Surgery +1 day

We got out of surgery around 12 noon yesterday.  Jack came through the anesthetic really well.  He was groggy and sleepy and wanting to be cuddled for the rest of the day but otherwise not in too much pain.  Mama was so relieved to have it over with that I had no problem with some extra cuddling and snoozing together.  This morning Jack was up at his usual time, not slowed down one bit.  He has been so good about keeping the eye patch on.

He and Levi have been having their usual fun this morning.  As I write, I can hear them pounding out a song to Jesus on the piano.

We will leave in the next few minutes to go back to Sick Kids to see the Opthamologist for our post-operative check up.  Jack will lose his eye patch and check his pressures.  I am anxious to see if the implant is working.  Amazed as usual by Jacks hearty recovery from all of this.  Praising God for small mercies.  We will let you know what the doctor says today.  Thank you to Grandma who has been looking after everyone for the last couple of days including me and to Grandpa for lending her to us.  Thank you to all of you who were thinking and praying for us.   You helped God's grace sustain us.

Yesterday the surgical waiting room was emotionally charged.  We were waiting with 2  other families whose children were having cancer removed.   We cried for one another as each family released their little one to the hands of the surgeons.  Jack was led through the doors in a little plastic car.  As he went through he turned with a look of panic on his face as he burst into tears.  Rob and I were helpless to respond to his fears.  It was necessary to let him go.  As we turned we saw other families still holding their children with knowing tears in their eyes as they waited to do the same.  It was a small space, so it was not hard to understand and share in what each family was experiencing for a short time.  Three years old with cute pig-tails on either side of her head was having her eye taken out because it contained cancerous tumours.  Nurses and social work staff were working hard to take as much of the fear of the unknown out of the process.  They were blowing bubbles with oxygen masks and talking about waking up with not a new ear or a new nose but with a new eye.  With tears in her eyes her grandmother shared that they would rather lose the eye than have the cancer metastasize to her brain.  Eyes still wet from leaving Jack, I wept for their suffering.  How is it that we live in a world where innocent children must go through things like this with no fault of their own?

I am grateful that Jack will not be losing an eye.  His will see.  He will live and love for many more years to come.  Pray with me that this little girl will do the same.  I am grateful for grace and strength and hope that renews itself each time I go to Him.

 

Surgery Today

We are leaving now for Jack's surgery.  He goes in at 8 am for a 3-4 hour procedure.  We need to be there by 6:00 am.  Please pray for him when you think of it.  We would like this to be the one that brings full healing.  We plan to stay down over night to see the doctors tomorrow and then will be able to update more later.

 

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