Wednesday, February 8, 2012

I Love A Tubie

It is Feeding Tube Awareness Week.

I didn't even know there was such a thing, until I met my sweet internet friend Kate. Kate and I met on a board for pregnant mothers with babies due in November 2009. There are several women on that board whom I have a special love for, and about 50 of us have stayed in touch through Facebook. But Kate and I speak semi-regularly, we've opened up and shared stories about growing up with overprotective, oddly-protective parents and other silly childhood stories. But we've also connected over pregnancy wonders, prayer requests, faith issues and occasional my-children-are-driving-me-nuts moments. The Lord even used her to bless me abundantly which can be read about here and here.
Meet Kate, Jack, Charlie and her husband Jared

From the very beginning I was drawn to Kate by her strong faith, her love of Christ, and her and her husbands desire to honor and glorify Him. I also felt a connection because our kids are around the same ages. It helped, too, that her father is a well known baby delivery doctor (you like that technical term :P) and she was able to give tons of "call your doctor" or "just pay attention to it" advice while we were a bundle of pregnant emotions and nerves. It didn't take long, however, to realize there was something more to Kate, to her story and her family, that would forever cause me to admire her, to aspire to be more like her.

Both of Kate and Jared's children have medical conditions, that have resulted in tons and tons of trips to the hospital, several surgeries, strict feeding regimens and all kinds of other things I couldn't even begin to expound upon. We all make sacrifices for our children, but she is one of the most selfless people I know. Jack was born several weeks premature and was unable to nurse. For the first year she pumped on a very strict (every 3 or maybe 4 hour) schedule. Even at night.

Now I nursed Micah and pumped for daycare until he was 15 months old, and I have to tell you, pumping is extremely stressful, not at all comfortable, and very very exhausting, challenging, and for me overwhelming. A constant wonder, worry and fear as to whether there would be enough for the next day. I remember her once telling me it was a family affair, that her sweet husband would get up with her in middle of the night, feed Jack his bottle and they'd watch a sitcom on TV together while she pumped {Um, swoon. For any new mother, that is extremely romantic, I thought it was such a loving and selfless gesture when my husband would change the baby and bring him to me, this, well this is self sacrifice like I'd never imagined}. Jack suffered from what they thought was severe acid re-flux, they tried different medicines, regimens, and even a surgery to help, but it always came back. Then Charlie came along with similar symptoms, though more severe and through a series of tests, hospital visits and more surgeries both boys now have feeding tubes.

Jack has a J tube, for occasional use, but Charlie's situation is more severe for which he has two tubes, a J tube and a G tube. He is unable to eat or drink anything, with the occasional exception of some puffs. He gets all of his nutrients and nourishment from his tubes which are on what is called a continuous feed and feeds him about 20 hours a day, he has to wear a backpack around during the day to hold his food.

Having a child who can't eat makes meal times and certain holidays difficult. But Kate and Jared eat together each night as a family, and have gone to extra lengths to make new holiday traditions, because it's about quality time together, not food. Charlie prays with his brother before each meal, and then sits pretending to eat, playing or watching as his family eats. I want to encourage you to visit her sisters blog where she gives specifics about the current diagnosis, tubes and tubal life.  I don't want to pretend like I know what that's like, what that is about, but I do want to tell you what I know about these little boys, about this amazing and inspiring family.

Jack is a lot like Owen, in that he is strong willed, clever, learning, growing and maturing a little everyday.

And he is a good big brother

Charlie is a survivor, he's adapted to his situation, he is a figure-outer and even mastered using a spoon even before children who can actually eat with one. Charlie is brave, ever trusting and loving.

What I know is that these little boys are a blessing to their parents, medical anomalies and all. 
That they are real, they are just like my boys who like to:
make obscene noises
and find places to hide. 

What I have learned, is that people can be cruel. That people may not realize how insensitive their comments, fear, confusion can come off to the mother of a miracle child. I've learned to have compassion in all situations, to teach my boys how to be compassionate and loving to people different than them. That when I think I'm having a bad day because of little details in life not going my way, there is someone across the country sitting in a hospital fighting for, being an advocate of, their child/children.

I've found my faith in miracles reaffirmed. Not in our miracles, but in God's miracles, in His ability to provide the love, patience, resources, and knowledge necessary to help these boys live their lives to the fullest.

Most people in their situation might find themselves wishing or wondering "what if they'd been healthy?" But not Kate and Jared, she's told me on a number of occasions that she wouldn't change a thing, that she loves them just as much as I love Owen and Micah, that their personalities are priceless, and have been shaped by their struggles.

Most people in their situation might worry about money or health when considering whether to have more children or not. But not Kate and Jared. They are currently in waiting for William their third little boy! He's due in about ten weeks and is already being a little stinker, demanding lots of attention from his mom and dad as they keep him safe inside as long as possible. They trust the Lord's plan and for Him to continue providing the resources they need for their growing family. They believe that each little life is a miracle and are honored to be the parents of two, almost three, beautiful boys.

Their strength and faith is encouraging, her friendship a blessing, and these little boys are beyond precious.

So YES, 
Do you? 

Feeding Tube Awareness Week is about making people aware of it, answering questions and giving knowledge. If you have any questions at all, please feel free to leave them here, or comment and I'll send you her email address, I know that she would love to give you any information you are interested in!

I'd love to hear your stories, about people you know who are tube fed, children who are a blessing in your life despite, or because, of their medical challenges.

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