I love children. May I say it again? I love children. If you live within 50 miles and you want us to babysit for you… let’s work out the dates! Need a break? Call me – I love it. I’ll love them. They’ll think Deacon Tom is fun and crazy. I often tell young ones that it’s ‘Walk Backwards Day.’ And they love doing it at the mall – with the funny deacon leading the way.
And tonight – just an hour or so ago, I was having chocolate pie with one of God’s miracles. Her name is Alex. She’s seven years old. There is something special about her… well, there are special things about her sisters and mom and dad and grandma… but it’s Alex that I want to tell you about. She is an Advent Gift to Deacon Tom and to many others. If you know Alex – you can whisper that Deacon Tom has a crush on her. Would you like to know what all this is about? Why not let her mom Kerry tell you about her? This is a true story. The words that follow here are written by Kerry. As follows:
It took the third pregnancy test to find out I was pregnant. My husband and I were filled with joy at the thought of a baby. We were young and this would be our first child, but we were thrilled. At four months along, after a routine blood test, I found out something was abnormal. I was told I would need to go to a perinatologist the next day to receive genetic counseling and an ultrasound. I was scared and shocked, thinking why do I need to go the very next day, to a doctor far away from where I lived. It must be serious.
So I didn’t go to work the next day, but to see this doctor, specializing in high risk pregnancy. We found out first, that she was going to be a girl, and second that she had an omphalocele (intestines on the outside of her body.) The doctor looked at me and my husband and told us that most people would choose to terminate the pregnancy at this point, because she would likely have other birth defects also. We didn’t have to look at each other to think about it or make a decision. The words out of our mouths were, NO. We loved her so much already.
In the coming months we would have 19 ultrasounds, lots of doctor visits, decorate our nursery, and try to prepare for what was in store for us as new parents. At 32 weeks pregnant, at a routine doctor visit, it was discovered I had preeclampsia. I was put on an air evac and sent to Good Samaritan Hospital in Phoenix, AZ. Also home to Phoenix Children’s Hospital, which had an incredible neonatal unit. After kidney failure, two blood transfusions, and four days of trying to hold her in, the inevitable happened.
Alexandra Anne was born on February 11, 2001, 7 ½ weeks prematurely. I barely got to peek at her before she was rushed out of the room. She underwent surgery to repair her intestines a few hours later. She was on an oscillating ventilator for the first two days and then spent 14 more days on a regular ventilator. We did not get to hold her until she was 11 days old. The doctor discovered that she had what is called Beckwith Weidemann Syndrome. They could tell by her large size and her large tongue. She spent a total of 49 days at Phoenix Children’s Hospital. She came home on a feeding tube.
She has an ultrasound and blood work done every three months to look for tumors on her kidneys and liver, which is another complication of her syndrome. She had a tongue reduction surgery done by a craniofacial team in September of 2007, because of problems with her teeth and jaw.
It turned out great after two weeks of a hard recovery. She still has obstacles in front of her, but she will prevail. Nothing is impossible for this child.
Alex has been through more in her seven years of living than most people go through in a lifetime. She is amazingly strong, beautiful, smart, and loving. I can’t say enough about her. She has shown us what life is really about. It is about living. There are many hard things that come our way, which we don’t expect, or that don’t fit into our comfort zone. There are times when children are conceived when we aren’t expecting it and there are children that are conceived that aren’t what society perceives as “perfect”. They are a treat though. An unexpected gift God had planned for us. We all deserve life. I would never be the person I am now without Alex. I wouldn’t trade her for the world. I am glad I chose life, and even through all the hard things she has been through, I’m sure she wouldn’t trade reading, riding her bike, playing soccer, going to the mall, or being a big sister for anything either. I know, looking at her smiling face every day that she is happy we chose life too.
Well dear friends – I probably would have liked or loved Alex even if I hadn’t heard this story.
But you might guess that Alex is a pretty special young girl and she probably knows that Deacon Tom is a good prayer (and teasing) friend. I like to make her laugh – and she has an infectious laugh. I hope this December column with Alex’s story written by her mom Kerry helps you appreciate the children in your life. And that you know that God has a plan for each of us. This sort of makes my Advent this year. Life – God’s life – What a gift!