A letter to a Special Mother...

#honorYourStory

#sacredbeginnings

#sacredPregnancy

#sacredbeginningsSacredNeeds

"... this certainly brings back all the memories of what we went thru with B. 

The joy when the ultrasound tech told me that I was having a boy and then the total devastation when the doctor called us back in to tell us that B. had a cleft lip and likely a bunch of other problems leading her to believe that he had Trisomy 18.  I had never heard of Trisomy 18 at the time and my husband and I spent the time in the waiting room googling what exactly it was (and crying, mostly crying). Waiting to find out the results of the amnio test was an excruciating time and I don't think I stopped crying once in the days while we waited. I researched all the symptoms they saw on the ultrasound and became more and more upset the more I learned. 

Our preliminary amnio FISH results came back negative for Trisomy 18 and after meeting with several specialists and doing many more ultrasounds and two MRIs we decided to go forward with the pregnancy and hope for the best despite being told repeatedly that they couldn't rule out any other syndromes...

It was a hard decision made with lots of doubt and apprehension, but ultimately one I am very glad we made. 

I found that the doctors at the "regular" hospital were always filled with doom and gloom about B.'s condition, while the doctors at the Children's Hospital were always filled with HOPE and POSITIVE words. Most OB doctors are only familiar with normal, healthy babies so they panic when they come across one that isn't and then pass that panic on to their patients.  Doctors who specialize in dealing with children who have health problems deal with issues like cleft lip/palate and heart problems on a daily basis and have a much better outlook on things.

I would absolutely recommend a woman in this situation to see some specialists at a Children's Hospital who will likely have a very different perspective than the doctors she already met with. It's good to hear both sides.

The decision to keep or terminate a pregnancy is never an easy one, but even more difficult when you go so far down the path of preparing for a baby. Despite the fact that we decided to continue with the pregnancy I had to mourn for the baby that I was not going to have.

I was not going to have a baby like everyone else I knew and I was still sad about that even while I was happy about the baby we were going to have. 

You need to know that it is okay to be sad and mourn for the "perfect" baby that you thought you were going to have. I felt guilty about that for a long time and only recently have come to realize that the loss I felt was very justified and real.

My story ended up being very happy as B. is perfectly healthy and almost a year later has completed all of his surgeries and shows no signs of any other symptoms or syndromes.  However, my husband and I had to prepare ourselves for any outcome.  Before we decided to go on with the pregnancy we had to decide if we would be able to care for a child that might have any of the syndromes that they said were possible.  Ultimately we decided that we did have the ability (emotionally, financially, support system in place, etc.) to care for a child with additional needs, but that is definitely not something that we decided easily.

You are not alone.

I know what a difficult moment you are living and I am here if you wish to talk.

With Love,"

~ Kristina

#holdingSacredSpace

#sacredLIVINGmovement