Friday, April 29, 2011

Easter Bunny

The Easter Bunny didn't really get her act together to stop by our house on Saturday, the day that she normally visits pastors' kids, but she did manage to stop by during Becca's nap on Sunday.  Becca LOVES the Little People dollhouse she left for her!  






And Becca really got into finding the eggs that she and Kate dyed on Saturday!


Afterwards, we spent a lot of time saying, "Tank you, Eassa Bunny!" since Becca insists on thanking people (and bunnies, I guess) over and over and over and over and over.  She's a grateful kid.  :)

Thursday, April 28, 2011

Easter 2011

Pretty girl in her pretty dress...maybe not a deeply theological treatise on Easter, but, really, nothing drives home the point of Jesus' victory of life over death to me more than a beautiful, growing girl who was supposed to die.  Instead, she dresses up purty for Easter and exclaims, "Jesus is ayive!  And painting!" while ringing her alleluia bells.  That's sermon enough for me.  Now exactly WHAT Jesus is painting, I have no idea.  Couldn't be much prettier than this:


When I started putting this bow on her, she said, "Too big!"
I told her that no bow is too big for Easter.  :)

Self-portrait with Mommy

Buster is jealous that he didn't get a pretty Easter dress.


HAPPY EASTER!
And remember my favorite liturgical public service announcement: 
Easter is a season, not a day - so I'm not late!  :)

Thursday, April 14, 2011

Pastoral Definition of Infertility

While I was perusing my friend Jessica's new, fabulous website, www.ministrymatters.com, I can across the entry on infertility in the Dictionary of Pastoral Care and Counseling.  If you are curious as to what this experience is like or if you want to process your own experience of infertility a little bit, take a minute to read it here.  It kind of hits the nail and all for me, except that I don't really hear the "Be fruitful and multiply" bit being an actual directive from God to us to procreate (but I can certainly see how some people would).  Anyhow, just thought I'd share.

Sunday, April 10, 2011

Update on Itty Bitty Becca's Team

It's t-minus 7 days until the 2011 March for Babies!  (And, in case you are wondering, that's exactly why the Becca blog posts have been so few and far between as of late.  But have no fear - I have been snapping pictures and videos to upload and share with you when my schedule is a little bit back to normal.)


So how is Itty Bitty Becca's Team doing?  Quite well!  In 2009 and 2010, we averaged about $1500.  This year, we are already up to...wait for it...$3710!  WOW!  That's 247% of our average!  We've made a big jump this year by branching out with our fundraising efforts and by having more of our team members reach out to their friends and family to raise funds, too - big thanks go to Ashley, Christy and Emily, who have raised almost $600 among them!  Our team is consistently tracking in second place among the Music City family teams, but there are 3 teams right on our heels.  I think it's going to come down to the wire!  The first team place is over $10,000, so I don't think we're going to catch them, but we could hold our second-place position with a solid final week push!  (But I'm not competitive or anything...)  


I've revised our team goal up to $4,000, which solidly ranks us among the top family teams.  We are $290 away from that goal, so I think we can make it - but of course, we need the help of all of our favorite procrastinators...so if you've been meaning to give but just have gotten around to taking the time to do so, take a minute now and donate at www.marchforbabies.org/ittybittybecca.   That's Becca's personal fundraising page - I've set it up so that she can be a Top Walker herself (that's the VIP status for walkers who raise over $1,000) - after all, she is the most important walker on our team!  :)


You may be wondering how the triathlon training is going...and I've been meaning to give it a dedicated post, but since I haven't gotten around to it yet, I'll give you the skinny here.  So, first off, let me say that it's going well-ish, and I'm confident that I'll be able to complete the race, as long as there isn't a time limit they haven't told us about.  :)  But let me introduce you to my new best friend:

Yep, after all of the concerns about Becca's lungs, I'm the first one to be diagnosed with asthma!  Wohoo!  Of course I'd rather it be me than her, but I'd prefer that none of us have to deal with it.  I had some really super minor asthma issues as a kid, and according to the pulmonologist (yep, the first time Becca met a pulmonologist was at my appointment - ironic!), it's not unusual for it to come back in adulthood.  Turns out things like training for a triathlon bring such issues to light.  I've got the "rescue inhaler" above that I take when I need it and/or before working out, and we're trying out a maintenance inhaler that I take nightly.  They both seem to be helping but they haven't exactly made the problem disappear like I had hoped.  That's probably a little too much to ask for, but we'll see what the doc says at my follow up in a few weeks.

So, needless to say, that set my training back a little bit.  Add to that John's being sick over a couple of weekends and Becca's impromptu hospital stay and subsequent recovery, on top of the busiest season at work, and I haven't exactly hit my training goals, especially not in terms of the Tri's for Tri's fundraising.  Right now my fine sponsors owe a whopping $3.35 for every dime sponsored, which is far from my original goal of $15 per dime and still far from my revised (and much more realistic) goal of $10 per dime, so, for all those sponsors willing to bear with me, I'm extending the fundraising period until up to the triathlon.  That gives me about an extra month post-March for Babies to hit the training hard and make up for some lost time.  In retrospect, that's what I should have arranged from the beginning, but I'm not sure I really conceived of how busy the weeks leading up to March for Babies would be.  And since we can collect March for Babies money through the month of May, the dimes will still count toward our team total.  Sponsors, if you're not on board with the extension, feel free to cash out now at www.marchforbabies.org/ittybittybecca.  Otherwise, know that I'll be working hard to earn your dimes - staring next week.  :)

Our team t-shirts should be shipping to me tomorrow, so I'll probably be able to start handing them out at church on Wednesday.  If you haven't yet paid for your shirt(s), you can send me a check or drop me an e-mail or facebook message, and I'll give you instructions on how to pay through PayPal.  

And just in case you need a reminder of why we Itty Bitty Hills are working hard for the March of Dimes, see below.  The money we raise gives other mommies and daddies the chance to cuddle with their little lambs, too. Thanks for all your help!


Monday, April 4, 2011

On Therapy

One of Becca's old therapists is giving a lecture on working with pediatric patients and their families, and she asked me if there was anything I'd like to pass on to a group of aspiring therapists.  Apparently, I had a lot to say, so I thought I'd share it with you.  Preemie/special needs parents, what else do you have to add?

So here's my advice to therapists, which is also fairly applicable to nurses, now that I think about it.



Balance the professional and the personal.  We've had some sessions in which I've felt like the therapist and I interacted more than Becca and the therapist.  But worse was the therapist we had that was SO "professional" that it was completely isolating.  I didn't feel like I was involved in her therapy at all.  I sometimes wondered if I should just wait in the lobby - Lord knows I could have used some downtime for myself and a book!  I know absolutely nothing personal about that therapist to this day.  (And if I'm completely honest, I'll admit that I'm petty enough that it at times affected my implementation of our home therapy program.)  Being the parent of a preemie is SO SO SO isolating.  Remember from September through March (or whatever RSV season is in your area), family, doctors, nurses and therapists -- and maybe a few close friends -- are essentially the only people we see and interact with on a regular basis. Seriously.  So be friendly with us, even if you can't/don't want to really be friends with us. You are our support system.  I mean, I don't need to know about the fight you had with your boyfriend last night, but I love knowing that you've got, say, a daughter the same age as Becca or a kid in college or a pair of pugs that are the light of your life.  Give me something to humanize you and make me feel like we are partners in our efforts.  (Note: if you do have a child about my child's age, DO NOT compare their abilities.  We do that enough already and don't need your help in that area.)

Know that therapy fatigue is real.  Most of these kids will be in multiple therapies each week, each with a home therapy program, likely alongside lots of medical needs.  Let us know what we need to be doing, but prioritize.  We can probably only manage about 2 assignments a weeks.  If it's appropriate, give us permission to sit in the lobby occasionally.  Most likely we'll want to be in the sessions, but every now and then a break is an amazing treat.

Work together with us on goals.  Don't just make them up on your own.  At least run them by us and see what our priorities are.  With all due respect, I know you are a professional, but in the grand scheme of things, what matters are MY goals for my child (and if they are old enough, their own goals), not your goals.  Therapists come and go, often frequently, but we're the ones raising this child.  Provide a written copy of the goals (whether it's hard copy or e-mail) so that we can remind ourselves of them and share them with other parents, caregivers, etc.  

Help us work with the doctors.  Sometimes you are able to get access to them that we are not able to get on our own.  Sometimes you can express our concerns to them and they will be received differently (and taken more seriously) if they come from you.  However, remember that we are the experts on our children, not the doctors. 

I can't believe I have to mention this, but it has happened on more than one occasion: if my child makes some kind of artwork/picture/design/anything on paper during the session, DO NOT THROW IT AWAY IN FRONT OF HER.  Even if it's a mess of shaving cream on construction paper to you, to them it's a work of art that they are proud of.  Set it aside, and when I don't take it with me, toss it - but not in front of the kiddo.  They notice these things, even at age 2.  Becca even requests that her pictures goes on the wall (we have a special frame) or on the fridge.  Sometimes she puts them up herself.  She knows that what you do with a picture is a commentary on it.  So respect her efforts and her feelings, please.

And in general, if we are a little high maintenance, a little (or a lot) scattered, not always punctual, and/or just generally nutso, give us some grace.  Unless you have been in our shoes, you can't understand the scars that our journey has left and the stress that we continue to be under. We have spent too much time fighting for our children's lives for us to be normal, and with therapy, we're still fighting for our children's quality of life, even if they aren't in physical danger anymore.  A pattern of missed sessions and non-compliance is one thing, but otherwise, a little kindness and understanding can go a long way with us. And we will love you forever for it.

Friday, April 1, 2011

Last Call for Shirts!

I just wanted to give you fine folks one more chance to reserve your  Astronaut Becca March for Babies 2011 shirt!  They are $15 each, with sizes from youth XS through adult XXL.  I may be able to get toddler sizes as well.  They are super-cute, and I'm happy to mail them to you for just the price of the shipping, which is usually about $2 a shirt.  (I can give you a more precise total later.)  I'm not ordering extras, so speak now or forever hold your peace!

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