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

Saturday, June 30, 2012

Sweet Balloons

In the Trisomy 18/13 community, many families celebrate birthdays/special events with a balloon release. Two sweet families recently released balloons and chose to honor Julia and all of the other Trisomy angels with a balloon to heaven. The first was the family of Jordan as they remembered her on her third birthday. The second was the family of Aaron who just celebrated his 2nd birthday this week. Thank you, Cindy and Rebekah, for remembering our precious girl. Thank you also to Caleb's mom, Jeanette, for walking in memory of our angels in a Mother's Day 5K run/walk. She had a shirt made with names of our angels on the back for this walk. All of these precious lives will not be forgotten.

Friday, June 22, 2012

Sydney is 8!

Today I celebrate the 8th anniversary of the birth day of my first born, my oldest daughter, my amazing girl, my boys' and Julia's big sister, my tiny but ever growing dancer, my inspiration -- my Sydney.  I truly could not have made it through these last couple of years without your smiling face.  I love you so much and am deeply proud of the girl you are.

Tuesday, June 19, 2012

Week 5

Happy 5 weeks, Cohen! We celebrated the end of school/arrival of summer and Father's Day this week! Next up is a visit from Nana and Syd's birthday!

Saturday, June 16, 2012

Half a Year

Half a year. Six months. 26 weeks. 183 days. Half of your lifespan with us. That's how long it's been since we said goodbye. I don't have any profound thoughts or any great insights right now, so I will focus on what I am thankful for at this point in my journey. I am thankful that I am still standing. I am thankful that I have more good days than bad. I am thankful that the good memories far outweigh the bad ones. I am thankful that I can look at the huge smiling pictures of you on the wall many times a day and smile more than cry. I am thankful that Sydney and Isaac love to talk about you and to look at your photos and videos. I am thankful to have Cohen here reminding me of the healing effects of a new life. I am thankful for the many things you taught me that will be with me forever. I am thankful for the eyes I now have to see the often overlooked. I am thankful for the heart I now have to love more than I thought possible. I am thankful that you are my daughter and that I am your mother.
I do miss you every moment of every day. You are always near to my heart and in my thoughts. I love you forever, precious Julia.

Thursday, June 14, 2012

At 1 Month I Can...

Eat and grow very well
Hold up my head
Push up with my arms during tummy time
Make eye contact
Follow sounds by turning my head
Watch my mobile
Grab fingers, Mom's hair

My family
Baby Bjorn

Not eating
Falling asleep
Diaper changes
Clothing changes
Car seat

By Cohen and Mommy

Wednesday, June 13, 2012

Week 4

Week 4 brought a visit from Poppa and Aunt Jodie! Cohen got lots of extra attention, as did Sydney and Isaac. Cohen also attended (slept through) Isaac's last tee ball game and team party. He is growing well -- so much so that it seems to be interfering with his sleeping! We will catch up...one day. :)

Monday, June 4, 2012

Week 3

Cohen is growing well and slowly having longer awake times!  We are enjoying some sleepy smiles and anxiously awaiting some wakeful grins! Cohen attended his first soccer game, which he slept through soundly. We'll see how he handles tee ball this weekend!

Saturday, June 2, 2012


Cohen's birth nearly 3 weeks ago was a surreal experience on many levels.  Bringing a new life into the world and hearing those first cries is a sacred moment, and it is never to be forgotten. I wanted to savor the moment and focus on the joy in it.  At the same time, I was continually reminded of Julia, and all of the difficulty surrounding her birth and subsequent diagnosis with Trisomy 18.  We were in the same hospital where Julia was born. We were in the same operating room.  We had the same obstetrician who delivered Julia. The procedure was the same, but the expectations were completely different.  We did not have a neonatologist/nicu team in attendance this time. When Julia was born, I did not hear her cries.  She had some difficulty breathing and was placed on cpap and whisked to the nicu. I barely had time to glimpse her tiny, sweet face before she was taken upstairs. With Cohen, there was no way to miss the cries as he was born! I heard "he's definitely a boy!" as he proceeded to pee on the doctor. They showed me my big, beautiful boy briefly before going to clean him up and check him out. I looked over and saw him waving his hands around - his wide open hands - much in contrast to Julia's clenched fists (characteristic of Trisomy 18). And he was still screaming loudly. I felt ready to burst into tears for Julia, but I pushed that aside to dwell on the healthy boy - my son - in front of me. I was wheeled down to the recovery room where Marc and Cohen were already waiting. No nicu stay. My baby would be staying with me throughout my stay in the hospital. Such joy.  A few hours later, my mom arrived at the hospital with Sydney and Isaac, just as she had done after Julia's birth. This time, we introduced them to their baby brother. The tears in my eyes this time were happy ones! As we held and admired baby Cohen, we were in awe of his strength, his ability to feed, his loud cries, his movements. We remembered that it took so much for Julia to develop any strength or the ability to take a bottle or to have much movement. We marveled at how much Julia was able to grow and learn in her precious life, and we were thankful. Thankful for Julia. Thankful now for Cohen. New life brings with it new joy, new hope, and new healing.