Once Upon a Time...

Once upon a time
Their chests squeezed with all their might
To inhale life











Once upon a time
Their livers erratically managed
To maintain their lives

Once upon a time
Their bodies seemed amazingly and wrongly
Too small





Once upon a time
Their mommy cursed her body and its inability
To sustain their lives

Once upon a time
Their tiny toothpick sized fingers wrapped
Themselves around my gigantic pointer finger

Once upon a time
Her eyes could not yet open
To see the world around her

Once upon a time
Her skin and eyes glowed so pumpkin orange
That she needed phototherapy

Once upon a time
Her heart rate flatlined and a team of doctors and nurses
Rushed to save her life

Once upon a time
A central line required her first hair cut
To save her life

Once upon a time
A generous blood donor donated O negative blood
To tranfuse the life back into her body three times

Once upon a time
Monitors measured breaths, heart rates, and temperatures
To alert their nurses of their vitals

Once upon a time
We spent long hours bedside at their incubators
To never miss set backs or much desired progress






















Once upon a time
Praying for progress and hoping for miracles
Was a minute-by-minute ritual

Once upon a time
We experienced jealousy at what should have been
Even though it felt wrong to have that emotion

Once upon a time
Precious babies around our girls
Earned angels wings

Once upon a time
We thanked God for each new CC added
That didn't result in a residual or stopping feeding

Once upon a time
We praised the miracle of modern science
As apnea monitors blared in the dark of night
















Once upon a time
We had daily homework of OT, PT, and speech therapy
To make sure their bodies worked right

Once upon a time
We were forced to become members of a NICU club we did not want
To join

But with time and acceptance
We've learned that our former preemies
Are miracles who still need our special protection and love

And a NICU reunion reminds us that we are
Life time members of that NICU club who will always know
That former preemies will always be preemies inside and out and do not just catch up

Laternenacht 2008

As we left the minivan, Meghan exclaimed, "No Grandma! I can do it." Meghan's 4-year old independent self wouldn't allow for Grandma to help her out of the van. I smiled at her indignant response, and so did Grandma Kathy.

As the girls found the side walk, they both asked for their lanterns. We reassured them that they would be able to carry them once we got inside the gym, where the singing program would take place. Suddenly, Meghan took off running down the sidewalk. The pom pons on her pink hat bounced in cadence with her steps.

"Meggie! Please don't get too far ahead. There are a lot of people and cars around here. We don't want to lose you," I shouted. Gracie ran after Meghan. As she skipped along, her long blond hair shook in the light of the street lamps.

It was Laternenacht at the girls' school, which is a politically correct version of Martinstag, a German holiday celebrating Saint Martin and his good deeds. Laternenacht is a big deal for these grade schoolers. They had been preparing with their teachers for weeks by making lanterns and practicing the traditional German songs such as Laterne, Laterne.

This year, we arrived early enough to find a spot near the front of the gym. We camped out, and gave each of the girls their lanterns. The folded accordion-style paper of the girls' lantern lights glowed. They were traditional style German lanterns in the shape of a ball. Two round metal wires held each ball together. (A big thank you goes to Zoe and Sam, who gave them to Grace and Meghan as gifts.)


















Soon afterward, the singing program began. A few volunteers played guitars and a blurry overhead projector showed everyone the words to the songs. The children, very obviously, knew all of the words and melodies by heart. Grace and Meghan sang their little hearts out, and when the entirely auf Deutsch program was finished, they quickly stood up and put their coats on.
















Laterne, Laterne

Laterne, Laterne, Sonne, Mond und Sterne!
Brenne auf, mein Licht! Brenne auf, mein Licht, aber nur meine liebe Laterne nicht.

















After a short 20 minute sing along, we all went outside for the lantern procession. It was a crisp fall evening, and leaves crunched under our feet. I held Meghan's hand, and she would periodically whine that she wanted to be carried. Charlie eventually put her on his shoulders for a ride. Grace proudly carried her lantern, but eventually ended up skipping and hopping along. Her lantern fell off its perch a few times, but was no less for a little wear and tear.





















It was our second Laternenacht but will be one of many we'll attend in the coming years. Time is speeding up as my girls go full speed into their school years. I soaked in the memories as I'm sure I'll eventually reflect on nights like Laternenacht as some of the best of my life.
















We reached the end of the procession and piled back into the mini-van. We decided to get some ice cream as a treat and then put the kids to bed. Ah to be a kid again...

Gratitudes

It has been a rough day for me emotionally. I guess life's recent events snuck up on me. Tomorrow's surgery for Grace is especially in my thoughts.

Right before bed, Grace said, "I think I'm a little scared now Mommy. What if I wake up during the surgery? I don't want surgery."

A few heart string tugging moments later, and she was off to bed anyway. I honestly feel for her. She's been through a lot lately with my brother Tim going off to Army training, her great friend, Zoe, moving to Switzerland, and now, a surgery for her, too. All of this in one week.

So, I've decided to focus on being grateful at the moment:

No one is useless in this world who lightens the burdens of another.
~ Charles Dickens

Here are my gratitudes:

1) My family, who show me that life is about the moments in between the routines. I love you Charlie. :)
2) My IRL friends new and old, who comfort me and surprise me by checking in before the surgery. Amy, I got your message, and will call you back tomorrow. Tony, thank you for talking me down at lunch today. I benefit from your clarity.
3) My online friends who send me postive thoughts and prayers for Gracie. Most of you, I've never met but I've gotten to know who you are through your eloquent words.
4) For my 89 year old Grandma Eve, who called me tonight to make sure I knew she would be praying for Gracie tomorrow. I'm so blessed she is still a part of my life.
5) For Lora at Ordinary Miracles, who graciously bestowed a blog award to me. Thanks so much Lora. It was such a pleasure to meet you in Saint Louis last month, and an honor to get to know your beautiful faith-filled family. Your blog is a source of encouragment to me too as we've not been sent down the liver transplant journey...yet. It is comforting to see your family adjusting to Nathan's recent gift of life.

I'm not sure of the source of this blog award. If anyone knows the source, please let me know. I'd like to give them credit, but here it is:



All blog awards are meant to be passed on, and I will pass it on to:

Childlife of In the Life of a Child: Michelle often blogs about her wonderful daughter, Jacqui, who was born with a rare birth defect called a lymphatic malformation. However, Jacqui is not defined by the medical events/issues which took place in her life. She has the heart and soul of an angel, and Michelle and her family impress me with their ability to take notice of life's blessings. Michelle, thank you so much for all of your words of encouragement and support over the past year. We've never met IRL, but your gift of expression allows me to take a peek into your beautiful life. If you have a chance, stop by her blog. It is well worth your time.

Now, I'm off to bed. I don't think I'll sleep well, but I'll try. Good night my friends. Thanks for your positive thoughts and prayers.