Trisomy 18 Foundation: On Holidays

As far as foundations go, Trisomy 18 foundation's website is in need of a make-over but the support they provide has been awesome. Specifically, their emails and cards around holidays.

At Christmas we received a card, an email on Mother's Day, and a preemptive email for Father's Day. And since the whole organization is built to support families who have children that have been diagnosed with T18, and therefore support many grieving families, they know exactly what to say. They really get it. It is seriously so refreshing to open a card/email and have it be spot-on. I remember I cried with the Christmas card because it was exactly where we were. It was as if their card put in to words exactly how I didn't realize I'd been feeling.

Christmas Card:

Dear Ann,

 We know how difficult this holiday season is without your precious Noah Patrick Every day without our babies is hard, but the first holidays hold a special emptiness. We want you to know that we are here to remember Noah Patrick with you, to grieve with you and to share memories with you.

We will not let Noah Patrick be forgotten because we believe that every child with Trisomy 18 ... no matter how fragile or brief their days, forever changes our world.

May you and your family find some peace and joy this holiday season.

With warm wishes from all of us, 

Trisomy 18 Foundation Staff and Volunteers

 On Mother's Day:

This Sunday, as we celebrate all mothers in the Trisomy 18 community -- we recognize that every child...no matter how fragile their life or brief their days...that child transforms a woman into a mother -- forever.

To all our mothers, we honor and celebrate the blessings of your special love for your very precious child impacted by Trisomy 18. 

To extended family members, friends, and caregivers, we encourage you to reach out to the mothers you know in your community to acknowledge them as the amazing Mothers they are. Remind them of their gifts and how much they've given to all their children -- those still with us today and those that have gone ahead of us from this life to the next.

From all our hearts to yours, have a gentle and loving Mother's Day,

Victoria J. Miller

Executive Director (And Isaac's Mom...forever) 

And on Father's Day:

Join us in Honoring all Fathers we know who love a child with Trisomy 18 this Sunday. . .

When we think of a father, the following words often come to mind: strong, protective, problem-solver, loving, and wise. A father takes on these roles with his children, wife or partner. 

Often, a diagnosis of Trisomy 18 causes a father to set side his own feelings while caring for his affected family. It can be difficult to share his feelings about Trisomy 18 and how it has impacted his family, including himself. 

Whether you are expecting, raising, or grieving the loss of a child with Trisomy 18, we know that you are a father — today and every day. 

If you are the family member or friend of a father who has been touched by Trisomy 18, please take time to acknowledge him on Father's Day. While his journey may be different than most, he still is a father. 

And so for many reasons we will always be lifelong supporters of the Trisomy 18 Foundation. Because they rock. One way we do that is through yearly monetary donations. Another way we support them is by using GoodSearch. If you haven't heard of GoodSearch, it's a search engine powered by Yahoo - but each search donates money to the organization of your choice: We chose Trisomy 18 Foundation. They've a sister site called GoodShop in which a certain amount of your purchase is donated.

http://www.trisomy18.org/
http://www.goodsearch.com
http://www.goodsearch.com/goodshop.aspx

 

 

 

 

 

Water, Water, Everywhere

The last week has been hard for me. I find I've been fighting off impending bitterness. Bitterness toward not being pregnant, toward people that are pregnant, toward people with young children. I know - I believe - that we will get pregnant and have other children. What I struggle with is that I want it now - not in a year. I know - I believe that it will happen in God's time, but I struggle with reconciling God's Timing with Annie's Desired Timing. I struggle to stay positive.

I was at Target last week looking for a baby shower card for a friend. (I always hate going to Target - or any department store - because it's impossible to not walk past the children's and baby's sections.) As I was looking for a card for my friend, what I became struck with was how many cards took the event so lightly. Cute rhymes about changing diapers, sleepless nights, pink and blue everywhere, life changing event  - blah blah blah. The problem I encountered was that every card assumed the baby would be born and survive. Morbid, I know. But it is also my reality - my only experience having children is that all children do not live. So as I looked at ducks and flowers, I had tears running down my face because I thought it was  all so sad and unfair. Sad because I never got to receive any of these cards - unfair because I should be looking at baby cards and criticizing them for being so positive and presumptive.

So that was rough.

I attended the baby shower. It's the first baby shower I've been to since I lost Noah. It was hard. It was hard because that is what I want to be: pregnant. And it was hard to watch and awkwardly participate in the game where you try and guess how big the mom-to-be's belly is using a length of string. To me it just seemed to not take seriously that there is a life inside there. Maybe that's not it. Maybe I didn't like it because the game made me focus on the fact I wasn't pregnant and want to be pregnant. Maybe I didn't like the game because I never got to be that big. I don't know - but I didn't like it. The shower was also hard for me because I only knew three out of the eleven people there - which means that only those three knew about my experience. My eyes filled with tears and my throat became tight as I watched my friend give a guest a present for her upcoming baby boy. (My friend is having a girl.) I think that baby girls are easier for me to emotionally deal with because Noah was a boy - so baby boys therefore are harder on me emotionally because it reminds me that I never got to receive cute little onesies for Noah.

But I kept myself together because 1) I didn't want to cry and inadvertently make a scene and make it be all about me and 2) I didn't want to have to explain to any of the people there why I was crying at a baby shower.

I now know that two of the other women at the shower have experience with infertility. So it makes me wonder how they felt about all of it, too.

Lastly, at least for now, the Thursday Night Markets have started back up in town. On Thursday nights, there's a big farmer's market, beer garden, live band, yummy produce, carousel rides, bounce houses and corn on a stick. Here you can play the game "Find A Woman Who Is Not Pregnant" or the spin-off game, "Find A Parent Without A Child Under 12 Months."

And so, the English major in me, leaves you with these words:

Day after day, day after day

We stuck, nor breath nor motion;

As idle as a painted ship

Upon a painted ocean.

Water, water, every where

And all the boards did shrink;

Water, water, every where

Nor any drop to drink!

-Coleridge's "The Rhyme of  the Ancient Mariner"

A sigh of relief

I breathed out a sigh of relief on May 1st: April is over.

Last April was decidedly the most difficult time in my life thus far. April 5th of last year, we had an ultrasound in Fresno. A few days prior, I had received a call from my doctor that the 15week - or is it 18week? - screening test came back with some abnormalities.

I tried not to panic but tried to gather as much information from the doctor as I could. I asked him to please wait a minute while I walked out to my car so that I could hear him better and take some notes. The conversation led me to so many questions, but I obviously hoped for the best and took comfort in the fact that both Dave and I, and our families have healthy backgrounds, so the tests were probably a false positive. Additionally, all the pregnancy books tell you that false positives are a possibility.

Looking back, I am proud of myself for calming down, taking a breath, and taking notes. I knew that Dave would want to know exactly what the doctor had said and writing it down is the only way to remember!

April 5th was awful for so many reasons. The news we received, the manner it was given, and the way we were treated after were horrendous.

The following days and weeks were so sharply painful. Even today, I am not sure which was harder for us - learning that our son would die, or his actual still-birth/death.  We grieved both times, and both times differently. In April, we cried for days over the loss of the child we thought we would have had, the fact that we were told there would be no birthday or subsequent birthdays. In July, we grieved the loss of the child we did have, because, contrary to so many of our doctors, Noah was a person, he did exist, and despite - and because of - all his physical abnormalities, he was so loved.

This April passed quietly. Dave was home for half of it. I had spring break while he was home and did nothing outstanding. Dave and I now find the value of boring - sometimes, when nothing is happening, it is so much better than what could be happening.