Being a mother is hard. Being a mother to a child with a disability is extra hard.
93 million children suffer from physical and cognitive disabilities worldwide. When I see that number, I immediately think about the 93 million mothers who received news that the child they carried for nine months, bonded with and dreamed of raising, was going to be different than they imagined.
A special connection is formed for a mother as her child grows inside of her. From the moment the baby is conceived, she’s nourishing him according to God’s beautiful design. As her baby grows, tucked safely in her womb, she begins to imagine the child’s precious face, his first steps and first words. Every heartbeat and kick prepares the mother for a unique bond that can never be broken.
For the mother of a child with a significant disability, there was a moment of devastation when she was told that her child had an impairment of some kind. She grieved the loss of what she dreamed motherhood would be like and began to adapt her mind and heart to the new reality.
What never wavered, though, was the deep love she felt for her child. That was already solidified in her heart. And, because God is so amazing, that same deep love is in the heart of every mother of a child with a disability, whether she lives in the upper-class suburbs of America or in a hut in Haiti.
What isn’t always the same across the world is the resources and support available to her. Many regions lack the services needed to provide tailored support for families of children with disabilities. In developing countries, the cultural, spiritual and socio-economic environment in which the child lives exposes them to multiple risks, including poverty, malnutrition, or sexual abuse. Some of these precious children are disregarded or ignored entirely by society, abandoned or placed in institutional care. In some countries, they’re thought to be cursed and are left to die in the elements.
We can’t deny that the context of a child’s environment plays a significant role in the mother and child’s ability to thrive. Yet, in my many years working with mothers in Haiti, where a stigma and lack of resources is very real, it’s interesting how many commonalities I have seen between mothers of children with special needs in America and those in developing countries. There are disappointments, feelings of shame, and loneliness. Other shared emotions tend to be:
Devastation about the diagnosis: “My expectations and hopes for the future have to change.”
Feelings of isolation” “I don’t fit in with the moms of typical kids. No one understands.”
Feelings of loss: “I’ll never experience [insert milestone moment here] with my child.”
Worry: “I’m worried my child will be excluded or rejected.”
Feelings of inadequacy: “I don’t feel equipped for this.”
Marital strain: “We have nothing else to give.”
Guilt and shame: “I shouldn’t feel [all of the above].”
The emotion that outweighs them all, though? That deep, unconditional love that God placed inside of mothers.
My husband and I had the privilege of raising three wonderful children together, so I know that a father’s love for his children is powerful. I watched my own father love his children well, including my brother Johnny, who had Down syndrome. A man’s emotional connection to his children shouldn’t be discounted. I also believe, however, that God placed something special into the hearts of mothers that uniquely equips them to see their children as wonderfully and perfectly made, even when, by human standards, the child is imperfect. He also gave them an extra measure of fortitude to handle whatever comes their way.
I have seen this in the mothers we work with in Haiti, where we have established the Johnny’s Kids program – named after my brother – to provide extra care and support for children with disabilities. I have also seen this in Israel, where we have started a new Johnny’s Kids program near Jerusalem, where many mothers in this part of the world feel isolated and alone, like their child is the only one and their husbands blame them. We can’t wait to help them know that this is not true.
These mothers who have been called to love the often overlooked members of God’s family will tell you this—these precious children deserve to know their worth, live a fulfilling life and become all that God created them to be. They were fearfully and wonderfully made by the Creator of the world and He has placed a purpose inside of each of them.
Laurie Stallings Vanderpool is co-founder of LiveBeyond, a faith-based humanitarian organization bringing general medical care, mother and child health care, nutrition, clean water, education, and community development to people worldwide. LiveBeyond has worked in several countries, including Mozambique, Ghana, Honduras and now Israel. In 2012, LiveBeyond established a base in the Thomazeau region of Haiti, with a compound that consists of a guesthouse, a surgical hospital, a demonstration farm, a church, and a school. For more information, see www.livebeyond.org.
Photo Credit: ©evgenyatamanenko
Laurie Vanderpool is cofounder of LiveBeyond, a faith-based humanitarian organization bringing medical and maternal healthcare, clean water, education, community development and the gospel of Jesus Christ to the oppressed in Thomazeau, Haiti. LiveBeyond’s work continues there despite the current upheaval in Haiti, offering a place of safety and refuge outside the turmoil in Port-au-Prince.