Wednesday, January 25, 2017
I seem to have a bad habit of only checking in every so often. This is changing. Today.
We've had an exciting past few months filled with good news, positive perspectives and amazing opportunities.
Rosemary had her last cardiology check up December 13. Verdict...heart function is good, no changes. No discussion of transplant this time. Possible cath in the spring, but we're going to stay the course. Rosemary had her Fontan taken down in March 2010, after a tumultuous, yet triumphant 6 month stay at Children's National Medical Center in DC. We've been out and on autopilot ever since.
I'm honored to say that Rosie has been nominated as the Face of Heart for the American Heart Association's Open Your Heart Fundraising Gala this year! BIG deal! Being able to share our "why" in a way that may help other heart families is HUGE! February is Heart Month and we are going to be very busy. I am so proud of her. She and I began making appearances and sharing her story back in December at events like the Go Red For Women kick off campaign, and we recently began attending pep rallies around Maryland for the Annual Jump Rope For Heart campaign.
Rosie has begun to gain a deeper and more profound understanding of just how many people she has touched because of her heart. She's had a roller coaster of emotions, some days good, some days not so good. On particularly hard days, she's said things like, "Why was I born this way? I just want to be like everyone else! I don't want to be special...I'm scared."I try to tell her to look around at where we are, how far she's come. I talk about God's plan for her, that although we don't always know what lies ahead, we need to trust that He is leading the way. He got us out of hell on Earth, and we're living a pretty amazing life. I remind her of all of the children and adults who have hugged her, thanked her, told her she was their hero, that they were proud of her, and that she changed the way they think about their own hearts and how to better take care of themselves...including her 10 year old brother, Lee, and her 18 year old sister, Shea. Their relationship has changed too. We all have a greater sense of gratitude for how far we have come since her last open heart.
Last night while I was binge watching "This Is Us", her feeder went off with that annoying, dual, high pitched chirp. She's an erratic sleeper so her tossing and turning causes her feeding tube to kink, subsequently creating a panic for anyone within ear shot of that damn thing. I smiled and said, "Rosie..."...as if she did it on purpose...and I marched quietly up the stairs and reset it. It went off again. Each time I went up to reset it, I thought to myself, literally, "Thank you God for my life. My very normal, not living in a hospital life." I came back downstairs and resumed my TV binge and immersed myself back into the tube, forgetting who and where I was. Just as I was about to LOL, the feeder went off...again. It felt different. I can't explain it. Instead of smiling and calmly climbing the stairs, I ran up there, heart racing and when I got to her bed, I stared, watching for her chest to rise and fall, like it always does. And it did. My heart was pounding. I have no idea why this time I thought there was a need to freak out, but I did. For no reason, thank God. Haven't done that in a while.
It was fine, just like the last 753 times it went off. So I checked myself back into sanity, smelled her forehead, kissed it, looked down at her perfect little feet, and I kissed them too. I actually smelled them before I kissed them, they don't stink. TMI. Then I gently tucked them back under the blankets.
She's home. She's breathing, unassisted. Unlabored. Spontaneously.
There is no pain, anywhere. It's quiet, (I dare say). She's comfortable. She's dreaming about...well, whatever wonderful things that Rosie dreams about, because she's had 6 amazing years of healing, growing and living outside of the hospital. And THAT, my friends, is the best gift anyone could possibly have.
Feeling incredibly grateful today, and everyday, for our gifts.
Praying for our friends in the CHD community who have lost, and are losing their loved ones, in particular, sweet Noah Bella Michaelis and Kolton Hessman. God speed, sweet warrior angels.