The celebration

The benefit to receiving a prenatal diagnosis is that we have been able to grieve privately, process in our own way and educate ourselves at our own pace.  I can’t imagine what it must be like to be given a birth diagnosis and have to deal with all the emotions immediately in the hospital.  We’ve had 18 weeks and potentially another 8 to start planning for our little man and prepare not just for Down syndrome, but to focus on our little guy first and foremost as our son.  As our fear subsides, we have been focusing on the joy of a new baby. (We prayed for this baby, and however he arrives, God answered our prayer. 1 Samuel 1:27-28)  We want the mood in the delivery room to be a celebration!  We want the weeks leading up to his arrival to be happy and even though the few hours and days after his birth will be scary, we want to be surrounded by happiness and excitement.

This has all been made easier by the constant support and excitement from our family and friends.  This last weekend, David was ‘sprinkled’ with love by some dear friends.  Here are some pictures of our fabulous day:

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The beauty

Today I wanted to repost a letter that was passed on to me last week.  As I’ve mentioned numerous times in this blog, some days are good and some days are bad.  This letter brought me to tears and reminded me that my little guy will be a blessing in our lives, not a curse.  I’m sure I will need to read it often.  I can honestly say I get excited to meet him after reading words like this from other moms further along in their journey.  These are NOT my words (I want to give credit where credit is due) but I just had to share.

Dear mom who just received a prenatal Down syndrome diagnosis,

I know how you feel.

Except — unlike you, I was holding my new baby, Kate, in my arms when I found out. She was wrapped in a blanket, looking up at me as I cried, listening to the neonatologist on staff tell me — only minutes after she was born — that she had Down syndrome. And what that meant.

He said that it meant she had an extra chromosome. And that she would have learning delays. He said that it meant she was significantly predisposed to certain medical conditions, including congenital heart defects — and that we should get her heart tested right away. He said that it meant she had low muscle tone and may not be able to breastfeed. He said that it meant she would do things on a different schedule from other kids’.

And in those first few days, after hearing those statistics, talking to doctors, and researching online, I thought I knew what it “meant” to have a child with Down syndrome. And quite frankly, I was devastated.

And so it is with you.

But let me tell you — from one mother to another — those facts are not what it means to have a child with Down syndrome.

Many of those facts may not even apply to you. Some might, but many might not. I’ve learned this with all of my children. And I never allow generalizations to set my expectations. (For the record, Kate breastfed like a champ and continues to break stereotypes.)

What those facts didn’t tell me about Kate is that — along with almond eyes and slightly lower muscle tone — she would also have my thick, blond hair and full lips. That she’s a Daddy’s girl. That she loves peanut butter waffles and rocking her baby doll to sleep. They didn’t tell me that she’s a nurturing big sister, a doting little sister — and the star in the room wherever we go.

Those facts didn’t tell me that she would make funny faces and dance like crazy to Fresh Beat Band. That she loves to sing. And swim. And go to gymnastics. And unload all of my kitchen cabinets.

What those facts didn’t tell me in all that they “meant” is what she would mean — to me, to our family, to our friends.

I look back on those first days, and I remember the feeling of craving normality. I didn’t want to hear how life would be forever altered in some big way and that I would just learn to accept it. I just wanted life to be the way it was before — routine, “normal.”

Will things ever be normal again? I thought.

And then one day — soon — they were. Except they weren’t like before. They were better.

Suddenly, the overwhelming facts and fears faded. Because instead of knowing a diagnosis, I grew to know her.

And so it will be with you.

Because of her life, I have the unique perspective of seeing the best in the human spirit — and not just in her spirit (though she’s quite spirited!), but in everyone else.

In a world where it’s easy to view strangers through skeptic eyes, I have seen an outpouring of love and compassion surrounding her. I have connected to those I wouldn’t have otherwise. I have had strangers stop me on the street — just to tell me how beautiful she is. The world can seem like a scary place for any child, especially those with a disability. But I have met so many who just want to love her.

I cannot tell you what challenges your precious one might have — just as I cannot tell you what challenges anybody’s child will have, “special needs” or not. One aspect of your child’s life just happens to be detectable by prenatal medical technology. But prenatal testing cannot tell you who your child will be, any more than a fuzzy, black-and-white sonogram can tell you how your child will look.

When Kate was just a few months old, I went to Target to pick up some groceries. In line that day, I met the mom of a 19-year-old man with Down syndrome. And when I shared that my daughter also had Down syndrome, her eyes softened, and she held my gaze with a warm smile.

It was as if we were both part of a secret sorority and she was an old pledge member. She asked me a few questions and, before leaving, softly said the words that I’ll pass on to you here:

“Welcome to your beautiful journey.”

From my heart to yours,

Lauren

By Lauren Warner

Editor’s Note: This article was first published at Sipping Lemonade on June 12, 2013, and is reprinted here with permission.

Taken from http://liveactionnews.org/dear-mom-with-a-prenatal-down-syndrome-diagnosis/

The birth plan

This week I’ve been reflecting on the differences between my two pregnancies.  My pregnancy with Ella was easy and uneventful and I just assumed that was normal.  I had decided early on that I wanted a natural, unmedicated birth and even though many people told me I could never do it and I’d be begging for an epidural, I tuned them out and moved forward with my plan.  I took classes, read Hypnobirthing the Mongan Method (a must read for women in general), talked to my doctors and made a birth plan.  I was determined and felt empowered to make my own decisions about the birth.  Everything went according to ‘plan’ and Ella was born without any outside interventions.

When we received our Down syndrome diagnosis, I immediately went into passive-listener mode.  I know nothing about Down syndrome so I have fallen in line with everything the doctors have told me.  I began focusing my attention on the Down syndrome and viewed the birth as an afterthought.  Then, we received our duodenal atresia (“double bubble”) diagnosis and my birth plan took an even further backseat.  I stopped reading any birthing books, stopped planning for an unmedicated birth, I haven’t done any prenatal yoga; nothing I did the first time around.  My fear of the unknown has turned me into a participant instead of a leader, which is strange because I knew nothing about pregnancy and birth the first time around and I was still willing to fight for what I wanted.

I’ve been empowered this week to take back a little control.  Jason and I will only get 5-30 minutes with David after he is born before he is taken to the NICU to be prepped for surgery.  The pregnancy and his birth are the last moments I have with him where it’s just him and I and we get to decide what happens (well, he gets to decide more than me).  I may not have any control over his diagnosis or his surgery, but I can still plan for his arrival.  We have 10 weeks or less until he comes.  I am determined to use this time to focus on his arrival and make it the experience we both need.

The details

I don’t have much to report on today’s blog.  This week has been more about the pregnancy than about Down syndrome.  I had a doctors appointment on Monday and my fluid had only slightly increased.  The Dr. was very encouraged and said if things remain this way, they’d let me go to 38 weeks or longer!  Obviously, the bigger and stronger David is, the better equipped he is for surgery, so I’d prefer to keep him in for as long as possible.  But the benefits of having him come earlier would be: my mom would know exactly when to come stay with us, David could be born on his grandpa’s birthday, Jason wouldn’t have to get a sub for the first days of school and we would know for sure which Dr. was performing David’s stomach surgery.  Finally, I’m a huge advocate for separation of special days & times.  It stems from my birthday being smack in the middle of Christmas and New Year’s and I often felt I got lost in the shuffle.  I’d prefer David be born as far away from Ella’s July 15th birthday as possible.  I told my mom last week, “I already have a July baby, I want an August (or even a September) baby.”

Another thing that I’ve been working through this week is having contact with older children and adults with Down syndrome.  I’m not ready to jump into the ‘real world’ of Down syndrome yet.  A few local families have offered to have us come meet their adolescent children with Down syndrome, but that scares me.  It makes it too real.  Just like being a first time parent, seeing a teenager didn’t get me excited about being a parent, seeing other babies did.  I’m on an online board where women who have received a prenatal diagnosis of Down syndrome share their thoughts.  There are a few women on the board who have older children and share their stories to encourage us and support us.  It’s wonderful!  But, seeing pictures or hearing updates of their older children sometimes intimidates me.  A fourth grader with Down syndrome is so much more daunting and overwhelming to me than a little baby with Down syndrome.  In my mind, the early days and months with David will be just like with Ella.  He’ll sleep, eat, poop and repeat.  I am not prepared for the therapy and IEP’s and school integration and health challenges and major life decisions that will come when he’s older.  That scares me.  I need to wade in slowly.  These are new waters for me and I can begin to feel as though I’m drowning.