Not Alone

When we received Julia's diagnosis of trisomy 18, we did not know anyone who had experienced this. We did not know where to turn. This was 3 years ago. In that short time, trisomy communities across the US and the world have become much more visible and accessible.

Sometimes families facing this diagnosis in their unborn child or newborn child are not ready to connect with other families. It is such an overwhelming diagnosis and we all process the information at our own pace. I remember finding the SOFT page and ordering the books on caring for a child with trisomy 18. I opened the books when they arrived and promptly put then away. I was not ready. Julia was 3 weeks old. Looking ahead by weeks, months, or years felt so beyond what I was capable of imagining. Yet these books and the SOFT website told me it was possible. And if it were possible, there must be other families out there living with this...

For months I was so focused on Julia's day to day needs that I did not seek out the trisomy community. I did not know I would find so many living children with trisomy 18. When a fellow trisomy mom found me and directed me to the active online communities, I was amazed. My hope swelled. We were not alone.

Since then I have had the opportunity to meet several trisomy families in person and to interact with hundreds online. Some, like us, have had to say goodbye to our little ones. Others have children who continue to defy the odds and write their own stories.

The parents on these boards are a tremendous resource of information about birth plans, living with trisomy 18/13, locating doctors/hospitals, in home nursing care, various therapies, medication questions, and grief support. Questions are welcome!

The trisomy diagnosis and journey are not easy. The journey can feel so very isolating. Joining together with other families, though, allows us to share the joys and the fears, to celebrate the milestones and to mourn the losses among friends who understand every step of the way. 

If you or someone you know is facing a rare trisomy diagnosis, here is a list of parent support groups I have found helpful:

Facebook Groups

 (these are closed/private groups that those with a diagnosis can be added to)

T18 Mommies 

Trisomy Families

Trisomy 18 Foundation Parents Connect

Trisomy Angel Parents

You can read stories about children with Trisomy 18/13 at the following sites:

Support Organization for Trisomy

Trisomy 18 Foundation

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!

Day 20: Charity/Organization

 Day 19: Charity/Organization

Photo of the Balloon Release in Honor/Memory of  children with a rare trisomy
SOFT Conference, 2012, St. Louis, MO

Through our journey with Julia, we found support in many places.  Because the community of families of living children with Trisomy 18/13 is small, finding your way into the community can be difficult. After Julia was diagnosed, we first found the Trisomy 18 Foundation's website.  It contains information about Trisomy 18 as well as beautiful Legacy pages for Trisomy 18 angels. We also found the Support Organization for Trisomy (SOFT) website.  This website offered two books on caring for a child with Trisomy 18 or 13. We ordered those books a couple of weeks after Julia was born. SOFT holds an annual conference to bring together families of living and angel trisomy children. Although we have not yet been able to attend, it is something we would love to do in the future.  After spending the first few months of Julia's life in isolation from the Trisomy community, finding them was a God-send. There are several Facebook communities that have been profoundly helpful to us as well. If you are the parent of a child with Trisomy 18 or 13 looking for support, please try one of these organizations or facebook groups.

Facebook Groups: 

T18 Mommies

Trisomy 18 Foundation Parents Connect

Trisomy Families

Trisomy Angel Parents

Organizations:

Support Organization for Trisomy

Trisomy 18 Foundation

Hope for Trisomy 13 and 18

October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Day 15: Wave of Light

 Day 15: Wave of Light

Today, October 15, is the official Day of Awareness and Remembrance for Pregnancy Loss and Infant Loss. 
In our remembering today, we lit a candle at 7 PM tonight as part of a 24 hours "wave of light" to remember our much loved little ones.

In the Trisomy 18/13 community, both pregnancy and infant loss are very, very common. 

My sweet Julia has many precious little souls with her in heaven.

We remember you, dear Julia, today and everyday.

October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Day 14: Community

 Day 14: Community

The Trisomy 18/13 community has been an unexpected blessing in this journey. I was so encouraged to find other families living with a child with trisomy 18 or 13 when Julia was with us. I finally felt like we were not alone in what we were experiencing. I am thankful to have made friends through this community, some very dear to me. I consider these friends special gifts from Julia.

October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Day 11: Supportive Friends/Family

 Day 11: Supportive friends and family

We have received so much support -- before Julia, while she was here, and after she passed away.
My immediate family -- my husband, Marc, and my older children, Sydney and Isaac.  We stayed close together and we all lovingly made many sacrifices to care for Julia together.
Our family members -- especially my sister, my mom, and Marc's mom, all of whom spent many days here with us in spite of living far away. Thank you also to their spouses (and kids) for making it possible for them to be here so much. All of our family members near and far made great efforts to come and meet Julia. She was blessed to be able to meet all of her grandparents and great-grandparents, many cousins, and several aunts and uncles.
Our church family supported us with prayers, friendship, faith, and strength.
Our neighbors and local friends supported us in our every day life by bringing food, watching our older kids and even sometimes Julia, carpooling, doing yard work, giving us a baby shower, and celebrating all of Julia's milestones and important days.
Our "faraway friends" made the journey to meet Julia from as far as Alaska!  Many other friends sent cards and emails and called to check in. Julia received hundreds of birthday cards from all over the country on her first birthday!
Our trisomy family from all over the world has walked this road before, with, and behind us. They offer wisdom, encouragement, tears, hugs (real and virtual!), and a unique understanding of what we face at every step.
We are thankful that such a generous and inspiring community has been given to us on this journey.




October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Day 8: Jewelry

 Day 8: Jewelry

I wore the cross necklace every day during my pregnancy with Julia.

I bought the silver ring with her name on it just after she was born.

I received the necklace engraved with the names and birthstones of all my kids when Julia was 6 months old. I added the photo charm later.

The bracelets I received from sweet friends after Julia passed away. 

I love each and every one!

October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.

Lemonade

Sydney wanted to have a lemonade stand in our yard all summer, so when our friends, the Edens, called and wanted to do one too, we immediately said yes! We all decided it would be a charity lemonade stand. Sydney and Isaac chose SOFT (Support Organization for Trisomy) in honor of Julia, and the Eden kids chose a camp for kids with cancer that their mom attended as a kid.
The Edens organized everything and we set up in our yard. After a slow first hour, business really picked up, and we sold out of all of the lemonade! The kids had a blast! We will definitely have to do this again! Thanks to Tamara, Emily, Brian, and Megan Eden, and to all of our friends and neighbors who stopped to share some lemonade with us!

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.

The Nurse

When Julia was born and whisked away to the NICU, I was sent to the baby floor without my baby. I was okay, though, knowing she was where she needed to be for the doctors to evaluate her and make a plan for her care. The next day we received the trisomy 18 diagnosis. We decided we could no longer be separated from her and she was discharged from the NICU. By this time she was already breathing on her own without supplemental oxygen. Julia joined me in the baby floor until I could be discharged (after a c section) The hospital staff were all kind and respectful of our situation. They left us alone and allowed us to bond with Julia and just be together. There was one nurse, though, who made a lasting impact on us. She was our day nurse and had asked to be assigned to us each day. She shared with me that her first child passed away soon after birth. She did not get to take care of him or mother him until he passed away. She did not want that for me. She knew we may only have days with Julia (only God and Julia had other plans), and she wanted to make sure we made the most of them. She was very kind and open with her story and with her tears. She made us feel like we were not in the wrong place on the baby floor. Our baby was special and should be celebrated, too. We will never forget her. I hope one day I can find her again and share Julia's story with her.

A Wave

This week there have been several losses in the Trisomy community, and several more are fighting illnesses or undergoing major surgeries. My heart is truly broken for the families of Caitlyn, Alexandria, Jovie, Grayson, and Mohamed as they mourn. I don't know why these things seem to happen in waves. The same was true back in late August when several beloved children with t18 passed away, and then sweet Lilly went to heaven just 12 hours before Julia, and little Madeline not long after. I feel the grief of these families as if it were my own. Yesterday the feeling of helplessness that I have felt so often since losing Julia was overwhelming as I learned about three year old Caitlyn's passing. (She developed RSV that progressed rapidly over a couple of days.) I found myself unable to concentrate on anything. Even though this is not about me, I can't stop thinking about Caitlyn's mom. She fought so hard for more than three years for her girl. She was her biggest advocate. She made sure Caitlyn had heart surgery. She has been the sole caretaker while her husband has been deployed. She did everything for her daughter. As empty as my days feel without Julia after a full year, I have a small sense of what Caitlyn's mom feels after three years. It is devastating. It is crushing. It is beyond sad. It is hard. As another mom of a t18 angel said, we don't move on. Instead, we carry on, keeping our little ones very close...always.

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

The Birthday Celebrations



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!

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!



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!

Sweet Things

I have several sweet keepsakes from when each of my children was born. My favorites are the handmade items such as blankets and quilts. The beautiful blankets we received make me wish I could knit, crochet, or sew. Maybe that will be in my future... When Julia was born, our life group from our church in Maryland got together and made a beautiful little quilt for her. It was super soft and embroidered with her name. Our friends made it the night she was born. They said it was kind of like an old-fashioned quilting bee. It was delivered the day we brought Julia home in a sweet basket. Also included were several extra quilting squares on which our friends wrote out prayers, scriptures, and letters for Julia. It was all so beautiful -- just thinking about it and the love that went into it brings me to tears. I have included some photos of the quilt and of newborn Julia in the quilt. We received a beautiful crocheted blanket for Julia from Marc's nurse and coworker. She worked on it for weeks before Julia's birth and then put in extra time when Julia was born to get it to us quickly. (Julia was born nearly 3 weeks ahead of her due date.) We were so surprised and overwhelmed at the gesture. We will treasure it always.

Julia and her blanket made by CRCC friends

Julia and her blanket made by Doreen

I also have baby name jewelry that I love. I started with a bracelet with Sydney's name on it and added Isaac's once he was born. I have a ring engraved with Julia's name. My latest is a necklace engraved with all three kids names plus my and Marc's initials. Can you tell I like jewelry?

Baby name jewelry

My other favorite keepsakes for all three kids are handprint and footprint art. There is a company called "Piggies and Paws" that specializes in this. I already had a few prints of Sydney and Isaac that are adorable -- race cars, dinosaurs, mermaids, and princesses. When Julia was born and we brought her home not knowing how much time we would have, I knew I wanted creative prints of her hands and feet done, too. I contacted my local Piggies and Paws representative/artist who I had met several times before. A mutual friend had already told her about Julia, and she came over as soon as she could to take Julia's hand and footprints. I just love these.

Julia's footprint as the baby, my handprint as the tree.

Julia's handprint as a garden

Photos will be our most treasured keepsakes of all of our children. Our next door neighbor is a photographer, and he came over the day after we brought Julia home to photograph her. Some photos from that day appear in the slideshow at the top of the blog. Julia is definitely a well-photographed baby! And it does not just end with taking photos. I used to scrapbook the old-fashioned way, but now I make digital scrapbooks each year for the kids. It is so much easier! Sydney and Isaac really enjoy looking at their books. I hope the books will be a treasure for them as much as me someday.
I am always looking for suggestions for favorite keepsakes -- especially if it is something I can do myself!