I sat behind a beautiful little girl at Mass last Thursday. It was the feast of the Annunciation when we celebrate the Incarnation of the Savior and recall God's great gift to Mary whom Gabriel calls "full of grace" because she was spared from original sin. I've seen this young one many times before, but don't know her name. She has long blonde hair, blue eyes and a peaches and cream complexion. She also has Downs Syndrome. The innocence and goodness that radiates from this little child almost creates a glow around her.
The tragedy is that our world considers these little ones a curse and about 90 percent of those affected by Downs are murdered before their birth days. So when I see testimonies to these precious children recognizing what gifts from God they are, I want to share them.
Little Nella Cordelia was born in January. Like all parents who dream for their children, her parents had to mourn the loss of their expectations and plans for the dream child and create new ones for the real child. Judging from her mom's website, she recognizes that it will be an exciting journey although different from the one she expected. Visit Kelle Hampton's website to share her beautiful birth story. If you know someone who gets the diagnosis of a handicapped baby in utero, share Kelle's story and assure them that God doesn't make mistakes. Life is hard, but true love makes it a joy.
Do you mean the Feast of the Annunciation (or Incarnation) last Thursday? (Some people do confuse Immaculate Conception with Annunciation, thinking it refers to the Virgin conception/birth of Christ, rather than the conception of Mary.) Just clarifying. :-)
ReplyDeleteImagine, living with a sinless person!
ReplyDeleteThanks for the correction. I fixed it.
ReplyDeleteJust a slip. I'm very familiar with the Feast of the Annunciation. My name is Mary because I was born on March 26th and I was telling my grandchildren that it was only nine months now until Christmas.
My wife and I gave birth to our son, born with Down Syndrome and a heart defect, in early 2009. When he was born, parenting him was much the same as caring for any baby. He progressed well developmentally with therapies. But, because of the extra work of his little heart, he struggled to gain weight. Every activity burned calories and exhausted him. At just over 6 months old, we finally got him to the pre-surgery goal weight of just 11 pounds. When we took him in to the hospital, we watched as the nurse carried him down that long hallway to surgery. He looked back at us over her shoulder. That was the beginning of 11 long, frightening and very emotional days. The surgery itself went fairly well. He was moved to the intensive care unit & the day after the surgery, he was doing so well that they attempted to remove his ventilation tube. That’s when things changed. He immediately went into cardiac arrest. As they say in the hospital, our son had “coded”. We watched as he underwent 20 minutes of chest compressions & CPR before they were able to resuscitate him. Everything we had been through, all of our hope was now in question. There was risk that after being gone for so long, his brain and kidney function may have been compromised - it now had to be monitored very closely to look for signs of damage from oxygen deprivation. Additionally, due to the compressions, a moderate leak had formed in one of the heart valves they had repaired. They had to put him back on the breathing tube. Within a few days of roller coaster drops in blood pressure, and struggling with the fact that his little body, now barely above 10 lbs, became dependent on pain meds, he eventually stabilized and they removed the tube again. This time, after about 30 minutes, his lungs filled with fluid & his oxygen saturation began to plummet. After about 2 hrs of urgent effort and medication, he finally came around. The doctor later told us that he knew if he didn't try to get past that hurdle this time, there was no guarantee that our son would have ever been able to come off the ventilation tube. We thanked God for his foresight. There were more ups and downs, and it seemed like an eternity of watching hospital monitors and listening to doctors as they talked quietly among themselves, in hopes of hearing some glimmer of hope when, 3 days later, with no signs of lingering organ damage, they finally deemed him well enough to move out of the ICU and over to what they call the "floor". From there, things improved quickly. He took up nursing again, as though he had never stopped and we were released within 72 hours. That was August 2009. Tonight I’m writing this, having celebrated some great milestones: our son's Baptism last Easter vigil, his coming second Easter (on Sunday!), his first Thanksgiving, his first Christmas, a GREAT first birthday. Today, he is growing and getting stronger. He has reached 17 pounds. He sits up on his own - and he’s a real chatterbox! There are many challenges ahead & we are happy to be regulars at the local Down Syndrome group events. Most importantly, despite the leaky valve, the doctors are optimistic that he won’t need another surgery. Please know that having a child with Down Syndrome is not a curse. Surely, there are challenges - our boy is nowhere near walking at about 15 months old, for example. However, the blessing of having a child so joy-filled outweighs any challenge. I look forward to the excitement in his eyes when I take stargazing for the first time. I can't wait to fly kites with him and already we are enjoying his strong hugs. Down Syndrome is what you make of it - if you see it as a curse, it will haunt you. But if you face it, that cultural construct crumbles and you are left with the most beautiful, joyful, loving child you can imagine. Bless you for your post. Have a fruitful Easter!
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