Saturday, October 25, 2014

The Value of a Life

Some readers may have seen my post on Facebook from a few days ago in which I mention a heart-wrenching article I read on-line. I felt the pull to write a more specific response. In this article a 69 year old woman who has an adult son with Down syndrome makes the shocking admission that, though she loves her son, she wishes every day that she'd aborted him. She and her husband's first child was healthy and thriving, but upon the arrival of their second son, she was devastated. They have been caring for him ever since, and she grieves the "normal life" she feels was denied her. She talks about the many difficulties they have faced and her fears of what will happen to their son after their passing. She concludes by encouraging mothers who have a pre-natal diagnosis of Down syndrome to consider abortion and make the choice they feel is best for them.

My initial response after reading this article was anger and offense. How could a mother possibly say that about her child? Knowing the depth of love I have for my own son who has Down syndrome, I could not fathom her mindset. However, I soon felt convicted by the response of my heart toward her. Now, in case there is any room for question, let me make it crystal clear that I do NOT support abortion in any way. I have a strong conviction that every life is immensely valuable, PERIOD. With that said, I also want to say that this broken woman does not need criticism and anger; she needs healing and compassion.

Since reading the article I have been considering some of the challenges she faced early on, due to the time period in which her son was born. He came into the world at a time when people with Down syndrome were referred to as "mongoloids." (The very word makes me cringe inside.) The common advice from the medical professionals of the day was to place the child in an institution, move on, and save themselves from a life-time of grief. There were probably little to no support groups or early intervention services. A child with a disability was viewed as a stigma, not an individual to be cherished. There were no Buddy Walks, blogs or books to celebrate the value of a life with an extra chromosome. Though committed, her husband was not one to ever open up his emotions, so she may not have had an outlet to express her own. I'm sure she felt very alone. I found myself forgiving this woman, so embittered by a life of disappointment and praying that God would sweep into her life with His love and His healing.

Since reading the article I have also been reflecting on how much I have to be thankful for in our own journey with Benjamin. While this is by no means a comprehensive list, I would like to share many of my reasons for gratitude...

I am thankful for the loving care our son received in the NICU immediately following his birth. Though the characteristics of Down syndrome were apparent from the start, he was treated with the same dignity, respect, and quality of care as every other child.

I am thankful for the social services in place at the hospital. In the midst of shock and confusion, compassionate caseworkers helped get us set up for continuing medical care and early intervention services.

I am thankful for the Down Syndrome Support Group of Tulsa. They had provided area hospitals with binders to give to new parents full of information about Down syndrome, personal pictures and stories, and multiple support resources. This was a life-line for us. Attending their meetings and events over the next few years continued to bring us much encouragement.

I am thankful for the Ronald McDonald House and the Hospitality House which provided us with affordable lodging, meals and prayer support (the latter two from the Hospitality House) during our son's hospital stays.

I am thankful for the loving support of family and friends. Through the gift of internet, our story was making it's way across the nation, and we literally had people praying for us coast to coast. Friends and family visited us as the hospital, hugged us, prayed for us, took care of things at our house when we weren't able to, brought us meals after our homecoming, gave financial support...and the list goes on. Most importantly, they welcomed our infant son with open arms. They continue to love and support our family through each stage of our journey.

I am thankful for the many medical advances that have been made in the last few decades and the loving medical professionals who have graced our lives. Benjamin received a life-saving heart surgery that would not have previously been possible by an extraordinarily talented and compassionate surgeon who had created the very surgery he performed. We will forever be grateful for Dr. Hisashi Nikaidoh and his surgical team. We have been blessed with quality medical care to overcome several other hurdles as well.

I am thankful for the Sooner Start early intervention in-home services we received during Benjamin's first three years. We received so much valuable insight into how to help our son work toward developmental milestones, and I received emotional support as well.

I am thankful for the gifted therapists who have worked with Benjamin along the way, helping him to reach his milestones and celebrating with us. They have not only invested their skill; they have invested their hearts.

I am thankful for the quality pre-school programs Benjamin has been a part of. He has the opportunity to interact with typically-developing peers while still receiving the one-on-one assistance he needs, and he has thrived in these environments. Every one who has worked with him has shown him love and respect.

I am thankful for the books and blogs that have been written about having a child with Down syndrome that offer hope and encouragement to other families. Knowing how valuable others' stories have been for me since Benjamin's birth gave me the inspiration to add my own voice to the mix through this blog and my recently published book.

I am thankful for a loving husband who is an intentional father. We have shared our hearts openly since day one of this journey, supporting one another and truly partnering together. It is my delight to watch Benjamin and now Joelle blossom under the love and affection of their daddy.

I am thankful for my mother, who now lives so close by and is heavily invested in my children's lives. I am also thankful for my husband's family in MN who communicate love and support from across the miles.

I am thankful for the daily smiles, hugs and laughter I receive from my beautiful son. His unhindered and unashamed expressions of affection and joy light up my life! He has taught me so much about the unconditional love of God.

I am thankful for the ability to celebrate the little things, and rejoice in the progress Benjamin makes, even when it's slow. I am so proud of him!

More than anything, I am thankful for the love of Jesus in my heart and my life:
He is the Source of joy in the midst of pain.
He is the One who has brought deep healing and pulled me out of grief and disappointment.
He is the One who has worked miracles in Benjamin's life.
He is the One who has convinced me of the immense value of a life, because He is the Author of life and cherishes each one.
He is the One who teaches me that life isn't about pursuing and demanding my own happiness, but about finding fulfillment in Him and living to express His love to others. Serving my son is an amazing opportunity to do this very thing. "...Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me," (Matthew 25:40, NIV).
He is the One who gives me eternal perspective. There is so much more than this present life, but how I live this life determines my eternal destiny. Benjamin already has an amazing ability to connect with heaven, and I know that his eternal destiny is complete wholeness. In this life, though, there is much that can be gleaned from his simplicity. I am a teacher in his life, but he is also very much a teacher in mine!
Jesus is the One who empowers me to live a life of thanksgiving and praise, and I have so very much to be thankful for!

Saturday, October 11, 2014

My Little Boy

An acrostic poem and picture journey...

Mommy's miracle!
Years of promise ahead

Loving and loveable
Testimony of the Lord
Lots of laughter

Big Brother
Yes, I can!




I love you so much, Benjamin, and I am so proud of who you are! You have an amazing destiny, and I am thrilled to be a part of it!

Sunday, October 5, 2014

A Voice for the Helpless

I believe I first heard about Reece's Rainbow, a Down Syndrome Adoption Grant Foundation, in 2010 when we attended our very first Buddy Walk. My heart was immediately gripped. As I share a bit of their history and vision, you will understand why.

Reece's Rainbow was founded by a Christian mom named Andrea Roberts whose first born child Reece has Down syndrome. During the first few years of her son's life, the Lord gripped her heart for the plight of orphans with Down syndrome and other special needs around the world who are left to languish in poorly run orphanages and mental institutions. Many of these children are never even given the opportunity to be adopted. With a lack of nurture, early intervention, and medical treatment, several of these children do not progress in their development and many ultimately die. Andrea had the strong conviction that she could not sit back and do nothing. Thus Reece's Rainbow took flight, raising awareness and adoption funds and advocating for these precious children hidden away from the eyes of the world. Proverbs 31:8-9 became a motto for the ministry: Speak up for those who cannot speak for themselves...defend the rights of the needy. Their mission statement is: "to advocate and find families for orphans with Down syndrome and other special needs by raising funds for adoption grants and promoting awareness through an online community, media communications and other events." There are many families willing to adopt these vulnerable children, but overseas adoption costs are very high, averaging about $25,000 for each child. However, with a faithful group of volunteers, prayer warriors, and generous donors, in only 8 years time 1500+ children with Down syndrome and other special needs have been placed with their "forever families" through this ministry!

The more I've learned more about the devastating realities of life for orphans with Down syndrome and other special needs around the world, the more my heart has been broken. I have watched my own sweet son blossom in an atmosphere of love as he has received the necessary early intervention to assist with his development. He has been given nurture, praise, and affection every step of the way. He has received life-saving medical procedures that are now allowing him to thrive. In fact, without the repairs made to his heart as an infant, he would not have lived to see his first birthday. Today he is a happy, active five year old! Yet thousands of children around the world are not given the same opportunities, and many lives and destinies have been cut short as a result.
Over these last four years, it has been a joy and a privilege for our family to find ways to support Reece's Rainbow. I was inspired for Benjamin's second birthday to think outside the box to this end. When we sent out invitations for our little guy's party, we requested that instead of bringing a gift for our son, friends would bring a donation for this ministry to orphans. After enjoying cake and watching our diaper clad son cover himself with chocolate frosting, we all gathered in our living room and watched a DVD about Reece's Rainbow. We then took time to pray together for this ministry and for our sweet birthday boy. It was such a special day! (And yes, unless anyone was concerned, Benjamin still received gifts from family and a few friends!)
We have also participated in their Christmas Angel Tree fundraisers by sponsoring a specific child and helping to raise funds for his/her adoption. The personalized Christmas ornament we received for each sponsored child reminded us to pray, and we were able to rejoice upon hearing that these precious ones had come home to their "forever families!" I would encourage everyone to get involved this Christmas!
Has your heart been gripped yet? I hope so. October is National Down Syndrome Awareness Month. In honor of this I have decided to donate all book royalties earned from Reflections from Holland: A New Mother's Journey with Down Syndrome to Reece's Rainbow for the entire month. You can follow the link to my book at the top of this blog to order a copy from Do you already have a copy? Please consider giving a copy to a friend who you think would be encouraged by our story or donate a copy to a local support group. Many have lending libraries and enjoy receiving new materials. I also encourage you to visit and learn more about this remarkable ministry and how you can be a part of placing children who were once unloved with a loving family. Let's invest in this ministry that is so near to the heart of Jesus! Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world, (James 1:27).