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Wednesday, March 30, 2011

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.

Monday, March 21, 2011

Trisomy Awareness Month - Online Support


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. 

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! 
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:
  • 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.

Thursday, March 17, 2011

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.