3-21

If you had asked me eleven months ago what was special about today's date, I would have immediately answered, "Sometimes it's the first day of spring."

Now, a new answer would come from my mouth,  "Today is World Down Syndrome Day."

They chose this day, March 21, because it represents what is true of all people with Down Syndrome:  instead of two of the 21st chromosome, people with Down Syndrome have three of the 21st chromosome.  Down Syndrome is clinically called Trisomy 21.

My son was diagnosed with Trisomy 21 just two weeks after he was born, in April of last year.  Much has changed in my life since that time, and a lot of it has to do with becoming aware of Down Syndrome.  I never knew much about it, and so on this day, I thought I'd take some time to share a few facts with you, helping you to become more aware.

These facts are taken from the National Down Syndrome Congress Center:

• Down syndrome is a common genetic variation which usually causes delay in physical, intellectual and language development.
• The exact causes of the chromosomal rearrangement and primary prevention of Down syndrome are currently unknown.
• Down syndrome is one of the leading clinical causes of cognitive delay in the world – it is not related to race, nationality, religion or socio-economic status.
• The incidence of Down syndrome in the United States is estimated to be 1 in every 700 live births.
• Of all children born in this country annually, approximately 5,000 will have Down syndrome.
• There are approximately 1/4 million families in the United States affected by Down syndrome.
• While the likelihood of giving birth to a child with Down syndrome increases with maternal age; nevertheless, 80% of babies with Down syndrome are born to women under 35 years of age, as women in that age group give birth to more babies overall.
• There is wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.
• 30% – 50% of the individuals with Down syndrome have heart defects and 8% – 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.
• Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.
• In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities.

Reading this list seems quite impersonal, at least it did to me when I read it right after Mason was born.  But, it is helpful in understanding a little bit about Down Syndrome.  

There are some things that you won't read in the clinical descriptions.  These are the things that I've experienced during these months and I want you to know these things about Down Syndrome too, for these are the things that characterize our precious little boy and right now describe a bit of our life. {I realize some of these descriptions might not be true of all children with Down Syndrome, but this has been our experience}.  

Children with Down Syndrome tend to have low muscle tone, which causes physical delays in gross and fine motor skills.  What they don't tell you is that because of the low muscle tone, you will have a very snuggly baby.  Mason still loves to snuggle and it is one of the most enjoyable things for me.

The amount of affection displayed toward parents and siblings is insurmountable.  The joy that is shown on Mason's face when he sees us is contagious.  I have never felt so loved and adored as I do by this little boy.

Each milestone reached is an opportunity for rejoicing and great delight for all of us.  Our four-year-old and three-year old daughters are too young to understand Mason's condition, but they have joined right in with us as we have celebrated over things like rolling over, sitting up, clapping and doing 'so big'.  I never realized how critical each of these skills were until I knew that there would be delays in Mason's development.  

There are easy days and hard days.  Living life with a child with special needs is challenging.  I won't deny that I have struggled a lot this year.  You don't read in the literature about the ups and downs, but it's real.  Though I hate to compare, there is always a battle within me when I see other children the same age, or younger, who are capable of doing much more than my son.  I just want Mason to eat a Cheerio, or drink from a cup, or move from a sitting position to his tummy.  But, he can't; not yet.  And that's hard.   

You won't read in the literature how much your heart will expand with love for your child.  Yes, I love all my children, none more than another, but sometimes you wonder how you will feel toward someone who is different.  I can tell you that you will love them just the same.  Mason has completely captured my heart.

I could share a great many things, and I will write more in the days to come, but this is just a small list for you  on this World Down Syndrome Day.  

One thing I can share with great confidence is that Mason is loved, accepted, and delighted in by our family and friends.  We look forward to seeing what God has in store for this little guy.  

A friend just sent me a link to a blog post written by a mother who has a 5 year old son with Down Syndrome.  If you'd like to read another mom's perspective, someone who has walked this journey longer than me, I encourage you to go over and read her post, at Making Something Beautiful.  It encouraged me.