If you've been reading here for long I'm sure you know I'm a huge fan of Babycenter.com, and especially their online community of other moms. One of the best resources for me, as a new mom parenting a baby with special needs, has been the Down syndrome boards there. There are young moms and older moms, seasoned veteran moms and newbies, and we all have one thing in common: our love for our kids.
Looking back, I wish I would have gone on the Down syndrome pregnancy boards when I was pregnant with Lily. Truthfully, I avoided that board like the plague. I've read that the first stage of grief is denial, and for many months during my pregnancy I really didn't want to believe Lily might have Down syndrome. We had so many markers turn up, it seems crazy to me now that we didn't know...but without an amnio our concerns were just that, with no concrete evidence of Ds.
So maybe part of my avoidance of that group was really just a bit of denial...I remember feeling that if I ventured over there it might make everything more real. The other part was feeling what my husband always felt- we'll cross that bridge when we come to it. We knew that we would love whoever God gave us, but until Lily was placed in my arms, I didn't know how strong and unconditional that love would be.
I just looked back at my oldest post on the Down syndrome board on Babycenter...it was dated May 28th, 2010; so apparently it took me quite awhile after Lily's birth to venture onto that board as well :)
One of the first people to welcome me there a year ago was Missy Skavlem. After spending just a few days on the boards I realized I had tapped into a wonderful resource, and that if Missy didn't know the answer to something, she would know where to find it.
I've been wanting to feature Missy here for awhile- she's been pretty busy putting together one of the most comprehensive resources for pregnant moms of babies with Down syndrome there is, so I'm thrilled that she took some time from her busy schedule to guest blog for me today. I hope you'll leave her a lot of sweet comments after you read her post- she puts her heart and life into what she does, and it shows.
Guest blogger Missy Skavlem, who blogs at http://yomammamamma.blogspot.com/
Supporting Down Syndrome Pregnancy
For the last two plus years, I have been a "Group Owner" (essentially a moderator) over on the Baby Center Down Syndrome Pregnancy Board. Basically, the board is for women who are either given a positive prenatal screen for Down syndrome (like I was), have markers for Down syndrome or have a child who will be born with Down syndrome as confirmed by and Amnio or CVS test. All of the women who are on the board have decided to proceed with their pregnancies. Statistics show that between 85-95% of women with a positive diagnosis of Down syndrome terminate their pregnancies. This board is for the ones who make the decision to bring their babies into the world.
It has been a wonderful two years, and I've learned a lot - probably learned more than what I'm able to share, in many ways.
First, almost every woman who learns that they may have a child with Down syndrome is struck with the most horrible fear they have ever felt, or ever imagined feeling. I think this happens for a number of reasons. I think we are hardwired that as a mother, having something that you perceive to be "wrong" with your child, you blame yourself. You have a feeling of fear, guilt, sadness, fear, uncertainly, self doubt, fear, anguish, terror, misery, and a desire to flee the situation.
Most of us also come face to face with a prejudice we never imagined that we had. And then we have some shame for ourselves, and hate the part of our self that could on some base level reject the child that most of us so wanted to have - just because they have Down syndrome. So then we have to deal emotionally with that raw feeling of self loathing for that prejudice.
There is also the intense concern over medical issues, the ones they know, and the ones they don't. Kids with Down syndrome have many more heart issues, and learning your child has one is overwhelming. The fear of putting a child through a (or several) surgeries is one that is perfectly reasonable. These moms learn so much on the board in terms of what this aspect of parenting will bring for them. The good news is that most children with Down syndrome do very very well with heart surgery. In fact, the medical community has learned many things that have extended the life span of our kids.
They fear for their marriage, they fear for their other children, they fear for themselves. They fear they can’t parent a child with “special needs.”
While many of the moms are dealing with all of the various intense emotions I described above, many are dealing with a mix of people- some who also put additional doubts in their minds, others who support and raise up the mother's spirits. The doctors some of the women have to deal with are horrible - they are prejudice, ill-informed, have their own agenda and do so much emotional harm to the women they deal with. Others have perinatologists and OB's who are incredibly supportive and experienced in delivering a diagnosis respectfully. Some family members and friends also know how to say exactly the wrong thing to a mother expecting a baby with Down syndrome. Others find a wonderful way to show support for the gift the new child will be to the family. And finally there are husbands who are sad, and confused, or rocks of strength who never show any self doubt.
Top all of that off with the cherry that is being completely hormonal due to pregnancy, and PHEW, it is an emotional situation.
That's why I admire the women who find their way to our little corner of the world. They know themselves. They may be total wrecks, and full of fear and doubt. But they are brave. They are BRAVE. And they seek out the truth. And understanding.
We talk with them. We help them calm down. We tell them that they should try to be kind to themselves. We explain to them that the worst part of being a parent of a child with Down syndrome is the learning about it part. The parenting the child part is easy. The loving the child is easy. The therapy, the doctors appointments are generally, other than certain times - are manageable. We help them with strategies to address the words from doctors, friends, family and spouses that aren't supportive - people who may have outdated visions of what parenting a child with Down syndrome is like. We tell them that no one knows what any child will be like, or what challenges they will have. We let them know they will still have a nice life, they will still go on vacation, they will have tea parties, and dance, and laugh, and play, and go out to dinner, and read, and be on the computer, and watch movies, and be normal, normal, normal.
Missy's daughter, Violette
And, yes, as a parent your life will be extraordinary too because of this extra chromosome. You will meet (wonderful) people you didn't know, you will learn things you didn't know, you will go places you wouldn't have, you will have your eyes open to ignorance and prejudice, and you will fight it. You'll have an extraordinary journey that you wouldn't trade for anything.
It is so hard when moms get that diagnosis not to scream "YAY!! Good for you! You will learn that this life is a good one and this child is going to be so good for you! You are so lucky lucky lucky to be joining our club." Instead, we give them a virtual hug, let them ask questions, give them support to feel the things they are feeling, and work through their emotions. We know they will get to the other side, where we are. I've seen so many moms go from being a total wreck to being totally in love.
Six months ago Down Syndrome Pregnancy, Inc. was launched. Nancy Iannone had recognized that when a mother learned she was having a baby with Down syndrome during her pregnancy, there was no complete resource directed to her particular issues. So Nancy, along with Stephanie Meredith wrote Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome, which is available to download at no charge at www.downsyndromepregnancy.org. Over 250 pregnant mothers have downloaded the book (with beautiful photographs from Connie Wenk and Kelle Hampton.) The book was carefully reviewed by experts from Boston Children’s Hospital, Children’s Hospital of Philadelphia, and Cincinnati Children’s Hospital and more. The feedback from the mothers who have downloaded it has been very positive. In addition, the blog portion of the website has nearly 70 posts that supplement the information in the book, with over 320 comments from parents of children with Down syndrome directed to the pregnant moms.
The group is not affiliated with any religious group, nor does it have any specific political point of view. People of all beliefs and viewpoints find themselves pregnant with a child with Down syndrome. We are there to support all of them who are welcoming a baby with Down syndrome into the world. The website, blog, book and support message board all work to support and enhance the efforts of all of the wonderful national and regional organizations in the Down Syndrome Community.
I wish we didn't need to have the organization, the book and board. Really, I do. I wish everyone could hear the words “Your baby has Down syndrome” and jump for joy, instead of this sadness. It is personally rewarding for me to be there, at times emotionally exhausting (there are times I feel like I'm reliving my initial emotions, and that can be hard), but so needed and I get so much out of doing it. These brave women need a shoulder to lean on, and they need someone who has been there, done that.
Our little corner of the world isn't a place many women of childbearing years want to end up. But once they find themselves there, I'm glad that little safe haven is in place for them and the beautiful, silly, smart, fun, happy little people who are going to be coming into their lives.
Down Syndrome Pregnancy, Inc. is an official 501c3 charitable organization. To this point, everything that has been achieved by the group has been essentially due to the hard work of Nancy, Missy and the Board of the organization. The group has many plans to enhance and supplement the materials available now, including family and friends booklets, Spanish language translations, Dad's Booklets and more, many of which require financial support. Tax deductible donations can be made through the website. Also, with the new non-invasive blood test on the horizon that will determine if a baby has Down syndrome very early on in pregnancy, it is important that everyone in the Down syndrome community take a moment to review the action plan found here.
P.S. DON'T FORGET- Friday is the last day to enter our Three Little Angels Giveaway- don't miss your chance to win some fabulous prizes!