Loving Life With Full Trisomy 18 - Edwards Syndrome - Helping Families with Prenatal and Postnatal Diagnosis of Trisomy 18, 13, and Related Chromosome Disorders - Dealing with Ethics, Genetics, and Related Medical and Health Issues
The irony of pro-life/pro-choice in politics ends up in this generalization -
The Republicans are predominantly pro-life, but do support death penalty and don't support the programs that would be necessary to help those born with conditions requiring long-term care (in other words - people that won't be productive tax-paying citizens). So let's save all the pre-term and unwanted babies, but do nothing to help them...
The democrats are pro-abortion (yeah, yeah you can say pro-choice if you want to), but don't support death penalty and do support programs that help those born with conditions requiring long-term care and even support programs for a percentage of people out there that just don't want to be 'productive members of society'.
So one keeps babies alive but doesn't support a lot of funding for helping them, one supports killing babies, but entitles everyone to services. Yes, this is a generalization! I obviously don't think it's quite so black and white, but I find it ironic none the less!
There is one republican politian (Rick Santorum) who 'gets' the value of all lives. The Santorums have dealt with infant loss of their son Gabriel (Letters to Gabriel) and currently have a 3 year old trisomy 18 girl named Bella.
At first, Santorum was emotionally detached from his disabled daughter but, when she faced her own battle for life, he suddenly realized, “This child…can do nothing but love me.”
Santorum observed, “That’s me with the (Heavenly) Father—I am so profoundly disabled in His eyes.”
The picture of Senator Santorum posing with Chloe Kondrich (a Down's Syndrome child - trisomy 21) says more than words ever could. His broad grin shows that he has come to realize the worth of every human life, no matter what challenges that life may face. (from Disabled Children Have So Much To Teach Us)
I am so grateful for experiencing the joy of having Rebekah. And, although I may not agree with all of his politics, I do believe that he would compassionately protect rights and services for children like Rebekah (even though she will most likely never be a productive member of society). I think he will be compassionate toward all people, because he has come to realize what all of us with special needs children realize...that each life is valuable. And he is so right in observing that, in God's eyes, we are all profoundly disabled.
As little as 2-3 years ago, there were very few resources online to help families faced with the diagnosis of trisomy 18/13. There were even fewer active resources that helped CONNECT families of LIVING children. While I was pregnant with a prenatal diagnosis of trisomy 18, I needed that hope and I needed to talk to 'experienced' trisomy families so I could educate and prepare myself. It was so hard to find living kids. So I started a group called Trisomy 18 Mommies* on facebook to connect all of us, no matter where we were in the trisomy journey, and suddenly I started finding trisomy families, many with living kids that provided me with so much hope! Online, the trisomy families share fears, milestones, illnesses, frustrations, tears, joys, friendship, knowledge, and grief. We share things our friends and families just don't understand, because they are not on the same Journey.
I have a very special bond with one family in particular - the Adamyks. Jeannette and I found each other on facebook as we were both beginning this trisomy journey. Jeannette and I quickly started sharing more than just the trisomy journey, we started sharing life together. The Adamyk's son, Caleb, was born a month before Rebekah and also with full trisomy 18. Jeannette and I may have developed a strong bond, but I always felt like Rebekah and Caleb were kindred spirits too. Caleb is the 'groom' in Rebekah's 'wedding' pictures, and they look a lot alike and share many mannerisms.
Caleb went to be with Jesus on 8/29/11. I have to be honest, I have had a very rough time this past month. I haven't been interested in my normal activities, it is a struggle to get through the days, and I have been having bad dreams and anxiety. I have wanted so much to blog about Caleb's funeral and my feelings through this grieving process, yet I still cannot put it into comprensible words. I know my pain isn't anywhere near that of Jeannette and her family. Yet my pain is enough that it has been debilitating. Oh how I hate that one of my best friends has to go through this part of the 'journey'... and I hate that any of us have to even think about facing it one day. But through our friendship, and by sharing this journey with Jeannette, I have seen the depth of her love, the depth of her commitment, the extent to which she would go to help her son, and how to gracefully and lovingly one can face the worse nightmare of any mother - the death of your child. The pain and suffering doesn't negate the joy and blessing of having a miracle child that defies the odds. It doesn't make us regret choosing life.
Caleb's legacy and what he means to the trisomy community:
Caleb had the most beautiful smile that melts everyone's heart. He showed that having a special child could be full of happy moments.
He gave us hope to not give up on our children, but to fight for them.
Caleb became an encouragement to other families faced with the same diagnosis, and the Adamyks showed us how to be advocates for our children.
Caleb proved that life is more than what you accomplish by worldly standards. Trisomy 18 children are worth fighting for. Life isn't about striving for perfection or success, but about loving and living, and enjoying each day.
Caleb helped bring people closer to God and gave us a glimpse of what unconditional love means - suffering without complaint while loving those around us, just as Jesus did.
Before Caleb went to the hospital in what would be his last days, Steven Adamyk twirled him around outside in the rain, just enjoying a special moment with his special son. This beautiful moment reminds us that "Life isn't about waiting for the storm to pass, it's about dancing in the rain."
Jer 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Although it is hard for me to see and accept this now, I know in my heart its true and I am praying daily for the Adamyks and for all my trisomy friends that have lost their child.
Caleb lived in Ocala, FL. Ocala Star Banner has been following Caleb's story since birth. Here are the links to some of the beautiful pieces done on him:
Weak and wounded sinner
Lost and left to die
O, raise your head, for love is passing by
Come to Jesus
Come to Jesus
Come to Jesus and live!
Now your burden's lifted
And carried far away
And precious blood has washed away the stain, so
Sing to Jesus
Sing to Jesus
Sing to Jesus and live!
And like a newborn baby
Don't be afraid to crawl
And remember when you walk
Sometimes we fall...so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!
Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live!
O, and when the love spills over
And music fills the night
And when you can't contain your joy inside, then
Dance for Jesus
Dance for Jesus
Dance for Jesus and live!
And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory's side, and
Fly to Jesus
Fly to Jesus
Fly to Jesus and live!
Rest in Peace, Sweet Caleb. We love and miss you so much!!
*Trisomy 18 Mommies is one of many online resources available to families wherever they are in the trisomy journey. We currently have about 540 members at all different points in 'the journey'. Contrary to the name, the group is also for dads, family members, etc and encompasses families facing trisomy 18, 13 or any similar genetic disorder considered 'incompatible with life'. However, Facebook will not let us change the group name to better reflect the composition of the group. :-) If you are facing a diagnosis of trisomy, already have a trisomy child, or have lost a trisomy child, we offer a community of compassionate members that 'get it'. Feel free to join us.
