Tuesday, October 28, 2014

What I've Learned From a Down Syndrome Diagnosis....

Yes, this is an odd title for a blog post.  Selfishly, it was meant to get your attention.  With that being said, I do not mean for it be a negative thing.  I want to express how things have changed for me, for the better, since we first received that diagnosis almost 4 years ago.  I want to let people know that it is not just the parents who teach the children; we, as parents, can learn lessons from our children, too.

This blog post is intended to express those things that I have learned from my daughter.  It is meant to convey the lessons that I have learned and the truths that I have learned.  I want to express those things that I already knew in the back of my head, but then were made real to me since she came into my life.  It is meant to be an encouragement to others who feel that their world has been turned upside-down due to a similar diagnosis.

It is so very hard to express the roller coaster of emotions over the first few days, weeks, and months of finding out that our daughter had Down Syndrome.  It's not something that you ever dream would happen to you.  You question why it happened to you.  You contemplate what the next years of your life are going to be like, now that you have a child that requires special attention.  You wonder how difficult your life is going to be.  You wonder how much this is going to cost you, physically, mentally, and monetarily.  You don't know where to turn to for help. You don't know who to turn to for help.   How are her brothers going to react knowing that she will be different?  How do you tell other people that she has Down Syndrome?  What will they think about it?  It really was difficult for several months.

But what we found was the loving support, first and foremost, from our families.  Just because she had Down Syndrome did not mean that she would be loved any less than any other member of the family.  Her brothers are more than understanding, and they give her special attention and are sure to include her in many things that they do.  We experienced the love from our church family: their many kind words, their thoughts and prayers, and the special attention that they showed to Hannah (and still do to this day).  [Granted, there are continuing issues that we are working on with Sunday School classes and the like, but the teachers have been great.]  

And then there were the Social Services that my wife worked with to help understand and aide in Hannah's development.  They were very instrumental in helping Pam know how to work with Hannah to help her in her development (I say they helped Pam because she was the person at home with her through all of the therapy sessions.  I was occasionally able to be there, but all of the thanks goes to Pam on this.).  Pam then got Hannah involved with CATRA (Capitol Area Therapeutic Riding Association).  It was there that Hannah learned to ride horses, which helped build muscle tone and helped with posture.  There were so many services available to us to help us, when we had no idea how to move forward.

And I cannot forget to mention the benefits of social media in all of this.  Yes, you can read books, which contain a more academic look at Down Syndrome and development.  But the wealth of first-hand testimonials on social media have been a tremendous blessing.  It's great to be able to read stories from others about how their child is developing.  It's great to be able to share stories about Hannah with them.  It's just a very good resource for information sharing.  And it is helps us to understand that we are not the only ones who are facing this situation.

So, what have I learned through all of this, you may ask?  The answers are many, and I can probably not name them all, or this would go on and on and on.  But I can tell you that I have not stopped learning.  I continue to learn new lessons, new truths, and new things about myself through all of this.

1.  Hannah is a gift from God.  Yes, I knew that anyway.  But the issue is that I need to continue to remember that.  We may not understand why God chose us as parents for Hannah, but she is God's gift to us.  Psalm 139:14a says "I will praise Thee; for I am fearfully and wonderfully made:"  Yes, even though, at times, we may focus on the imperfections, Hannah is fearfully and wonderfully made, too.

2.  All life is precious.  Again, I knew this.  But I was alarmed to see the statistics on the abortion rate for unborn children who were diagnosed with Down Syndrome.  Depending on the survey that you read, somewhere between 75-90% of all children diagnosed with Down Syndrome before their birth are aborted.  That is sad.  Life is precious.  And people choose to play god with these unborn children because they do not fit into what they think is "normal."  Shouldn't we, as Christians, be glad that God does not do away with us because we do not conform to what He wants us to be?  A few months ago, a man by the name of Richard Dawkins said that it would be immoral NOT TO abort a child with Down Syndrome.  How can a person possibly be so depraved to even let a thought like this go through his head, much less actually say it out loud?  Life is precious.  Just because someone does not fit into our idea of normal does not make that life any less precious.

3.  Down Syndrome is not a death sentence.  Many years ago, the outlook for people with Down Syndrome was not good.  They were basically written off as members of society.  They were not viewed as people who could contribute to society.  They were viewed as a drain on society.  They had a rather short life span, because they did not receive the necessary care.  But over time, that viewpoint has changed.  The average life span for a person with Down Syndrome has nearly doubled.  We've learned that people with Down Syndrome can learn and can be productive.  Tremendous advances have been made, and continue to be made.  Last week, I read an article about a woman that wishes she would have had an abortion 47 years ago, had she known her son was going to have Down Syndrome.  I wonder if she knows that people with Down Syndrome do have the ability to understand.  I wonder if she ever told her son (who she says she loves) that she wishes he had never been born.  You know, nothing says "I Love You" more than wishing death on that person.

4.  People with Down Syndrome have the ability to learn.  This was one of those things that I might have known, but didn't know that I actually knew it.  There are so many stereotypes out there for people with Down Syndrome, many of which are just not true.  Yes, they learn more slowly than others of their own age, but they definitely have the ability to learn.  One only needs to see Hannah with our iPad or with my smartphone to realize that she can outdo many adults on one of those devices.  She has learned sign language, which she uses as a means of communication.  She knows more sign language than me, that's for sure.  You can find many stories on the internet about people with Down Syndrome who have found success in life, whether it is as a business owner, a teacher, or even an MMA fighter.  We cannot simply write-off people with Down Syndrome.  They have a tremendous capacity to learn and grow.  We just need to give them a chance to do so.

5.  The love of a child is incredible.  First, let me say that this does not mean that the boys do not love us.  But love is expressed in different ways.  Hannah will give me a hug before I leave for work.  When I get home, she will greet me with a hug.  When I pick her up as school or after Junior Church, she'll run to me and give me a hug.  That's an incredible feeling that I just do not even know how to explain.  When she does something that she's not supposed to and gets punished in some way for it, sure she's sad for a little bit.  But in a few minutes, she'll come right back and give you a hug, forgetting that it ever happened.  Wouldn't it be great if adults had that same sort of short-term memory?

6. There are people who are ready, willing, and able to help us when we need it the most.  Again, something I probably knew, but just did not care about.  As I said earlier, the family members, our friends and neighbors, people from church - they were incredible in helping us deal with the initial shock.  We found out that several in our church had worked in environments with people with special needs.  They were able to give us good information and advice.  Our Pastor's wife read many books about Down Syndrome and gave us some much needed advice and encouragement in those early months.  We were truly blessed to have a network of people who were there for us, to pray for us, to encourage us, to simply be there to talk to when we needed it most.

7. We are blessed.  Hannah has not had many of the physical problems that other kids with Down Syndrome have.  She wears glasses, she has tubes in her ears, and she had to have her tonsils removed.  But these are things that many parents of children who do not have Down Syndrome have to go through, too.  We constantly hear stories of children, whether with Down Syndrome or not, who are stricken with life-threatening diseases and injuries.  We have not had to face anything like that, and for that, we are truly blessed.

I could probably go on and on.  But you get the idea.  We are blessed to have a child that we love, and who loves us back, unconditionally.  The diagnosis of Down Syndrome did not bring the world, as we knew it, to an end.  Instead, it opened up our world to opportunities that we never even knew existed.

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