying being a family!  Therefore, the emotions that I'm certain I will be feeling the night before surgery aren't quite there yet...thank goodness. We so appreciate your prayers.  Abby is scheduled for first thing in the morning and we expect the surgery to go well into the afternoon.  I don't expect that we will be able to see her until late afternoon/early evening.  I will be posting updates on Facebook and on here as I can. I do have a blogger app now that makes things a little easier.  Mostly, I am pretty sure I'll be staring into space or pretending to read my book while my mind is racing. We would be honored if you would join us in wearing purple tomorrow to show your support of Abby!  If you have a Joy Runners shirt that we sold as a fundraiser for RMH, that is perfect!  Otherwise, dress yourself in purple and choose joy! ...

Guys, you know I talk a big talk about Choosing Joy.  And I do try.   Try.    But today was rough.   I kinda had a feeling that I was teetering on the edge of stability when I sobbed through "Our God" on the radio on the way to church.  But all it took was a totally innocent comment in Sunday School about how children are a gift and we never know how much time we will have with them for me to completely lose it.  I had to make a quick exit before they saw my Ugly Cry.   These sorts of emotional meltdowns are usually unannounced.  One day, I can nonchalantly sing along to a song on the radio, and the next day I flood the driver's side.   I don't expect people who are not in this situation to understand.  But our reality is that the VEPTR is a last resort.  Without this surgery series, we will most likely lose Abby.  But the surgery series has risks and complications in itself, and Abby's respiratory sta...

I know I've been really quiet on here recently.  But my "free" time has been filled with JOY bags!!!  I am happy to tell you that we have had 132 bags sponsored!  This project has just taken off.  We started out just praying that we would get 50 bags, and we met that goal in TWO hours!  After buying more of the 31 Bags Drawstring Bags multiple times, we finally settled at 132 (we bought 30 more and got 2 free, which is how we got to 132!) Cathy and I have been busy buying the bags, as well as LOTS of toys to fill those bags!  Each bag will be filled with fun stuff like play dough, several books, bubbles, a dry erase board, twistable Crayola crayons, a coloring book, a cuddly stuffed toy, and much more!  We are also including a sponsor card so that the recipient will know who lovingly sponsored their bag. Our plan is to deliver some of the bags when we go to CHOP in May.  Then we will give the orthopedics department some bags to keep on hand an...

If any Abby Fans are interested in purchasing a Joy Runners tshirt to support The  Ronald McDonald House Charities of Baltimore , we are selling them for $15! My amazingly talented sister designed them and we are getting them professionally  printed at a local tshirt design company. They will be purple, in honor of our Purplelicious girl, of course! (I'm sorry I can't figure out why it is sideways.  It looks right when I load it!) Children's sizes range from XS (4) to XL (18-20) Adult's sizes are S-5X Ladies cut (cap sleeves, slightly fitted, order a size up) are XS-3X If you would like to buy one, please send me an email message at juliebleach@yahoo.com with your sizes. Checks can be made payable to Amy Bevard (she will write one check to the tshirt company and another check to RMH for the donated portion). They can be shipped for an extra fee to cover shipping (I'll try to keep it as cheap as possible!)  We need to have the orders by Thursday evening. Thank ...

Not sure if you've noticed, but it's been a little quiet over here on the blog recently.  When I have blogged, it hasn't been so emotional.  Some of that has just been the busy-ness of the time of year and the amount of time I can devote to blogging, but a fair amount has also been that I have really been trying to internalize what "having the gene" means...and I wasn't quite ready to share my heart again with the world. Guilt washed over me when Abby got sick with a virus and the usual concern over her weight and respiratory status during the illness begins.   I caused this.   The fear of the future began anew when we listened to the thoracic specialists talk about potential rib surgeries.   I caused this.   Teaching a new group of teachers all about Abby's medical precautions caused the butterflies in my stomach to flutter again at the thought of not being there to keep an eye on her.   I caused this. In my search to begin to understand why ...

I have had this rolling around in my head for over a week now and couldn't even fathom writing about it until now.  That's how tough this is for me to write.  As it is, I have been working on this for over two hours. Back in May, we participated in a Canadian genetics study where researchers are trying to confirm that they have found the mutated gene that causes CCMS.  We were really excited about the prospect of being a part of a such a big (well, for about 10 people!) study.  All that was required was a saliva collection from Matt, Abby, and me.  It was painless and easy!  We got a little bit silly during the process, took pictures for posterity, mailed off the collections, and really didn't think too much about it after that. The Thursday before Abby finished feeding therapy, I had a message from our geneticist saying she had some news about the study.  We played a little phone tag and she finally caught up with me on Saturday mo...

After posting about the Abby Joy buttons yesterday, two people have asked how they can get one themselves!  I hadn't even thought about it because we originally just made them for the team, but just in case anyone else is wondering...make a donation to The Ronald Mcdonald House and I will get one to you!  You can either give me the donation directly or click here to donate to our team page.  I will be going to Baltimore three times before the race and will be able to drop it off at the House. If you're not local and want one, I will mail it to ya!  :) Please...no pressure!!  I was hesitant to even put it out there because I don't want people to think I'm all like oh, buy a button of my little girl and wear it around!   But since people were asking about them, I figured I'd offer it to everybody.  :)

My favorite sister brought me some beautiful tulips the other day.  I put them on top of a little cabinet so that they could be seen right when you walk in the front door....just under our JOY sign.   I like to think these tulips greet everybody with a cheerful Welcome to Holland!

Over the past 8 months or so, I have the pleasure of knowing Brooke Shockley , a beautiful teenager with Osteosarcoma . I met Brooke at the Ronald McDonald House and she is one of the most mature, positive teenagers I have ever known.  She truly does choose joy, even though she is going through more than her share of trials right now.  To know her is to love her, and boy does everyone at RMH love her!!  I can't wait to see her again at the 5k next month. A few months ago, an organization called Music Is Medicine  (run by two incredible teenagers, I might add!!) arranged for Drew Seeley to write a song just for Brooke.  He actually came and performed it at JHH for Brooke and some of the other patients there, and the song just came out on iTunes.  All proceeds go to Pediatric Cancer Research at JHH, and it's all because of Brave, Beautiful Brooke! You can hear the song and "get to know" Brooke a little through the video below.  But I'd encourage...

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!

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 ...

My cousin, whose family has dealt with its own share of difficulties the last few years, got Abby this for Christmas.  I LOVE it!!!  I think what I love best is that it's not this fancy plaque with swirls and flowers on it.  It's a piece of plain burlap on a painted piece of wood, but it speaks volumes.  Because sometimes, joy isn't all roses and sunshine.  Joy is sometimes rough and hard, and it doesn't have anything else to give you but some paint and a piece of burlap.  Joy is a constant choice, and it's not always pretty.  But you can have joy inspite of the hardships, if you have faith.  This now hangs right in our foyer to hopefully set the tone for our house.  Thanks so much, Mary!  We love it!

Last Saturday, we changed Abby's trach just like we do every Saturday.  This time, she just kept coughing after we finished and couldn't stop.  Her face turned a dark shade of purple and we quickly suctioned her to get whatever was in there out.  That didn't seem to help, but then I noticed that her trach ties were really loose.  For whatever reason, now that the tube that goes inside is longer, it really bothers her if the trach ties are loose and the trach can shift a bit.  We tightened the ties and she finally settled down.  Just to be safe, I hooked up a nebulizer treatment to give her some Albuterol (the equivalent of a fast-acting inhaler).  Once things calmed down a bit and Abby started breathing normally again, Matt and I did our typical post-semi-emergency ritual and collapsed in a heap on the floor.  This kind of thing hadn't happened in a while and it started without warning, so it certainly got our heart pumping.  The ...