Tangible Truth Talk:
It was very early, about 4 or 5 AM when the pains started feeling like this was the day.
I walked them off, paced, and writhed a bit on the bed before waking my husband Michael. He knew from the other 9 deliveries that when I said it was time, I wasn’t fooling around.
He called the midwife.
He asked what I needed him to do, and he woke the children.
“Mom’s going to have the baby this morning. You guys better go downstairs.”
As I had been in all the other deliveries, I was now…kind of excited, scared, and hoping that I was equal to this task.
The children bounded downstairs. The last thing they wanted to hear was Mom in pain.
The midwife arrived.
I was fully dilated.
I stood by our bed and Serah was born.
Her Daddy caught her. She was big. 10 pounds 2 ounces.
It was an easy delivery. It was my first home birth.
After nine others I had decided that I wanted to give this last child the best beginning…at home. We named her Serah…SERAH…which means song of the morning.
Directly after Serah made her appearance, the children came up to greet her. One by one they “ooed” and “ahhed” and touched the cord, which we had left on for a short time. They described it as shiny and purple, and beautiful.
Serah was quiet, peaceful, and frighteningly floppy. In the bath, she was almost too laid back. When she came out and I looked into her eyes, they had an almond shape that the other children did not have. I remarked to Mike….I think she has Down Syndrome. He replied. Nonsense, she’s just chubby. The midwife didn’t comment.
But I knew.
I knew that this child was special from the moment that I found out about this pregnancy. I had the feeling/ or intuition if you will, there was something very special about her. Throughout the whole pregnancy I knew that she was handpicked. You see, I had given up ever having another child. And I was fine with that. Four years before, Elizabeth had been born, and then I had two miscarriages. It was all good. I was transitioning into another life stage and I was excited about it.
And then I was pregnant again.
When Mike and I first married I told him that I wanted a child with Down Syndrome. My mother, who died when I was 18, had worked with special needs children and I was her helper. In the only picture I have of her she is holding a Hummel called ‘The Heavenly Protector”, and she is surrounded by children with Down Syndrome. My husband’s response to my desire was shocking. He stated that if there was anything that he could not bear it was having a child with Down Syndrome.
And so at the moment of Serah’s birth I received my heart’s desire and my husband faced his greatest fear.
We kept Serah at home for a week and then brought her to a pediatrician to check her heart and to receive an “official” diagnosis.
It was frightening.
The doctor handed us a very thick book filled with every possible chromosomal abnormality with pictures and he stated, that “apes are more human than this child.” He admitted us into the hospital for tests and the diagnosis was confirmed.
Serah had Down Syndrome.
I was upset with the doctor. I was unnerved by his reaction to her. And I had feelings of guilt. Should I have had a hospital birth? Had I done anything that would jeopardize her safety and growth? But she was fine. And she had had the best opportunity to bond with me during that first week.
While we were at the hospital, our children were receiving visitor after visitor, with their unique ways of wishing us well. Some were incredibly supportive, comforting the children. Others asked them things like, what did your parents do to bring on this curse? Who prayed for your mother during the pregnancy?
In those first few days the lives of my children were inextricably changed. Each of them faced fears, anger, disappointment in people…and they found within themselves a wellspring of love and loyalty toward their little sister.
They have never been the same.
Our life has never been the same.
Serah did a work in each of us that no one else could do. There was a depth, a sensitivity, an appreciation that came over the family, along with a fierce commitment to this helpless little person.
After five days Mike and I arrived home with Serah. The children were anxious with questions.
“Was she retarded?”, one of the children asked.
Another child got visibly upset and angry when that word was spoken. They recounted their experiences with our so-called friends. They were angry. They were sad. Although they loved their little sister they had concerns and they had emotions that they needed to process.
So did I.
It was difficult to express to the children confidence because I had none. I had no idea what she would be able to do…She couldn’t even nurse. Would she: Talk? Walk? Read? Communicate?
It was a foreign land we had been sent to. And none of us knew the language.
We would learn it little by little, and we would appreciate things that we never gave a thought to. But this journey would not be easy.
I will never forget the day that we came home from our five day stay in the hospital. It had been overcast and rainy. Our oldest daughter had made dinner and we ate at our big table in the kitchen in Eureka Springs. I stepped outside onto the deck to get some air, and across the sky was a complete double rainbow stretching from one end to the other over the hills across our property.
I had a sense of complete peace.
This was God’s hand.
This was a child of promise. It was Serah’s rainbow.
I have since wondered if I will ever open a gallery or shop by that name where she can work and meet people.
I know that God gave me that rainbow to strengthen me and to give me hope that He was in control.
This is Serah’s birth story.
I am sure that each of you who has a special child has a similar story, even if it isn’t specifically about Down Syndrome.
There was a moment in time when you knew. You knew that this child was different than others. And all at once your heart was both full and broken. All at once a deep fear of the unknown gripped your soul, and you wondered if this was real or a dream, you wondered what would become of this child, what would become of you…and then because your love outweighed your fear, you moved forward standing by your child’s side.
I often say that motherhood is equally the most joyful and the most painful experience of life. Having a special needs child magnifies this in so many ways.
As mothers of special children we live daily with a question.
Nothing is normal and nothing is taken for granted. In the beginning we wonder about things like walking, talking, communication, toilet training…Then we graduate to social skills, school etiquette, learning, reading, writing, riding a bike, swimming, playing with others…
Then there are the teen years , Which I am experiencing right now. What about boys? The opposite sex? A career path? A place to live? Companions? It never stops. It is a constant question and a continual step by step process.
Unlike with a typical child, this process never ends. Down Syndrome will always be there.
We are in it for life.
I’d like to share a poem with you written by a Mother of a child with special needs, about her own experience.
WELCOME TO HOLLAND
Emily Perl Kingsley.
Copyright 1987 by Emily Perl Kingsley.
All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Serah’s early intervention teacher shared this poem with me when she was tiny. I love it.
Several things stand out.
First, this new parenting land that we are in is different. We really don’t know what its like. And as Moms of special children we are forced to educate ourselves. Most of us gather and read every book we can find about our child’s disorder. That’s what I did on Down Syndrome.
The doctors don’t tell us much.
We are really in many ways on our own to learn what to expect and what to do. And because our world is so rapidly changing each year there is more and more to learn about any given disorder. We become specialists in our child’s special need. And usually no one realizes how much knowledge we have and the wisdom we have to go with it. Special needs Moms are some of the most brilliant people I know.
Secondly, this new world is slower paced. Nothing comes easily or quickly. And if we allow ourselves to look at others and their children we can so easily be tempted to compare, and realize just how slow things really are. When Serah went to Kindergarten I had home schooled her the previous year and she was reading. She was the first child in her class to read aloud. At show-and-tell the first time, Serah read a book.
Her teacher cried.
That may have been the only time in her life where she did anything before her peers.
It always hits me when I walk into school. I look at the neuro-typical kids, and I feel like I’ve been slapped in the face. Serah is nothing like them in so many ways. That’s where I need to back up, and refuse to compare. Brene Brown says that comparison will rob us of our joy. That is so true. I have even found myself comparing my daughter to other children with Down Syndrome. Is she smarter? More capable? Surely she is doing better than so and so…Why is it so important to be affirmed in this way? It is the fruit of comparison. With our special children, we can’t do it. They are who they are. And isn’t this a lesson for us as well. We can’t compare ourselves to our peers either. We are who we are. That’s one of those incredible lessons that we Moms learn when we face every day with a child who is different. We need to be OK with slow. We need to be OK with different.
This new land is less flashy also. That may mean that our hopes and dreams for our child may have to be radically different than they might have been. Instead of prom queen, we are happy that she can go to prom. Instead of valedictorian, we are happy that she can work at the hospital and follow directions. But as Moms there is always a bit of unsettled business with this acceptance. We do not want to settle for less than our child’s best. But we don’t know what gauge to use to measure. So, again, we are living with the big question mark. And we balance the tightrope of acceptance and challenge daily.
And it’s exhausting.
And most of our peers have no clue what our life is like.
Oh, they respect us.
They pity us.
They love and accept our children.
But they do not know our daily struggle. They don’t realize that many of us aren’t free to attend that Bible Study, or cook that meal, or call them regularly because we have demands on our time and emotions that never stop. They can never realize the anxiety or embarrassment we feel in public at times, or the feeling of frustration when we realize that our child has no friends.
The burden falls on us. It’s hard.
Advocating for educational help, social help, inclusion are not easy tasks. We live in a world where inclusion is not a given. And we Moms are often on high alert to defend and advocate for our children.
So how do we cope? How do we make sense of the life that we have been gifted? How do we make it through those days?
My greatest comfort has been the knowledge that God is truly in control. Sometimes I imagine myself leaning back into His everlasting arms and giving in and accepting my lot.
This has been true in parenting in general for me. If I believe nothing else, I believe that God has me. And He’s got this. He is big enough and creative enough to make order out of my chaos. That’s my foundational “go-to” when my life gets overwhelmed.
Then there are people who love and support me through loving and supporting Serah…
It started with an early intervention specialist who came to my home to work with Serah. I remember a day when she had one of those musical Fisher Price Xylophones and a mallet. Serah was 2 months old. She was grasping the mallet and played the instrument several times.
We were overjoyed.
This young woman was helping our daughter to communicate through music. What an encouragement to me. My support system expanded to speech therapists and occupational therapists and teachers. They became part of my life. As a home school mother, the concept of trusting others to help was foreign to me. But what a wealth of love and knowledge and help flooded into my life with Serah.
Now my system includes waiver workers, teachers, dance instructors, cheer coaches, tennis instructors, and youth leaders. So another key to coping is to let the helpers help. Know that we are not in this alone.
And then there’s family. And family is so complicated isn’t it?
With the birth and life of a special needs child there are family challenges as well. Often we are tempted to make the most helpless child the center of the family. We can be tempted to set aside the capable kiddos because the special child needs us more.
Although a special child often demands more time and attention because of the nature of their physical and mental needs, we cannot forget our typical children. They have been given a special life too! There are huge changes for them when they have a special needs sibling. They may be expected to do more at home and less outside the home. They may be jealous and then feel guilty for being jealous. They may feel too responsible to help, or not responsible enough. There are different reactions for different personalities.
As Moms we need to remember that ALL of our children have special needs.
We need to allow ourselves or give ourselves permission to spend time with our typical children. We need to lay down the guilt and hire a sitter, or ask a relative to babysit so that we can go to the Mall with our other child, or attend a function or game.
My rationale has been that I will be caring for my special child in one way or another for life, so I can afford to spend some time away from her with another child who will go and live away someday. It is also unfair to our special needs child to make them the center of the family. They are a child like any other, they just have a different way of being, learning, growing.
We need to strike that balance of meeting their needs and allowing ourselves to let go.
Another huge area of adjustment is our marriage.
I said before that my husband did not want a child with Down Syndrome. The rest of the story is that he has embraced and loved Serah as much as if not more than the other girls in our family.
It is also easier for him to treat her like a normal child than it is for me. I make more concessions for her. But our marriage has been challenged with the entry of a special child. There’s less time for each other due to her needs (especially when she was smaller).
There’s the fear of another pregnancy, which affects our sex lives.
There’s the reality that all you think about is that special child, maybe with Down Syndrome.
There’s the death of the empty nest.
You know, when you’ll do all sorts of cool stuff after the kids have gone. All of these things add up to a marriage that may grow dry or neglected. It’s so important that we tend our closest connection. For we as mothers our connection with our husbands is life giving. The exhaustion of caring for a special child with all of its stress can wear away at the marital bond.
So, again, we need to give ourselves permission to enjoy our spouses. We need to realize that the strength of the family is in the marriage. We need to carve out time.
For most of us time is nonexistent. So I propose that you carve out moments. Marriage is built on small moments of connection, not big trips to Hawaii. So, seize the moments that you do have. It may be a glance, holding a hand, laughing, teasing, and caring for the children together. Do not discount the moments because they are not hours. Take them and savor them. It’s the stuff of love that adds up to happiness and closeness.
Lastly, we cope through self-compassion.
I know that’s a foreign concept, especially to women. But it’s essential to self-care and coping.
Scripture says that we are to love one another as you would love yourselves. I think this means that we are meant to love ourselves. For some of us, this is something we can do.
We get our hair done, do our nails, buy nice clothes. Yes, we love ourselves.
My question is, are we self-compassionate and kind to ourselves?
Do we treat ourselves with the same empathy and kindness that we do our peers, our friends?
An exercise that I share with clients is very simple, and yet very difficult. I ask my clients to befriend themselves. I ask them to look in the mirror and tell themselves that “today I will be your friend. “
Think about that.
Instead of listening to ourselves tell ourselves about all of the things we did not do, the ways in which we failed or fell short, the mess we look like, the weight we need to lose and on and on…. We hear compassion. You look nice today. Good job on that laundry. Boy, you juggled that task well. What a good Mom!
As mothers of Down Syndrome and special children, we are worthy of love and belonging. We have nothing to be ashamed of.
I remember an incident in church when Serah , whose nose runs constantly, was snuffling. I looked over and the lady behind me handed her a tissue. I was immediately covered with what I call a shame storm. I was ashamed of myself, and Serah’s runny nose. I should have the perfect child here in church. Why didn’t I bring a tissue? Mother of the year!
But then I come to my senses.
God has handpicked me for an incredibly difficult and important task. He has asked me to love in a way that is so deep and so committed and so endless that it reflects His character to the world. That runny nose exemplifies my high calling.
All of you Mothers with special children: You have a high calling from God. It may be exemplified by tantrums, sensory issues, grunts, wheelchairs, incontinence, deafness, muteness, delays….runny noses…
Our children are worth love and belonging.
We are worth love and belonging.
We are equal to the task because He who has called us will fulfill His purpose in us.