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

Friday, March 30, 2012

16 Months

Today marks sixteen months since you were born. Sixteen months since I first caught a glimpse of your beautiful eyes. Sixteen months since my life first changed forever. Sixteen months since the most unexpected blessing entered our world. Happy sweet sixteen to you, dearest Julia. We love you and miss you always.

March 30, 2011, Marc and Julia
Sydney and Julia

Isaac and Julia

Julia, 3/30/2011

Monday, March 26, 2012

Questions and Pregnancy

People love to ask pregnant women questions. When are you due? Is this your first? How many other kids do you have? Is it a boy or girl? Aren't you so excited? You have how many more weeks left? The same is true when you have a tiny baby. Many questions and comments. How old is she? She must be brand new! Was she a preemie? How early was she? How much does she weigh? She's so tiny! Were your other kids small, too?
I have come to dread these questions from strangers. When I was pregnant with Julia I tried not to give people the chance to ask me questions. The answers were so hard and so complicated. I had too much amniotic fluid, so I always looked further along than I was. I was so anxious and worried about her various conditions. After she was born I would also answer questions in an intentionally vague manner. Yes, she was born early. She has a genetic condition/heart condition that keeps her small. Yes, she is tiny. During this pregnancy, the questions are still hard. Yes, I am excited, but I'm also grieving. No, this is not my first child. It is my fourth. Yes, I will have my hands full (but not as full as I wish).
I truly do understand that people mean well. Most of us think of pregnancy and the newborn stage as a happy time. My first two times they were. When you have a difficult pregnancy or when you have suffered infertility, infant loss or a miscarriage, pregnancy can be full of fear and worry. This is not because of a lack of faith or hope, but because some of us have been there, and we know that sometimes things are not okay.
I wanted to write this just in case the next pregnant woman you see is the 1 in 4 (!) women expecting a baby after a loss of some kind. Wish her well if you'd like, or just give her an encouraging smile -- something every pregnant mom-to-be will always appreciate.

Wednesday, March 21, 2012

Sydney's T18 Presentation

Sydney showing her T18 Awareness bracelet

Sydney wanted to do something special for Trisomy 18 Awareness Day. We talked with her teacher about having a presentation for her second grade class.  Sydney was very excited about it. Marc was also planning to be with Sydney at school that day anyway as a "Watch Dogs" Dad  (DOGS = Dads of Great Students). The three of us put together a power point presentation with facts about Trisomy 18, pictures of Julia, and memories of Julia. Sydney added props such as Julia's feeding syringes from when she was a newborn, her later bottles, a preemie outfit, and some of her favorite toys.

Sydney did an amazing job with her presentation.  Marc would introduce a slide, but Sydney would quickly jump in and explain the slide and add stories and information. She was a proud big sister talking about Julia, and I am one proud mom of both of my girls. Sydney's classmates were also very attentive and interactive. I was really impressed with all of these second graders. As Sydney and Marc talked about health issues associated with T18, one student shared that he had 2 cousins born with holes in their heart. Another student shared how her 3 year old cousin cannot walk yet and has to have a special stroller. Another shared that he has a g-tube to help him with eating. At the end, Sydney passed out the Trisomy 18 Awareness bracelets we had ordered for awareness day.  I am so appreciative of the support that Sydney receives from her teacher and classmates.

A huge thanks to you, Sydney, for having the courage and the love to share your sister's story with your class.  Julia could not have a more amazing big sister. We love you every day, Julia!

To see Sydney's powerpoint slides, click here.

Sunday, March 18, 2012

18 Things You Should Know About Trisomy 18

March 18 is Trisomy 18 Awareness Day. In recognition of this day, I have compiled a list of 18 things I think everyone should know about Trisomy 18.

1. Trisomy 18 is also known as Edwards Syndrome.

2. The incidence of trisomy 18 is approximately 1 in 3000 live births. This does not include babies who were miscarried early or born still.

3. There are three types of trisomy 18: full, mosaic, and partial. In full T18, every cell contains a third copy of chromosome 18. In mosaic T18, only some of the cells contain an extra 18th chromosome. In partial T18, only a part of an extra chromosome 18 is present instead of the entire chromosome.

4. Having a child with trisomy 18 occurs more often in older mothers but can also happen to younger mothers.

5. Trisomy 18 can be diagnosed in utero by chorionic villus sampling and amniocentesis, both of which are invasive tests and carry a small but real risk of miscarriage.

6. Newer blood tests such as MaterniT21, Panorama, and Harmony may also be used to detect Trisomy 18 as early as 9 weeks. A positive test result should be followed up with CVS or amniocentesis for diagnosis. 

7. 90% of babies with trisomy 18 have a heart defect. More and more babies and children with T18 are undergoing heart surgery successfully. 

8. Girls with T18 are more likely to survive than boys with T18.

9. Some babies and children with T18 can eat orally although most require a feeding tube. Some are fed both ways.

10. Every child with T18 is unique as T18 can affect the body in many different ways.

11. Babies and children with trisomy 18 have beautiful smiles!

12. The oldest living person with trisomy 18 currently (that I can find) is in her thirties!

13. Babies and children with T18 experience significant physical and cognitive disabilities but can learn new skills and interact with others.

14. Approximately 10% of babies born with T18 will reach their first birthday.

15. All babies and children with T18 are special.

16. Parenting a child with T18 is challenging in many ways, but it is also full of unique blessings.

17. Babies and children with T18 are adored by their siblings.

18. Life is a precious gift, including life with T18.

Our Julia was diagnosed with T18 on her second day of life.  We are very blessed to have had 382 very special days together. We miss her every single day and are honored to be her family forever.

Friday, March 16, 2012

Three Months

March 2011

March 2011

Today marks three months since we lost Julia. That day was a Friday, too.  I find every Friday morning since that day to be hard.  It's like my heart remembers before my head, and I just wake up feeling sad and exhausted.  Thankfully, Isaac is home on Fridays to keep me company and keep me moving. Three months seems like forever these days and at the same time I am surprised that three months could already have gone by.  My sense of time is really just off.  Counting up the weeks since we lost Julia and at the same time counting down the weeks until we meet our baby boy -- this is a very strange place to be.

In the past month, I have had the privilege to meet a sweet baby girl with Trisomy 18 who just celebrated her three month birthday this week. She and her family live about half an hour from us, so it is easy to visit.  This precious baby has many of the same struggles that Julia did those first few months. Being with her and her family has provided some unexpected healing for me in this journey. I find it helpful to be there for and cheer on this family and pray for them as I would for Julia. Through this sweet girl I am reminded of the struggles and the hard days but also of the thankfulness of having such a special baby. I am also reminded to be grateful that Julia progressed past those early days and that she was able to smile and interact and show us her lovely little personality.

I have been busy (staying distracted) working on projects to remember Julia, and some very thoughtful and talented friends are helping as well. The first is this blog, which I began when Julia was nearly 7 months old. I find it to be a very helpful place to remember her and share her with others.  Here I can look backward and forward, and it all seems to fit. I can be mindful of how connected we still are and always will be with Julia. At home we talk about her every day and look at her pictures and videos. We try to surround ourselves with happy memories with Julia.

Julia's Tree
Next, I found a little tree to decorate with seasonal ornaments for Julia (thanks to Lilly's mom for this idea!). The kids can really get into this one, although Sydney still wants to leave the Valentine's Day ornaments up!

Quilt Rack 
Julia's room has been somewhat converted into a guest room so that I can keep it as her room instead of changing it to a nursery for our baby boy. I added a quilt rack to hold some of her sweet blankets. I plan to display a couple of her special dresses on the wall next to her photos and Piggies and Paws prints.

Julia's Dress

Julia's Baby quilt

Another project has been to organize photos. I made sibling photo collages for Sydney's and Isaac's rooms.  They turned out so sweet. I am in the final stages of putting together Julia's photobook/digital scrapbook (I usually create one for the kids every year). And of course there are photos of Julia displayed everywhere!

Finally, I also have some outside help. A group of friends had a beautiful bracelet made for me with Julia's birthstone. I was so touched and honored by their thoughtfulness (thank you to C, S, and T!).  I also have a friend who loves to quilt and has volunteered to make a quilt from Julia's clothes (thank you so much K!). I am so excited about this! Another friend who is a very talented artist offered to paint a portrait of Julia, and I am just thrilled about this, too (thank you, thank you, L!). Thank you to so many of you who continue to remember and celebrate Julia with us and for us.

Mt bracelet with Julia's birthstone

I miss you every minute of every day, dearest Julia. And I am thankful for you every minute of every day.

Monday, March 12, 2012

Isaac is 5!

Happy birthday to our Isaac --
The best son, big/little brother in the world!
You are Dad's best bud, Mom's sweetest boy, Sydney's biggest fan, and Julia's biggest admirer.
We love you!!!!!!!!!

Isaac 2007

Age 1

Age 2
Age 3
Age 4

Age 4 3/4

Friday, March 9, 2012

Turning Point

My son Isaac's birthday is approaching in a few days, and I have been reminded of what things were like one year ago. I remember that several visitors were in town -- Julia's Aunt Jodie and cousin Grady, Julia's Aunt Jennifer, and my lifelong friend Elise. While they were here Julia had a long stretch of really good, relaxed days. January and February had been difficult as we dealt with colic/crying spells. Her colic episodes were hard on her and, well, on all of us. She was hurting and not eating well. We tried formula changes and probiotics, which we think helped, but she finally just "grew out of it."  When March came last year, the episodes stopped and Julia started eating and growing better. She was so much more pleasant and calm. It was a huge turning point in our day to day life with Julia. We could all relax more and sometimes sleep more. :) She was more aware and interactive, and we were so excited for the changes we saw. The smiles would soon follow... Maybe she just loved spring!!

Wednesday, March 7, 2012

The Implications of Her Smile

In last week's Time magazine, Joe Klein wrote an interesting piece about Rick Santorum entitled "Rick Santorum's Inconvenient Truths." I usually enjoy articles written by Joe Klein and appreciate his perspective on a variety of political topics. He is not a conservative columnist and usually supports more moderate or liberal candidates. In this article, though, Mr. Klein says there is "something admirable about Santorum's near Tourettic insistence on bringing up issues no one wants to talk about." One of the issues that Mr. Klein discusses is Mr. Santorum's position on prenatal testing and his opinion that this leads to more abortions. Rick Santorum's daughter, Bella, who is three years old and has trisomy 18, has become the face of his stance on prenatal testing and abortion. According to Santorum (and the experience of my fellow trisomy parents), nearly 100% of babies prenatally diagnosed with trisomy 18 are encouraged to be aborted.

Prenatal testing is an important issue and carries more consequences than we are sometimes aware.  I do not personally oppose prenatal testing, but rather the lack of information and support given to women and families who receive a prenatal diagnosis. Parents who are already enduring the grief of having a child with this diagnosis are then faced with having to battle the medical community because of having a prenatal diagnosis.  After receiving a prenatal diagnosis as difficult and devastating as trisomy 18 and deciding to continue the pregnancy, many parents are denied medical interventions such as an echocardiogram to evaluate the baby's heart, a c-section to decrease stress on the baby, and resuscitation at birth since the child statistically is not expected to survive for very long.   Because we did not have a prenatal diagnosis of trisomy 18 with Julia, I was given a c-section (best for her compromised heart) and she was given respiratory support (she was on bi-pap for about 6 hours until she could breathe on her own). She was evaluated and placed in the NICU for observation.  Her heart and kidneys were evaluated. I do not know what our experience would have been like at our particular hospital if we had known before birth. However, I know many parents who have had to take on hospitals and fight for support. Some parents with a prenatal diagnosis have been able to meet ahead of time with NICU staff to find out their approach to babies with trisomy 18 and if they met resistance they had time to find another hospital. So, yes, prenatal testing is a big deal, or rather the knowledge than comes along with prenatal testing is a big -- a very big -- deal.

Although I am not a supporter of Rick Santorum for president, I am thankful for the debates being raised on behalf of his daughter Bella and all children with trisomy 18. And as Mr. Klein so eloquently states...

"I am haunted by the smiling photos I’ve seen of Isabella with her father and mother, brothers and sisters. No doubt she struggles through many of her days–she nearly died a few weeks ago–but she has also been granted three years of unconditional love and the ability to smile and bring joy. Her tenuous survival has given her family a deeper sense of how precious even the frailest of lives are.

All right, I can hear you saying, the Santorum family’s course may be admirable, but shouldn’t we have the right to make our own choices? Yes, I suppose. But I also worry that we’ve become too averse to personal inconvenience as a society–that we’re less rigorous parents than we should be, that we’ve farmed out our responsibilities, especially for the disabled, to the state–and I’m grateful to Santorum for forcing on me the discomfort of having to think about the moral implications of his daughter’s smile."

Saturday, March 3, 2012

I Heart...Forever

The Stone

Julia's stone was placed at the cemetery a couple of weeks ago. Even though I had been visiting her burial site every week, I was totally unprepared to actually see the stone there with her name on it. The stone has her name and dates and the phrase "I Carry Your Heart." It's just so final. We all went that day as a family. It was cold and windy, so we had a good reason not to linger.  I waited about 10 days before going again. I wanted to change out the flowers and I wanted to go (alone) on a nice day.  On Tuesday, the weather was beautiful and the kids were in school, so I had time to go. The sun was shining and there was a light breeze. Julia is buried beneath a holly tree that is filled with wind chimes.  The wind chimes sounded beautiful.  This time I felt so much more peace, if not less sadness.  I sang happy (fifteen month) birthday and placed new flowers.  Nearby there was a tent set up for another precious little angel gone too soon.  I said a prayer for the families of every child buried in the Garden of Angels. There are too many stones.  Love you, precious girl.