It Takes Our Village

It takes a village to raise a child with special needs.  The village is made up of doctors, therapists, special education teachers, aides, advocates, friends and family.  If you are lucky-each one of these special people work together as a team to provide all the tools your child needs to succeed.  We have a pretty good team.  A pediatrician's office that has tried hard to understand the chromosome disorder 1q44 and has tried even harder to keep a scared mom and dad feeling positive.  We have met some pretty remarkable therapists over the years.  Brady's first physical therapist was an incredible woman-she was patient, positive and stern all wrapped up in one.  She met Brady when he was so weak he couldn't even hold his head up.  She worked hard with him and gave us the tools and skills to work with Brady at home.  At a little over two years old....Brady took his first steps-steps we were not sure he would take.  Miss Jennifer is part of our Village.  We had speech therapists and occupational therapists who have made a difference as well.  We have met with every type of specialist you can list.  The funny thing about specialists is-as a parent-you know right away if the doctor is interested in your child or if they view him as just another child with lots of problems but very few answers.  There have been good ones and not so good ones.  At only three years old, Brady has had many teachers.  He attended the MISD program for two years.  There were teachers who were part of our village and others who were not.  The challenge with Brady is the uniqueness of his disability.  It is a challenge for teachers to work with Brady.  His attention span is almost none, he is still wobbly on his feet, he does not interact with other children and he cannot eat snack without an adult by his side due to choking concerns.  All of those challenges mixed up with a chromosome disorder that gives us absolutely no clues as to what he will accomplish in the future, puts his teachers at a disadvantage.  We just want people who believe in our son...that is being part of our village.  Villages are made up of neighbors and friends.  People you can count on when unexpected things happen, when challenges arise and when you just need someone to laugh with.  We are lucky because our village is made up of so many of these incredible people.  People who believe in our son and who understand the ups and downs of our daily life with Brady.  People who support our daughter and who make her feel like a part of their own families. But the most important part of any village is family.  Brady so blessed.  We, as his parents, are so blessed.  We have an incredible family.  I have 2 sisters and a brother.  My husband has 3 brothers and a sister.  We have brother-in-laws and sister-in-laws and 13 nieces and nephews.  We have aunts and uncles who listen and care.  We have more cousins than we can count.  We are so lucky to have all these amazing people in our corner....in Brady's corner.   But a village is only as strong as those who lead it.  Our parents are our leaders.  Our parents are Brady's biggest cheerleaders.  Our parents are what keep our village going.  Our parents are those who lift us up when we can't even do that for each other.  My mother-in-law retired from her longtime job when Brady was 2 months old...right before I had to go back to work.  I was scared thinking about where Brady would go when I went back to work.  My son had only been out of the NICU for 2 months and had just had his second surgery six weeks earlier.  We had signed him up for the same daycare Molly had gone to.  It was a wonderful place for Molly.  She grew, thrived, made friends, learned and felt secure there.  But it was not the right fit for our special son.  My in-laws gave us the most generous gift anyone could give-they give our son their time.  They agreed to watch Brady when I went back to work.  Over the last three years, Brady has spent the school year with my in- laws and the summer with my mom.  Between Joe's parents and my parents-Brady has received the most incredible care.  He has been loved unconditionally, spoiled a little, taught, pushed to try new things and things he didn't want to do, given routine, and taken more than a few long walks outside...he has been blessed and so have we. We have days when we are so tired from caring from Brady, from worrying about Brady and from going through life's day-to-day challenges.  But our little family of four, is so lucky to be part of an incredible village.  We are part of a village that understands, or at least tries to understand, what special needs our little boy has and what special needs our family has trying to deal with Brady's day to day challenges.  We are blessed each day to have parents who are so supportive and see beyond Brady's special needs and try hard to treat him just like their other grandchildren, but never forgetting that he is not.  We are lucky to be a part of a village that supports, loves, teaches, researches, laughs with us, cries with us and never stops believing that anything is possible for our little Brady.