Just like every other kid

I love seeing Jack run around with his brother and sister.  He has Down Syndrome and he is just like every other kid.  His face lit up when we first entered the cow barn.

The allure of riding the John Deer tractor with big brother...

And the rush of driving it himself.

Good friends and kittens to snuggle.

Running with a puppy on his leash.  I am still trying to get the hang of taking photos with the iphone but they were moving fast!

Don't forget the bunnies and straw filled hair.

Followed by happy exhaustion.

LIfe is full of good things.  Worry not for tomorrow for tomorrow has enough worries of its own.  Holding onto the joy of this moment!

 

 

Georgian Bay

I don't know why I am struggling so much with the idea that Jack will be heading into surgery again in a week, but I am.  We thought it would be a good idea to take advantage of some good weather and took off to camp over night on Georgian Bay this past weekend.  It was good for my soul to be surrounded by such natural beauty and make some more great memories with the kids.  The quiet also allowed me some time to talk to God.  I know that he is in control of the details.  It is the actual trusting where I seem to be weak.

The kids love going out there.  They are beginning to develop some paddling and some serious frog-catching skills.  Jasmine caught the one she is holding with her hands.  Levi is a joker laughing himself silly as he actually manages to blow a floating bowl across the pond to be retrieved.  Daddy is game for fun and Jack discovered that his hat and sandals make good water toys.
Blue lake and rocky shore, I will return once more...
...faith is in the coming.

Waiting for the healing

What do you do when you are holding out for a miracle and it seems like there is still another step to the healing?  Just came back from an update with the Opthamologist for Jack's Glaucoma.  I knew going down that his pressures in the right eye are still not under control.  But they were at 38 psi when the normal range is 10-15 psi.  We have reached crisis point again and the doctor has booked surgery in 2 weeks.  When he was a baby you could tell his pressures were going up because his eye actually stretched and became bigger.  Now that he is older it is harder to see.  But since his laser surgery in February his right pupil has been dilated and slow to contract in the sunlight.  This has gotten better but I think the high pressures are keeping it from coming back to normal.  So, I knew what the answer was going to be today.  My head was ready but my heart rebelled.  It is just not what I want.  I don't want Jack to have to undergo another more invasive surgery.  If only it could be me and not him.   Didn't God make a promise? The final verdict is surgery booked for June 14th.  It will be a 3-4 hour procedure where they physically put in a plastic tube to drain the fluid from the eye when it is too inflated.  There are many risks of scarring, difficulty and ultimately failure and needing to do it all over again in 5 years.  There will be many more follow-up appointments and monitoring.  But what else can we do but walk through?

Here is the link to the Sick Kids Paediatric Glaucoma and Cataract Family Association where they explain the procedure and the possible risks.

http://www.pgcfa.org/kb/entry/154/

If hope is in the hoping and faith is in the coming,  Lord I come.

Wordless Wednesday

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?

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.

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.

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.

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.

Love,

Mommy

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?

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.

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.

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.

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.

 

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.

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.