Hallelujah & a Deep Breath

In the mail today I received confirmation that I have been accepted into the Temple University - Institute on Disabilities - Competence and Confidence Partners in Policymaking for Families with Children in Early Intervention program (birth - preschool). Let's just call it what everyone else calls it, C2P2 EI. I applied a couple of months ago with 3 of my new amazing friends in the Philly area. There are four 2 day leadership development training sessions starting in October. You thought I was dangerous before? Ha! I'm so excited.

In an email from Special Olympics today there was a link to a post written by Jenni Newbury about her younger brother Jason who has with Down syndrome. It is a wonderful post and I encourage you to check it out HERE.

President Obama signed Rosa's Law

S. 2781, the "Rosa's Law," which changes references in many Federal statutes that currently refer to "mental retardation" to refer, instead, to "intellectual disability" This is a major victory for us in the movement for inclusion, acceptance, and respect. You change the words to change the minds to change the hearts. I believe Tim Shriver said something like that.

I've been working on a post about our Buddy Walk and Family Fun Day which took place this past October 3rd. In the meantime you can check out the slideshow of photos taken by my beautiful friend Cecilia HERE. Team Sophie represents at 4:35 & 13:20, or watch the teaser I made below. If you don't see it, refresh the page or click HERE.

Photo and video editing at www.OneTrueMedia.com

Our story about The Beginning will continue shortly. I've written the next installment but I just can't put it up yet. Going back to that time has been very difficult for me. If I am to be accurate in the telling of the story, I need to be honest. Sometimes the truth is dark, ugly, and shameful. Unburying it has brought it all back. I need to let it sit just a while longer. I have greatly appreciated the positive feedback as I share this very personal story. Knowing that you are out there and reading and that it has moved you even a little bit helps me tremendously. Until I can find the courage to hit "publish" there is a song I just can't seem to get out of my head.

Thank you for reading, for your comments here and on fb, and for your patience.

I've done my best, it wasn't much
I couldn't feel, so I learned to touch
I've told the truth, I didn't come here to fool you
And even though
It all went wrong
I'll stand right here before the Lord of Song
With nothing on my tongue but Hallelujah

(click HERE for the song)

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The Beginning, Part 3

continued from HERE

Three years ago my full-time job was to assist victims of domestic abusers in times of crisis and to train and manage crisis hotline advocates to do the same. I was (am) damn good at it, but it meant that everyday was a crisis day. Every day I tried to help someone on the worst day of their life. I spoke with abuse victims in unimaginable circumstances who were trying to make sense of situations that they had little control over and that had left them with almost no hope. Not many are called to this field, but once it gets in your system, it never leaves. I know now that my many years of fighting injustices and standing up for those whose voices had been stolen was my Advocacy boot camp. I had no idea that I would soon use these skills to fight for acceptance and inclusion for people with developmental disabilities.

I had entered a new phase called "Telling Towards Personal Acceptance." I said the words out loud in the strangest places and to the least likely people. "We are expecting a baby girl. She is due on my birthday and she has Down syndrome." I said it over and over, but rarely was it for the benefit of the person I was telling. I said it so that I could hear my own voice speak truth to our new reality.

After a meeting about domestic abuse at the courthouse, I was in a discussion with two former and one current co-workers when I blurted out the news. "I'm so glad you are handling it the way you are," Jenny said. I thought she was saying she was glad we hadn't terminated, but I suspected I had misinterpreted her words, so I asked even though you could have cut the discomfort with a knife. She meant she was glad I was open and talking about it. Jenny became a source of support for me at the office from that moment on.

When I signed up for prenatal water aerobics, I heard myself telling our instructor. I felt that I needed to let her in on why I might not be as joyful and chatty as those other blissfully lucky pregnant women (that I now hated/envied) since I had been Chuck Norris roundhouse kicked out of their happy club (bitches)! Instead I got to hear how she was once pregnant and learned that the baby had a chromosomal deletion that was not compatible with life which led to an abortion.

The first time (or maybe the 2nd) that I failed a non-stress test-NST (test of the baby's heartbeat and movement) at my twice weekly appointments, I was sent to the hospital for further evaluation. After I was released I headed to a fast food drive up and ordered comfort food. Still wearing my I.D. bracelet and obviously pregnant, the young woman asked why I had been at the hospital. I muttered a response and she asked if they were worried that the baby had a problem like Down syndrome. "Why yes, actually," I said. "We are expecting a baby girl. She is due on my birthday and she has Down syndrome." This young woman was stunned and we held up the line while this complete stranger and I talked about it and I heard myself saying, "It's ok. It's going to be ok." It was the first time I truly believed it.

I carried the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, with me everywhere. It was my new bible, especially as I had kicked the King James version to the curb. Waiting at the pharmacy where I was wearing a very cute olive green eyelet dress (cute to compensate for my pain) I set the book down on the counter. My car keys covered the title and all you could see was the picture of a beautiful naked baby in her father's arms (we would soon have our own professional shot taken like this of Sophie & Mark). The pharmacist was a woman that I had been friendly with in the past and she had kept up with the pregnancy, but hadn't yet heard the news. I found myself slowly, deliberately sliding the keys off of the book and hoping/daring her to read the title. I watched her closely as she read the words and looked up with wide, kind eyes. "We are expecting a baby girl. She is due on my birthday and she has Down syndrome."

did you miss The Beginning, Part 1? Click HERE,
Part 2 HERE

The next installment, Part 4 HERE


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The Beginning, Part 2

continued from HERE

This began our life I refer to as "After" or after learning that we would have a little girl with a developmental disability. Oh how I wish THIS SITE had existed back then. This is a brand new site dedicated to parents who have received a prenatal diagnosis of Ds & have elected to continue the pregnancy. Are you aware that more than 90% of pregnancies given a prenatal diagnosis of Ds end with termination? Fear and misinformation are prevalent, but many of us are working to change this.

The rest of the pregnancy was a blur. I had a fetal echocardiogram that ruled out large abnormalities in her heart, but not the 3 small findings that she was born with (which closed on their own). I practically lived in the doctor's office near the end because my amniotic fluid was so low (this is not necessarily Ds related). Weekly ultrasounds, twice weekly checks of her heartbeat, coming to terms with her diagnosis while the genetic counselors warnings that we had a 20-30% chance of our daughter being born, still (dying in-utero) weighed heavily on my shoulders.

I drank in the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, which had just been published. I adjusted, I cried, I found strength I didn't know I had, but I pushed my spiritual self off the bus and it would be a long time before I would have a heart-to-heart with God.

I called our local Ds group and talked at length (bawled-my-eyes-out) with the President. I even went to a Ds Mom's night out while still grieving the loss of the child we thought we were expecting, while hugely pregnant. I tried to learn all I could about Down syndrome from accurate sources. Mark wisely waited to tell me that our neighbor asked him why we weren't aborting (yes, I am serious). I tried to put all of the scary information out of my mind that our (awful) genetic counselor told us (shoved down our throats) while we "weighed our options." These were her words, not ours. For Mark and myself there were never options. There was just Sophia, and she was ours, exactly as she is.

to be continued...


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The Beginning

During my 2nd pregnancy (as with the 1st) we had declined prenatal screening. Mark and I were in agreement that the diagnosis of a health concern such as Down syndrome would not alter our decision to continue the pregnancy.

At our 20 week ultrasound (US) we learned that we were expecting a girl. The US took an unusually long period of time so Mark had sent his mother in and was watching over Alexander in the waiting room. Still lying on the tech's table, my mother in law (MIL) Paula and I learned that they strongly suspected that our baby had Down syndrome. They told me the news with my MIL in the room, but it didn't occur to them to bring Mark back. Though I rarely revisit this memory, I do recall sobbing - from the depths of my soul - while curling into a fetal position. Paula was a wreck (but simultaneously a pillar of strength) and asked if she should get Mark. We bonded that day in a way that I cannot describe and I am so blessed to have her in my life. Mark was the first person I delivered the news to and it was the hardest thing I have ever had to tell my husband.

Their fears were based on a number of soft markers (large nuchal fold measurement - width of the back of her neck, echogenic markers on her heart, kidney, and bowels - or spots that show up to indicate a possible problem, and limb measurements).

That was on a Friday afternoon. I didn't return to work that day as planned. In fact, I didn't go back for a week. When I called my boss after the US to let them know I wasn't coming back that day, I couldn't get the words out. Our Director knew I was having a US and guessed from my sobs that the results weren't good. Being the AMAZING woman that she is, my tears were enough information. I'll never forget that Shannon.

Early the next week we had a Level II ultrasound and the perinatologst agreed that the soft markers pointed strongly to Down syndrome. Ultrasounds cannot give a diagnosis, however. After doing a lot of research on the risk of miscarriage by doing amniocentesis at my stage of pregnancy by a perinatologist (thank you Saima), through prayers with our pastor and family, a river of tears, and soul searching, we decided that we needed to know and went forward with the test. Within a couple of days we got the 1st round of results back. There were 2 rounds of tests. The first was 90 (something) % accurate. The 14 day test is closer to 99% accurate, but basically the 1st round confirmed her Ds. We had a definitive answer.

In the midst of this news we named our daughter. Mark suggested Sophia and I instantly agreed. It had been on the top of my list since my pregnancy with Alexander. Sophia is Greek for wisdom. This was the easiest major joint decision we ever made.

to be continued...

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Team Sophie

Our Buddy Walk is taking place this Sunday, October 3rd at Mark's university and all proceeds benefit the Trisomy 21 Program at Children's Hospital of Philadelphia (CHOP)! I am so excited to head to the football stadium for a day of family fun. If you are in the Philly area this weekend we would love to have you join Team Sophie.

Visit our fundraising page HERE

Want some really cool Team Sophie apparel? Visit our on-line store HERE

Other ways to support Sophie and all are friends with Down syndrome are to take the pledge to voluntarily remove the r-word (retard/retarded) from your every day language when used as an insult. Click HERE or visit www.r-word.org

The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.

The Buddy Walk is a one-mile walk in which anyone can participate without special training. It is a wonderful, heart-warming event that celebrates the many abilities and accomplishments of people with Down syndrome. Whether you have Down syndrome, know someone who does, or just want to show your support, come and join a Buddy Walk in your local community!

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Send Ark!

We knew before we moved here that the basement had "moisture problems." Unfortunately for us it is not only often wet, but the musty smell is so bad that we cannot store much of anything down there. This means I had to give us the finished attic to storage. The attic was supposed to be my artist's room for escaping, blogging, crafts. Not that I'm bitter. It is a rental and Lord willing we will buy our own house next spring or summer.

Since moving here three months ago (yep it has been that long already) we have experienced one major flood where the water was higher than the blocks that the washer and dryer are on. The sump pump couldn't keep up with the downpour. The streets were flooded as the sewers couldn't keep up either. The basement floor isn't flat which means you have to mop the water over the hump in the middle to the sump pump. Mark and I spent hours cleaning up the mess mainly because we didn't know it would flood that badly and we had stuff in storage down there. We did not receive compensation for our work or time (not that we asked) or discount on rent.

So, we wised up and moved almost all of our stuff to the attic except for items that are really high and won't absorb the musty smell. Since our landlord is a bit of a pack rat, the basement is still full of his crap, such as an extra (broken) washing machine, 2 (working?) refrigerators, a Christmas wreath, tables, and all manner of other junk. Seriously.

Last night we continued to get torrential rains from the hurricane (or tropical storm, whatever). This morning we looked downstairs to discover that the sump pump was broken and there is standing water. We called our landlord at 8 and again at 9. He finally called us back to report that he had been trying to find help but that everyone is booked because everyone is flooded. I've heard that flooding basements are a real problem here, even in the insanely expensive homes, so I believe him.

This time, however, Mark and I will not be working in the basement once a new (or fixed) sump pump arrives. The landlord assures me that his guy will be here "by the end of the day" to try and fix the pump. I was very clear in stating that he needs to understand that he cannot just fix it and leave. We won't be cleaning this up and he agreed. Such is the benefit of renting I suppose.

In the meantime it is still raining. As the water continues to rise I will go about my day. I'll be making a batch of chili for dinner. If I didn't laugh, I would cry.

embedded video below. if you don't see it, refresh the page or click HERE

Make an on-line slide show at www.OneTrueMedia.com

Get it Down, 31 for 21

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Happy October everyone!

October is my favorite month, hands down. Autumn is by far and away the BEST season with the changing of the leaves, back to school, football season, colorful tights, warm sweatshirts, apple cider, hot chocolate with marshmallows, caramel and candy apples, hay rides, pumpkin patches, and - HALLOWEEN! It is also the month selected to raise awareness about two issues that I am very passionate about and have dedicated my life to; Down syndrome Awareness and Domestic Violence Awareness.

This is the 4th year of 31 for 21 and my 3rd year of participating in this challenge. The challenge is simple (but I'm already exhausted). Bloggers sign up to post EVERY DAY for the month of October to raise awareness about Down syndrome. Not every post will be about DS because it is only a part of our lives. Most posts will be about our lives in general. Some will be just a picture or two. As more and more of us take this challenge (click the button above to sign up at any time during the moth of October, and do NOT feel guilty if you miss a day), people will start to notice. The more attention this gets, the more education will get out there which leads to acceptance and inclusion, two of my favorite words.

As it is also Domestic Violence Awareness Month (DVAM) I will also dedicate some posts to this issue and issues that involve violence against our loved ones with developmental disabilities. This is a subject that usually gets ignored in our community and these posts in particular tend to cause the crickets to start chirping. However, it is a subject of great importance and I won't ignore it just because it may be uncomfortable.

Don't worry, there will be plenty of warm fuzzy moments. For those who are wondering why the challenge is called 31 for 21, it is that there are 31 days in the month. It is also because DS is caused by having 3 copies of the 21st chromosome instead of 2, hence 31 for 21. Won't you join me?