Unexpected Living

This is part three of the three-part foundation to my blog.
Click here to read part one.
Click here to read part two.

I cannot tell you how beautiful my daughter is.  You have to see it for yourself.  It's difficult because we always say, "how could she get any cuter," and then she goes and obtains more beauty than I can bear.  We actually prayed for her to be a very attractive child.  We asked God to grant her a beauty that made people drawn to her.  It's a gift many people with down syndrome have and by golly my daughter OWNS it.

Life has been different than originally expected since our daughter has been born.  We have four appointments every week to work toward milestone goals.  Monday- speech therapy, Tuesday- developmental intervention, Friday- occupational therapy, Saturday- physical therapy.  You might say, "that's a lot of stuff!"  It can feel that way sometimes, but it's really a lot of intentional play with our sweet girl.  Every child could benefit from their parents taking at least an hour a day to interact with them, teach them and invest in their well-being.  That's what we do in our appointments and we take the skills we learn to incorporate them into our everyday life. 

My daughter does not have the ability to learn like everyone else.  She must be taught a lot of things that children her age have the ability to pick up naturally.  Don't get me wrong.  That cookie is sharp! There are a lot of things that she picks up on her own that we don't expect.  However, there are things that we encourage her to do by playing and setting up scenarios for her.  My husband has said that the way our therapists are teaching us to teach her seems very intuitive-- though, it takes time to begin thinking on these terms on your own.

It would be easy in the moment to sit on the couch and watch t.v. while our daughter grunts for her sippy cup, so then simply hand it to her because we know that's what she wants.  However, that doesn't teach her much except that she can grunt for what she wants whenever she wants it and it will be handed to her.  Instead, we can take a moment from our episode of Jeopardy and ask her what she wants.  Our daughter knows how to request water, milk or juice.  We can then get her a cup and fill it or point to a certain part of the room where she left it.  These are skills she can take with her for many years.  She isn't helpless. 

All of us would have more work to do later on if we didn't teach our daughter these skills.  And who wants a 6-year-old, teenager or adult who grunts for what they want-- leaving us guessing their desire.  This is why we do it.  My daughter deserves access to skills she can achieve and give her a better quality of life. 

This is not the only way our lives are different than expected.  We also have one of the most outgoing and loving toddlers.  I kind of feel bad for the nervous, shy kids at the playground who backpedal as our daughter walks up to them with open arms.  She can be a bit overwhelming for these sweet kiddos.  My daughter also thinks she is in the middle of a pageant every time we go into a store.  This child knows she is cute and is willing to say "Hi" to every passerby.  This type of attitude has garnered much attention.  My husband and I now affectionately call her our town's "sweetheart."

Many parents who have children with Down syndrome may do life a little (sometimes a lot) differently than us.  Some have children with health concerns that affect their lives or put their child on a different schedule from us.  Some have children with other diagnoses that affect how they do therapy.  Some have kids who picked up big milestones before my daughter did and now have the ability to do things that she is still struggling with. 

It is entirely too common to be asked the question, "Do they know what her abilities will be as an adult?"  This questions bugs me more than I care to go into right here.  I will address the best answer I know.  Every child with a Down syndrome diagnosis is different.  What works for one child may not work for another.  What is easy for one child to achieve can be a huge task for another.  Are there things that are common or even typical of our children?  Yes.  However, no two children are the same no matter their genetic makeup and it's the same with children with Down syndrome. 

My life is definitely an unexpected adventure.  I enjoy it, though. My daughter brings much more love, joy and wonder than complication, worry or sadness. I choose to live my life in the freedom of knowing my daughter will do much in her life even if society might not always see her the same way I do.  If you are a parent with a new diagnosis, be encouraged that this is not the end, but rather the beginning of an unexpected life that unfolds in great beauty.