Trisomy 18 Awareness

Trisomy 18 has been in the news a lot lately because of a special 3 year old little girl named Bella who has Trisomy 18. Bella happens to be the daughter of Presidential candidate Rick Santorum. Bella was admitted to a local hospital over the weekend for pneumonia, which caused Mr. Santorum to cancel some of his campaign appearances. Bella is doing much better today and her dad is campaigning again. News organizations have been featuring stories about Bella and Trisomy 18. This is a tremendous opportunity to raise awareness for Trisomy 18 and to give good information about what this chromosomal disorder is and is not. We in the Trisomy community are interested in having the public know that
1. Our children are children first...children who have a condition known as Trisomy 18.
2. Children with Trisomy 18 can live for months and years. Their life expectancy cannot be predicted at birth.
3. Children with Trisomy 18 do not live lives full of suffering. The idea that these children suffer is commonly cited by neonatologists and obstetricians although it this is not supported by medical literature or anecdotal experiences from the MANY Trisomy families out there.
4. Children with Trisomy 18 can indeed have a good quality of life.

For more information please see the following links:

http://www.trisomy18.org/site/PageServer?pagename=whatisT18_whatis

http://www.trisomyhelp.org/WHAT-IS-TRISOMY-.html


To view some of the current news coverage centering on Bella Santorum and/or Trisomy 18 see the following links:

http://www.thedailybeast.com/articles/2012/01/31/feeding-tubes-nicu-one-on-one-care-susan-hatfield-talks-about-living-with-his-trisomy18-baby.html -- this article was written by the mom of a 5 year old boy with T18.

http://bostonglobe.com/lifestyle/health-wellness/2012/02/01/bella-santorum-and-trisomy-care-has-shifted-for-genetic-disorder/k5ZH7Zxoi0q5hkJRsphs6M/story.html

http://www.pbs.org/newshour/rundown/2012/02/santorums-daughter-recovering-nicely-but-from-what.html

http://www.cbsnews.com/8301-504763_162-57368121-10391704/trisomy-18-in-spotlight-after-rick-santorums-daughter-bella-hospitalized/?tag=mncol;lst;1

http://abcnews.go.com/blogs/health/2012/01/29/what-is-trisomy-18/

http://www.washingtonpost.com/blogs/the-checkup/post/bella-santorum-has-trisomy-18-what-is-that/2010/12/20/gIQAxrOVcQ_blog.html

http://www.huffingtonpost.com/2012/01/30/trisomy-18-bella-santorum_n_1241671.html


To learn more about children with trisomy 18 and their families see the links under "My Blog List."

14 Months

Today is Julia's 14 month birthday.  Every month on the 30th we celebrated Julia's birthday, and I think we will continue to do that. Julia, I imagine you today doing all of the things a 14 month old should do -- saying "Mama" and "Dada", standing, walking, running, trying to climb the stairs, and wanting to play outside.  We miss you dearest one!

Here are some photos from one year ago on Julia's two month birthday. We celebrated that day with cupcakes, and our cousins were here to join in! The big kids enjoyed a day in the snow while we kept Julia warm and snuggly inside. And apparently we changed her clothes a lot that day...

Do Over

Julia 1/25/2011

I would really like a do over.  All of Julia's 382 days. The good and the hard. The days spent feeding and holding her.  The nights awake with her. Dressing her. Singing to her. Taking pictures of her. Watching Sydney and Isaac with her. Celebrating birthdays every month with her.  Making memories with her.

It's not that I would want to make a lot of changes. I just want the time back.  I would also like to go back to the time of her birth and tell myself a few things...

1. Julia will surprise you.
2. Doctors cannot predict the future.
3. 5-10% of trisomy 18 babies make it to one year, and Julia could be one of them. See #1 and 2.
4. Julia can and will eat with a bottle.
5. The colic will not last long.
6. Julia's smile will be the most beautiful thing you have ever seen.
7. Leave the cameras out and use them. (We did pretty well with this one!)
8. You are not alone.  There is a whole t18 community out there.
9. Don't be afraid to hope.
10. You are her mom. Trust your instincts.
11. Celebrate every single day.
12. Julia's life will be beautiful.

I have often wondered if I would have wanted to know exactly how long Julia would have with us. It would have been very helpful and comforting in the beginning.  Those days and weeks we spent thinking we could lose her any day were so hard. I am so thankful that for most of Julia's time with us, we were not thinking that.  We were so used to her being with us and beating the odds that we thought that would contine for a long while.  That kind of thinking - the hopeful kind - allowed us to enjoy our life with her. I would not change that.

Then I wonder if I would want a do over of her last week.  Right now, the answer would be yes.  I do not know if there is anything I could have done to change things that week, but I would like to try.  A friend recently said to me that it was just her time to go.  I want to believe that.  I have to.  But I would still like a do over.

Love you forever, Julia.

I Don't Want to be Normal



Julia one year ago today, 1/19/2011.
She slept a lot back then!

Julia changed us in so many ways. We experienced new things, we adapted to new ideas, and we learned to love in deeper ways than we could ever have imagined. My days were filled with caring for Julia and keeping her doctor and therapy appointments. Caring for a child with special needs is consuming but in a fulfilling and inspiring way. We worked hard on typical things like learning to eat from a bottle, strengthening neck muscles and core muscles, and practicing playing with toys. Results took so much effort. Every new skill, no matter how tiny, was celebrated like a major milestone. I am forever grateful to Julia's therapists for helping me to recognize the progress Julia made and to rejoice with me in each accomplishment.

We also met new people and joined an online community of parents of children with special needs, and more precisely parents of children with trisomy 18/13. It took me a few months after Julia was born to find this community but they have been unbelievably supportive and helpful. There are members of this community with living children with t18 and some with angels who were stillborn or who were blessed to live with their families for a weeks, months, or years. All are included and supported. It is a group of people who "get it" without explanation and without judgment. I continue to keep up with this online support group even though it is sadder to do so without Julia. I realize, though, that Julia's story can still encourage and inspire other new parents and I want to offer that. Each child with trisomy 18 has their own unique set of challenges and each parent's perspective is valuable. On average, a baby born with trisomy 18 lives 5-15 days, and Julia lived 12.5 months. Hers is an amazing story, and I can't lose sight of that in the midst of my sadness.

I dearly miss my not-normal days with Julia. However, I know that I will never be "normal" again, and I am so thankful for that. It is part of Julia's lasting and immeasurable impact on my life. I love you, my special girl!

One Month

Today it has been one month since we lost Julia. I have no words to adequately describe life without her. However, I found this piece on grief that seems significant to me.

Profound grief is like being in a stage play wherein suddenly the stagehands push a huge grand piano into the middle of the set. The piano paralyzes the play. It dominates the stage. No matter where you move, it impedes your sight lines, your blocking, your ability to interact with the other players. You keep banging into it, surprised each time that it's still there. It takes all your concentration to work around it, this at a time when you have little ability or desire to concentrate on anything.

The piano changes everything. The entire play must be rewritten around it.

But over time the piano is pushed to stage left. Then to upper stage left. You are the playwright, and slowly, surely, you begin to find the impetus and wherewithal to stop reacting to the intrusive piano. Instead, you engage it. Instead of writing every scene around the piano, you begin to write the piano into each scene, into the story of your life.

You learn to play that piano. You're surprised to find that you want to play, that it's meaningful, even peaceful to play it. At first your songs are filled with pain, bitterness, even despair. But later you find your songs contain beauty, peace, a greater capacity for love and compassion. You and grief -- together -- begin to compose hope. Who'da thought?

Your grief becomes an intimate treasure, though the spaces between the grief lengthen. You no longer need to play the piano every day, or even every month. But later, when you're 84, staring out your kitchen window on a random Tuesday morning, you welcome the sigh, the tears, the wistful pain that moves through your heart and reminds you that your child's life mattered.

You wipe the dust off the piano and sit down to play.

By Steven Kalas

One month down. A lifetime of months to go. I miss you, Julia, with every heart beat.

December 11

A month ago today we had the best day. We celebrated birthdays and enjoyed all being together. Love you and miss you, Julia.

Making Room

Sydney, Isaac, and Julia 12/1/2010

Life without Julia just isn't the same. There is a huge hole in my days and nights. My arms are missing that extra 10 pounds of cuteness. Julia changed so much about our family life. I was on bedrest beginning with week 30 of my pregnancy with Julia. Then when she was born, Marc and I decided to hold her pretty much around the clock. Early on we thought she would only live a few days and we wanted someone (one of us) with her and holding her at all times so she would not be alone. As the days and weeks and months passed we continued to hold her nearly all the time. It was comforting to her and to us. And she was so cute! When those big brown eyes would gaze up at us and later when she would smile up at us and then even later when she would reach her hand up to us-- well, we just couldn't put her down! While one of us was holding Julia, the other could focus more attention on Syd and Isaac. I realize, though, how they also made room for Julia in their everyday lives. Before Julia was born, Isaac always wanted to sit with me and he would frequently come into our room at 4 or 5 AM and sleep the last few hours with us. Soon after Julia was born Isaac caught a cold. We had a talk with him about germs and washing hands and not coming into our room at night with Julia in there. He took this to heart and stopped coming into our room at night. Then we bought a bassinet for Julia to keep in our room, which she probably slept in for a portion of only about 7 nights. I remember Isaac asked if we bought that bassinet so he could start coming into our room at night again. :) He actually has been sleeping very well in his bed for the last year. After we lost Julia, Isaac started wanting to be near me and sit in my lap again. Part of it is probably him sensing my sadness and part his own sadness. Either way, it is very sweet. It is as if he gave that spot to Julia while she was with us and then decided to claim it again. He made room. So did Sydney. She was used to having a lot of my attention. I would often volunteer in her class, I would walk her to the bus stop every morning, I would do her homework with her, and take her to and from her activities. When Julia was born she had to become a lot more independent. I couldn't volunteer in her class much or walk her to the bus (she would walk with our neighbor to the bus stop which was only 2 houses away). We had to carpool more for activities, and she had to do more homework on her own. She did not complain, and she has excelled at school. Sydney loved to talk about Julia to her friends and to show her off. She was and is such a proud big sister. Every little thing Julia did was cause for celebration to Sydney, just like it was for me. Now I am able to do more with her again and be there for all of the little things like bus stops and homework. Since we lost Julia, Sydney has been so attentive to me, especially when I am sad. They made room, and now they are trying their best to help fill the hole. They are the best kids ever.