Joyful Expectation

Spring is full of firsts: first hike, first lake trip, first St. Patty’s day, first Easter – all fun times and lots of missed photo ops!  We had some pretty cute St. Patty’s day outfits picked out, but Hope got a little excited and had a blowout before the camera could snap up a shot or two (kicking off a theme).  So we put one of her cute green outfits on the next day and went to the zoo!  We figured the Zoo is better than the aquarium because it’s at least open air (vs. closed in, recirculating air, etc.).  It took most of the day to get ready for the excursion, but we finally made it with an hour to explore left.  I’m not sure when they started serving vino at the Zoo, but cheers to you Zoo for knowing how to make the Zoo even more enjoyable for parents. I’m not sure whether it was the early warm temps or the craft beer in hand, but the parents certainly seemed pretty pleased to be walking around the Zoo that day.  We got a special pillow to protect her G-tube so John can wear her in the Bjorn and Hope loves it!  John puts this on and she screams if he stands still.  It’s adorable to me, but I think John feels a bit like a horse being prodded on when she screams.

Zoo-Day

Say what, Mom?!  You wanna take a picture where??

 Gross, Dad.  Don’t get any closer.  Do you know HOW MANY kids touched this thing while we waited?  

We’re getting dangerously close to ground zero Dad.  Put this ship in reverse.  

Dad!!! Don’t get me any closer to this thing – there are GERMS!?!!!!!!!!

We stopped by to meet Fiona & co.  I can’t believe how small Fiona still is.  Watching Bibi nudge Fiona into the water melted our hearts.  

We are holding our head up, experimenting with fingers in our mouth and have discovered a new sound- a screech that drives Daddy b-an-an-as. More cute pictures 🙂

Check out this head control!

On the heels of our missed St. Patty’s Day shoot, she also pooped in our Easter outfit – before we could get a picture.  You may have noticed a bit of a theme.  We promise a makeup photoshoot as soon as Rose and Agnes (our favorite hospital photogs) start making house calls.  We so desparately strive to still have these pieces of normalcy, like fancy photos, but I just have to admit that It.Is.A.Freaking.Struggle.  There’s an imaginary bar I’m always trying to keep up with that makes me feel like I’m failing rather than keeping up. I’m missing her first St. Patty’s day photo shoot, her last two monthly shoots, her 90 day photos, and her Easter shoot went to $hit – quite literally – and all of these holidays are overshadowed by an anxiety that exceeds my capacity to cover.  John and I are just starting to realize that the hospital wasn’t the hard part.  The hard part is finding out how to create a new normal for rest of our lives with this little baby girl that shines such a sharp light on living in the present. We do our best and keep our spirits up and enjoy whatever candid shots we manage to get. Lucky for us, we got plenty of super cute candids of her in her bunny hat and snuggling the giant fox at the cabin.

The longer we are away from the hospital, the more it sounds like we were released from prison!  We talk about what life is like on this side, reference what life was like back when we were ‘on the inside’, etc.  And we revel in the freedom we have on the outside, of course, and talk about not wanting to go back on the ‘inside’!  We’re trying to make as much of each and every day with Hope, living this adventure of life we are lucky enough to get to enjoy with our sweet girl.

Our friends from the CICU shared a sign with us a while back about hope (the noun) and I can’t help but feel it’s poignancy, for us particularly. It says, “Hope is the joyful expectation of something good“.  I think, as a transplant parent, you have a big choice to make: live in fear or accept each day as a gift of joy.  Regardless of fear, or missed appointments, Hope’s screaming, puking or feeding struggles – it’s still a gift.  It’s not easy to live this way because fear is so easy to slip into, but John and I are trying our best to stay rooted in the joy we have at our fingertips rather than look backwards/forward and calculate what we didn’t have in the past or may not have in the future. We have to send a public thank you to Swati and Joseph for being such a source of continuing encouragement.

Swati and Joseph’s continued support made me think of one thing. It’s not easy to ask for help, but I know that we won’t make it through this without the patience, love, help and support of those around us. There’s a real void that has been left in leaving the hospital. It’s funny – I’d bet that most parents wouldn’t say being inpatient had benefits, but because we were there so long I think we got to see them. Living there for six months led to a pretty strong inpatient support system and now we have to make sure our home support system is just as strong. We always had people stopping by Hope’s room to check on her and they always checked on us, too. We had other parents, close nurses, child life and holistic health team members that had a special bond with both us and Hope that would come by and help keep us in good spirits. And this was all on top of our loving friends and family taking care of us with a steady stream of uplifting visits and plenty of food, of course. Adjusting to real life is hard! Please don’t misunderstand – we don’t want to go back inpatient for anything!!! Just like we had to adjust to the reality of long-term inpatient life, coming home has been a whole other adjustment. In many ways, we feel like brand new parents – we have only been home with her for two months – I mean in “normal” situations the mom wouldn’t have even been finished with the 12 weeks of FMLA leave. We are constantly tired, worried we’ve forgotten something or struggling to keep on top of when she needs to be fed and when she needs meds. Someone recently asked when we sleep and the similarity to new parents fresh from the hospital is there too – a few hours between midnight and 5:30 a.m. John says he’s found a new respect for sleep – and he already loved sleep before Hope! He was so deliriously tired on the drive home from the cabin a pretty funny exchange occurred. I was rattling off dinner ideas and I asked him what he wanted, to which he groggily replied, “a couple more kids….and WINGS!” Needless to say, I woke him up for a healthy discussion about waiting to grow our family, but wings are on the menu for sure!