Trisomy 21!

My husband and I had the privilege to spend all day Saturday, learning about Down's Syndrome.  We felt so connected to Peter and so grateful for all these giants in the field of DS.  We were exhilarated and exhausted at the same time.  We attended the 8th annual Trisomy 21 conference at Children's Hospital of Philadelphia.  They have a whole group of medical professionals devoted to DS and all that entails from therapies to specialists dealing with the physical challenges that come from the extra chromosome.

(Back Story 1)  When we knew that adopting Peter was what God was calling us to we immediately did two things.  Prayed and prayed some more.  What came out of those times of prayer was locating the local DS Support group for our county of Berks, PA.  We discovered that the group met right around the corner from our home.  We have been going now for a whole year and have learned so much from all the families that attend.  The advocate for the group, Donna Wolf, is very knowledgeable on the topic of DS and right away, she sent us home with a whole big bag of books to read.  And boy have we read.

We have been to a lot of training courses that are given by Bethany Christian Services (BCS).  They have been informative, helpful and on target about the challenges one might face before, during and after placement of the adoptive child.  We feel very well equipped and refreshed as well on some areas pertaining to our first adoption through them with Eliot.  But not a lot of the training was hands-on instruction concerning DS.  The books we read, the people we have met with and gained support and wisdom from their experiences with DS, were great.  At that time we really believed that we were prepared for Peter.  However, after going to this wonderful DS event, we knew that there was so much more to learn and that whatever needs Peter may have, whether therapeutic or medicinal, there will be a place that can help us and give us answers.

(Back Story 2)  Thom and I have both read a lot of great books on DS this past year.  When we received Peter's medical evaluations and therapeutic evaluations we were able to track along with the information and were very encouraged and grateful for the care he has been receiving.  Then the video!  Oh my, seeing my son walking, laughing, singing, signing, playing, writing, eating, climbing, and the list goes on, made me laugh out loud with joy.  I had read up on all that I was seeing and I was so happy to see such wonderful progress he was making and how well cared for he was.  I wouldn't have known what I was seeing if it weren't for the books we had read.

Then the conference!  It started out with Dr. Brian Skotko, a Pediatric Doctor specializing in special needs children, specifically DS from Children's Hospital of Boston.  He had written a book called Common Threads containing various interviews with adult DS folks highlighting their accomplishments.  After each interview he would ask a question to help us to dream about Peter's possibilities and each question infused courage, hope with an outpouring of tears.  And there are so many more books for us to read pertaining to so many other ways to come alongside our little ones and help them to grow.  Susan Levine co-authored a book with Brian Skotko called Fasten Your Seat Belts which centered around siblings and there questions and lives with their DS brothers or sisters.  Susan Levine has been working in the counseling field doing sibling workshops for families with special needs for over 32 years. 

The professionals were so well educated and approachable and I also found the parents were a great resource as well.  The questions they asked during the panel discussion which included, an allergist, a pediatric Dr., an orthopedic pediatric Dr. and a physical therapist, made me realize one thing.  I had a whole lot more to learn!  And God was showing Thom and I, yet again, that He will provide everything Peter needs to become all that God has planned for him to be.

So, we have more things to read, more webinars to watch, more questions to ask and a place to ask them.  Information is freedom and we are grateful for it.  Peter isn't even home yet.  God in His wisdom has made sure that we will be well equipped for the day when he does come home and all the days following.  We are grateful recipients again and again of God's wonderful provision and all the praise goes to Him!