To the readers of my blog: I’m leading a book study and will be using this space to review each chapter. I will continue to post other topics here as always but about once a week for the next several weeks, a Chapter Review will appear. Please feel free to share it with any of your friends, but especially those who parent children with special needs or chronic illnesses. It will also give you a glimpse into my heart on our journey of parenting the children God has placed in our home and care.
DESPERATE – HOPE for the MOM Who Needs to Breathe
By: Sarah Mae & Sally Clarkson
Book Study: Introduction
Study Guided by Renée Parris
Geared to parents of special needs or chronically ill children
In following the format of the book, my thoughts will be put into the format of a letter to you, the reader. Any direct quote(s) from the book will be in italics. All other words are my gifts to you.
This book study can be applied to parents of all ages, personalities, and types of children. However, my main focus is to address the parents with special needs children. For the sake of simplification, I will address our special needs children as “specials” and our children without special needs as “normals.”
Here we go with an overview of the Introduction section of the book.
My dear friend,
Have you spent days wishing your child was healthy, cried more tears than oil drums could contain, questioned God about His justice, and mourned the loss of your dreams for a normal child? In other words, have you ever felt DESPERATE in your role as a mom to your medically, emotionally, behaviorally, or socially abnormal child?
Me too, many days!
In the introduction to the book it says, “The lifetime commitment that is motherhood will, many days, stretch you beyond what you think you can handle.” That feeling is true for moms of “normals” but if something can be truer than true, it certainly would be for moms of “specials.” It is a life of unprecedented territory and often a very lonely one as most of the people in our circle have no comprehension of what a “day in the life” looks like for us.
As we begin to study this great book on parenting, let me remind you that you are not alone on this journey. Through His wisdom, as He so often does, God has joined hearts and lives together and given us this community of moms who do understand this common path we travel. Just imagine that we moms of “specials” live on the same prairie parcel of land…we are homesteaders…traveling uncharted lands…pioneers searching for a better way…mariners crossing oceans to find new lands…adventurers determined to carve out a path for those who come behind. We are doing this together.
The devil would have you believe that you are alone as he did Sarah Mae. She says, “Pleas for help aimed at heaven seemed to be met with silence.” Another time she said, “I needed help, I so badly needed someone to call who could come and rescue me, just for one day.” Haven’t we all felt that way? Sometimes those feelings come many times a day.
We dream of being mommas. We long for a precious soul to hold and nurture and fill with the truth and wonder of who God is. Then reality slams full force into our dream and something we don’t even recognize emerges…an altered reality.
With the announcement that my baby was coming way too early at 27 weeks gestation, everything I thought I knew about motherhood was challenged and put to the test. In one moment, my ideas and dreams were shattered, altered, changed, and forever skewed. Oh, in my dreams, I was going to be the perfect parent. My little girl clothed in a white smocked dress would run through fields of daisies, dragging a rag doll, and filling the air with her long locks of blond hair. And my little boy would be a warrior running through the same hills that beckoned me as a child.
Fast forward to a reality check of having six pregnancies and not one time did I leave a hospital after delivering a baby with that baby in my arms. Six times I left with empty car seats, broken dreams, and disappointments. Three of our babies were miscarriages, one full term son died during delivery and is buried just a few miles from where this writing is taking place, and two babies spent time in the neonatal intensive care units with issues that put my faith to the test and brought months of grieving, adjusting, learning, accepting, and resigning myself to the realization that motherhood for me would be far different than in my dreams.
Do you ever wonder what your days would be like if your child didn’t have “issues”? May I tell you that you would still feel desperate and inadequate? Because this job of parenting isn’t for sissies as the old adage goes. Shaping, molding, and shepherding the heart and character of another human being are tough work regardless of the chemical and physical makeup of the person. So, for all parents, our only hope is to depend on God, trust our heart, and find other like-minded parents with whom we can share our dreams, disappointment, and daily dilemmas.
I’ve had so many moms share their desperation with me and here are some of the things I hear.
- That incessant rocking and high-pitched squeal is driving me crazy.
- I don’t like my child today.
- I just want to wake up one day and not have a doctor or therapy appointment.
- I’m tired of the experts telling me what my child needs.
- I want to discipline my child but I don’t know if I should since they are not normal.
- I just want my child to be pain free for one day.
- I wish they could communicate their needs to me in ways I could understand.
- I feel like my child is a prisoner in their own body.
- I’m mad at God because I don’t think He was fair with us.
- The meltdowns are more than I can handle today.
- Secretly, I’m jealous of my friends with normal kids.
- Sometimes I want to scream at parents of normal kids to be thankful for what they have.
- I just want one meal time without outbursts and eating issues.
- I have a constant ache in my heart over my child’s condition.
- I’m so afraid of the future for my child, what will happen to them when I’m gone?
Did you see a reflection of your thoughts in any of those statements? May I just tell you that if you did, you are completely normal? We all live there don’t we?
Sarah Mae says, “Feelings of desperation were like an ever-present shadow over the good in my life.”
Surviving the reality of our days caring for our “special” children, much less the “normal” ones and the hubby and the house can be so consuming that it is easy to lose sight of God’s overall plan for our family. We can get so muddled down in our reality that we forget to live in God’s reality which is a life of blessing and peace.
I love the quote Sarah Mae used about Sally when she said, “Sally gave me the courage to go home and be a willing participant in my life.” That, my friend, is what I wish to do for you. My desire is to be your cheerleader and remind you that in this game of life, you are a player and not a spectator. You can fulfill your role. You are fully equipped by God to parent the children He placed in your care. If you weren’t, He would not have given them to you.
So, as we embark on a chapter by chapter study of this book, please know that I am praying for you, that I understand the complexity of parenting “specials”, that I am also trying to balance parenting a “normal”, and that there are still many days when I feel desperate. Just because I am leading the study I am not pretending to be a parenting expert. Every day, I claim God’s grace because I know how desperate I feel and sometimes I even question whether He realized how frail I am when He gave me these children. Yet, I know His ways are perfect. So, I’m just one desperate momma trying to help other desperate mommas on this journey.
However long and daunting my path, I can say with complete peace that it has been the most incredible and rewarding journey because it was tailor made for me by the same God who formed me in my mother’s womb and who gives me the desires of my heart. You see, He knows me far better than I know myself. He knew that my heart and soul needed children who would be different: children who would require me to slow down and pay attention on purpose, children who would touch the world and show His grace, children who would love me unconditionally and heal my heart of past betrayals. Oh, how wise and wonderful are the ways of my heavenly Father. He gave me far more than I asked for. He gave me opportunity to learn more about Him, walk closer to Him, and snuggle up to His grace far more than I perhaps would have without my precious special needs mothering journey.
Bless you as you read the Introduction of the book. I’m looking forward to our next study: Chapter One.