The education

My first post of 2015! I had such a blissfully relaxing Christmas break & birthday but now I’m in that early January bummed out stage. No better cure than jumping in and getting back to normal.
I never take my kids to doctors appointments. Honestly, I rarely even bring Jason with me! But, I had a checkup the day after Christmas & we’d already spent so many consecutive days together, it seemed natural the whole family would stay together. So we did! It felt like we had just sat down when I overheard a conversation between mother & daughter next to me. In fairness, they were talking before I sat down & I’m speculating about the specific details but here’s what I heard. The girl, who looked to be in her late 20’s seemed to be around 20 weeks pregnant & was sitting with what I assumed was her mother. They were going over a folder of information. It appeared that the folder contained some test results & the mother was explaining what the results meant. The mother was pretty animated & speaking a bit loudly so it was hard not to hear they were talking about Down syndrome. Of all the days for David to be with me! The snippets that I was picking up included, “Down syndrome, not for sure, amnio & results.” In fairness, none of those are negative words so I shouldn’t have been immediately on guard, but of course I was, especially with my precious son 10 feet from them. Jason & I kept exchanging looks and finally I said, “I’m going to say something to them.” I walked over and said, “Hi! I just wanted to let you know, we had a prenatal diagnosis in this office of Down syndrome with my son over there and I’m happy to talk with you about it if you have any questions.” The girl was very kind and said, “Thank you, this is all very overwhelming.” Her mother, was a little less kind. She immediately started preaching to me about the current research, how only an amnio is 100% but that it causes miscarriages and how blood work isn’t accurate. I was flustered because a) I wasn’t expecting that kind of reaction b) I’m not as educated as I want to be on prenatal genetic testing beyond my own experience and c) she wasn’t kindly asking me questions and trying to get first hand information. She was aggressive and her words had a negative tone. I felt like she was trying to educate me! I explained that we had received a positive diagnosis through my 12 week blood work – big mistake!! She was quick to remind me that there are no positive or negative results for the early genetic tests that are out there. She’s right; there are higher or lower probabilities. But, because these tests are under increasing fire and there’s been some new studies completely debunking their accuracy at all, it seemed she was using those as her touchstone. She kept telling me, “They’re only 40% accurate.” (Seriously, she said it 4 times) The only thing I could respond with was, “Well, it was 100% correct for us.” Again, the pregnant woman was kind & kept telling me how cute David was while her mother asked me if I’d had an amnio and additional follow up questions. I was kicking myself because I was trying to be calm and an advocate for my son and instead I was flustered and stumbling for words. I did have the presence of mind to tell both women that my OB’s office handled our diagnosis wonderfully. The mother almost tried to argue with me about that! She insinuated that the doctors were pressuring her daughter to get the amnio or terminate. I can’t speak for their experience or for every doctor in the practice, but ours was as positive an experience as we could’ve hoped for.
I’m no stranger to the shock and grief that comes with a prenatal diagnosis. And I’m an advocate that everyone should feel and react however they need to. But this experience in the office left me uncomfortable. I felt so bad for the pregnant woman who was being, it appeared, negatively impacted by emotional information. The ironic part is my OB’s office has my business cards in their lobby since I work with clients and their reproductive mental health. My business cards were literally within grabbing distance! Why didn’t I offer to have her contact me? Why didn’t I refer her to the Rocky Mountain Down syndrome Association? Why didn’t I tell her about the Down syndrome Diagnosis Network?
I want to be the calm, bold, knowledgeable mother that makes Down syndrome seems less scary. I want to be a quiet advocate for David. I want our experience to reassure people & not be reduced to stutters if I’m confronted.
Here’s to hoping all three of us women leaned something in the office that day.
Here are great sources of information & education:
http://www.rmdsa.org
http://www.dsdiagnosisnetwork.org

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Try, try again

There are a million things that can go through ones mind when you get a positive pregnancy test. For many people, it’s excitement. For some, it’s dread and denial. For a select population, it’s fear. Fear is honestly such a normal part of pregnancy but I’m going to speak specifically to the population of women that only experience fear.
For any woman who has had a traumatic pregnancy event, fear is practically the only emotion experienced when seeing a positive pregnancy test. After a miscarriage or still birth or infertility diagnosis, the rose-colored glasses are off. Gone are the days of running excitedly out of the bathroom to show your partner the little stick. Excitedly calling parents & best friends are a memory if they ever existed at all. You are filled with a fearful hope and begin preparing yourself for the inevitable loss rather than get swept away in dreams of the future.
There’s another group of us that fall into a similar category – Moms who are pregnant after a special needs diagnosis. We’ve seen the “other side”. We’ve gotten the call or sat in a somber room. We’ve met with professionals & heard the statistics. And regardless of how blessed we feel to have our “special” kiddos, there’s a fear that rests in the back of your heart. At every appointment and visit, we’re waiting for the other shoe to drop. We’re waiting for a similar yet completely different diagnosis. Cleft lip? Missing limbs? What surprise issue will this new little one have? It can be scary to even hope for “typical”.
I was chatting with a fellow therapist recently about my current pregnancy. I was quick to dismiss my feelings of anxiety & fear but she stopped me. She reminded me that my pregnancy with David was traumatic and I don’t need to minimize it. I love my son & wouldn’t change him for the world but that doesn’t mean I didn’t experience heartbreak during my pregnancy with him. It definitely doesn’t mean that I’ve accepted anything that comes my way & by default this latest pregnancy has been blissful and calm. Quite the opposite! I look back on my youthful naivety when I was pregnancy with Ella and almost laugh. In comparison, this pregnancy has been quiet. That’s the best way to describe it. We’ve been reserved, haven’t made any major announcements or even told everyone we know. We kept it to ourselves & didn’t even tell our parents until the end of the first trimester and our blood work testing for all Trisomies had come back negative.
It’s been a journey. It’s been emotional. It’s been a process. Every day we get a little closer to calm & blissful. We are more than delighted to be surprised blessed again & know we’re lucky. But I don’t want to minimize the journey. I don’t want to put on a brave face and be inauthentic. I think that’s detrimental to other moms. It’s ok to be scared. It’s ok to feel overwhelmed. Pregnancy doesn’t have to look like a TV commercial. It can be messy with lots of tears. There is no shame in taking each day for what it is and trying again the next day. This is our journey and we get to determine what it looks like, tears, fears & all.

A Day in the Life

I knew it would happen.  That day when I realized, “This isn’t bad”, “I can’t believe I was afraid of this” and “Oh my gosh, I’m so happy David has Down syndrome.”  That’s right, I’m happy about his diagnosis.  He truly is the sweetest, happiest baby I’ve ever been around and he brings us so much joy.  His smile lights up the room and my heart melts when he giggles.  He couldn’t be any better and I wouldn’t ask for him to be any different.  He is cuddly and precious and having Down syndrome just makes him that much more awesome.  To any parent who has received a prenatal diagnosis or a surprise birth diagnosis, it will come.  The joy, the happiness, the overwhelming gratefulness that this little person is about to change your life.  We feel blessed to be ingrained in this little boy’s life.

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One year

It’s a little strange to include a reflective post on my month of love series. But, today has great significance, especially on my journey to great love. One year ago today we received confirmation of David’s Down syndrome diagnosis. I will never forget the last Valentine’s Day I had before we received our news. I was in my first trimester, still nauseous and barely able to stay awake for a movie after dinner. The next day I recognized the number on my phone when the doctor called. I pulled into the Starbucks parking lot where I was given the blow of a lifetime. You can read the rest of my story here
What a difference a year makes! I was so happy to snuggle with my sweet Valentine David yesterday. I only wish someone would’ve had a picture of his adorable face, infectious smile and chubby cheeks when I received my diagnosis a year ago. It has been absolutely nothing like I expected. I am thrilled that it has been so much better and so much more. He has never been plagued by the heart problems that often accompany Down syndrome. So today I am grateful for his perfect heart and the heart in him that is teaching me what it means to be perfect.

The love of words

When I was little, I used to sneak books to the dinner table.  On Friday nights, I would stay up late reading in bed.  I would read literally anywhere and everywhere I could.  It’s safe to say I’ve always been a book nerd.  Thankfully, that love of reading and books hasn’t changed as I’ve gotten older.  I still love to read and am fortunate to be surrounded by fellow book lovers.  My husband is a beautiful writer and my mom just published her first book!  As I write this blog, I know I am an amateur among true talent and I’m grateful those around me only inspire me to read more and fall more in love with books.  Here are a few of my recent favorites:

1. How to Pray the Lord’s Prayer And really mean it! by Lauralee Holsing – my beautiful mother wrote an equally beautiful account of the most meaningful prayer in the Bible.  (Shameless plug: Buy it on Amazon here)

2. Bittersweet by Shauna Niequist – what a comfort this book was to me in the second half of last year.  I highlighted and dog-eared almost every page to refer back to.  Bonus, she’s a fellow Westmont College alum!  Go Warriors!

3. Bloom by Kelle Hampton – this was the first book I read after our prenatal diagnosis.  I cried at page one.  This book gave me hope and reading it showed me a silver lining.

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The sibling

This weekend Jason and I were discussing where we were a year ago.  Right after Ella’s 2nd birthday, my doctor called to let us know he had some concerns about my egg quality and reserve.  He highly encouraged us to make an appointment with Colorado Center for Reproductive Medicine.  I’ll never forget getting off the phone and bursting into tears at the thought of Ella being an only child.  Jason and I had thought we’d wait until the fall to start trying, but after that news, we decided to focus on baby #2 right away.  We both agreed it was important for us to add to our family.  If we had known then what we know now, would we have felt the same way?  If someone had asked us, “Your choices are: Ella as an only child or a sibling with special needs” what would we have picked?  We have discussed it and truthfully, we would have picked this.  Although we know very little about Down syndrome and the life our son will have, we both agree, it’s important for us to expand our family.  Whether this was our ‘plan’ or not, it’s our reality and we know, truly we are blessed.

The silver linings

My Dr. has asked that I start coming in for twice weekly non-stress tests (NST).  I had one this week on Tuesday morning and, barring all complications it should take about 20 minutes.  I expected to be out of the office around 10:00 am.  I was hooked up to the monitors, took out my book and relaxed.  Periodically, the nurse came in to check on me and at one point she said, “Are you feeling those contractions?”  I wasn’t feeling anything and I told her.  She checked back a couple more times and each time said, “Seriously, you’re not feeling anything?”  I wasn’t trying to be tough, I truly wasn’t feeling any discomfort (beyond the ‘normal’ discomfort of pregnancy).  She took my scan to my Dr. for review and he came in and told me they were sending me to the hospital for some continued monitoring.  I initially wasn’t very nervous about it because I had had a few NST’s with Ella and had been monitored in the hospital once before she was born.  I drove to the hospital and called Jason to let him know that I was contracting every 2 minutes but not to be concerned.  I’m only 33 weeks and I knew that David wasn’t making his appearance that day.

When I got to the hospital, they again hooked me up to the monitor and began asking routine questions.  The nurses were all very nice and they were joking with me as they watched my contractions on the monitor.  They couldn’t believe I still wasn’t feeling anything!  The Dr. came in with 3 nurses a little after 12:00 and that’s when I began to get nervous.  The presence of multiple hospital staff made me anxious.  He decided to send me over to get an ultrasound.  Unfortunately for me, the ultrasound tech had no bedside manner.  She very quickly took 4 pictures and then printed out 2 profile pictures that she handed to me.  She asked me where my fluid levels had been at my last u/s.  I told her I’d remained steady at 28cc’s for the last month.  She told me she was measuring 40cc’s.  My immediate thought was, “I want a second opinion!”  It seemed unreal to me that I would go from 28cc’s to 40cc’s in 4 days.  I decided to ask the Dr. for a second opinion when he came in, but unfortunately, she never left the room and I felt uncomfortable asking in front of her.  The Dr. reviewed her pictures and the measurements and told me based on the new, higher levels and the fact that I was contracting, he wanted to do an amniotic reduction.  An amniotic reduction is an amniocentesis where they stick a very long needle into my belly, into my uterus and extract fluid.  I had known since we received our “double bubble” diagnosis that this was an option, but since my fluid had remained steady and I was so far along, I thought maybe I was one of the lucky ones who could avoid it.  I am very torn about this procedure because 1) it carries with it a risk of miscarriage and 2) it sounds incredibly painful, unnatural and just plain ridiculous BUT I also knew that removing excess fluid would relieve pressure and I’d feel much more comfortable.  Within 5 minutes he explained to me why it was time I did it, asked me to sign the papers authorizing the procedure and began preparing the room.  I was completely taken aback and began shaking and crying.  Everything seemed to be happening so fast!  I wanted to ask if it had to be done right then or if I could wait for Jason so he could hold my hand, but I was completely flustered and couldn’t ask rational questions.  I was still holding the profile pictures the ultrasound tech had printed for me which at that point seemed so silly and superfluous.  I finally managed to ask, “Can someone take these pictures please?” because my hands were shaking too badly to hold them.  I also had the presence of mind to ask to not see the needle and to have a nurse come hold my hand.  They swabbed by belly with the orange/black fluid that they do when prepping for a C-section and after that I couldn’t look any more.  I just lay on the table while they injected me with something to numb the area and then inserted the long needle (I have no idea how long, I couldn’t look!)  The whole procedure took about 20 minutes and they extracted 2500ml of fluid.  It wasn’t painful, but I felt a lot of pressure and tugging and it was Very uncomfortable.

As soon as they were finished, I began cramping.  I think it was a combination of my muscles reacting to the injection, my uterus not tolerating a needle in its environment and the fluid finally being low enough that I could feel the contractions.  They took me back to my room and put me on the monitor again and this time I could feel the contractions.  They gave me a shot to try and stop them.  When that didn’t work, they gave me a pill.  When THAT didn’t work they gave me a shot again.  Finally, at about 4:00 I stopped contracting.  They monitored me until about 5:00 and then gave me a prescription for muscle relaxers to stop my uterus from contracting and finally sent me home.  It was an incredibly long, intense, unexpected day.  Probably the second worst day of this pregnancy after the day we received the diagnosis.  There were however, a few silver linings:

  1. I hated my outfit on Tuesday.  I did not feel cute and felt like a fat, pregnant blob.  Fortunately, I was not out in public and only the nurses had to see me 🙂
  2. While they were extracting fluid, they took some to send to the lab.  An amniocentesis is 100% accurate for detecting Down syndrome.  We got the call today that our original diagnosis of Down syndrome is correct.  This may seem like an odd silver lining, but there was always part of me that thought ‘what if?’ and I was worried about carrying some of that hope into the delivery room.  Now I know for sure and can be completely prepared for birth and moving forward with our diagnosis.
  3. Removing 2500ml of fluid feels great!  I’m still a little sore from the procedure, but overall, I can breathe and bend and don’t feel nearly as ‘full’ as I did before.

Stay tuned for the last 4-6 weeks before our little guys appearance!

The rollercoaster

DISCLAIMER: I reserve the right to take back everything I said in this post and do a complete 180 once David is born.  In fact, I hope that I can eat my words!

Today I am in a ranting mood.  I want to process hopes vs. reality and the disappointments that come with both.  There are so many things that I am disappointed and fearful about.  I am jealous when I see other pregnant women.  It’s ridiculous because I’m STILL pregnant, I shouldn’t be jealous!  But I assume they are having a ‘normal’ pregnancy and expecting a ‘typical’ baby and I envy their carefree experience.  I’m jealous when I see facebook posts about new babies and pictures of newborns.  I feel as though I’ve been robbed of that excitement and I wonder if I’m going to want to post pictures or rave about my son.  Having a 2nd baby was something I really wanted and was focused on for months before we conceived.  It was my ‘plan’ to enjoy it and become consumed with the baby and the pregnancy in a way I don’t feel I did in my first pregnancy.  But, the morning sickness completely took over in the first trimester and the stress of having an active toddler and feeling stuck inside by the constant snow and cold weather (it snowed on May 1st here in Denver!) led to me falling into a depression.  At the start of the 2nd trimester we received our positive diagnosis, so just when I should have been feeling physically better, I began to feel emotionally worse.

I get irritated when I read about moms who had a ‘large’ nuchal thickness and then received negative results on their Down syndrome test.  (Nuchal thickness is the measurement of soft tissue thickness at the babies neck taken between 11 and 13 weeks and a ‘thick’ measurement can be a soft marker for Down syndrome)  Many of them had a nuchal fold of 6 or 7 mm.  ‘Normal’ is anything from 2 – 3 mm.  Ours was 3.2mm!  Not really cause for concern in my opinion but then we still ended up with a positive diagnosis based on blood work.  It doesn’t seem ‘fair’ that women who had double or triple the results that I did get to go home with typical babies and I am left dealing with this new reality.

I am angry that there are no celebrities or well known people that have children with Down syndrome.  I am looking for positive role models on this journey (not that celebrities are positive role models) but I’d like to be able to look up to a few with-it, put together moms who are handling Down syndrome with grace, class and maybe even cute shoes.  Statistically, there HAVE to have been a few celebrities who have received a Down syndrome diagnosis, but since I don’t know of any who have Down syndrome children, it leads me to believe they have chosen to terminate.  This makes me angry because it adds to the stigma that only ‘perfect’ babies should be born.

I feel guilty that I’m not enjoying being pregnant.  This will most likely be the last time I am pregnant and I feel I should be relishing all of the things that I will likely never experience again.  I should feel giddy when he kicks and ecstatic that people treat me delicately.  I should enjoy eating whatever I want and having people tell me how cute my belly is.  I’m experiencing a lot of ‘shoulds’ during this pregnancy.  Trying to manage reality with expectations has turned this pregnancy into something I wasn’t mentally prepared for.

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.