March 10, 2012

Somethings just make my heart hurt....

Last week I read an article from the New York Times "The DNA Age - Prenatal Testing Puts Down Syndrome in Hard Focus" which explained that today 90% of parents who find out that their child will be born with Down Syndrome (DS) chose to terminate (abort) the baby. When I read this article my heart just ached. It ached because to me the article showed how little life is valued, especially if the life in question may not be a "typical" one.

When I spoke out about this article on Facebook, I struck a nerve with many people. While my intentions weren't to "call out" or personally hurt anyone who has had an abortion after finding out that the child they were carrying wasn't going to be a "typically developing child" it became clear that many felt that is what I was doing. I want to apologize to those that I may have hurt, but I will not apologize for believing that abortion is wrong. I will also admit that I may not have chosen the best wording when I was trying to express my feelings. In the midst of my anger over the loss of the lives of so many unborn babies I was not a good witness for Christ. I am sorry about that.

One thing that I didn't say, and I should have, is that God is a loving God and He is willing and waiting for us to ask for His forgiveness for our sins (all sins). Romans 5:8 tells us, "But God demonstrates his own love for us in this: While we were still sinners, Christ died for us." John 3:16-17 states, "For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. 17 For God did not send his Son into the world to condemn the world, but to save the world through him." Everyone sins, it is just that those of us who know Jesus Christ as our Lord and Savior are saved by His grace. John 10:28-29 records Jesus reassuring believers that those who put their faith in Him can be sure of our faith even when we mess up and fall (because we will and do), "28 I give them eternal life, and they shall never perish; no one will snatch them out of my hand. 29 My Father, who has given them to me, is greater than all ; no one can snatch them out of my Father’s hand. 30 I and the Father are one.”

If you are reading this and don't know Jesus Christ as your Lord and Savior, please know that He loves you and is waiting for you to come to Him. If you would like to learn more about having a relationship with Jesus and His gift of eternal life, I am willing to talk with you and/or you can learn more here.

If you are reading this and you or someone you know has had an abortion, please know that God loves you and that He offers you forgiveness and healing. A great online resource for those who are recovering from an abortion or if you have a friend who has had an abortion is Project Rachel. If you live in the Decatur, Illinois area, New Life Pregnancy Center has a confidential abortion recovery group, you can learn more about the group and all of NLPCs services on their website - http://www.newlifepregnancycenter.com/

On Facebook I also said, in my response to the article, that I would "trade" a DS diagnosis for a PBD diagnosis any day. This wasn't because I am totally naive about the challenges and medical issues that children and adults with DS and their families face - although I will admit that I am no expert in DS. I was rather trying to express my concern that it appeared from such a harsh statistic that parents felt that the challenges of DS were too overwhelming, and therefore most children are not even given the chance to live outside of the womb.

In general, DS is not considered a terminal illness. This was what I was referring too. I mean, I was holding my 28 day old son when the geneticist told me that Ethan had only a 50% chance of living to his first birthday, and if he made it to one, he had a 75% chance to make it to five, but children with PBD rarely live past 10. By saying that I would "switch" or "trade" is something that I was meaning in the sense that I would love if my son did not have a terminal illness! It would also be "nice" that if Ethan had to be "different" it was with something that most people have at least heard of even if they aren't familiar with it. I mean, PBD just isn't something that the majority of people have ever heard of, most doctors will never treat a child with PBD and our doctors often ask us to share what we've learned from other parents of children with PBD, because they just don't have the experience or familiarity with PBD.

Not only does PBD steal the quality of life from children and ultimately their life long before it should, it changes your plans for a family for sure. As most of you know, Jeff and I are unwilling to risk having additional children with PBD so we have decided that we won't have any additional children "the old fashion way." This is also an area that many families who have a child with DS don't struggle with in the same way. A mom that I met at the Down Syndrome playgroup told me that the doctors told her that after having one child with DS the chance of having another with DS is typically 1%. (Her son is 3 years old and has DS - she had him when she was just 28 years old) For families like ours, who carry recessive traits for nasty diseases, there is a 25% risk with each pregnancy. For us, if we build our family someday we plan to do so through adoption, most likely through foster care. Why foster care? For families with special needs children still living it is often very hard if not impossible to adopt an infant, because most birth moms will not "pick" them. So, on top of the financial part of infant adoption, this is often not an option for families with a living special needs child. Other options for building a family include the use of donor sperm or a donor egg, the adoption of an embryo that would be implanted or in-vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD) - this allows the embryos to be tested prior to being implanted so that only "healthy" embryos would be implanted. Some of these option, particularly the last two can be very expensive and aren't covered by most insurances and IVF with PGD is not something that many who believe that life begins at conception consider, even if the cost wasn't an issue. Therefore many families have very few options. Some families decide to play the genetic lottery and chance it, have prenatal testing done early on in the pregnancy and decide then depending on the results if they will chose to continue the pregnancy or not. Because Jeff and I are in agreement that we would not abort a child, we are not willing to go down this road. It hurts me heart knowing that so many people put themselves in this situation, especially if they go into it knowing that they will terminate the baby if the baby isn't "healthy." I know that may offend some people, and I'm sorry, but that is how I feel.

I believe that all children are gifts from God, they are created by Him. In Psalm 139:13-16 we read,

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

I believe that Ethan was "fearfully and wonderfully made." I believe he has value in the eyes of the Lord and should in our society, as should children with Down Syndrome and those with any other challenge or disability. I believe that the Lord has a purpose for Ethan and for us and his parents, even if I won't "understand" or know the "WHY?" this side of heaven. I won't try to pretend that I don't have tough days but I have faith. I like the definition of faith found in Hebrews 11:1, "Now faith is confidence in what we hope for and assurance about what we do not see." I remind myself of that verse a lot. When I get down, I also remind myself of the promise recorded in Romans 8:28, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." as well as Jeremiah 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." Jeremiah 29:11 can be especially hard for me sometimes, especially when I think of the very real reality of PBD, but I know that God has a plan way bigger than me, and that while Ethan may only ever be healed when he is in the presence of the Lord in Heaven - healed by the Great Physician, in the end I have faith and I believe the promises of God.

Prayer Requests
  • Pray that those who do not know Christ will come to know His love and the forgiveness and hope that can only be found in Him.
  • Pray for all the children and families impacted by PBD, Down Syndrome and other challenges and/or disabilities. Pray for the health and happiness of the children and their families as well as wisdom and strength for their parents as they raise and love children in a world that doesn't "get" them.
  • Pray that our world will put a greater value on the lives of unborn children. Pray for women who need the Lord's forgiveness and and healing if they have had an abortion. Pray for more families to be open to adoption so that women facing unplanned pregnancies can be empowered  to choose life if she knows that she is not in a position to parent.
  • Pray for miracles! Pray for new treatments and for a cure to PBD and other illnesses/diseases. Pray for the doctors, therapists, teachers, and parents who are dedicated to helping children be as healthy and happy as possible, giving them every opportunity to reach their fullest potential.
  • Pray that Ethan will continue to grow and develop, stay healthy and happy, and that we will be able to be the parents that he needs and that we will continue to seek the Lord's help because we can't do this without Him.

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