Life as a Leach

Abby has started at a new therapy center, and we are loving it!  It's closer to our house than any other therapy we have had, and things are going really well! She really likes the speech therapist, who does a lot of play therapy (Abby is SO not a flash card girl!) and has a personality that is easy to like.  She's young and energetic, and Abby even gets to go to the therapy gym sometimes to play while working on speech skills.  Bonus:  Abby has already talked to her more than she did the last private therapist we tried! We have also started OT there, because the owner of the company is an OT who was willing to try post-op therapy with Abby.  They have PTs, but we were previously told that they couldn't take Abby because she was too complex.  The owner agreed to take her and would be her exclusive therapist.  She seemed very eager and willing to do whatever Abby needed, so I'm really hoping it will work out. We are going to try it out and see how it go...

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 ...

Have you ever knelt next to your child as he or she gets sick, or cuddled your baby with a raging fever, and just wished you could take it all away?  As miserable as it is at the time, you are so grateful when it gets better and you forget about how bad it was. I feel this way all of the time, except that it is not going to get any better--at least any time soon. Watching my little girl cry from the intense back pain that she has recently been experiencing makes me wish it were me instead of her.  I know how bad it is when she actually asks for the pain medicine that she hates to take.  We aren't sure if she needs an expansion or if her kyphosis (hump) is getting worse, but it's definitely affecting her.  Hearing her sadness when she realizes she can't participate in her first dance recital because she'll be recovering from surgery brought tears to my eyes.  I didn't realize that she didn't know, but she sobbed when I had to break the news to her.  I ...

After the Shuffle, a reporter from The Baltimore Sun interviewed us about our experience with the House.  Caleb is featured in the article, and I think his words are wise beyond his years. You can read the whole article here: http://www.baltimoresun.com/news/maryland/bs-md-red-shoes-walk-20160410-story.html You see, RMH is the one place where everyone does really look at us the same way.  No one judges, no one gawks, no one teases.  We can all just be.   That's the beauty of The Ronald McDonald House.  It's so much more than a place to sleep.  It's a community of people who get you in a way that no one else can.  They love you through the hard times and celebrate the successes. It really is The House That Love Built.

In Their Words  is a series I created to give my children a voice.  Caleb loves to share about what it is like being the big brother to a child with special needs, and Abby shares her thoughts about life as a medically fragile child.  Everything here is written exactly as they told it to me.  This is their chance to be heard! So, here's my five year old daughter, describing her life in and out on hospitals...in her words. I have tons of surgeries on my ribs to help me be strong and big.  Dr. Campbell is fixing my ribs.  My ribs are so tiny they can't even get much stronger, but Dr. Campbell is helping.  I have trouble breathing sometimes.  And sometimes I throw up when I'm at the hostible (hospital). I don't like the medicines, because sometimes the purple one I don't really like. I've had a million surgeries! I don't like that we have to go to the hostible and have surgeries.  They hurt.  They hurt all of the time.  It's n...

Being a special needs parent is vastly different from being the child with special needs, or from being the big brother.   I am hoping to start a new series called In Their Words  that allows Caleb and Abby to share their own perspectives.  Abby is getting old enough now to share some of her frustrations and fears about her surgeries, and I think it is important for her to feel like she has a voice.  Caleb is often so reflective that I know he will have lots to share. Who knows, maybe In Their Words will make it to The Mighty! Today, Caleb is going to share what it is like being the big brother to a child with special needs.  This is written in his own words, with me as the typist.  :) Abby's big health concerns are her spine, her breathing, her hearing, and her seeing.  She has to have a lot of surgeries on her back and ribs.  She has special needs, which means you need special stuff to help you with sickness or special things that othe...

These guys had a great time at the boardwalk together! A bench in memory for sweet Parker, who was taken way too soon

Abby and Chloe are best buds!  If Abby is around, chances are that Chloe is near her.  She is the best dog!! If you like boxers and are interested in adopting (please adopt!!), Adopt a Boxer Rescue is awesome!  They really try to match families with a dog that is right for them, which is why their success rate is so high.  They certainly matched us with a great dog!  We love our Chloe!

On fame's eternal camping-ground Their silent tents are spread, And glory guards with solemn round The bivouac of the dead. Gettysburg National Cemetery March 21, 2016

Happy anniversary to this guy!  12 years ago, we had no idea what we were getting into!  While life isn't always easy and I know my nagging and worrying drive you crazy, we are better together.  I love you!

We chose a cold, cold day to visit the battlefields!  As much as I had planned to walk around and enjoy the scenery, it ended up being where we just drove from one spot to another, got out and took a picture, and drove to the next spot.  We will make sure it is warmer the next time we go! I climbed 14 flights of stairs, braved the wind and cold, and suffered an asthma attack for these shots!  Cold bursts of air and my lungs do not mix.  (But they're pretty pictures!)