Saturday, May 22, 2010
This is Carly George, and this week as i sigh a little sigh of relief in our own health crisis, my heart focuses on this wonderful family. They are so much like us. Mama Joany has grown children as well as her "late in life blessing", Carly, who is just a year younger than my Molly Kate.
The one thing especially dear to my heart, is the fact that Carly also creeps into the big bed at night, to snuggle between her parents, just like Molly does. I KNOW, I KNOW!! we shouldn't let this happen, but the look on Moll's face, as she holds both our hands in hers, is absolutely precious. The one look makes me realize how hard it must be for her to conform to her school and typical peers, as well as to our constant ABA (applied behavior) demands......but for one fleeting instant, we can see how happy she is to be right where she is and cannot deny her. I love that i could share that with another mom....a mom who understood.
Carly was born "enhanced" or having down syndrome. Unlike molly, her little heart was only half-formed, but through many surgeries, she healed....The family was again immediately devastated to learn she had developed leukemia. She survived the horror of that protocol and was in remission. The last few years she has grown stronger, joined her class at school and they too, began to live the typical life of a family with an "angel child" and all the joy that comes with that.
Last month, Little Carly, who had survived impossible odds to be on this earth, simply dropped and left it. They kept her alive long enough to be snuggled in between both her parents and she simply slipped away.
This week, everything is so much better in my life...mom is stronger by the day, school is almost done and really fun for molly, and I have some time off of work. Time to right my world, which has been spinning out of control for the past month. I can finally crawl off this rollercoaster of 2am phone calls from panicked nurses, rotating doctors by the day, Emergency Rooms, DNR requests, Ventilator arguments, ICU's and FEAR! Lord, the FEAR just eats you alive. I laid in bed one night and actually started chilling, the way a woman does right after she gives birth. The stress was taking it's toll.....and I'm so relieved that the pressure is finally abating.
It is unfathomable to me, that Carly's mom Joany will never get this chance, will never get off the roller-coaster, will never sigh the sigh of relief, or witness the "look" that comes at the end of the day, when your special child is surrounded by the security of a big, warm bed, and her loving parents. My heart aches for this mom.
I ask you to lift this family up in prayer. I ask you to spend that extra time with your family...let the dishes soak, skip the meeting, make the trip to visit and just bask in the love of your family.
Our worlds can be turned upside-down in the single beat of a little heart.