Wednesday, May 25, 2011

Dear Jack,

I love you so much.  There were so many questions that I struggled with around your birth.  I was sad that there seemed to be so many things for you to over come.  I wasn't sure that I could deal with the injustice and stand by your side to clear the way forward for you.  How was I to present you to the world with this black cloud hanging over you?

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What a truly beautiful baby you were.  Sunny disposition, peaceful, cuddly.  You have always been a source of such joy.  Having you at home was a real blessing. No one want wanted to whisk you away to do tests.  Daddy and I got to hold you close and look at your tiny hands, feet, chubby cheeks, perfectly shaped head. The next morning we went into the hospital to see the paediatrician.  They drew blood to test for Trisomy 21 which told us for sure that you were indeed a special boy.  But we didn't need a test to tell us that.  You will always be amazing in our eyes. Later in the week came tests to see if your heart was working the way it should and everything looked fine.

You were loved by everyone from the soft, warm, fuzzy tip of your head to your wiggly, squiggly toes.

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Jasmine didn't want to put you down.  Levi couldn't wait to play cars with you.  Daddy and I were so proud.  We thought we were home-free until we discovered you also had Glaucoma at four months old.   Then the real trials began.

Six surgeries and so many doctors visits.  You have shown me such courage and strength.   There is nothing that I would change about you.  You are perfectly Jack.  Perfectly funny, impish, curious.  You love to talk, sign and make people laugh with your quirky faces and funny jokes.  Now, you love to walk so much that you run everywhere.  Such joy you bring to our lives.  I don't understand what I was so afraid of, Jack.

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What are we afraid of?  Why is it a standard and acceptable option to end a pregnancy when we discover the baby might have Down Syndrome?  When I think of what I might have missed out on, Jack, my knees go weak.

If I could go back to those early days and give myself a taste of the love and happiness we have experienced having you in our family, Jack, maybe I wouldn't have been so afraid of what I didn't know.  I would clearly see the beauty your life was right before me.  You have been a blessing to me, Jack.  I am richer sharing this life with you.

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The real change needed to  take place in my own heart, my sweet boy.  And I am so glad that it did.  Thank you for being patient with me.  Now instead of worrying for the future, I look forward to what new things you will show me.  I am excited to see who you will grow up to be.  I am so privileged to be a part of your unfolding life story.



Thursday, May 19, 2011

Red Flags

When I was pregnant with Jack, we had our red flag.  At our 20th week ultrasound the radiologist noted that Jack had a "dilated renal pelvis".  This seemed like an odd comment given that everything about his little body, including his kidneys measured within normal range.  The recommendation was to follow-up with a ultra sound of the baby's kidneys to make sure they were functioning properly at 6 weeks.  I just about fell out of my seat in my practitioner's office when she casually pulled a file from somewhere and informed me that one marker like this could indicate Down Syndrome.  Before my stomach could come back up from the pit, she started talking to me about my options of terminating the pregnancy.  Upset is not an accurate word to describe how I felt.  Surprised.  Angry.  Outraged.  Hurt.  Terrified.  No.

Later, I remember coming up the stairs of our house to tell Rob about my appointment.  I burst into tears and remember saying how I couldn't handle something like this on top of my Dad's new and fatal diagnosis of Pancreatic Cancer.  So, we convinced ourselves that she was making too big of a leap.  That this simply wasn't the case and I pushed it to the furthest corner of my mind.  I requested a second ultrasound but since I did not want put the baby at risk by doing an amniocentesis  there was no way to know concretely whether he had Down Syndrome or not until Jack arrived.  They did look for some of the soft markers such as heart defects and larger spacing between the lobes of the brain but nothing really stood out.   Somehow, I think I knew.  Every time I would look at the ultrasound photo on the fridge, a worry would stir within me an I would pray.  Please God, let the baby be okay.  Don't let him have Down Syndrome.  Can a person hold their breath for 20 weeks?

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Maybe for 18. Jack was born 2 weeks early at 11 pm after I had laboured for 2 days.  He was born at home as was Levi.  There is only one word to describe Jack's arrival into the world:  beautiful.  I remember pulling him to me only moments after he was born and looking into his wide, dark eyes.  He was a strong nurser from the start.

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A flash of recognition hit me it seemed like I stopped breathing.  As the midwives took him away to do their examination of him, I could hear them talking quietly amongst themselves.  Rob and my sister-friend where with me and I wanted so badly to ask them if they had seen it too.  Did they glimpse the secret Jack had been keeping from all of us?  But I was afraid that if I voiced the question than my worst fear would become a reality.  Then they approached me with serious faces and gently expressed their suspicions that Jack indeed had Down Syndrome...wide eyes, lower ears, deep crease in the palm, spaced big toe.  These things all seem so superficially unimportant, don't they?  Before they could finish, the tears came as a wave splashed from my heart to my head and I remember saying "I know already, I know".  I knew the moment I laid eyes on him. You look so much like Jasmine when she was born, but isn't there something more in your eyes, in your tiny nose?  Jack was a beautiful baby.  Blond fuzz on his body and head, chubby fingers, ruddy cheeks.  I am told that people with Down Syndrome often look more like their families than other people with Down Syndrome.  With Jack this is very true.

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How wonderful triumph and the exhilaration of meeting Jack for the first time can coexist with such heart-break and fear, I will never understand.   And so began a long period of mourning and celebrating this child I love fiercely but wanting so desperately for it to be different.  I prayed over and over for God to do a miracle and to take the Down Syndrome away.  It wasn't fair for Jack to come into the world with such a heavy label and a long list of things that were wrong with him.  The clearest thoughts that defined this time were:

This wasn't supposed to happen.

I do not think I am strong enough to do this.

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Somehow, Jack coaxed me out of the corner with his gentle yet firm grip on life and desire to be loved.  God gave me strength to move through this day and the ones that followed.  My thoughts became: He is so beautiful.  He is mine. Yes.  How do I go on from here?

I know that this leaves the story hanging but I think I will leave this post here and carry on tomorrow with the rest.  Please bear with me.


Wednesday, May 18, 2011

Happy Birthday Daddy

Last week we also celebrated Rob's birthday.  We stretched it out over the week with cake and singing on Tuesday to presents and hugs on Sunday.
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There were other photos I could have put up but this one says it all.  Levi: funny-faced joker and camera avoider; Jack the mischief making monkey who is about to do something to get my beautiful and tender girl's attention.  Rob of course looks amazingly Rob:  strong, caring, hard-working Husband and beloved Daddy.
We love you.  Happy Birthday week.

Sunday, May 15, 2011

Art Exhibit

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I entered the painting I did for Levi into a juried art exhibit at the Orillia Museum of Art History and it was accepted!
If you are interested in dropping in to see the exhibit, here are the details.
Orillia Museum of Art & History
Landscape Exhibit
Running May 17th to June 24th, 2011
The open house is Tuesday May 17th from 7-9 pm.  All are welcome.  This is when they will be handing out some prizes.  I am just happy that my painting is on display.  We are planning on taking the kids that night.  If you would like to join us please come, it is open to all.
This is a very exciting event for me.  I am gradually getting back to doing some art again and it is nice to begin to connect with other artists and events going on in the community.  Having my painting accepted is well needed affirmation in this regard!  Maybe I will just quit my job and start to paint!

Friday, May 13, 2011

Remembering Dad

Dad and Jenn wedding
This week marks the first year anniversary of my Dad's passing.  He was one of the most precious gifts in my life and it has been difficult to say goodbye.   He was my Barnabas, a strong encourager.   As I walk through this sometimes challenging journey of motherhood and raising a child with special needs, I try to hear his voice telling me to celebrate, not to analyze too much and to open my eyes to the rich blessings before me and an exciting life uncharted.   A hard working and loyal family man, he embraced the important things in life:  loving deeply and living fully no matter what the cost or difficulty.  He has left a lasting impression on my life and the lives of my family.
The pain of missing him sometimes comes with such force that I am swept off my feet.  I wonder how much longer grief will come to visit?  But on the many days when the sun still shines, I am also gratefully aware of the seeds of  love and care my Dad tucked into me while he was yet living.  These things continue to grow in me and are shared with those I love and cherish.
Thank you Lord for the gift of a loving father.

Happy Mother's Day

Happy Mother's Day to all of you!  A fellow Mama to a babe with Down Syndrome asked us to submit a photo and answer the question:  What do you wish others could know about Down Syndrome.  Here is the link to all our answers!
This day has been great.  Beautiful weather.  Rob and the kids surprised me with hand made cards and a bracelet put together by the kids.  Waffles and fruit for breakfast with hot coffee...mmm.  I thought they were leading me outside to receive some flowers only to find a new coaster bike with a seat up front for Jack to ride!  Jack and I will be riding in style now!
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Of course we had to test ride it right away.  Don't you love the handle bars?  It makes me laugh every time I look at them.  So classic.
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Have I told you lately how much I love this guy!  He keeps bringing the fun back into my life when I get too serious.
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We played on the new equipment at Tudhope Park.  The kids loved the "Tornado" and Jack was all about the slide.  He can really climb up himself.  He's just like the other Mansfields--a crazy climber.  I experienced what I have so many times before with Jasmine and Levi:  other mother's deep inhale of breath as Jack climbs the apparatus on his own.  I was there spotting of course!  I think people are surprised when I tell them he is two.  He looks a lot younger and they probably think I should be giving him more support or not allowing him to climb at all.  But what fun would that be? IMG 1993
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And of course sand is an all over body experience.
Hoping your Mother's Day is as sunny and full of love as mine has been and we are only half way through!

Thursday, May 5, 2011

Glaucoma Update

Still struggling to get pressures under control in Jack's right eye.  I have been discouraged lately and when this happens, I tend to pull inward and go silent.  It looks like we may be headed to another surgery as pressures in Jack's right eye go up despite everything we are doing.  He is on an oral dose of something called Diamox that he takes three times daily.  It is supposed to really help take the pressures down, but it also takes away his appetite and can slow his growth over the long term.  Our boy is small as it is and doesn't need anything to discourage his growth.  Even still, yesterday his eye looked hazy at the end of the day.  And every time I look in his sweet face I am reminded something is still wrong by that ever-dialated pupil.  It has gotten smaller but is still not reacting normally.  I am going to keep watching but I may have to call them to say we need to come down to see the doctor before the end of the month.


On a good note, Jasmine and Levi will be performing the Music Machine "reinvented" tonight with their school and tomorrow for Grandparents Day.  I will post some photos soon.  Looking forward to those sweet little voices sing of God's gentleness blowing through the trees.

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