Saturday, August 30, 2014

3 Years Ago Doctors Dropped a Bomb

 
Three years ago today we heard words you never expect to hear at an ultrasound, "There's something wrong with your baby."  Three years ago we began a roller coaster of research and doctors and ultrasounds.  Within a week we had met with specialists who explained that our yet to be born son's spinal cord was sticking outside of his body (spina bifida), that it was just a matter of time before his brain developed too much fluid (hydrocephalus), that both his feet were bent and twisted (clubfeet).  Words like disabled, paralyzed, wheelchair, permanent brain damage, and abortion were thrown at us through the cloud of our grief and worry.  "I'm sorry," was repeated over and over by doctor after nurse after surgeon. 

I process things by writing and started this blog right away, keeping it private at first.  We began searching out a community of individuals who had traveled this path before us and discovered that few, if any, had blogged about the journey until their child was a few years old.  I resolved through my tears that I would share our ups, downs, fears, joys, and life online.  I had already been blogging for years about our family's homeschooling journey and beginning another blog was easy and familiar. It was one of the few familiar things during that time.

There were ups and downs during the rest of the pregnancy but an underlying feeling of peace.  We knew that God had created Mason and that this was no surprise to Him.  We loved and looked forward to holding our son and getting to know his personality.

 
Mason is now 2 years and 7 months old.  Our family has dived deep into the world of medical needs.  There have been surgeries, fourteen of them, mostly on his brain, but also some on back, legs, and even bottom.  We navigate the waters of appointments and medical equipment and insurance companies.  Some of the things we heard those very first days after diagnosis have come to pass but many more have not. 

You can look at the bare facts - paralyzed, wheelchair, disabled, will never walk, cannot live without the lifesaving brain shunt that has failed six times already, a lifetime of surgeries ahead.  Those paint a picture in gray that seems dark and sad and hopeless.  It is an incomplete picture, woefully inaccurate.

 
As you get to know my son Mason you begin to see a vibrant world painted with colors - joyful, smart, bossy, loving, determined, alive, thriving.  Mason is a child full of personality, a child who just happens to have some physical challenges.  Yes, they will shape him.  They have shaped our whole family to be more aware, more patient, more in awe of God's creation.  Mason tackles life head first, finding a way to do what he wants, painting his picture in broad strokes of color - especially orange.  He loves orange!

 
If doctors paint a grim, gray picture of your unborn child's life with Spina Bifida or other diagnosies - hold on to hope.  God's picture is so much brighter and awe-inspiring.  Your child is not broken, a mistake, an accident.  They are God's creation lovingly made.  He has a plan and a purpose for your child.  There will be hills and valleys along the way.  It will be the adventure of a lifetime!

15 comments:

  1. What a beautiful post about a precious boy! I just love his little orange glasses (and, of course, I'm partial to that red hair too!)

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  2. This is beautiful, Tristan.... I'm sharing it. This is such a testimony to the holiness of LIFE... and your sweet Mason is such an amazing gift.

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  3. Lovely. I think that's why the diagnosis is so hard. You don't KNOW your child yet. And doctors can say shunt/surgery/catheter/wheelchair, but they can't say cute glasses/loves Mr. Rogers/plays the guitar/cute as a button. Maybe if we heard those other things on diagnosis day, it wouldn't be quite as painful.

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  4. You are an inspiration! I can't believe how fast those three years have gone. It feels like he was born just yesterday! It is beautiful to watch God's hand on Mason throughout his life. Thanks for opening your family and sharing your wonderful story!

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  5. Awesome, awesome, awesome post! Did I mention this is awesome? lol I loved it.

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  6. I am so glad that you have taken the time to keep this blog up. I love praying for Mason and your beautiful family. Tristan, you give hope and courage to the many moms and dads walking through life's more challenging situations. Thank you for showing the beauty in these challenges, because there is beauty and a lot of it. You have amazing strength!

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  7. Thank you for sharing your story. Thank your for the pictures of that infectious smile. Love to see it. Makes me smile!

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  8. What a wonderful post. 25 years ago we were told that our son would be profoundly retarded and paralyzed. We were told to abort him. We said we would take what God gave us. He is very brain injured but not retarded. He has lots of balance issues and low energy but he can walk and run. We are so blessed.
    Blessings, Dawn

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  9. Mason radiates such joy! And it's so great that his favorite color is orange, bright, vibrant, joyful orange! So perfect! And so perfectly a part of your family. God bless!

    Irina

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  10. We just love our little blog friend Mason. Thank you so much for opening your heart to us. Has he discovered that his hair is his favorite color? Or is orange his favorite color because of his fabulous hair? I still cannot get enough of him in those glasses. Too cute!

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  11. I'm glad that you can look back on diagnosis day and the time since then, and see all the joy and colour.

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  12. Thanks for sharing this, Tristan. I love the pictures of Mason and the love that spills out onto the page from your words. I'm sure your journey will give many families hope as they are confronted with similar diagnoses.

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  13. Three years already? How the time has gone! I remember when we were srill waiting and praying over his delivery. Such a precious blog post today, and an uplifting one for parents facing medical decisions for their own babies.

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  14. I am someone who just stumbled upon your blog and need to tell you how inspiring you are ot me. I am much older, have seven kids (four currently serving missions right now) and when I am feeling a little overwhelmed , I love to read your words. You and Mason are inspirations to many. You are a beautiful writer and I thank you for your words. You are a wonderful mother and a choice daughter of our Heavenly Father. I am sure he is well pleased with you....

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