Dancing in the Rain
Slideshow Image 1 Slideshow Image 2 " alt="Slideshow Image 3" /> src="http:>

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

Saturday, November 30, 2013

The Third

Dear Julia,
Today is your third birthday!
I think often of all the fun things three year olds can do and I miss you.
I then think of how precious three year olds with trisomy 18 are and I miss you.
We miss out on so much not having you here with us.
But today we choose to celebrate you on your third birthday.
 Although you are never far from our thoughts and always in our hearts, 
today we will remember you and the life we shared with you; 
we remember what you taught us and the gifts you gave us, 
and we will cherish being together as a family.
There will be birthday balloons, purple flowers, and miniature cupcakes.
That's what we would do with you here, too -- celebrate you and us. 
We love and miss you. Sending you many hugs and kisses.

Happy birthday, dear Julia, happy birthday to you. 

To read Julia's birth story, click here.
To read about how we celebrated Julia's first birthday, click here and here.

Friday, November 29, 2013

1 Day until 3 years

Julia spent a year's worth of holidays with us. She was part of Easter, July 4th, thanksgiving, and Christmas and all of the ones in between. Each of those days was made extra special by having her with us. We knew we were lucky and blessed to have any days with her. We did not take her presence for granted. We knew better. Her presence was a gift.

Thursday, November 28, 2013

2 Days until 3 Years

The big kids have often been involved in several activities outside of school, and this was true while Julia was with us. For two of Sydney's activities, piano and dance, Isaac, Julia, and I waited in the car for her to take lessons. Isaac usually watched a DVD, and I would sit with and hold Julia. These times provided a change of our usual scenery, so I would describe our surroundings to Julia. We listened to music, sang songs, played games, and looked out the window. Sometimes she slept. These outings were special precisely because they were so normal. I am continually thankful that our family life with Julia maintained as much normalcy as possible.

Wednesday, November 27, 2013

3 Days until 3 Years

Cohen certainly loves his baths these days. Julia, also, was a big fan of baths. She seemed to relax so much better in a warm bath. I remember how she liked to float while I supported her head. I think it was a great deal easier for her to move her arms and legs in the water. Sweet girl. Miss you, Julia!

Tuesday, November 26, 2013

4 Days until 3 Years

I asked Sydney to tell me about one of her favorite memories of Julia. She had many, but the one she wanted me to include here was about how she liked to dress Julia. She enjoyed picking out her clothes when given the opportunity, and she would almost always choose something pink. :) When Julia was in her first months, she was small enough to fit into Sydney's American Girl doll clothes. Sydney thought that was pretty amazing. Thank you, Sydney, for that memory and the smile it brings to my heart.

5 Days until 3 Years

Julia, like most babies, loved to hear "baby talk." She especially responded to baby talk by Sydney and Isaac. They had the sweetest way of talking to and interacting with her. She would look for them when she heard them around the house and would zero in on them when they talked to her. I also loved to hear Sydney and Isaac talk to Julia. Their love for her, their baby sister, was so evident in their words, their tone, and their gestures. I am thankful that they were so willing to love her with their whole hearts. I am very proud of all of them. 

Sunday, November 24, 2013

6 Days until 3 Years

In the first few days of Julia's life she was unable to take a bottle. We fed her a tiny bit at the time with 1ml syringes. After a few days she was able to take in more and more of these formula filled syringes at a time. And one day, we noticed that she was developing a suck reflex. This was huge for a baby with trisomy 18!!! At that time we decided to try a preemie bottle, and to our great surprise, she began to successfully feed from a bottle! The bottles contained tiny amounts at first but she did it!! She continued to slowly increase her intake throughout her sweet little life. I am very thankful for the responsiveness little Julia showed -- especially in those early days when we didn't even know we could have hope. She gave us that hope. And so much more.

Saturday, November 23, 2013

7 Days until 3 Years

Julia, 9 Months, Aug 2011

Today marks seven days until Julia's third birthday. This week I will share some of the little things that make up the everyday memories of our time together. Here is the first memory about Julia that I would like to share. Julia was very sensitive to sunlight. Every time I walked outside with her and the sun was shining brightly, she would sneeze five times in a row. Then we both would smile. Did she smile because sneezing was funny? Because the warm, bright sun felt good? Because I would laugh when she sneezed? The reason was not too important. When she smiled, I knew all I needed to know -- that in that moment, all was okay in our world.

Friday, November 22, 2013

Cohen at 18 Months

At 18 months I Can...
- walk
- run
- dribble a soccer ball (in a toddler kind of way)
- say about 30 words
- express my opinion in words and actions
- climb
- follow simple instructions
- eat with my 12-going-on-14 teeth

- Sydney and Isaac (or Syd and Iyaac, as Cohen says)
- chocolate
- yogurt
- scrambled eggs
- cars (ride-on and toy cars)
- balls
- outside 
- going to the bus stop
- bath
- dancing 
- books
- "helping" put away the laundry
- playing piano with Sydney
- shoes
- Gymboree class
- playing with his friend Cody
- peekaboo 

- getting into his car seat
- going to bed
- changing clothes
- diaper changes
- going inside after playing outside
- staying in a cart or stroller for very long
- staying still for photos 

Cohen is a fun little guy who is always on the go. His words are precious to hear and his different tones are very communicative on their own. He keeps us busy, keeps us laughing and smiling, and keeps us young. 

Monday, November 18, 2013

Two Weeks

Julia's birthday is just under two weeks away. It's been nearly three years since she was born. I keep waiting for everything -- the memories of her birth and of her first birthday and every monthly birthday celebrated in between those two dates -- to overwhelm me but so far I'm feeling okay. 
Her birthday this year falls on the Saturday after Thanksgiving, so it will be a busy time spent with various family members who will be visiting. 
We plan to remember her birthday with a some fun outings and activities together as a family. We can share a lot of laughs, a few (or many) tears, some stories, and, as requested by Isaac, some cupcakes. We will celebrate all that she means to us, and we will miss her tons. As always. 

Tuesday, November 12, 2013

MCM 2013: Team Julia

Marc and our friend, Josh, completed this year's Marine Corp Marathon! They ran in Julia's memory as part of Team Trisomy 18. It was a beautiful day--perfect for running the race (I'm told) and perfect for watching the race. The kids and I made signs and took the metro downtown to mile 18 to see Marc and Josh. Seeing the constant stream of runners along the Potomac River or running through the National Mall was really amazing. Thanks to modern technology, we were able to track Marc and know when he would be coming our way. We were all so excited to see them and to see that things were going so well! We are very proud of Marc (and Josh) for running for Julia! And we are thankful to so many who contributed to Team Trisomy 18! Team Julia raised $3,415 (well beyond our $2000 goal!), and the combined 11 members of Team Trisomy 18 raised over $20,000!