Nickelpicklemama's Blog

October 5, 2009

Story Continued

Filed under: Uncategorized — by nickelpicklemama @ 1:25 pm

My brother Pete and his wife Julie had just been told that their newborn son showed signs of having Down syndrome. My parents and I were with them in the recovery room, doing our best to comfort them. At this time, rather than dwell in their sorrow, they both had just one request:
“Please,” they said, “We just want to see our baby.”

Due to his oxygen requirements, Peter Jr. was in the Special Care Nursery. Julie and Pete were assigned a room on the postpartum floor, and were then allowed to go into the nursery to see their boy. How devastated they must have felt. Just hours before, their son was theirs to hold and cherish, and now, he was attached to both oxygen and an IV pump. Stripped to just his diaper, monitor leads were attached to almost every part of his body. Pete and Julie were both crying, trying to find a spot on their sweet baby that they could safely touch without alarm bells blaring in reaction to the intrusion of their loving touch.

A doctor and nurse approached again. “See, look here,” they said, pointing to Peter’s eyes and tiny ears, “and note his low muscle tone and the extra skin on the back of his neck.”

I now know that both Pete and Julie were not at all interested in that doctor’s observations. What they wanted, ALL that they wanted, was to once again hold their baby in their arms. They wanted someone to point out how adorable he was, how sweet. Not one staff member commented on the beauty of this child, nor on the joy his parents felt at his arrival. Rather, Julie and Pete heard a litany of warnings and risks: heart defects, thyroid problems, abnormalities of the intestines, seizures, respiratory problems, high susceptibility to infections, high risk of developing childhood leukemia and obesity, mental retardation, growth retardation… The list went on and on.

At one point, my brother looked at me, desperation heavy in his voice, and said, “Call Mike and Paul, I need my brothers here. Now. Please tell them to hurry.”

My parents and I rushed to “gather the troops”. We called my other two brothers as requested. Julie’s parents were already on their way back, as well as several of her six siblings. Before long, Julie and Pete were surrounded by loved ones. But not one of us could do a damn thing to take away their heartache. It was a very long night.

Dawn broke after that sleepless night, and things were a little brighter. Peter Jr. was doing well. The echocardiogram of his heart had found no heart defects, and he was requiring less oxygen. He had improved so much that the doctors allowed Julie to attempt breastfeeding; though they warned her that it would likely be unsuccessful, as babies with Down syndrome frequently have trouble due to their small mouths and low muscle tone. Apparently Peter Jr. missed that memo; he took to breastfeeding like a champ. Pete and Julie once again had those mile wide smiles I had missed so desperately the day before.

I’ve often commented that Julie should receive an award for her courage and strength in the days following Peter Jr.’s birth. She was incredible, and I am exceedingly proud that this amazing woman is a part of my family. She has not slowed down either; oh no. Peter Jr. is about to turn two years old, and she continues to be his warrior and his advocate. Her love for her son exudes boundlessly, and as her reward, Peter Jr. saves his biggest smiles for her exclusively. Theirs is a relationship that cannot be described with mere words.

My brother Pete is, as I’ve always known he would be, one hell of a daddy. Peter Jr. has brought out a side of him that I never knew existed. With his son, my brother is gentle and playful; patient and loving. It’s incredible to watch. He has insisted, from day one, that no one treat Peter Jr. any different than they would any other baby. He plans to show, and give, his son the world. And thus far, he’s doing a darn good job at it!

And Peter Jr. There just aren’t enough words to describe this incredible little boy; he is one of God’s most impressive works. He is funny and joyful, sweet and loving, mischievous and spunky. He’s healthy and happy, and his smile lights up a room. He is an absolute joy, and we all wouldn’t trade him for the world.

I wish I could go back to those dark days when we first learned of his diagnosis. I’d tell everyone, myself included, that Down syndrome is not something that need be feared. That little extra chromosome has brought to our lives more happiness than we could have ever imagined: it brought us Peter, and he is perfect just the way he is.

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