Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Sunday, December 25, 2011

Our 2011 Christmas Card



We miss you, sweet baby. My heart is with you.

Thursday, December 22, 2011

Remembering Julia



Family arrived from Alabama, Florida, New Jersey, Illinois, New York, Pennsylvania, and Kentucky. Friends came from Maryland, Washington DC, Alabama, Tennessee, New Jersey, and, of course, Virginia. Childhood friends, college friends, church friends, work friends and colleagues, babysitting co-op friends, book club friends, neighbor friends, our kids' friends, and trisomy friends -- all gathered to remember and celebrate Julia, just as they did throughout her blessed life with us. We were honored and humbled by your presence with us on this day.


Our pastor from our church in Maryland graciously offered and agreed to share thoughts at Julia's service. We knew his words would be just perfect, because we know the genuineness and humility with which he leads the community he pastors. Marc then shared some thoughts from us including a huge thanks for the support we have and the lives that touched and blessed Julia's life. We also prepared a list of experiences Julia enjoyed during her time with us. I am including that below. A few months after Julia was born I found a poem by E.E. Cummings entitled "I Carry Your Heart in My Heart." It seemed a perfect description for how I felt about Julia from the beginning. Marc read this poem in the service as I would have no voice to be able to speak. He closed with the words from this blog post. He did such a wonderful job. He made us laugh as we remembered joyful times and made our hearts swell with love as we remembered the girl who fought so hard to be with us for as long as possible.


Finally we prepared a slideshow of photos and videos of Julia with us.  Click here to see the slideshow.  We used three songs for the slideshow: "Julia" by The Beatles, "Lullaby" by The Dixie Chicks, and "Over the Rainbow" sung by the cast of Glee. The slideshow provided a wonderful time to ooh and aah over Julia's adorableness and to laugh at her big smiles and her sister's and brother's sweetness. She was and is so very loved and cherished. 

Julia's Experiences include:


-Celebrating every holiday with us -- Christmas, New Year's, Groundhog Day,ValentinesDay, St. Patrick's Day, Easter, Memorial Day, 4th of July, Thanksgiving
-Celebrating everyone's birthday -- and Mommy's and Daddy's twice!
- Celebrating her birthday every month
-Meeting Santa Claus on Christmas Eve when he came to deliver presents
-Watching Auburn win the College Football National Championship
-Receiving a letter from President Obama
-Meeting all of her great-grandparents
-Going to Washington DC to see the Cherry Blossoms
-Hanging out with her cousins
-Hiking with us at Burke Lake
-Taking a road trip to New Jersey to see aunts, uncles, cousins, and friends
-Riding in an airplane
-Feeling the sand in her toes on a Florida beach
-Seeing a sunset on the beach
-Visiting Alabama and going to Nana and Grandad's Lake House
-Going to neighborhood summer cookouts
-Meeting her church family in Alabama, Maryland, and Virginia
-Having friends and family visit from as far away as Alaska and as nearby asnext door
-Surviving an earthquake and a hurricane at home in Virginia
-Dancing at a wedding
-Watching Isaac play soccer
-Watching Sydney dance
- Being endlessly entertained by her siblings
- Posing for thousands (literally) of pictures
-Celebrating her first birthday with a big birthday bash
-Being the most loved and most held baby girl ever!

I Carry Your Heart by EE Cummings
i carry your heart with me (i carry it in my heart)
i am never without it
(anywhere i go you go, my dear;
and whatever is done by only me is your doing, my darling)
i fear no fate (for you are my fate, my sweet)
i want no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;
which grows higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart (i carry it in my heart)i carryyour heart with me(i carry it in

Monday, December 19, 2011

Memorial Service

The memorial service for our beloved Julia will be on Tuesday, December 20, at 10:00 AM at Fairfax Memorial Funeral Home. Thank you all for your prayers and support. We truly feel loved.

Fairfax Memorial Funeral Home
9902 Braddock Road
Fairfax, VA 22032
http://www.fairfaxmemorialfuneralhome.com

Donations can be made in honor of Julia to the Support Organization for Trisomy (SOFT):

SOFT USA
Barb Vanherreweghe
2982 South Union Street
Rochester, NY 14624
www.trisomy.org








Saturday, December 17, 2011

Julia Grace

Our precious baby, our sweet pea, our beloved daughter and sister, our Julia Grace went home to heaven on Friday, December 16. She had been battling a cold this week but passed suddenly due to cardiac complications. I saw her and still do see her as perfect, so sometimes I almost forgot how sick her little heart was. The heart that was only supposed to give us a few days with her gave us twelve and a half months with her. She is my inspiration. I can be strong because she has been so strong. I can do the impossible because she did the impossible.
I am forever changed and forever in love with you, my perfect Julia. Our hearts are broken, but yours is now perfect. I am thankful that you are now well and whole. We will strive as a family to make you proud just like you make us so proud to be your family. We miss you so very, very much. We love you forever, dearest angel.


Tuesday, December 13, 2011

Sick Again

A few members of our household have had the sniffles over the last few days. Until last night, Julia had managed to avoid it. She received two vaccines yesterday -- Prevnar and Hib -- which could also have contributed to the very icky cold she now has. My poor little baby. It's so tough to watch her cough and struggle to breathe and eat. We are certainly hoping and praying that we will be able to manage things st home. Please keep Julia in your prayers!

The Birthday Celebrations


Julia on her birthday! Age 1!!!!

I am finally getting around to posting about the birthday parties we had for Julia in the 10 days or so surrounding her monumental first birthday. We celebrated first with our family who were visiting at Thanksgiving. We decorated with balloons, streamers, and signs and a beautiful wreath Julia was given as a gift. The wreath was made by my sister and her kids and it is fabulous! Julia was dressed in her custom first birthday onesie (made by my talented cousin Kim) and a birthday hat. We enjoyed singing to her and eating some tasty cupcakes from Cupcakes Actually in Fairfax. She was given some great gifts which all of the kids were very willing to help open!

Celebrating with the cousins!


Mmmm...red velvet cupcake!



On Julia's actual birthday, she slept the day away after being awake all night. She apparently wanted to celebrate for the first 12 hours of her big day! We were able to wake her up for a chocolate birthday cake and a round of presents from our little family. She then went back to sleep!


Julia in her birthday hat!



A few days later we gathered with 75 of our closest friends at our home to celebrate Julia's big milestone. My brother and sister-in-law came down for the party, too, which was a great help. A very gifted neighbor made Julia's exquisite owl-themed birthday cake. Fortunately it was a beautiful day and the dozens of kids who came could run around the yard. Julia was wide awake for the entire party. We loved celebrating with the friends and neighbors who provided us so much support over the last year. They have been our family here in Virginia (and Maryland), and have helped with groceries and meals, provided child care for Julia and our older kids, kept up the yard work, given baby showers, and celebrated each step of Julia's first year with us. It was only right that we celebrate with these amazing friends. Thank you to everyone who made this birthday so special. We appreciate all of you! And we love you to pieces, Birthday Girl!












Thursday, December 8, 2011

December

All of the birthday festivities were a lot of fun last week. Julia was a good sport during all of the photos, visitors, singing, etc. Pictures and details to follow soon!

Last week was a very emotional one for me. Emotions ranged from extreme joy to extreme sadness and everywhere in between. Most of the time I try really hard to live in the present and to appreciate Julia for the tiny miracle that she is, and most of the time I am successful. Last week, though, I had a very difficult time both reliving the events of a year ago and fearing for the future.

I am glad for a new month and a new week and a renewed outlook. I'm glad for holiday parties and ornament exchanges and cookie baking days to look forward to. This week we are back to our "routine" -- sleeping a little, juggling activities, avoiding the cold and rain as much as possible, keeping Julia's doctor and therapist appointments. Our house is beginning to look a little like Christmas. The tree in the front yard is covered in lights and looks beautiful. The Christmas tree inside is up and is mostly decorated. The stockings have been located but not yet hung. It is a very slow process to decorate in between times of Julia needing hands on attention. Also I'm pretty sure I did not personally put away the decorations last year, so I am still trying to locate a few things. It should all be done by December 23 when our guests should begin to arrive. The decorating and shopping (from home of course) are a nice distraction and have helped me to feel more positive. I think I am ready for some Christmas music!