The words

We have some AMAZING people in our life!  Friends and family have been supportive and kind and people that I didn’t think would care about our diagnosis have come out of the woodwork to offer support and resources.  I have no idea what I would say to a friend who received a diagnosis of Down syndrome before all this happened for us.  I know I would say a lot of dumb things.  I know I would want to be supportive and it probably wouldn’t come out right.  I know everyone wants the best for us and is saying what is on their hearts.  I have NO ill will toward anyone who has offered their support.  HOWEVER, here are some things I just can’t hear anymore:

“God chose you two to be this little guys parents”

“God only gives you what you can handle”

“God knew you two were the perfect parents for this baby”

I’m not quite sure why people immediately go to God cliches to handle big information.  I am a Christian and also believe God knows all, but I don’t believe He GAVE us this.  I don’t think He’s a magician and decided one day that Jason and I were strong enough and ‘good enough’ to handle this so He waved a magic wand and ‘gave’ us Down syndrome.  I think things happen.  Some good, some bad.  God knew this was our future, but He didn’t give it to us.

I am still working through what to pray for and what to accept as reality.  Prayer takes a lot of hope and I’m afraid if I start praying for healing that I will begin to hope that the Down syndrome will go away.  I don’t want to be disappointed at David’s birth.  I don’t want to cling to the idea that this may all be a mistake, just to have to grieve and mourn all over again in a few months.  I think I’m afraid to pray for healing because it would mean I don’t accept my son in any condition.  I’m afraid to hope and afraid to not accept my life circumstances.  I read this quote the other day.  I love it, I’m just not sure I can live it.

“Don’t just pray about what seems logical and possible.  Pray HARD about the “impossible”. God will show you that NOTHING nothing nothing is impossible with HIM.  Ever. Period. End of Story.”

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The three of us

This weekend we took our last vacation as a family three, and most likely our last vacation for awhile period.  Anyone who knows me, knows my heart and my dearest friends are in Orange County, CA and I try and visit as often as I can.  I love spending time with my girlfriends who have been my surrogate family for over a decade!  (I still think we look exactly like we did when we were 19 years old)  Now that we are all married with children, the dynamics of our time together have changed, but it’s richer now because a new generation of friendships are developing; our kids are becoming friends!  There are eight (soon to be nine) children between the four of us ranging in age from 6 1/2 to eight months.  We had such a fun time and I can honestly say it was relaxing.  Here are some pictures of our time:

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I know there will be plenty of visit’s to California in David’s future.  So for now, I relished this last time with just the three of us.  What a treat!

The plan

As any parent will tell you, children are born with their own personalities.  We can do our best to teach them right and wrong and guide them but they have their own ideas and plans.  Ella made us wait 11 days past her ‘due date’ to meet her and she has been just as stubborn ever since.

I’ve mentioned to friends and family that if this was my first child, I would be reacting MUCH differently to our diagnosis.  I had certain expectations of Ella even before I met her.  I had plans and dreams for her.  As she grows up, those change.  She has her own personality and her own dreams.  I am no more in control of who she is than I am of who David will be.  A silver lining for me is that no matter what I dreamed for my child, he was always going to be exactly who he is born to be.  Whether he has 46 or 47 chromosomes, his personality is unique to him and his diagnosis will be just a part of who he is.  The more we learn, the more we understand how out of control we really are.  And this is hard for a planner like me.

Some examples of how we are not in control:

1. We were first told our due date was August 20th.  Since Ella was so late, I decided to ‘plan’ for David to be late as well.  In my mind, I began thinking we’d have a Labor Day baby.

2. When we received our diagnosis, we were told the placenta also carried an extra chromosome, so the placenta may not work the way it’s supposed to the whole pregnancy.  If the placenta stops doing it’s job, the baby has to come out.  I started thinking he’d arrive closer to his due date after all.

3. At the end of April, we were told David has a ‘double bubble’.  Based on the excess amniotic fluid building up and his need for surgery, the doctor told me they’d likely induce around 37 weeks.  We started planning for an August 7th induction (the original David Oulman’s birthday)

4. I had an appointment this week and my amniotic fluid has continued to increase.  The doctor I met with told me he wasn’t sure they’d even let me go 37 weeks.  Another July baby?

I would love to know when our baby boy is coming. I would love to know how long he’ll be in the NICU after surgery.  I would love to know what life is going to be like with him.  But, this has been out of my hands since conception.  I’m learning to have patience, try and go with the flow and relinquish control.  I’ll let you know how that goes; just as soon as I finish setting up his room, planning Ella’s birthday and making the calendar and meal schedule for David’s arrival 🙂

The first

I love blogs with pictures.  I plan to fill this blog with pictures.  But right now, there’s not a lot of pictures to post.  Me getting my blood drawn?  Me talking on the phone to Rocky Mountain Down syndrome association about support?  Me reading countless blogs?  Not too exciting.  So, in an attempt to add some pep, I thought I’d focus this post on my firstborn.  The girl who made me a mother.

One of the things that has gotten me through some of the dark days of our diagnosis is the idea that Ella is going to be so blessed by her brother.  She won’t remember life without him.  Unlike me, who has had No experience with special needs, this will be her normal.  I cannot wait to see how they interact, how she loves him and how he changes her.

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The questions

The thoughts and questions that have gone through my mind as we’ve processed our new reality are not necessarily ones I’m proud of.  But, they are honest and they are part of coming to a place of acceptance (I hear).  I feel confident that I will be able to read some of these posts in future years and laugh at my fears and acknowledge that most of my questions were silly.  I have read countless stories from others and I know I will arrive at the happy, well-adjusted place they all have.

Some of the questions are silly and some are probably pretty normal:

Why me?  What did I do to ‘make’ this happen?  Were my eggs too old?  Did I conceive at a ‘bad’ time?

Are the results wrong? Did we receive a false positive?

Can we pray this away?  If we’re ‘faithful’ enough, will he be born healthy?

Will he go to college?  Will he get married?  Will he be happy and have a good life?

Will people make fun of him, or maybe more specifically, in what ways will people make fun of him?  Will I be strong enough and knowledgeable enough to stand up for him?

What kind of special therapy and education will he need?  How will we know where to find the best resources?  How will we pay for it?

I also am processing fears and anger:

Nothing in life has prepared me for this!  I’ve never worked with children or adults with Down syndrome.  I don’t feel as though I have a ‘heart’ for special needs.  I don’t know anyone with Down syndrome.  I’m not ready for life to change.

I feel like I’m being forced to join a club I didn’t ask to join.  I’ve explained it to some friends this way:  Four years ago Jason and I got a dog.  I did not grow up with dogs, I’ve never considered myself a ‘dog person’.  I never grew up dreaming about the day I could finally get my own dog.  But, I love our little pooch.  I think he is so cute and sweet.  He’s the best dog I could ask for.  This does not mean that I like other dogs.  This does not mean I am a ‘dog person’.  I really don’t like any dogs but my own.  When I take him to the dog park, people assume I am a dog person and let their big, slobbery, 100 lb. dogs  jump on me and drool all over me (Colorado is the land of black & yellow labs and golden retrievers).  I feel this same way about our new status as special needs parents.  I’m not afraid I won’t love my son.  I know I will.  But I just want to stay in my bubble with my own little family.  I’m not ready to be a ‘special’ family.

The journey

The day after we received our diagnosis, I joined the group “Down syndrome pregnancy” on BabyCenter.  Here is the first post I wrote.  I’m hoping to document as we process and move toward a healthy and happy place:

(excuse the typos and slang. it was written in a state of grief and i was writing furiously & desperate for information. plus some will be repetitive of my first blog post “the big news”)

Disclaimer: I am a highly emotional AND logical person (it’s a combination that leaves my husband confused a lot!)  I react quickly and emotionally and make grand plans but after a few days/weeks of praying and thinking I usually come to a more rational, logical conclusion.  When we first received our diagnosis, I thought we’d have no choice but to move home where family could step in where I felt inadequate.  After learning more and being so uplifted by friends here, we have decided Not to move home.  But, in my initial distress, I didn’t see any other option.

Hello ladies,

I am a 33 yr old mother to a spirited, active 2 1/2 yr old girl.  We are 13 weeks pg with baby #2.  At our 12 wk ultrasound, the tech said our baby’s neck looked thick.  She measured a few times and always came back with a 3.2mm measurement.  My Dr. ordered a finger prick blood work as well as blood work to send to the lab.  I got a call yesterday and our Dr. consulted with the high risk OBGYN first, but the both concur that it’s 99.9% that our baby has DS.  He didn’t give us a 1:anything chance, just said 99.9%.  We had already decided we would not terminate regardless of the results of the blood work.  Since we are planning to continue with the pregnancy, he suggested not doing an amnio or CVS because of the miscarriage risk.  His suggestion was to move forward planning and preparing for a baby with DS.  At first I agreed, but my DH and I have been talking about it, and if our baby does have DS, we will most likely move back to our hometown.  Both of our parents live there as well as extended family and we feel as though we’ll need the extra support and we’re a little isolated where we live now.  So, based on the fact that the results would create numerous major life changes including quitting our jobs, selling our house, packing up our lives, we feel we’d like to have the 100% assurance of CVS or amnio.  Any thoughts?  We’ve very new to this and still processing.  We feel strong love for our child already regardless of the result, we just want to be the best equipped we can as we start this new chapter.  Thanks in advance for any advice, tips, thoughts and support.

The big news

On February 6th, 2013 I went to my ob for our 12 week ultrasound.  We LOVE our ob and had a wonderful experience with Ella.  The ultrasound tech and I were laughing and having a great time (seriously).  Toward the end of her scan she got a little quiet.  She told me that she noticed a thickness in baby’s neck.  She didn’t want me to be concerned yet, but she wanted me to be aware of what she saw and that my Dr. would probably want to do some follow up.  She warned me that a thicker NT (nuchal translucency) can be a sign of Down syndrome, but again assured me not to worry yet.  I started to cry and she and the nurse decided it would be better for me to wait in the doctors office instead of crying in the waiting room.  (great PR on their part!  who wants to walk into their ob’s office and see a grown woman sobbing in the waiting room?)

In the doctors office I immediately began googling ‘thick NT’.  Obviously not a good idea.  I got all kinds of conflicting information.  When the Dr. came in, he recommended blood work.   He also assured me that a thick NT is not a guarantee of Down syndrome and encouraged me not to panic yet.  I had my blood drawn and left the office, told I’d hear something within 7-10 business days

Jason and I talked over the next week and the more I researched on my own, the more I thought everything would be fine.  Our NT wasn’t even THAT thick comparatively (3.2).  I just had a feeling that the blood work would come back ‘strange’ and an amnio would be suggested but that in the long run everything would be fine.  Jason was a little more upset than I was, but I really told myself it was nothing and not to worry.

On February 15th (8 business days after my blood was drawn) my Dr. called.  He very kindly asked me if I knew why they had done the test and if I understood what the test was measuring.  When I answered ‘yes’ he proceeded to tell me that the test had come back 99.9% positive for Down syndrome.  He asked if I was thinking about terminating.  He said if yes, he would recommend an amniocentesis, but if I would continue with the pregnancy he suggested moving forward with the diagnosis without the added risk of further testing.  I feel I need to add here that there was no pressure from him whatsoever.  He was kind, supportive and compassionate.  I have read horror stories about ob’s that practically schedule the termination for the patients before they’ve even had a chance to process.  My ob was NOTHING like this.  I will be forever grateful for his tone and attitude as he delivered the news.  He’s amazing!

Insert random story here:  I had pulled into the Starbucks parking lot when my phone rang so I could concentrate on what the Dr. was saying.  In the car parked in front of me was what can only be described as a Cougar (dressed to the nines) and a middle aged, balding vertically challenged man.  As my Dr. was giving me the diagnosis and walking me through my options they began making out like two teenagers.  The whole visual added to the surreal-ness of the news I was receiving.  I guess I should thank them for making a very sad phone call almost secondary to what I was witnessing.  I’ll never be able to think about that day and our news without thinking of those two!

In all honesty, the remainder of the weekend is a blur.  Jason was coaching a soccer game so he didn’t get home until late.  My MIL was staying with us and we had decided to wait to tell her until we were together.  I felt like a huge, heavy dark cloud had settled over everything.  I couldn’t think about anything else, but I couldn’t talk about it either.  Jason finally got home and we sat my MIL down to tell her all we knew.  She was supportive but just talking about it made it seem more real and more painful.

All weekend I researched, read and cried.  I kept thinking the test must be wrong and since it’s such a new test (MaterniT21 has been around since October 2012), I kept looking for articles and research of false positives.  I have NO experience with Down syndrome and couldn’t wrap my mind around the fact that this was my life, my new normal.

That was almost 3 months ago.  I can’t say that I’ve “come to terms” with the diagnosis, but I can say that I don’t cry everyday anymore (I still cry though).  We have been SO incredibly supported by friends and family and that support has been like a warm blanket.  It’s helped me to grieve and move to a new level.  Not quite acceptance, but a new place.  We are moving forward and preparing to meet our son and today that’s a pretty good place to be.