Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Thursday, September 27, 2012

The wait.... and the call

8 days can be a flash or an eternity.  For me, it was a mix of both, somehow.

Speaking for myself, I already knew the answer we would be getting.  There were several signs sent our way that week that may have seemed coincidental, however, I believe it was all there to confirm my thoughts so that we could continue on this journey.

The hardest part of this time was how to deal with it.  I am a talker.  My husband, thankfully, understands this and was fabulous, especially during this wait.  We didn't really want to share what was going on with anyone, but did tell a few people.  I didn't want people to worry.  I didn't want to have them drawn into this craziness until we knew for sure.  I didn't want looks of pity or sympathy, depending on the outcome.  This was our baby, either way, and we never considered otherwise.

I believe that everything happens for a reason as a part of God's plan.   This baby was ours and if God intended us to go down a different path, He would take care of it. Several people knew about the my ultrasound and what we were going through, many by happenstance. I am so blessed that I had genuine ears to listen and support us.

I did have a small number of conversations that I drew back from quickly.  They were the conversations that I expected more of.  Those more of sympathy and sadness about the potential diagnosis.  About God's will not being this for children, or anyone.  These are the conversations I had dreaded.

I was not proud of how I just listened to those speaking in this way.  I wish I had been strong enough to assert my beliefs.  I wish I had reminded them of the will I believe God has for us all.  I wish I had walked away.

In retrospect, I have learned a valuable lesson here.  I will stand up for my kids and beliefs and develop a much thicker skin.  I have worked to advocate for my kids, but with this upcoming diagnosis, that will be tested, I'm sure.  What a powerful way for Him to remind me through other "believers."  I have so much to learn!

I spent many sleepless nights that week.  I found support online through Down Syndrome Pregnancy and Birth Boards.  I searched and searched about absent nasal bones.  The more I looked, the more confident I felt that our little one would have "designer" genes as one mom put it.  

September 12, 2012  4:00pm
The call came.  Exactly 8 days after drawing blood.  The genetic counselor asked whether I wanted to talk about the results in person or on the phone.  I had a sense of calm as I verified my information so we could talk over the phone.  I knew what I was about to hear and prolonging the inevitable was not going to change anything.  She explained that the test results were indeed positive for Trisomy 21. That would indicate our baby has Down syndrome with 99% probability.  She explained about the test and what this would mean for our pregnancy and life.  She offered a meeting to go over things, so we set a time for the following week.

As I got off the phone, I breathed out a breath I didn't realize I had been holding. I dialed Brian at work and the tears began.  Although, this time, they were much more of relief and of contentment of knowing, rather than fear or worry.  I am sure Brian loved to have this conversation on the phone, but I could not hold the information in. I had to let it out and let it be real.

The next day (I think) we called our moms to let them know as they had been patiently waiting with us.  Their love and responses were so crucial in the process of acceptance.  They were with us.  This was their family too, and they were more ready to meet the new little arrival.

I honestly wasn't sure how to fill the other people in that knew.  Their prayers and thoughts that week truly gave me the strength and patience I needed.  I just couldn't bear the thought, just yet, of having the conversation over and over.  I drafted this note, Brian edited it :), and I sent it out with the subject: update.  

We found out this week that our new little bundle of joy will likely join our family and teach us about what an extra chromosome means.  

Although we are opting for no further testing, we believe that our newest little person does have a diagnosis for Down syndrome.  Since our initial markers came up, I have really felt that this is God’s plan for us.  And, even though I am worried about health complications that may arise in the future, I am reminded that each of our children has brought a new set of challenges and worries and I don’t believe that will ever stop as long as I am a parent.

Next week we will meet with additional doctors and create a care plan for the rest of the pregnancy and support beyond. I feel you were brought into this part of our story for a reason.
I didn’t share this with many people, but I am truly grateful for the support and prayers for patience and strength over the past weeks (I imagine those might still be needed in the years to come!).   I am so appreciative to be able to share this with others as the joy builds to the little one’s welcome at the end of the year.

One thing I am really looking forward to is seeing the love and acceptance from our kids on baby’s birthday.  Unless some medical concerns arise over the next weeks, we do not plan to really share this news.
Our biggest concern is that our own kids (one in particular who is like her mother :) would worry so much about the baby for the rest of the pregnancy, and really there is nothing to worry about.

Brian and I are so excited to meet this new little one (once he/she is full term, of course!) and learn so much more about love and life and we thank you for the continued prayers for baby’s health and support on this journey!  I can’t wait to meet that little one!

“Now faith is being sure of what we hope for and certain of what we do not see.” Hebrews 11:1

The responses and calls I received were overwhelming and I was so grateful for those that were brought into this journey to support us.  The ride is just beginning!

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