Monday, October 5, 2015

Down Syndrome ~ Different does not mean less than ~

On our way to Pittsburgh this morning for Isaac's post op appointment, from his double ear drum repair surgery back in August, I realized that my twins are so very conditioned for our 2 + hour drive to Children's.  Over the past year we have averaged 2 to 3 appointments a month like this.  We drive 2+ hours most of the time to attend a 15 to 20 minute appointment and then turn around and drive back home.  These days are tiring for mom and dad, especially dad as he is the driver (mom can sneak naps with twins in car).  Yet I am thankful that we have a good Children's Hospital nearby that can take care of all of our boys needs right now.  I read blogs and stories of other families who must travel out of state or even out of the country for treatment.

Tom and I try to humble ourselves with our situation and remember that there are families out there dealing with way more than we are.  Having twins with disabilities does come with its challenges, but we are blessed with the resources, supports and ability to care for their needs. 

Last week we were in Pittsburgh for another appointment OR I should say appointments.  We were finally able to coordinate several appointments in one day.  We actually had six appointments (one each) with three different doctors in one day.  Our appointments started at 11:30 am and ran clear until 4:30 pm without a lunch break.  It was a long day but it was nice to know that we only had to remove twins from school one day instead of three separate days if we were to schedule as we usually do.

One of our visits was the boys bi-annual visit to the Down Syndrome Clinic.  These appointments always help make sure I'm not missing something and keeping up on all the required visits, follow ups and then add some suggestions to things we may be missing.  On this particular visit it was nice to speak to the Down Syndrome coordinator, Shelia, and confess that I feel like we just don't belong to the Down Syndrome group OR to the Autism group.  I see kids much younger than the twins with Down Syndrome flourishing and talking and doing great.  While I truly feel happy for these kids and their families I feel like it's hard not to compare the differences we see.  Then I have the boys in their awesome Autistic support classroom and an equally awesome after school program for children with Autism, and there, Caleb & Isaac are the only kids with Down Syndrome.  Again I find it difficult not to compare the differences in my boys with their peers in these classrooms.  Shelia at the Down Syndrome clinic said they do have parent who don't quite feel they fit in with the "traditional Down syndrome" category and for this they are trying to put together a quarterly parent meeting to help facilitate better understanding and to share ideas and outcomes.  I think this is wonderful and I plan on adding this to our frequent Pittsburgh trips.

I know that some may read this and understand where I'm coming from.  Some are going to read this and argue that all children are different and just figure it out.  And then there will be those who don't understand yet can sympathize with the unknown.  I love wearing these shirts on my twins because it reminds ME that "Different DOES NOT mean Less Than"

To end on a good note.  Today's appointment was a GOOD OUTCOME!! Isaac had just undergone his third surgery to repair two completely perforated ear drums from having several sets of tubes.  The second surgery was pretty invasive and a difficult surgery yet within three weeks he developed an infection that made them tear again.  In August he had a new surgeon and a new approach and today the doctor said they his ear drums are still in the healing process and covered with scab like wounds but both ears are closed and his no water in the ears restriction was lifted for the first time in like four years!!  We are so happy with this news and pray that he doesn't get any immediate ear infections while ears are still healing.  We will go for a hearing test in a few weeks and we should be able to remove the long distance ENT visits off the list for now.

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