A Nineteen Month Reprieve Ends... (PART I)

After going an amazing 19 months without a hospitalization, we finally broke our medical reprieve.  On May 30th, Rebekah started vomiting and was switched to Pedialyte to give her stomach a rest. On Memorial Day, she spent the day either sleeping or vomiting. She always tolerates pedialyte, so this was a different experience. I figured she had a virus. But after over 8 hours with no wet diapers, I called the pediatrician and they told us to head to the ER for IV fluids.

We spent 8 hours in the ER until they decided to admit Rebekah to the Peds Floor at Greenville Memorial Children's Hospital.  They started Zofran to stop her vomiting in the hopes we calm her stomach enough to restart at least Pedialyte. But after running standard blood and urine cultures, it was determined that Rebekah had a pretty significant UTI. We still didn't know the strain, so they put her on IV Rocephin, and we figured in a day or two she would be back to normal.  But it didn't go that way...

Because of the concern of the UTI extending to her kidneys, we did an abdominal ultrasound on 5/31.  It showed no major issues of Rebekah's kidneys or liver. By Wed morning, Rebekah's tummy was becoming visibly distended.  Rebekah continued vomiting despite the zofran, and was starting to vomit some bile here and there. All of this was a mystery since her blood work did not show anything significant (outside the UTI), and her white blood count numbers were actually going down. 



Michael kissing Rebekah during the Upper GI Study



An abdominal x-ray was ordered which showed a blockage in the smaller intestine. Because the doctors weren't sure if it was a complete blockage, they ordered an Upper GI Study to look at how things were digesting. To complicate matters, Rebekah had been on IV fluids since Monday evening, on IV Zofran for vomiting, and continued to vomit at least once every 3-4 hours. Her stomach was becoming more and more distended and the amount of bile backing up into the stomach was becoming significant.

Rebekah's distended tummy on Wed 6/1

For a period of about 12 hours, we attempted to administer multiple doses of barium to Rebekah for the upper GI x-ray series showing the progression of the barium through her tract. She kept vomiting the barium along with larger and larger amounts of bile. What little passed beyond the stomach was going no where. She was becoming more agitated and unconsolable. She absolutely did not want to be touched.

Rebekah's tummy on 6/2. The g-tube button was being pushed by so
much pressure that it was sticking out was past the stomach.

After the last xray at 7am Thu morning (6/2), her stomach was so bloated it was hard and her g-tube button was actually pushed up out of her skin. The pediatric surgeons decided that we were getting to a critical point and could not waste time trying different tests. We signed the paperwork, then I brought up a very sensitive issue with the surgeon.
I said, "I am sure you don't need to be told this, but if Rebekah codes during surgery, or there are any major issues, you are to do every thing the can for her."
Well, his response pleasantly surprised me. "When we cross the door into the OR, we do absolutley everything we can for our patient. Even if they had a DNR, it would stop at the door and be ignored."
(Rebekah does NOT have a DNR (Do Not Resuscitate order), but his point was in the event of an emergency, they treat everyone equally. How refreshing!.

Dropping Rebekah off at the OR.
Michael had to be at home for Isaiah's Kindergarten graduation.
It's tough having to 'choose' between your children. :-(

So Rebekah was taken to 'emergency' surgery Thu morning around 9:30 am. We met with the surgeon around 12:30p for a post op consultation before seeing Rebekah. She did great during surgery and they found and fixed the problem!

Rebekah's tummy when we picked her up post-op. Looks so much better!
It will continue to shrink as she recovers from major abdominal surgery.

Rebekah once again becomes a medical anomaly and defies statistics by having a Meckel Diverticulum present in only 2% of the population.  This extra section and about 3 inches of surrounding intestine were removed along with several adhesions. They threw in an appendix removal for free! LOL.  And to make things even more interesting, her Meckel Diverticulum didn't act 'normally' by bleeding, but inflamed the intestines enough to wrap around it causing a major obstruction. We had MAYBE another day before this would most likely have turned into periotinitis and/or necrotized (dead) intestine and become a major life threatening problem.

Sweet Rebekah looking much better after surgery.
Her face is relaxed and her lips actually have color.

Her GI doctor can't wait to see if this totally changes her digestive system issues! This may have been the culprit behind a lot of her early digestive system problems.

I want to end Part I of this story by sharing the story of Rebekah and her brother, Elijah.  Rebekah has been miserable for this past week. She hasn't smiled at Mommy, Daddy, or even her Nurse Becky. She has been very grumpy for the nurses. But when her big brother showed up Wed night, she cracked a grin, touched his face, and even held his hand. 

While that is a 'nice' story, I am telling it because there is a false assumption that trisomy kids are vegetables that are a burden to take care of and who will never know you. This is so far from the truth! Every trisomy 13 & 18 child I've met has a happy demeanor, a loving soul, and most definitely a recognition of their family. They are a special blessing, and sent to teach us about courage, hope, and unconditional love. I thank God so much for entrusting Rebekah to our family. It is where she belongs...

Rebekah and Caleb

In March Rebekah and I had the great privilege to visit her trisomy 18 friend, Caleb, for his 2nd birthday.

Here are a few more photos from our 'wedding' between Caleb and Rebekah taken by Ocala Star Banner journalist, Jacqui Janetzko. Thank you, Jacqui, for these beautiful memories!!

 

My friend, Jeannette (Caleb's Mom), is really blessed because their local newspaper is following Caleb's life story. They have followed his birthdays and major events, and will be posting monthly articles on life with a special needs child. In addition, the Adamyk's have been asked on several occassions to give a presentation at the local university to med students on trisomy 18. What an awesome way to educated these students so that they will hopefully manage their future trisomy patients on a case-by-case basis, and not under the assumption that all children with trisomy 18/13 are incompatible with life!

I am so proud of Jeannette and so happy for the positive impact Caleb is able to make on others! And I am so glad that her local media is sharing Caleb's story!  I wish our local newspaper or news stations would find a message of hope like this as something newsworthy...

Stroll for Hope - TEAM BUDD ZOO

TEAM BUDD ZOOBack: Michael & Susan
Front (left to right): Isaiah (6), Jeremiah (8), Elijah (10) holding Rebekah (2), Josiah (4)

Please support TEAM Budd Zoo in a Stroll for Hope to raise money for SOFT.  Your tax-deductible donation of even a few dollars will go to help educate both families and the medical community about trisomy 18, 13 and related disorders!  Read below for more information...

When I was pregnant with Rebekah, the majority of the information I got from doctors and online resources were full of doom and gloom. We prepared for the worst. But when Rebekah ended up living and thriving, I was left without information on how to care for her. One of the few organizations I've found that actually has medical advisors and trisomy experts, as well as an international registry of trisomy 18/13 families, is Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) - a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children. 

We are excited - all seven members of the Budd Zoo will be attending the SOFT Conference in Chicago in July! The conference will provide a free medical clinic for the SOFT kids, and Rebekah will be able to consult with 3 specialists to get additional advice on her care.  

As part of the conference activities, we will be participating in a Stroll for Hope event to raise money for SOFT. We are taking pledges/donations for our stroll around HOPE Hospital in Chicago, IL. Your donations are tax deductible and go to a great organization! And thanks to SOFT, our family has received a scholarship to help us offset the conference costs, and we want to be able to give back so other families can attend in the future. 

My plug for supporting SOFT (trisomy.org):
I encourage anyone facing a journey with a SOFT child, including the medical professionals that will care for them, to join this organization because of all the things they can provide:

• Help and support for families;
• Medical advisors who are experts on trisomy 18/13 kids;
• Materials available for care of trisomy kids;
• SOFT Times, a quarterly magazine full of informative articles, life experiences, practical information, summaries of latest research articles, tons of inspiring pictures of living and thriving children, and much more;
• New family packet that is a great resource.

I have found their materials to be awesome resources for our family and for Rebekah's doctors. The books include info like typical problems, recommended medical treatments, and growth curves for trisomy kids.

Most important - this is a volunteer run organization! Even the medical advisors are volunteer. All money donated to SOFT goes to subsidize conference costs, create informative materials for families, education opportunities, support of trisomy-related studies, and so many other good programs! It DOES NOT pay for salaries or projects in conflict with the purpose of the organization.

Thank you for your love and support of Rebekah, and children like her!

Little God Moments...

In the hustle and bustle of life with 5 kids, a calendar full of activities from early morning until late night, and sleep deprivation, I sometimes find myself getting frustrated with life...feeling a little out-of-control and discouraged.

In an attempt to get that under control, I am trying to do a better job of clearing my calendar of nonessential activities, focusing on daily quiet time (with the help of my new NLT One Year Chronological Bible), and appreciating my very blessed life more. But I struggle daily with being focused on myself and not focused enough on what God is doing or wanting from me 'today'.

Today's reading included a passage from Psalms 9:1-2.

I will praise you, LORD, with all my heart;

I will tell of all the marvelous things you have done.

I will be filled with joy because of you.

I will sing praises to your name, O Most High.

So it shouldn't come as a surprise that I had a moment that made me want to tell everyone how good my God is!  It was a moment that really encouraged me and made me look at the last few weeks to see how God is always working in my life, even when I am not giving him my best.  I wanted to capture today's moment and one other recent moment so I can remind myself and others that we experience these little God moments all the time - we just need to take the time to recognize and rejoice in them!

So here's my God Moment...
Michael is out of town and I needed to get all 5 kids to a piano recital practice at 6:45p. If I cooked, it just wasn't going to happen. So thanks to having some free kids meal coupons for Chick-fil-a (and thanks to Bell's Crossing Elementary and our Woodruff Rd Chick-fil-a), we had dinner on-the-cheap.  That alone is a blessing! :-)

A couple sitting near us in Chick-fil-a were driving through town and decided at the last minute to stop at this particular Chick-fil-a so that the boy with them (I didn't catch if he was their son, grandson, nephew...) could play and hopefully find someone else to play with for a few minutes before they continued on. The child was thrilled to see my 4 boys there!  They asked me about Rebekah and we started talking. They put two and two together and realized that Rebekah is the unborn baby they had been praying for over 2 years ago and continue to pray for, thanks to learning her story from their neice who attends my church. What a small world! And what a blessing for them to meet the little miracle baby they had faithfully been praying for!  They were surprised how well she looked/acted for being considered 'incompatible with life'.

In addition to getting to meet Rebekah, they were also able to give me some important advice and a promise for future help so that I might be able to have a better chance of getting some media coverage for one of our future local trisomy family meetups.  We were both encouraged and excited about this God-orchestrated moment!

God Moment #2...

So as I was putting these thoughts together, another obvious God moment jumped out that happened just last weekend.

Saturday mornings, at the moment, are filled with soccer games. Last Saturday, we headed to Yogurt Mountain to socialize/celebrate after Isaiah's soccer game.
The coach's wife, Lisa, was not planning to go to Yogurt Mountain this day because it was on the other side of town and she wanted to get some things done. She really did not want to go.  But at the last minute, she just felt the urge that she needed to go.

When we got there, I pulled Rebekah out of her car seat with a feeding tube still attached to her, and managed to totally break off the button mechanism that allows the feeding tubes to attach and lock into her feeding button. It was going to be impossible to feed her without getting the tube changed out, and the type she has (AMT Mini-One Non-Balloon Button) needs to be changed at the Peds Surgery office or, in case of a weekend/after-hours, in the ER! 

The dilemma I had was that Michael, Elijah, and Jeremiah were getting ready to head out of town for a hiking/primitive camping trip that they had been looking forward to for weeks. And if they stuck around for my unplanned ER trip, their weekend plans would be ruined.  I had Josiah(4), Isaiah (6), and Rebekah. Just how fun could a long ER trip be with a 2, 4 and 6 year old? Also, I did not have her backup g-tube, it was 20 minutes at home and the opposite direction of the hospital. The hospital is 30 minutes from our house. So I am looking at about 1 1/2 hours of driving time too.

I decided to sit there and at least enjoy some frozen yogurt until I figured out the least painful course of action. Well God bless Lisa, because she offered to take Josiah and Isaiah to their house (knowing that I had a long drive and wait ahead of me, and it would be hours before I could pick them up).  What a total blessing to me, AND to my boys!!  And the greater blessing is that Lisa recognized that she was meant to be there, at that time, for that purpose. And she was so gracious and insistent in her offer that I totally felt it was from her heart and that I was in no way putting her out or taking advantage of her. It was so great to be able to send them off with that family knowing that my kids would not be bored to death in the ER, that someone actually wanted to watch them, and that I did not ruin the weekend for Michael and my two oldest boys! And as I texted Lisa several times with updates from the ER, she continued to assure me that everyone was fine and she was happy to help out.

I was at the ER for quite some time, but I managed to pick up my boys just right before Lisa and her family had a scheduled activity. What God-timing for the whole day!

There are so many other little moments in my life that clearly show God's hand. I need to take the time to recognize them, appreciate them, and thank/praise God for such moments!

God is good, all the time! And all the time, God is good!

Recall Notice

RECALL NOTICE

The Maker of all human beings (GOD) is recalling all units manufactured, regardless of make or year, due to a serious defect in the primary and central component of the heart.
This is due to a malfunction in the original prototype units code named Adam and Eve, resulting in the reproduction of the same defect in all subsequent units. This defect has been technically termed "Sub-sequential Internal Non-Morality," or more commonly known as S.I.N., as it is primarily expressed.

Some of the symptoms include:
1. Loss of direction
2. Foul vocal emissions
3. Amnesia of origin
4. Lack of peace and joy
5. Selfish or violent behavior
6. Depression or confusion in the mental component
7. Fearfulness
8. Idolatry
9. Rebellion

The Manufacturer, who is neither liable nor at fault for this defect, is providing factory-authorized repair and service free of charge to correct this defect.
The Repair Technician, JESUS, has most generously offered to bear the entire burden of the staggering cost of these repairs. There is no additional fee required.
The number to call for repair in all areas is: P-R-A-Y-E-R.
Once connected, please upload your burden of SIN through the REPENTANCE procedure. Next, download ATONEMENT from the Repair Technician, Jesus, into the heart component.
 
No matter how big or small the SIN defect is, Jesus will replace it with:
1. Love
2. Joy
3. Peace
4. Patience
5. Kindness
6. Goodness
7. Faithfulness
8. Gentleness
9. Self control
 
Please see the operating manual, the B.I.B.L.E. (Basic Instructions Before Leaving Earth) for further details on the use of these fixes.

WARNING: Continuing to operate the human being unit without correction voids any manufacturer warranties, exposing the unit to dangers and problems too numerous to list and will result in the human unit being permanently impounded. For free emergency service, call on Jesus.
 
DANGER: The human being units not responding to this recall action will have to be scrapped in the furnace. The SIN defect will not be permitted to enter Heaven so as to prevent contamination of that facility. Thank you for your attention!
 
- GOD 
 
P.S. Please assist where possible by notifying others of this important recall notice, and you may contact the Father any time by 'Knee mail'! 
 
Because He Lives!

SC Trisomy 18 Meetup and Birthday Party

Rebekah at 22 months

We will be celebrating Rebekah's 2nd birthday this week!  Unlike her grand 1st birthday affair, the guest list is much smaller and the venue is our backyard! However, the guest list is amazing - trisomy 18 families from possibly 4 states coming to celebrate and meet together for support! Kids will range in age from 1-10 years old!  We will also have a child with a 2q microdeletion, a chromosome 15 partial deletion, and possibly a trisomy 9p there as well.

Part of my passion since having Rebekah is to raise awareness of Trisomy 18 and similar conditions, and to EDUCATE the medical community that these children can thrive and that they deserve a chance. Each one should be evaluated as an individual, and not as a label - "incompatible with life".  So I sent out the following note to four local TV stations and one local newspaper hoping that someone would consider coming out and helping us to raise awareness.

Hope it works! Let me know what you think or how I could've made it better (for future events).

---

On Saturday, April 23^rd, there will be a gathering of children with Trisomy 18 – a condition considered ‘incompatible with life’. These children will range in age from 1-10 years old – pretty good for someone told they shouldn’t be living!  We invite you to share their story. The details are below.

---

Imagine if you were told that your unborn child was incompatible with life? How would you feel if your newborn were denied medical services and life-saving equipment such as apnea and pulse ox monitors because it would prolong the inevitable? What if you were told that if your child does survive birth, you should not do any medical interventions because you would regret your decisions down the road? What would go through your mind if you were told that your child would be a vegetable and never recognize you or interact with their environment?  That is precisely what most trisomy 18/Edward’s Syndrome parents are told when diagnosed. 

Trisomy 18 is where there is an extra 18^th chromosome. It is the second most common trisomy behind trisomy 21 (Down’s Syndrome), and about one in 6000 live births are to a trisomy 18 child. But still not many people know about it because of the low survival rate and lack of medical community support to help these children.  90% of the babies do not survive birth (either because of medical issues or termination) and of those that survive, only 10% will see their first birthday, usually with severe medical issues and global developmental delays. In the medical books, Trisomy 18 really does carry with it the term of being ‘incompatible with life’; that is what doctors are taught in med school, and what parents are told upon finding out their child has this genetic disorder.

On 4/21/09, our daughter, Rebekah Faith, was born with Trisomy 18.  She would have died from severe obstructive apnea if we had not made a decision at 6 weeks old to give her a life-saving tracheotomy.  The first year was full of ups and downs, but she has been doing really well despite severe developmental delays and she is redefining the term, ‘incompatible with life’.  We have learned so much from our journey with Rebekah over the past two years, and she is our little miracle and our hero!  We appreciate life so much more because of having her with us, and we definitely see God’s hand in the orchestration of her life.

In April 2010, the Simpsonville Tribune Times ran an article of her story and first birthday party, which was a grand event with several hundred people joining us at First Baptist Church of Simpsonville to celebrate her awesome journey and milestone.  On the afternoon of Saturday, April 23rd, we will be celebrating her SECOND miraculous birthday with a much smaller party, but we are expecting at least 5 other trisomy 18 children, and a few other children with chromosome deletion syndromes, to join us at this celebration!    This is quite incredible to have these kids together in one place, and see how much joy and love they bring to their families! None of them deserve the label of being called ‘incompatible with life.’  These children do not deserve to be thrown away and ignored because they have this label. If you could see all of them together, you would see just how full of life they are! 

We invite you to help change the views and medical practices of these children. Please come to Rebekah’s party on Saturday, April 23^rd between 2-3 pm to meet and share the stories of these amazing trisomy 18 children, and let families and doctors know there is hope and support for children of trisomy 18.  

Special Friends and Special Celebrations

Early March, I made a very special trip down south to Ocala, FL with Rebekah. We were on a mission to celebrate a very special 2nd birthday party for another trisomy 18 child named Caleb.  I have been friends with his mom, Jeannette, for about two years. We met on facebook and I started a group called Trisomy 18 Mommies.  

Jeannette and Susan

Jeannette is my BFF - we've shared the 'Trisomy Journey' tears, fears, and joys together... but it has always been 'virtually'. We would even talk on the phone several times per week, but we had never met in person. 


I was so excited to finally meet her!

Rebekah and Caleb in their 'wedding' clothes.

Before the trip, Jeannette and I joked about dressing up Rebekah and Caleb in wedding garb and taking some photos. Very soon I will have a video slide show of this event!  Although it started out as a fun idea, in the back of our head there was always the reality that they will most likely never get to experience a real wedding. 

Rebekah and Caleb holding hands. :-)

The birthday party was amazing and I got to meet, not only Jeannette and Caleb, but several other special friends!!

What's really amazing is that Caleb's local news has been following his story from the beginning.  Here is a link to the most recent story about his birthday party and all of us who traveled to be there for the special occasion! Caleb Turns Two Amid Support For Edwards Syndrome Kids  


They have published several newspaper articles about Caleb and the journalist following Caleb's story recently posted a mini-documentary about him (below)!

If you'd like to keep up with Caleb's story, here is Jeannette's blog. 

The VALUE of One Extra Chromosome

Trisomy Awareness Month is coming to an end. There are a lot of thoughts I wanted to share, but I don't get as much time to blog as I used to - which is a good thing! It means I am not in a hospital room somewhere, but living life with my family!


This video from a Trisomy 18 Angel Mom, Katie Weaver, says it all!  It is full of children with trisomy 18, 13, 9, and other similar variations. (Rebekah has a little video blurb at 4:18!)  Katie is also the one who created all of the awesome t-shirt designs on my Trisomy Awareness Month - Online Support post.

How I wish all of the doctors would watch this video! Too many of them consider these children incompatible with life because of an extra chromosome. They assume that these beautiful children will never be of value to society, and therefore can be tossed aside, refused medical care, or terminated before even given a chance.  Bearing them is considered a misfortune, and supporting their life is a burden to society.


The definition of value is relative worth, merit, or importance; or the worth of something in terms of the amount of other things for which it can be exchanged or in terms of some medium of exchange. In today's society, we place value on a person based on how they look, how smart they are, how much money they make, how 'successful' they are, social status, popularity...   


But God has a different definition of value. Genesis 1:7 tells us that God created man in his own image. And Psalm 139 beautifully explains how God sees and knows us, how he created our inmost being, knitting us together in our mother's womb. Your see, God desires for ALL of us to create value in this world. He wants us to make the world just a little bit better than it was when we got here - and the "little bit better" that we create is our true value to the world. God places infinite value upon all people, no matter their race, gender, social status, economic situation, or (dare I say it?) genetic and health disorders!  Our length of time on earth also does not determine our value.  Jesus' ministry only lasted approximately 3.5 years - yet his life changed the course of history, affecting world religions, our calendar, and the lives of those who come to personally know him.


The children in this video (and those like them) add more value to the world than some of the world's most 'successful' people. They teach us unconditional love, they teach us an appreciation for all of the things we take for granted, they teach us about miracles and that scientists and doctors don't know everything and can't explain everything, they draw us closer to God and show us the real 'value' of life!  And the bottom line is, they are also created in the image of God.  If we love our God as we are commanded to do, we will also love those that He loves!

So I choose to see the value in every life, 

and to love those that He loves.

Trisomy Awareness Month - Online Support

MARCH IS TRISOMY AWARENESS MONTH

Trisomy 21, Down's Syndrome, has had support of the medical community for some time now, but that is not the case with Trisomy 18 (Edward's Syndrome), Trisomy 13 (Patau's Syndrome), and any number of other chromosome trisomies and deletions.  I want to list resources that have been so important to me in this journey, sources that provide hope and help. 

BACKGROUND

When I was pregnant with Rebekah in 2008-09, we had perinatal hospice support (which was very helpful in emotionally preparing us) and had even planned her funeral before she was born.  Rebekah survived birth and we took her home on hospice care.  I searched the internet for stories of hope.  I found a few blogs of kids living with trisomy 18, but there really were not that many positive online sources to be found. 


I joined the facebook community at that time, not willing to give up hope for our child.  I began connecting with trisomy 18 families from around the world, and started a facebook group called 'Trisomy 18 Mommies' that helped us connect even faster.  Of course, there are dozens of trisomy-related groups now, but this was my window into a new world of possibilities for our daughter.

As I learned more about other miracle children and as Rebekah solidified what we already knew - she was not a 'vegetable' or an 'unfortunate mistake', it didn't take us long before we ditched 'palliative care' for our daughter, and started treating her medical needs as we would any of our other children.

Love it or hate it, FACEBOOK has provided us with an EXPLOSION of online connections and resources for the trisomy community. Once on, you can be quickly connected with hundreds of families sharing the same diagnosis and having the same medical conditions as your child. We have been able to utilize these connections to get medical support for several children that were refused medical care, and we have also been able to use these connections to hook families up with doctors that are willing to provide medical interventions. Most of all, the networking of parents has provided an INCREDIBLE wealth of information - trisomy families are being more aggressive and proactive as a result. And I have seen more HELP given to families of living trisomy kids through these connections than through any foundation or organization out there.

I have used this online community of friends along with my list of resources below to help me in this journey.  These resources will provide positive support throughout all stages of this journey. But daily contact with others who understand your pain and joys in this journey is critical!  I encourage anyone finding this blog to get on facebook and join the largest and most active group or trisomy families anywhere! 

RESOURCES

These are listed in alphabetical order. This is, by no means, a definitive list.  And while these are great resources, the BEST resource is the online facebook community because it is not subject to any one organization's limitations, red tape, or politics.  

• Be Not Afraid - This is an online outreach to parents who have received a poor or difficult prenatal diagnosis. Be Not Afraid Facebook Page
  
• Facebook Groups
• Trisomy 18 Mommies - Originally started for trisomy 18 moms, the list now has some dads and some other related disorders like trisomy 13.
• Trisomy 18/13 Journey - Created after trisomy 18 mommies to pull in other families and share 'journey' experiences.
• Faces of Trisomy - Created to raise awareness for all kinds of trisomy (except 21 - Down's Syndrome). Lots of encouraging pictures here!
• SOFT - Support Organization for Trisomy
• Trisomy Awareness 2011 Facebook Photo Album - Thanks to Alisha Hersman-Hauber for the amazing photos and blurbs about kids like Rebekah, redefining 'incompatible with life'! These will eventually become part of a living with trisomy 18 site!
  
• Hope for Trisomy 18 & 13 - Funding research, promoting education, raising awareness, and changing lives. Also links to Gemma's Bears (gifts for unborn/newborn trisomy 13/18 babies) and Payton's Bearts (Stuffed Bear gift for living trisomy 13/18 birthdays)
  
• Iron Man for Kids - This is an organization that seeks to bring awareness and support for trisomy 13 and 18 families through participation in, and hosting of, sporting events. This family doesn't even have a trisomy child, but they have done a lot for the trisomy community and awareness!
  
• Living with Trisomy 13 - Offering support and resources to trisomy 13 families and an online directory of Trisomy 13 children! Living With Trisomy 13 Facebook Page
  
• Molly Bear Foundation - Provides supplemental financial assistance to families of Trisomy 18 kids. Molly Bear Facebook Page
  
• Noah's Never Ending Rainbow - This is a national (USA) trisomy organization with a mission to educate, advocate, raise public awareness, promote strategic alliances, and assist families.  Noah's Never Ending Rainbow Facebook Page.
  
• Now I Lay Me Down To Sleep - Remembrance photography provided for free for families with adverse prenatal diagnosis or infant death. NILMDTS Facebook Page
  
• Prenatal Partners for Life - Support and encouragement for families carrying to term with an adverse prenatal diagnosis and support for raising special needs children. Prenatal Partners for Life Facebook Page
  
• Rowan Tree Foundation - Helping families heal after the loss of a precious child. Rowan Tree Foundation Facebook Page
  
• SOFT - Support Organization for Trisomy 18, 13, and Trisomy Related Disorders - This is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome trisomy disorder, and education to families and professionals interested in the care of these children. You can purchase books on care of trisomy kids (great resources for new parents!) and they have an annual conference where families get together and support each other. SOFT does have chapters in other countries so this is the one related nonprofit out there that is truly a global organization.  They are also tied into the hospital systems in the US, so information published here gets out to the hospitals. Please consider joining this organization!  S.O.F.T. Facebook Page
  
• TRIS and Living With Trisomy - Ongoing research project / database for Tracking Rare Incidence Syndromes that also maintains links to helpful groups for every chromosome.
  
• Trisomy 18 Foundation - Provides support and information to trisomy 18 families. Trisomy 18 Foundation
  
• Trisomy Online - Email lists that connect you internationally with other families. I am on the tri-med list and have learned a lot from the other families. I don't personally participate in a lot of the conversations, but it is a good resource to see how medical issues are handled internationally.
  
• Trisomy 18/13 Awareness T-shirts - Thanks to Katie Weaver for her awesome designs! You can buy lots of trisomy awareness items and proceeds go to Noah's Never Ending Rainbow. The designs on this blog entry are from her and you can find a lot more at:
• http://www.cafepress.com/TrisomyTsbyKT
• http://trisomy.spreadshirt.com/
• You Tube - there are MANY videos showing trisomy 18 and 13 kids hitting milestones and thriving! Just search for something like trisomy hope in the you tube search bar and you will get positive videos. Stay away from the school project videos filled with erroneous information.

Idaho Senate panel passes 20 week abortion ban

WARNING, WARNING - This is a controversial topic about a very deep and painful subject. I will not compromise or debate my beliefs.  (i.e. please no blasting me on this topic with your disagreements - simply stop right here.)

Why this was on an msn money link, I'm not sure, but you can access the link for the complete article here.  Basically the Idaho senate decided it was cruel and painful to the baby to perform an abortion after 20 weeks. The abortionist doctor, of course, countered. He used the argument below.

Dr. Glenn Weyhrich, a Boise medical doctor who performs abortion services, said an absolute ban on such procedures after 20 weeks could force a woman to deliver a baby she knows is destined to die, causing deep psychological trauma and suffering, he said.

"In my experience, I've have not had any experience with women who opted to carry the pregnancy (with a fetal anomaly) to term," Weyhrich said. "The way this bill is written, the woman would be obligated to carry those pregnancies to term."

I am prolife, and I don't apologize for my beliefs. I don't think it's okay (on one hand) for a mother to abort her baby, but (on the other hand) if someone else kills her unborn baby, its manslaughter.  I think it is insane to think it is humane to do late term abortions (as the article points out too that pain receptors are well in place by 20 weeks, and the procedure of sucking out the brains is quite gruesome). I don't condemn anyone who has made any abortion decision, it is one I am glad I will never have to make.  We must each live with our own choices in life.

I DO believe that the choice to abort is not an easy one that women walk away from unharmed. I think it is as, if not more, emotionally devastating as the possibility of bearing a terminal child and planning the funeral before you even get to see the sweet face of your baby. The abortion decision can elicit all kinds of self-inflicted emotional pain and goes against the grain of what we were created to do.

God tells us that we are made in His image, created according to His plan, and made for a specific purpose. EVEN if it is a 'terminal' child, or a child conceived out of hatred and pain, or just an unwanted nuisance.

For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.  Ephesians 2:10 

I think I can speak for the majority of my trisomy friends (including those that lost their baby at or shortly after birth) that the psychological trauma and suffering were not reasons to abort. Yes, it hurts, it's 'not fair', we don't understand 'why me', and the pain doesn't go away. But there is also an unexplainable joy in bringing any child of God into the world, even if having to bid him/her farewell too soon.

That this doctor has NEVER had an experience with a woman who opted to carry a child 'incompatible with life' to term is...just very sad.  I am sad for him and for all the women that believe that lie.  I am also sad for all the people that buy into the lie that a condition can be deemed so 'incompatible with life' that abortion is the only logical answer. 

I praise God that we did not make such a decision for Rebekah. I praise God for all of the wonderful trisomy babies I have met in the last two years and for the parents that also did not make an abortion decision. I thank God for the incredible friendships that have resulted from my personal journey. 

Several moms have shared that they chose abortion based on false information that there was no hope for their child. And now, they see all of these children thriving and bringing joy to their families, and they have deep regret and sorrow.  And they wonder, 'what if...' For all of you, please know that there is a release from that bondage!

"If we confess our sins, He is faithful and just to forgive us our sins, and to cleanse us from all unrighteousness." I John 1:9 

May God bless all of those who speak up and fight for those who cannot speak or fight for themselves.