Thursday, March 20, 2014

Being a parent... to kids with Down Syndrome

Tomorrow, March 21st, is World Down Syndrome Day.  The reason behind this particular date is that individuals with Down Syndrome have 3 - 21'st chromosomes.  Thus 3/21 has be designated World Down Syndrome day in their honor and to spread awareness of this disability.  Over the past eight years I have learned a whole lot about Down Syndrome (DS), not only by living with it in my identical twin boys both with DS but from online research, meeting other families and reading several books on the topic.  I would consider myself very knowledgeable but certainly still in the learning stages.

I remember when my husband and I were informed that baby B, Caleb, was confirmed to have Down Syndrome.  I was more afraid of not knowing what to do with him than I was about having a child with something wrong with him.  Long story short, twins came 9 weeks prematurely, one at 3# 3 oz and other at 2# 10oz.  We had no idea that they had DS.  Baby A (Isaac) was reason for emergency c-section as he was literally born with head trauma from being stuck in my ribs.  Due to this head trauma they were not able to identify DS in him but saw features right away in Caleb and took some blood to confirm.  I was told that having twins both with DS was very unlikely and certainly very uncommon so they would wait until Isaac (2#10oz) was bigger to draw blood to test for DS.  Two weeks later Isaac developed NEC and was taken to Children's Hospital in Pittsburgh to have surgery on his small intestine, at which time they removed enough blood to confirm that he did indeed also have DS.  In our opinion, as mom and dad, we were grateful that both boys had it versus one with and one without.

Down Syndrome is most certainly scary to brand new parents. Down Syndrome is most certainly scary to experienced parents who have children growing up into adults.  Down Syndrome is most certainly scary to think to far ahead in the future about.  Down Syndrome shapes and molds a families lifestyle differently than those without a family member with Down Syndrome.  Down Syndrome is filled with uncertainties, no doubt.

BUT.... I am going to removed the words Down Syndrome from the above statements and fill it in with the word Parenting:

Parenting is most certainly scary to brand new parents.  Parenting is most certainly scary to experienced parents who have children growing up into adults.  Parenting is most certainly scary when you think to far ahead into the future.  Parenting shapes and molds families lifestyles differently than those who have no children. Parenting is filled with  uncertainties, no doubt.

Looking back on the past eight years am I going to say that raising children with Down Syndrome is as easy as raising children without... NO WAY (I have three typical children)!!! Would I say that raising children with Down Syndrome feels fair all the time... NO WAY.  Honestly, I selfishly get sad and down sometimes when I see other families who can just pick up and go to the drive in movie theater or have fun together at an amusement park, or even just go for a walk in the woods together.  Things like going to a ball game or swimming pool are just easy fun things to do.  But my circumstances are different than those raising children with just Down Syndrome.  My twins are non-verbal and also have Autism.  Autism is a whole different story that I won't go into on this post.

What can I say that I have learned the most about raising children with Down Syndrome?  I have learned that I was (and still am in many ways) very selfish.  I did what I wanted when I wanted with my other children and I cannot do that with my twins.  I have learned that unconditional love trumps selfishness.  I have learned that people with Down Syndrome just want the same thing that you and I want.... someone to LOVE them and NOT GIVE UP on them.  I have learned that the saying "Children with Special Needs does not take a special family to raise them, it MAKES a special family" is so very true in more ways than I can mention.  I have learned that people with Down Syndrome are beautiful people who just want others to take a minute to see them for who they are and accept that they are a little different but amazing in their own way. I have learned that I will never stop learning what I means to put others needs in front of your own.  The Lord works in mysterious and wonderful ways when it comes to something one might consider a trial in life, only to come to realize that it is in fact a blessing!!

My three older children have learned a valuable lesson that I can honestly say I did not know as a youngster. My boys have opened all of our eyes to sympathy, empathy and compassion.  These boys have changed my world and might I say for the better.  I pray that what I've explained here today does not make it seem as though raising my children is a burden but in reality a true blessing.   Some days are easy, some days are hard... but WAIT, isn't that the same thing I could say about my three older children without Down Syndrome?  You betcha.

When people say to me "I don't know how do you do what you do?", I can simply just say in love and truth, because they are my beautiful children and you would certainly do the same if they were yours.  Down Syndrome is not something that scares me, people who don't take the time to understand and enjoy people with Down Syndrome does.  Through all its ups and downs, parenting a child with Down Syndrome is a gift and I find it a privilege to be Caleb and Isaac's mom.

Happy World Down Syndrome Day 2014!