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.

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.

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.

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!

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. 

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.

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.

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!!

From Sydney

When I first saw Julia, I looked at her and smiled. ''She's cute'' is the first thing I said. I looked at her, my baby   sister, finally, wrapped in a pink blanket! Oh, how adorable she was! As she grew, she got pretty heavy.(At least to me she was.) Her eyes widened. Julia also got bigger of course. I thought her eyes were greenish brown later on. After her 1 year old birthday,I thought all those possibilities, the bad ones, were over. Little did I know, I was wrong. I feel like it's just been so long! Julia is Julia. She loves to touch bumpy stuff like mini pretzels,bracelets, and necklaces. She loves to snuggle! She does big hilarious stretches! When she sneezes, she puts her arm in front of her and then wipes her face and smiles. Boy, she sure likes a bath! Isaac and I both fight over who should pick out Julia's clothes. I love Julia!

Thanks to Sydney for sharing these thoughts and memories. Both of my girls are one in a million.  

All in Pink

Julia, 2/8/2011

These pictures were taken a year ago today.  We discovered that Julia liked laying on Sydney's giant pink bean bag.  We could prop her up comfortably so she could look around. It was also a good place for her to nap. Of course when I saw how cute she looked sitting there, I had to take a "few" photos! Isaac was my photography assistant that day and his hand can be seen in the picture below reaching out to touch Julia's cheek. This was his special way of showing affection to her when she was still tiny.  He would lovingly reach out and touch her cheek so gently and talk to her in his baby voice.  It was the sweetest thing...

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.

Julia Slideshow

Here is the slideshow from Julia's memorial service.  Just to let you know -- it is eleven minutes long. :) The original was much longer, and it was an accomplishment to trim it to 11 minutes.  There is a soundtrack included as well in case your audio is turned down or off (like mine usually is).  We hope our love for her and our joy in being her family comes through loud and clear!

We love you, Julia!

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

Happy 1st Birthday, Julia!

Today is a day I did not expect.  Today is a day that seemed impossible.  Today is a day that I dared not prepare for.   Today, I am so thankful for you. Today, you, my sweet Julia, are one year old!!! Today is a day to celebrate!

Today we know that the many doctors we have seen were wrong. Today we know that we have made good decisions for you.  Today you are a very special part of our family.  Today is a day to celebrate!

Today we will eat cake.  Today we will blow out the candle. Today we will sing the birthday songs MANY times. Today we will take lots of pictures and videos.  Today we will open gifts.  Today is a day to celebrate!

Today we will have a family party at our house.  Today your Nana's church is having a party in your honor. Today our friends and family are sending birthday greetings from across the country. Today a big party is being planned for you for Saturday. Today is a day to celebrate!

We celebrate you, Julia! We thank God for each and every day with you! We love you so much precious daughter and much-adored baby sister! HAPPY, HAPPY 1ST BIRTHDAY!!!!

The Day Before and After

I am trying very hard to focus on the present this week instead of the events of a year ago. However, the memories are crowding my thoughts. I am also super tired after a few long nights, so efforts to direct my thoughts are much less effective. I hope in expressing some of these thoughts that I can focus on this week. 2011. Not 2010.

I was 37 weeks pregnant with Julia. My hospital bag had been packed for weeks due to concerns over placental insufficiency. I was in the perinatologists' office twice every week for monitoring and was warned each time that this might be the day for admission. We "knew" several things-- Julia had many heart problems, she wasn't growing well, she was breech, I had too much amniotic fluid, one of Julia's kidneys was abnormal, and one of the two umbilical arteries carrying nutrients to the placenta had closed. The doctors strongly suspected a chromosomal disorder and were "convinced" it was Down Syndrome we were dealing with (mostly due to a very small or absent nasal bone).

At this particular appointment, one year ago today, I had an amniocentesis performed to check for lung maturity. We were preparing for a delivery that week and wanted to administer steroids for the lungs if needed. After the test, Julia started having decelerations in her heart rate. We were admitted for delivery pending the amnio results. The results came back -- lungs not mature -- so we began steroid injections and scheduled delivery for the following day. Julia's heart rate decelerations continued on and off throughout the day and night. We were so afraid but ready to deliver.

We had one day of Julia's life when we did not know her diagnosis. The docs were pretty sure after examining her that she did not have Down Syndrome. The genetic tests for chromosomal abnormalities were performed. I was recovering from the c-section and was too sick to make it to the nicu to see Julia that day. I briefly saw her after delivery as they wheeled her to the nicu. Her little eyes were open and she looked right at me. I felt relief that she was here and intense anxiety over what was to come. And I felt love -- a love that felt both fierce and fragile. Marc spent most of that first day in the nicu with Julia. He kept me updated with pictures and with doctor consultations.

We received the diagnosis on Julia's second day. It was shortly after I visited her in the nicu for the first time. She was tiny and beautiful. The nurses made Julia a hat with a cute bow. Julia was breathing on her own -- no oxygen or bipap. Receiving the news was unimaginably difficult. Marc has described it as being hit in the face with a baseball bat. I had had a feeling for weeks that things were worse than we knew, and I feared we would not even get to bring Julia home with us. That was my sole remaining prayer at that point -- that we could bring her home and care for her. My intuition was both right and wrong. Julia's diagnosis was much worse than the docs suspected. But, we were able to bring her home and she has now been at home with us for 365 days!!! We were told she would live only a few days and we came home on hospice care. We stopped hospice care 5 months ago. Julia is here. She is a very real part of our family's life. She is the baby sister. I am holding her now and looking at her beautiful, pink face. She is contentedly taking her bottle. She is reaching out to me with her right hand. She is where she belongs. And now it's time to put away the tears and just celebrate.

Thanksgiving

Since moving to VA our Thanksgiving routine has changed. Previously we would drive from Maryland to Kentucky to be with Marc's extended family. That was when Syd was in preschool and we could travel more freely. When we moved here, Sydney began kindergarten. That first year she was sick, and we had to cancel our trip. We discovered how nice it could be to relax at home instead of being on the road. Last year I was pregnant with Julia and on bed rest and unable to travel. We enjoyed a quiet and delicious Thanksgiving with my mom and some dear friends in our area. This year we just are not up to making the 10 hour trip with Julia over a four day weekend. And then there's the traffic in and out of the DC area to consider. It is truly a nightmare on a holiday weekend. While I'm a bit sad we have missed out on Thanksgiving in Kentucky for a few years now, I realize this is just another part of our new normal. We have gladly made and will continue to make the necessary adjustments to our life with Julia. Hopefully we can make a trip to Kentucky next summer sometime when school is out, the roads are less crowded, and it is not flu season.

This year my sister and her kids and my mom and stepdad joined us for Thanksgiving.  It was so nice to be at home and to not feel rushed to visit lots of people on the big day.  We did, however, overdo things a little by cooking for way more than the five adults and four children (plus Grady and Julia) who would be eating Thanksgiving dinner.  Everything was delicious, though, and we are working our way through some yummy leftovers.  The kids had a blast playing with their cousins, and the weather here was in the 60s and sunny (usually it's pretty cold by this time of year). 

We have much to be thankful for this year.  Mostly we are thankful to have Julia here with us.  I do feel a bit like I imagine the settlers did at the first Thanksgiving -- thankful to have made it through a very difficult year.  Its more like marking the passage of this year than a celebration.  We of course celebrate each day we have with Julia.  The accumulation of a year's worth of days is weighty, though, and I have felt that weight alongside my thankfulness this holiday .  I want to focus on the good of this year, but I feel that the good in this year cannot be seen or valued without noting the struggles.  Hopefully these ramblings make some sense.

We ended our week of Thanksgiving fun with an early birthday celebration for Julia before everyone had to leave for home.  Julia was a good sport as we sang happy birthday twice, made her wear a party hat, and opened her presents!  Of course she had a lot of help from her siblings and cousins!  We look forward to celebrating Julia's amazing birthday all week!

Wedding Fun

Last weekend we took Julia on her first big outing in nearly a month! Out friends S and C were married in Washington DC. Everything was beautiful -- the bride, the reception, the weather, the cake -- everything! Marc went ahead to the ceremony and the kids and I met him at the reception at a fancy hotel in DC. It was fun for all of us to get dressed up and go out. Isaac even wore a tie for the first time! Julia had such a good day. She was full of smiles and seemed to really enjoy the music. 

10 Months

This past week we celebrated Julia's 10 month birthday! She was feeling much better by Friday, so we ventured out. Julia, Isaac, and I went for a walk on some of the trails in the neighborhood. Julia enjoyed being outside, and it was a beautiful day. It was not raining and not hot! In the rest of September, I think everyday was either rainy, hot, or both. We stopped and played at a couple of the playgrounds along the trail. Isaac let Julia try out a swing with him, very gently, of course. She tolerated it quite well. When we got home Julia was ready for a good nap. We had her favorite dinner (pizza, even though she does not yet know that it's her favorite), and some yummy chocolate cake with chocolate icing. We sang the happy birthday song, which Sydney claims must be her favorite song since we sing it every month. We had a good day celebrating our girl. She had a good day, too, and was cute and smiley (except at cake time!). We love you very much, Julia!

Firsts

With Julia, the normal baby list of "firsts" during the first year does not really apply. We have experienced a few of those like first bath, first smile, first sleep through the night (just kidding! We wish!), and first cereal (in with her formula). Others such as first laugh, first roll over, first time sitting alone, standing, cruising, walking, talking -- some of those may happen on a delayed timeline and others may not apply. We have accepted that Julia's list of firsts will be different from Sydney's and Isaac's. Julia has had a very unique week of firsts that I think must be included. On Tuesday she experienced her first earthquake. For the east coast it was a significant quake. It was my first one, too. And today we are waiting for her first hurricane. Two big events in one week! My older kids don't have anything like that in their baby books! :)