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Tuesday, September 20, 2011

A Birth Healing Blessing

Matthew 5:4   Blessed are those who mourn, for they will be comforted.

I am on a list serv group for trisomy medical issues. You can find it here and join one of the trisomy list serv communities. I mostly just read the posts and glean as much knowledge as I can from seasoned families. Every now and then something special catches my eye and today was one of those days.

I have been very sad the last few weeks at the loss a good friend's trisomy 18 son ( a dedication blog to be posted very soon!). This event happened as about 10 other trisomy children also passed within a few weeks. There are several children in the hospital now, fighting for their lives.

Although the following poem was written specifically for late-term miscarriage, stillbirth, or neonatal death, I am dedicating this to all my friends who have lost children. It is beautiful.

I love you, dear friends...

A Birth Healing Blessing*
Blessed sister, beautiful one
with broken wings.
Your journey is a difficult one
that no mother should have to endure.
Your path is steep, rocky and slippery
and your tender heart is in need of gentle healing.
Breathe deeply and know that you are loved.
You are not alone,
though at times, you will feel like a
desolate island of grief
Close your eyes.
Seek the wisdom of women who have walked this well-worn
path before you, before, and before, and before you yourself were born.
These beautiful ones
with eyes like yours
have shared your pain, and
weathered the storms of loss.
You are not alone (breathe in)
You will go on (breathe out)
Your wings will mend (breathe in)
You are loved (breathe out)
~ Mary Burgess

Author, *Mending Invisible Wings*, a healing journal for
mothers following the loss of their baby through late-term miscarriage,
stillbirth, or neonatal death.

Sunday, September 18, 2011

Where Miracles Happen

While Rebekah was in the hospital for a month in June, we got to participate in a special being filmed about our local Greenville Children's Hospital. The WYFF 4 one hour special is called 'Where Miracles Happen'. It is now posted on the news station's website in seven parts, Rebekah is in Part 6. Be sure to check out her starring role: Where Miracles Happen: Part VI - Video - WYFF Greenville! We will be selling foot print autographs for anyone interested! ;-)
Here are some other pictures from that day as each of the dogs visited Rebekah. She was so funny because she wouldn't pet any of them with her hands, but she was most definitely petting them with her feet! As each dog visited, she got more bold with her foot moves.  I love my sweet little girl...
Rebekah is thinking about reaching out with her left hand.
She is very defensive of her hands and doesn't like to use them a lot.

She decided to switch to other body parts because she didn't want to stretch out those arms. Here she is deliberately useing her knee to pet a dog.

Because Rebekah was obviously trying to use her feet over her hands to interact with the dogs, I removed her shoes and socks so she could get direct contact.  Now she is really getting into it and extending her foot out the whole way!

Here's Boomer from the video link. Rebekah was rubbing him with her foot.

This dog was so funny. He came in and licked her face.
She thought it was so funny she decided to stick her foot in the dog's mouth for a lick.

Saturday, September 17, 2011

My Road To Advocacy...

I was selected this summer to participate in a federally-funded program called 'Partners in Policy Making' which is a leadership training program that helps family members learn the history of disibility law and how to become an effective advocate. Here in South Carolina, it is run through a group called Pro Parents, and they select about 15-20 people a year to participate. I get to travel to our state capital for two day training sessions that will occur over five months, learn about the law-making process at local, state and federal levels, meet speakers who are experts in topics essential to advocacy, and hopefully learn how to effectively advocate so I can better help Rebekah and others like her!   Anyone can petition to participate in the program, and if it is not available in your state as a hands-on learning process, there are free online tutorials at the Partners in Policy Making website that cover the technical information learned during the training.

I FINALLY got around to creating and ordering my own personal advocacy cards in August! It has only taken me a year of talking about it to finally get it done. The hard part was coming up with exactly what I want the cards to convey in such a small space. Because my passion is for advocating for children with trisomy 18, 13 and similar conditions, I chose several organizations that support the trisomy journey - especially those in the journey with living children. I obviously couldn't include every organization, but I can say that these organizations make a difference in the lives of families that choose life for their trisomy kids. Of the amount of funds that goes into these organizations, almost all of it goes right back out to supporting families - you can see the fruits of their labor. The list of people they have helped is long, and their leadership is full of integrity. I have been personally helped by all of them -
  • Trisomy Advocacy Group helps give a voice to those who have none, and helps connect new parents to parents willing to support and help them face doctors and hospitals not trisomy frirendly.
  • Noah's Never Ending Rainbow helps families with living children and bereaved parents who need a little financial help. They helped fund 14 families attending the SOFT conference this past summer - we were one of them.
  • Support Organization for Trisomy (SOFT - provides a way for trisomy families to connect - no matter where they are in the journey. They put out quarterly publications with lots of useful medical information, and have medical advisors on board that are 'experts' on trisomy kids. There is an annual conference that is incredible - for both those with living children, and those who have lost children. It truly is a wonderful support organization.
  • Hope for Trisomy offers comforting Gemma's Bears and Payton's bears to trisomy families, funds research projects, and helps advocate on behalf of these children.
  • There is another organization that I wish I would've added - Prenatal Partners for Life. They have helped countless friends of mine, and the founder recently lost her full trisomy 18 son. They support families with adverse prenatal diagnosis that choose to carry to term.
This is the front of the card...

...and this is the back side.
There are many other organizations that support the trisomy community, I listed them in this blog entry months ago.  But the ones that made it to my cards are the ones that have supported me most in my journey.

I would really love to be able to go to medical conferences, universities, and any place else where I can show off Rebekah and her trisomy friends and explain that life-limiting does not mean incompatible with life, nor does it mean there is no quality of life. These children are special and have many things to teach us. Rebekah and I are looking forward to our advocacy opportunities and how we can make a difference for trisomy 18 awareness. I start my Partners in Policy Making classes in October - and I can't wait!