Life as a Leach

I'm not gonna lie.  Life has been challenging recently.  The herniated and torn discs in my back are severely limiting what I can do, and it is frustrating.  I don't live life on the couch.  It's just not me.  And not sleeping is kind of an issue too.  There's other tough stuff going on right now too, which is taxing on our family.  We would certainly appreciate your prayers. However... So let's name a few.  Some are minor, some are HUGE!  In no particular order: 1.  A sweet friend and coworker of mine is finishing her LAST radiation treatment on Monday!  What a celebration that is!  I am so thrilled for her.  It's been a tough 9 months, and I know she is ready to move on! 2.  I entered us in a drawing through our electric company for a fancy new thermostat.  We were chosen and got this $250 wireless thermostat that is app-controlled for free!  It learns your habits and is supposed to lowe...

I cannot even begin to express our appreciation for all of the prayers, cards, gifts, and well-wishes for Abby during her hospital stay!!!  Everyone who walked in her room was amazed at the number of cards hung up on her wall.  It was pretty incredible to see the outpouring of love for our little girl! All of the craft items, Frozen toys, dolls, blankets, and even a bean bag chair (which she LOVES!) made Abby smile so much!  I would pull out a new toy when she would start to get bored or done  with the hospital, and it would most definitely brighten up her day. THANK YOU for loving my girl.  Thank you for praying us through this time that ended up being a lot tougher than we thought.  Thank you for celebrating with us when we finally returned home. Thank you for being people we can count on. We are blessed.  So very blessed.

I've been really slow to write this because I wanted to make sure I could do it justice.  I didn't want to write a cursory post in the hospital when I knew I couldn't devote the time to it that I wanted. When I woke up on the morning of August 3rd, I felt so alone and anxious.  We were leaving that afternoon to begin our VEPTR journey with our little girl, and we really had no idea what was going to happen.  I was beaten down and just plain sad. Little did I know what had been in the works for months.  My amazing sister had planned a HUGE send-off for us that involved lots of lies and avoidances of truth along the way!  Matt staged that he had to go pick up his laptop from the church (he knew just a tiny bit--enough to get us to the church).  When we made the turn onto the road the church was on and I looked up into the parking lot...I saw cars. TONS of cars. And a huge line of people dressed in purple. Some were in tutus. Everybody had signs, b...

A friend posted this , and I casually clicked on the link because the photo that was there was of a baby in the NICU.  I figured I might be able to relate in some way and wanted to check it out. Oh my, the tears!  Could I relate?  Oh yes! If you don't have time to read the entire post, read this part below where she describes the thankfulness she has for her daughter and know that this is totally my heart.  What a beautiful expression of gratitude.  Thanksgiving is every day. I don’t need a calendar for Thanksgiving now , all orange and brown, marked by apple cider and falling leaves. You rolled over and it was Thanksgiving, hot summer sun beating down on the window. You spoke a single syllable and it was Thanksgiving, snow falling softly from the night sky. You took shaky steps toward us and it was Thanksgiving, blooms still in buds outside. I know that our story could have ended differently and I’m still counting the Thanksgivings with heartbeat...

These two sweet faces. They love each other so  much.  It is so heartwarming to see the way Caleb bounds off the bus in the afternoon and runs right to Abby, or the way Abby throws her arms around Caleb and gives him a kiss when she wakes up in the morning.  They are truly best friends, and I hope this lasts through the years! Happy Thanksgiving!

I have been blessed this year to be part of the Secret Sisters program at our church.  They have graciously "adopted" me as somebody who might like an extra smile now and then.  Each month, I have a different Secret Sister who prays for me, sends me sweet notes, and leaves a thoughtful gift for me to enjoy.  I never know who is the Secret Sister that month, but the surprise is part of the fun! I have to say, I have been spoiled by my Secret Sisters!  I've received everything from a Reese's Overload package, to really nice lotions and body washes, to door decorations, to gift cards to get my nails done...many times, the notes and gifts came on days when I really could use a little encouragement!  Most recently, my sweet Secret Sister for August sent me a beautiful Vera tote bag!  I have a little  Vera fetish, so this was just about perfect. Secret Sisters, if you are reading this, THANK YOU for the encouraging notes, the gifts, and--most importantly...

Our main night nurse commented a few weeks ago that Abby is one of the happiest wakers she has ever seen.  It's true!  The girl throws opens her eyes, bolts up to a sitting position, and starts clapping, smiling, and giggling.  Our nurse said it's like she's just happy to be alive and thankful that God gave her another day. I have to admit that my wake-up is not quite so...peppy.  My alarm goes off, I groan, and hit snooze 2 or 3 times before I finally resignedly force myself to get out of bed.  I'm not sure I've ever clapped and giggled upon waking. You may not be much of a morning person either, but I think we could all learn something from Abby!  I can honestly say that I don't often wake up thanking God for another day.  Since our nurse brought Abby's "Morning Gratitude" to my attention, I've been trying to do that more. So while you may not clap and giggle when your alarm goes off, join Abby and me in thanking God that He has allowed...

I feel bad for Thanksgiving.  It often gets skipped over because people go right from Halloween to Christmas.  It's always been a favorite holiday of mine because it isn't over-commercialized...just lots of good food and family!  Plus, I love to watch the Macy's Day Parade!  :) Here are a few of the many things I am thankful for this year: *  We're home celebrating rather than in Baltimore.  As much as I love RMH, there's no place like home!  We celebrated 4 holidays there last year, and it's just really hard to be away during this time of year. *  My kids.  They are both so great!  Caleb is absolutely the best big brother for Abby.  I also love that I'm getting glimpses of some of his strengths as he heads into school.  He loves to build things and solve problems as he builds, and he is also really good at math.  Maybe he'll be an architect!  Abby has overcome so many obstacles and is really developing wel...

I worked all day today and am going to MOPS (Mothers of Pre-Schoolers) tonight, but I know my friend Linda gets worried when I don't post!  :) Abby has learned how to give hugs this weekend, and it is incredibly cute!  I'll say, "Give me a hug!" and she, of course, first shakes her head and smiles.  Then she leans forward and lays her head in my lap with her arms holding my knees.  If I lay my head on her back, she always giggles.  It is sooooo cute!  I am going to try to get a video of it sometime soon, but I was on my own this weekend! The next few days will be chocked full of blanket-making for the Welcome Project with the youth group on Wednesday, two Thanksgiving dinners on Thursday, Christmas decorating on Friday (Matt will be doing stuff with the youth group all afternoon/evening), and serving dinner and doing the activity hour with MOPS at RMH on Saturday!  Sunday, I'm hoping to finish up the inside Christmas decorations and maybe get Matt...

Everything about last night was beautiful... ...100+ Baltimore police officers who brought in gifts for the kids of the Ronald McDonald House. ...shouts of joy when children spotted the Maryland State Police helicopter circling above us and aiming the spotlight at us. ...amazement on the faces of the families as officers carried in box after box of toys. ...three humongous mounds of toys that were spread across the main floor. ...excited squeals of children as they picked out bikes, games, dolls, Nerf guns, and every other toy imaginable. ...Pete, the man who started the program 17 years ago in honor of his mother, who was killed during a robbery for $60. ...tearful embrace Pete and I shared as I thanked him for doing this for us. ...encouragement he gave to me to cherish every moment. ...words Pete shared with the group of officers and families about Abby. ...tears Pete shed when he told them of the rarity of her syndrome. ...smile I had when Pete t...

...isn't it just like God to give you a day filled with encouragement and good news after having a rotten day? Yesterday was pretty rough.  We'll just leave it at that, because that's not what this post is about.  This is about today being a pretty fabulous day. *  Abby was awake for most of my visit and interacted with me quite a bit.  While her test results aren't back yet, she's feeling much better and they don't think that she has the virus they tested.  (Yes, we're still on contact precautions--but I'm determined to go in with street clothes on Christmas!!) *  Caleb was well-behaved and really enjoyed his medical play time with Megan.  She gave him an entire bag full of medical supplies to keep! *  Old friends of ours from high school, Keba and Aaron, came to visit us today while they're here from Seattle.  It was great catching up with them! *  I was able to find a baby doll for Caleb and gave her a trach and g-tube just ...

Matt and I are incredibly thankful for the many people who have come alongside us to show their love and support.  While we never imagined ourselves in this position, we have been amazed with how God has provided for us.  The thoughtfulness behind the cards, emails, and gifts has been so sweet and we can feel the prayers being said on our behalf.  Abby is one loved little girl!  Thank you all from the bottom of our hearts.  That seems to be a miniscule way to show our appreciation, but we truly are very thankful for all of you!

How can you not love this girl?! There's no way I can focus on just one  area of thankfulness this week!  After all, it is Thanksgiving!  I'm just going to list a bunch in no particular order. I am thankful that... First of all, Abby is with  us!  There was a time when that was uncertain, so every second we have with her is a miracle! She is actually able to be off of the vent for 4 hours at a time.  She's not completely vent-dependent. I have been able to connect with Tara and Reagan, two CCMS moms who understand what we're going through. We have so many family and friends who have been absolutely amazing and supportive of us through all of this. RMH has been such a blessing to us and that we have met so many wonderful people here. My sister has so faithfully watched Caleb and provided him with stability. We are able to be together as a family on the weekends. There are so many wonderful NICU nurses, nurse practitioners, respiratory th...

Ah, how I have missed Thankful Thursdays!!! I am always thankful, but I have pretty much been a blubbering, I-am-thankful-for-everything-and-can't-say-it-without-crying mess these days!  My sister commented on how I am much better at writing out my feelings than I am saying them because I don't start crying...she's sort of right.  I still cry, but you can't hear or see it.  :) Anyway, this week's Thankful Thursday is totally dedicated to my amazing husband.  We've been married for 6 1/2 years and I don't think that either of us invisioned this sort of situation when we said our vows.  Sure, we went through your average young married couple trials and definitely struggled to make ends meet those first few years.  But who really thinks about in sickness and in health translating to as your daughter fights for her life ?! So, I'm going to brag on him a bit.  Matt has been a rock through all of this. When I say all , I mean right from the beginning....