Sunday, June 26, 2011

Squiggly Sunday

Master S was born.  Purple.  Big.  A port-wine birthmark from forehead to top lip.  He was stuck, and blessedly pulled from me by our aunt.  He was safe.  How could I love another child as I loved Miss G so?  It was instant.  My love for him poured from my heart.  His tongue was sticking out.  He's a big one I heard them say.  Look at these little grooves in his ears, how cute.  Wow, I delivered a big baby I had thought.  Miss G was only 6 pounds.  Master S was almost 10 pounds.



We snuggled and I fed him.  My new son.  Miss G met her brother - a real breathing doll.  He did not look like Miss G.  He was different looking.  I loved him so.  My son.  Mister DCT was there all the way.  What shall we name him?  It took a while to come, the first name we mentioned all those months before.  He was named before he arrived, before he was conceived.  He was sent to us.  Most definitely.  We spoke his name at the exact same moment.  Master S was named.  His name means asked of God and heard by God.  We bonded, we fed, we visited, we slept.  The nurses visited frequently and said the doctor would visit in the morning.


He visited very early, the doctor.  He looked at my babies hands.  He has a hernia he said.  He must have bitten his tongue during delivery he said.  Oh - okay, I thought - Doctors know best.


Our Aunt visited later that day.  They had been checking our Master S for Downs Syndrome.  He did not have Downs.  His tongue must have just been bitten on the way out.  So they said.



the picture sent to our aunt

We were building our first home.  We lived with family during those first few months.  Miss G watched many a video of Sesame Street and Hi-5.  Mother guilt started because of that.  Master S was breast-feeding every one and a half hours.  His head would only look to one side.  His tongue did not shrink.  This swelling must take a long time to go down I thought.  He cried at all loud and foreign noises.  He was calm when it was quiet.  We moved to a friends house and house sat and a week later to Mister DCT's Grandpa's to house sit.  Our house was still a few months away from being ready.



We visited the doctor again for a follow up visit.  Master S was fine he said.  Master S must have bitten his tongue during delivery he said.  His tongue will go down slowly he said.  Master S has a hernia that will fix itself he said.  I trusted him.  Doctors know best, especially older ones.  Don't they?

Miss G loved her new brother.  She was so helpful.  So caring.  Her mother heart and firstborn helpfulness were so beautiful.  Those days seem so long ago.  My beautiful babes.  How I love you.  Our house was coming along, the frame was up.



Always leaning to one side

 It was Christmas time, 2001.  We visited the family for our traditional Christmas Eve gathering at Nanny and Grandpa's house.  The raspberries were ripe for picking.  Cousins, Aunts, Uncles and friends arrived - the same Christmas Eve crowd.  Familiarity and Love.  Comfort.

3 months old with our super Aunt

Our Aunt the midwife was there.  She had received a photo of my babes in the mail the week before.  She had taken it to work she told me, to show the other midwives.  She gave me a pediatric journal report to read.   She said I may find it familiar reading.  Large birthweight.  Enlarged tongue.  Ear pits.  Hypoglycemia.  Asymmetrical growth.  Prominent Occiput.  Microcephaly.  Umbilical hernia.  Familiarity.  Some unfamiliarity too.  Mental retardation.  The C word.  What did this mean?  It was Christmas.  

We did a lot of reading online that night.  I became obsessed with researching these characteristics.  He didn't have an omphalocele (protruding intestines).  He wasn't having hypoglycemic fits.  Was my baby going to be okay.  It was Christmas.

It was the new year, Summer.  Doctors were on holidays.  I ate a block of chocolate each evening.  I didn't drink.  Mister DCT was working 17 hour days.  Miss G would not go to sleep at bedtime.  She had a short habit of smearing her number two's through her cot.  Anxiety was peaking when I was alone.  I felt alone in the evenings.  Friends visited in the days.  My bestie, our families besties.  My mum, our Aunt.  This was a blessing.





The house was coming along.  February came.  The pediatrician saw us.  We asked him upon showing the journal report we were gifted at Christmas.  Look at this he said; an image of a child with protruding intestines.  Your son is fine.  He just bit his tongue on the way out.  I'll send you to the Geneticist for your peace of mind.

We arrived for our first major hospital appointment.  A specialist appointment.  Genetics.  How blessed are we.  Muscular dystrophy a lady tells me, her muscles are wasting away, she was pregnant, did her babe have it too.  So many people look normal here.  What is happening with them I wonder.  We see Agnes, the head of Genetics in our state at the time.  She looks at my son.  One minute it took.  She looks at his face.  Port-wine birthmark.  Large tongue.  Googly eyes.  Ear pits.


Yes, your son has Beckwith-Wiedemann Syndrome.  Beckwith-Wiedemann Syndrome.  Anxiety.  Will he be okay?  Will he die?  Worry.  More appointments, tests, specialists.  My gut feels sick.  Did we do this?  How did it happen?  Mister DCT wondered if it was from him.  Luck of the draw they say.  Loss of methylation in the H19 gene.  Winning the lottery.  Not familial.  Sporadic.

Summertime, the soft breeze that brings comfort.  The familiarity of seasons, they brought comfort during those times.  Nothing was stable, or seemed stable.  Seasons, my husband arriving home and Miss G's two year old antics were my stability.  No home to live in, a baby who was a mystery.  The unknown was painful.  Post-natal depression seemed to take hold too.  I ate chocolate, drank coffee.

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It's amazing reflecting on that time, I feel so blessed to have made it through almost 10 years since my Master S was born.  He is well mostly.  No onset of the C word.  Every BWS (Beckwith-Wiedemann Syndrome parents dream come true).  I hope this snippet gives you insight to the feelings I had becomming a parent of what the world calls a child with special needs.  I am not sure I like that phrase, additional needs, medical needs, birth abnormalities, birth defect - they all sound so negative.  Master S is just Master S.  What a blessing he is.

Happy Squiggly Sunday and thanks for all your support and comments.  Please let me know if you would like to be a guest and share a story on Squiggly Sunday - we would love to be able to share with you too!

Much Love Rach xo

15 comments:

  1. Thanks for sharing your story. What a roller coaster ride of emotions you have been through. Your son looks like such a happy little boy xo

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  2. this is such a beautiful piece.....yes I too hate that title 'child with special needs'.....Master S is truly just Master S....these photos are so precious, especially the one of Master S in his blue jumptsuit with a impish smile on his face!! Also the one of Miss G & Master S in the sunshine outside - adorable. Cudos to you for being the fab mumma that you are ti your tribe, they truly are blessed to have you as a parent, with love to you this Sunday, TK xx

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  3. Wow, you look like teen agers.
    You write so beautifully. An increadibly heart achingly honest and love filled post. He is so lucky to have landed in your family.
    What a beautiful family. x

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  4. Dear Rach,
    Alot of emotion to get out when you are blessed with such a special child. You have done an amazing job to be where you are today. I love your writing and especially look forward to your squiggly Sundays.
    Talia xx

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  5. So beautifully written Rach, and it feels as though you remember it all like it was yesterday. He's a gorgeous boy, and I'm so happy he's healthy and thriving in your wonderful happy squiggly family :)

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  6. You have been through so much in your short life Rach but I am amazed at how strong and capable you are! How shocking to have the Dr's tell you your son is okay and not trying to help even more. But glad he's such a blessing in your family. xo

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  7. Once again, beautifullly written, it's just so captivating. It must have been such a burden! you are so strong!

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  8. Oh my, what a story. You are so brave being able to go back and live again the feelings. Such honesty, so much pain.

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  9. Thank you so much for sharing your story, Rach. You write with beautiful honesty and emotion. Master S is so fortunate to have such loving and caring parents.
    Much love to you.

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  10. beautiful.... wow, what a rollercoaster of emotions you must of felt, and I must say with the way you put your words together, I felt it too.... Master S is beautiful, just like his mummy! x

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  11. Thank you for sharing this- it makes the roller coaster a little less scary.

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  12. Thank you for sharing your families story :D They are still the beautiful babies we welcomed into the world with so much love.

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  13. Hi,my son Evan is a BWS kid too and he is 8 weeks old,I felt so much in common after read your beautiful story,I have done a lot of research for BWS,a mum like you really give us the strength to face all the challenges in the future,thanks.
    Jesse from sydney ( jieqian1967@hotmail.com )( jq0608@gmail.com )

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