Battles against terminal illness, anxiety, and life!

Baltimore

Posting the recap of the week, is going to take me several days.  Please be patient.  🙂

Over one full week, five different doctors, two big cities, busses, taxis, airplane trips, and now we can say that it has been a very adventurous and informative week.  I learned a great deal about me, my parenting, what having a child with special needs means in reality, my limits, and more about A-T and what that means to my family and me. 

For weeks, I’ve debated in my head what is appropriate to share and what isn’t.  This is ultimately Braden’s story.  This is his life here in print for you to read and perhaps even learn from.  I’ve struggled to set invisible boundaries when determining what is and what isn’t off-limits in regards to his personal life.  I’ve come to a major conclusion.  I would be doing a major disservice if I didn’t fill you in on some pertinent details about our little man.

I promise to get to the results of our big trip to Baltimore in just a few minutes.  Ok, actually throughout the week, I’ll post more details.  First, I need to start with some back story.  Back in 2007, my husband and I decided that we wanted to pursue adoption.  We chose to go through social services, with the hope of finding a child that was meant to be ours.  We completed our home study, visits, filled out countless pages of paperwork, attended classes, and then waited.  We were very fortunate, because it was only five months after starting the process that we got the call. 

We were called and asked if we were interested in a “perfectly healthy five-week old little boy ready for adoption.”  I remember the phrase as if it were uttered yesterday.  The truth was that he wasn’t ready per se for adoption, rights still needed to be terminated.  However, he was an adoptive placement.  We learned quickly that our little man wasn’t perfectly healthy either.  He had some serious reflux.  He would spit up, aspirate, and then quit breathing multiple times per day.  You can only imagine how stressful and scary that was!  Regardless, we wouldn’t want any other child in the entire world.  He was and still is our miracle.

It took a long time before our adoption was finalized.  It wasn’t until September of 2008 when the papers were signed, and we felt like we could move on with our lives. After signing the adoption papers, we received Braden’s hospital medical records in the mail.  That is when we learned that he had been exposed to marijuana and Xanax.  Nobody had ever bothered to tell us this.  We felt frustrated that  significant details regarding his health were withheld from us.  We brought this up to our pediatrician, but at the time we weren’t really sure what to do with the information.  It was only recently, when we went back to social services with questions that they admitted that in their file they have record of Braden’s biological mother abusing crack/cocaine, marijuana, cigarettes, alcohol, and Xanax.  Although, they stated that Braden tested clean in the hospital, his biological mother admitted to using these substances and she tested positive.  To say we were beside ourselves would be an understatement.

It became clear to us that we weren’t just dealing with a little wobbliness and a speech delay.  We had some major things going on here.  After that phone call, we knew the course of our lives were about to be changed forever.  We had so many questions upon arriving at the children’s hospital this week.  Had Braden’s biological mother’s substance abuse affected his A-T?  Were his behaviors A-T related, a product of his exposure, or both?  What we learned will impact our lives daily.  It will shape how we parent, his therapy, and just about everything else in our world.

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Comments on: "Baltimore" (3)

  1. Even though I know the majority of the story already, reading this gave me a serious case of goosebumps.

  2. I am glad you are telling Braden’s story. Your words will calm and center those parents that are just starting their journey.

  3. Bradens story has a way of drawing us in. Thank you for letting us along the journey.

    Now seriously, you write that and stop??? Man its going to be hard to be patient!!!!

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