Friday, October 5, 2012

Caleb and Isaac have Down Syndrome..

Caleb and Isaac Have:

  • Down Syndrome
  • PDD Autism
  • Apraxia, non-verbal
  • Sensory Integration Dysfunctioin
  • Subglottic Stenosis
  • Asthma
  • GERD
  • Hypothyroid
  • Ear Tubes
  • Ongoing severe constipation issues
  • No more tonsils

What else Caleb and Isaac Have:
  • Beautiful eyes
  • a funny belly laugh
  • a short cute stature
  • toes that I could just nibble on everyday
  • a knowledge of 600+ words in sign language
  • a desire to learn
  • a love of watching tv
  • rhythm
  • abilities
  • desires
  • likes and dislikes

What Caleb and Isaac have given their Mom:
  • Compassion
  • Love
  • Concern
  • Fear
  • Knowledge
  • A purpose
  • Spiritual Growth
  • Understanding
  • A Voice
  • A Story
  • Heartache
  • Exhaustion

For National Down Syndrome Awareness month I wanted to be able to show that my boys with Down Syndrome bring so much to the family, some good, some not.  Looking at the list "What Caleb and Isaac have given their Mom", I jotted these words down as quick as they would come to my mind, most of that list is positive.

There are a few words that are not positive, Fear, Concern, Exhaustion and Heartache.  We are all entitled to these feelings and God gave us these kinds of feeling for a purpose.  To be alive is to experience feelings.  I am often find it so interesting how people all process their feelings and emotions so very differently.  And... that's ok!!

I remember when we were told about Caleb having Down Syndrome.  First there was shock.. Then came the disbelief "I can't see it!".. Then came fear of the unknown "I don't know anyone with Down Syndrome".. Then came the tears "there's something wrong with my baby"... Then came the big hug from Tom and both of us standing tall, firm and determined to figure this out and lean on God for guidance like only He could give us.  

We were all alone at first.  AND.. we still did not know if the twins were identical or fraternal.  We began to weigh out if one had DS and the other did not, or what would it be like to have two boys with DS? Fear again took over.. how would we, could we raise two of them if we don't even know if we can raise one of them?  We felt as though God must have alot of confidence in us if they both had Down Syndrome.  After several days we found out that we were indeed doubly blessed with identical twins, with identical genes and identical diagnosis'.

I think another word that just came to my mind is CONSUMED.  I feel like my life is now consumed with learning about, understanding and advocating for individuals with Down Syndrome.  Somedays I would like to just focus on me, my husband and my family.  If you read through my blog history I mostly post positive stories and comments about living with and raising children with Down Syndrome.  But today I think I will end with a pity party of sorts, raising children with multiple disabilities is just plain harder and exhausting.  There is so much involved with it... learning..defending...puffing up... educating.. advocating... spreading awareness.

With all that said, I would not change a thing if given the chance.  I am so proud to be Caleb and Isaac's mom.  I am so honored that God would bless Tom and I with the most amazing and different children than what we might have once dreamed for.  Most days are filled with the biggest belly laughs and tickles and sloppy kisses and others well, let's just say I can't sit down for a second or I will go into nap mode immediately.  It IS worth it... I'm just plain tired I reckon.

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