Marty Stands Tall-Gains Wisdom

Marty as an eight year old!  Technology wizard, big brother, loving son, learner, writer, speller, Mr. Comedian!  A few months after Marty turned eight, he came down with pneumonia.  Like many Down Syndrome kids, this meant for Marty, a stay in the hospital as it lingered on.  His sensory issues come into play when care giving is required. Initially, Marty was not a happy camper with IVs, pulse ox monitors, oxygen masks, cannulas, blood pressure cuffs topped with constant poking and prodding.

Being sick can put anyone in a bad mood, Marty was especially sad to be away from his home.  His parents were there every minute with his favorite technology at the ready.  Family and friends gathered for support. Prayer sent heavenward.  Eventually after a week, Marty slowly accepted the prodding and poking to ensure his oxygen levels were improving.  After ten days, he even showed the nurse which arm to do the blood pressure and sat still for temp readings.  He endured!  He showed strength and courage.  He accepted the care and love that was showered to heal his lungs.

He and I missed his brother’s 6th birthday party.  He happily waved good-bye as his family left for the party–he was staying home alone with Grandma–and of course, free use of any technology he could get his hands on!  We had a great time hanging together, plus he showed off his alphabet skills

There are times we must accept the care others have for us, and there are times we must forego a special event in order to retain our health–this is what Marty learned shortly after his 8th birthday.

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Marty Turns Eight

My grandson will be eight years old soon.  It has been too long since I have written about him to encourage other grandparents that Down Syndrome is not a negative in one’s life. It is a beautiful life but sometimes life also gets in the way.

Still Mr. Incredible in my book, Marty faces challenges with a rugged determination; he loves with his entire heart, he is a learner yet he is not a language user.  But he speaks in other ways–mainly through his heart, sign language and a glance and smile. He knows how to work every technical gizmo in his home.  He wins hearts with his dimples and knows how to make a person laugh.  To include others, he motions to come with me and he shows you what you need.  He finds his own way.

He has a great group of supporters yet sometimes is left out.  There are times when he chooses not to participate, especially in the rain. I have high hopes for him and I try to show him there are moments for just us two.  He treasures those moments and returns the love.  So Happy 8th Birthday Marty, you are important, you do matter, and I love you with all of my heart!

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Life Moves-Marty is Seven!

It has been a long time, since I have written of my grandson Marty who has DS.  Life just gets in the way:)  Marty is in school now, first grade!!  He is writing his name!! Using scissors!! Spelling!! Though still not completely verbal, he has many tools he uses to communicate. There is a binder sorted by word types and topics he used last year.  He loves technology so the communication tool this year is right up his alley.  It is an upgrade from the binder but still using the layering of word types and pictures.  (Pictures of Marty and family members can be added.)  He still relies mainly on vocal sounds which is great.  Hope is that the Karaoke machine he received at Christmas will exercise his vocal chords and encourage practice of sounds.  He loves to help vacuum, so he got a small vacuum cleaner too.  He loves his family so completely but sometimes likes to admonish his brother or sister for a wrongdoing.  I still love that he greets me with a palm up and a shout of MAH!  Such a treasure!!  If you have a grandchild with down syndrome do not be afraid, do not worry too much, just love and watch the growth and progress they make at their own speed.

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Lost Child –Found on the porch

This was written when I worked as a medical research program manager.

Poetry Road

One cold morning moment

she walked unto the porch

Did she cry out, did she stumble,

Did she pray

At one point she collapsed

And lay there as the snow covered her soul

EMS came when she was already cold to the touch

How lonely the list of her personal effects

Identified a pair of pants

Two shirts and two keys

An old watch

A pair of oddly colored earrings

The remaining twenty documents testified of last efforts

Last breathes

Filed and justified

The end of a life

Barely 60 years old

The story in the papers told

Inner city born and bred

Child grew and now she is dead

When was the moment

Addiction seized

Innocence scrapped

Confidence trapped

Consciousness averted

The heartbreaks remain

As this is a story from a decade ago

The voices still continue everyday

Those who die alone

Just as they lived

where is the call…

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Marty Turns 4

Marty has a determination and confidence in all that he does.  You can see it in his face as he concentrates on accomplishing a new task.  He has conquered his discomfort with cups  and no longer drinks with a sippy lid. He still has to learn the concept that if you throw an open cup the contents do spill all over..not like the sippy cup he has thrown to the floor when he is done which occurred many, many times.

He has learned a few more words and his family supports him to continue using those new skills.  For instance, we say “Ready, set….and Marty finishes with GO!!  He loves his family, routine, rough housing, creativity, puzzles, and of course movies.  he has mastered the DVD player and puts the movie back in its cover when he is done.  He can be helpful gathering everyone’s shoes when it is time to go bye-bye.  He will start his second year in school in a month.  I am sure he will surprise his teachers with the things he has learned over the summer!  His Down Syndrome diagnosis does not define who he is–which means he is as unique as any other individual and does not fit into a defined assessment.  I predict he will astound even those who love him deeply!

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Marty spends the day

Marty spends the day.

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Big Brother Marty

With the recent addition of his sister Adele and with 18 month old Silas, Marty is the attentive big brother of two now.  Marty adores his family.  He loves  to watch movies side by side with his brother and goes to check on little sister in her swing.  Marty and Silas share every mealtime where Silas the explorer encourages Marty to try new foods by example.  Marty usually sticks to the same foods but will try a morsel as he watches Silas grab and munch.  When Adele came home, Marty proudly held her (with  supervision, of course).  He did have some adjustments when Mom was not readily available, he liked to go and empty out all the toy bins on his shelf–a game Silas enjoyed too!  When it is time for his brother to go to bed, Marty has a moment of mourning then realizes he has his parent’s undivided attention for the next 30 minutes and usually snuggles up.  It is so wonderful to watch Marty adore his family–I cannot wait to see their relationships evolve as they get older when the laughter kicks into high gear, the ball throwing gets a little competitive and perhaps sister Adele will teach both of her brothers some kitchen play moves!

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