What do you do when you are pregnant and find out your baby has Down syndrome or that he or she may be born with another disability? What do you say to people who see you are pregnant and congratulate you and talk about how excited you must be – when actually you are still coming to terms with being told your baby will not be what you expected? I think every parent does and should handle this in his or her own way; here is how I came to accept and embrace the fact that our son had Down syndrome. Jennifer Crowson blogs regularly for DSRF. I’m tired of it. The saintly, June Cleaver-ish, I-simply-exist-to-service-my-children-and-husband ideal that I keep running into. There’s a religious version. And an organic-hippie version. And a sleek, modern-day tiger-mom version. And yes, even a special needs, therapy-is-our-life version. Their parenting may look very different from each other, but they are all entirely consumed by it. And it’s not just the women. They’re martyr parents. To follow Christie's blog click here.
The morning I found out our baby was going to have Down syndrome, my husband came home immediately from work. When he arrived, I was at the front door with my coat on saying, “We are going out”. I thought to myself if I am in public, I won’t cry. Although very sad, my strategy worked and I did not cry (yet). We went to our favorite local and familiar café. There we sat, speaking very little to one another – just eating our comfort foods. He gave me warm smiles and occasional winks, with his familiar reassuring look telling me everything was going to be okay. But was it going to be okay? I was not sure.
The next day, I went for a walk and passed a young woman with Down syndrome. She was smiling, walking alone, carrying her shopping and talking to herself. She looked happy, independent and safe in our small community. But there and then - I cried – did I ever cry. Was this the future for my child, and if so was this a bad thing?
As a parent, you want your children to grow up, be healthy, and live strong, happy and independent lives. The little knowledge I had of Down syndrome suggested this was not going to be the reality for my son. As I continued my walk and gathered my emotions, I concluded that I must find a way to have those same hopes and dreams for my unborn son that I had for his older brothers – but with the best understanding possible of what Down syndrome will mean for him and our family. I did not try to fool myself in thinking this would be easy, but I knew I needed to find the strength to come to that place of acceptance.
The hospital put me in touch with another parent who was happy to speak with parents who had just received a diagnosis. I was nervous about calling her, as I questioned my ability to speak with another mother without becoming overly emotional. I felt raw and vulnerable, but I knew I would find it helpful and I made the call. She was immediately warm and friendly, and invited me to her home to meet her son and hear her story. When I walked in her front door I was greeted by her generous smile, and one of the most beautiful little boys I have ever seen. She beamed with pride over his many accomplishments in his first two years, but was honest with me about the emotional roller coaster she and her partner had been on and the challenges they had faced. It was an emotional visit, but I left her home feeling uplifted and inspired.
I then turned to books and the Internet to help me understand more about Down syndrome. Some sites were helpful, while others were not. I learned quickly which ones to avoid, and the ones that kept drawing me back. I found reading books and blogs written by other parents of children with Down syndrome most valuable. They helped me to see that despite some inevitable challenges, and some possible health concerns, raising a child with Down syndrome could also be enriching and life changing.
As I came to accept my new reality, I needed people to know our child had Down syndrome. I did not want people to see him when he was born and wonder if there was something ‘different’ about him. I told family and friends immediately, all of whom were very supportive. When people asked how things were going with the pregnancy, I told them. One person was quick to tell me that “they sometimes get it wrong” and the baby may be just fine. I assured her my baby did in fact have Down syndrome and this was okay. Some people were shocked by how candid I was, but most had only positive things to say about my raw honesty.
Every parent needs to figure this one out for themselves. Learning your baby is not going to be what you expected hurts. You grieve what you think you have lost or what might have been. You are fearful of what the future holds for your child and your family. You worry about their health, you worry other children will bully them; you worry if they will ever be able to live independently – this list could go on. In my case, I experienced all those worries and I still do – but through reading books and blogs, speaking to other parents, becoming friends with other parents, joining the Down syndrome community, and leaning on my family and friends, I have come to peace with it.
I came to embrace the fact that our son would have Down syndrome and prepared myself for how this would change my world in so many new and wonderful ways.
In this day and age, parenting is the last bastion of acceptable nobility. We no longer expect to lay down our freedom, our identity, our dreams… our lives on the altar of marriage, or country, or vocation. But when Jr. Me arrives on the scene, we’re prepared to gift wrap all of the above. And pat ourselves on the back for doing it.
Don’t get me wrong, I’m a big fan of selflessness. It’s something our culture could use more of. It’s something I could use more of. But good parenting is about a lot more than sacrifice.
To clarify, I’m talking to good parents here. Not the pseudo-adolescents who barely show up, much less engage their offspring. Nor the workaholic yuppie with a trophy child they stash away until family photo day rolls around.
The rest of us. Most of us. Regular folks who desperately love our kids and feel desperately overwhelmed and underqualified a lot of the time.
To compensate, we read more. We do more. We sleep less. We are the hardest-trying generation of parents who have ever lived.
And sometimes we forget that good parenting isn’t about giving more, it’s about being wise.
Life is a marathon, not a sprint. It’s a long haul. And we need to conserve our energy and recharge our batteries from time to time. That’s not selfish; that’s smart.
The Center-of-the-Universe is subpar housing. No one should live there. Certainly not an impressionable child. The most miserable adults began as children who believed they deserved what THEY wanted, when THEY wanted it, no matter the cost to others. It is good for children to wait, to pitch in, and to sacrifice for others, especially their parents. It builds this old fashioned thing called respect.
Kids grow up. Ouch. I know. And it happens so fast. Which makes you want to soak it in as much as you can (unless they’re really whiney; then you send them to visit the Grandparents). But someday when they need you a little less, or when they are grown and gone, your life will go on. If you have no life anymore, you are in for a shock. You are more than just a parent.
Life is happening now. Life can’t be put “on hold” until your busy child-rearing years are over. Although we are technically “adults,” we are still growing and learning and becoming. If we neglect ourselves we will be stunted phsyically, emotionally, relationally and spiritually. One of the worst mistakes a parent can make is to sacrifice the health of their marriage to the immediate needs of the shortest family members. In the end, everyone suffers for that.
Whatever stage in life you are at, whatever unique circumstances you find yourself in… find something that is your own. In those first few crazy weeks/months, that might be nothing more than a quick, hot shower. Take it. Own it. It’s good for you. And that’s good for them. A good parent has their own life.
The week our baby girl was diagnosed with Down syndrome, we met with the hospital social worker. She handed us stacks of brochures and articles and tax benefit forms. But the best thing she gave us (apart from heartfelt congratulations) was this advice:
“Don’t change your whole life for her; let her fit into yours.”
Down syndrome will always be a part of her life, but we don’t build her life around it. Down syndrome will always be a part of our lives, but we don’t build our family around it.
Nor do we build it around our son’s adoption or his special needs. Or our eldest daughter’s consuming passion for dance. Or our 10-year-old’s absolutely-essential, must-have-or-she’ll-never-be-happy-again, latest trend/toy/hobby/obsession. In our family, everyone gets to have a life.
A good parent gives selflessly and sacrifices and often puts their kids first, but NOT always. A good parent has hobbies and friendships and goals and needs. A good parent goes on dates and takes long hot baths and reads books and takes holidays. A good parent can say NO, and a good parent actually does.
So here’s me, and I’m my own person.
What do you do when you are pregnant and find out your baby has Down syndrome or that he or she may be born with another disability? What do you say to people who see you are pregnant and congratulate you and talk about how excited you must be – when actually you are still coming to terms with being told your baby will not be what you expected? I think every parent does and should handle this in his or her own way; here is how I came to accept and embrace the fact that our son had Down syndrome.
Jennifer Crowson blogs regularly for DSRF.
I’m tired of it. The saintly, June Cleaver-ish, I-simply-exist-to-service-my-children-and-husband ideal that I keep running into. There’s a religious version. And an organic-hippie version. And a sleek, modern-day tiger-mom version. And yes, even a special needs, therapy-is-our-life version. Their parenting may look very different from each other, but they are all entirely consumed by it. And it’s not just the women. They’re martyr parents.
To follow Christie's blog click here.