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

Welcome to our world

I have been working my courage up to do this for a very long time now. It has taken me 2 years to come to a place where I can embrace being a Mom to a child with Down Syndrome and begin to speak about the joys and the challenges with growing confidence. When Jack was born, it felt like my world was coming to an end. So many fears for the future. How will living with a disabled child impact our family, my marriage? Will this child be able to live life to the fullest? How could it be possible that we would be blessed with a beautiful new baby that was anything less than perfect?

There has been a lot of grief to wade through and a sometimes painful process of allowing God and Jack to right many of my own misperceptions. We did not know that Jack had Down Syndrome until he was born. There are reliable tests that can tell you a baby's likelyhood of having Down Syndrome but we figured that it would not change the outcome for us. I think that what I was really thinking was that it would never happen to us. The fear of having a less than perfect baby is so great. When terror strikes, the stats say that 92% of women who find out there baby has Down Syndrome choose to abort.

There have been huge challenges that I will hopefully be able to share with you as this blog progress and there have been some extremely stretching days for me but for the most part Jack has brought a tremendous amount of joy to our lives. I cannot imagine life without him. When I think back to when Jack was still in the womb. What would I have done if I had known? I understand the paralyzing fear that news like this brings and after having walked through the valley I want to say is that there is hope. Don't be afraid. Life with Down Syndrome is more than livable when you open yourself up to God's grace. Jack is an amazing kid. We are happy and blessed to have him in our family to love us and to show us a different way of living. One where we stop the comparisons and wait with anticipation for what God will bring out of each one of us in every moment; how to live fully without being afraid.