Heavy heart

Tonight is a hard night. I am struggling. My heart is heavy and aching. James may be deaf, or if not, extremely hard of hearing. He failed his hearing screen in the hospital twice. He doesn’t respond to loud noises. .We will have more audiological testing done at some point in the future to evaluate this. He makes very little noise himself. At 3 months, he is – of course – nowhere near his peers in development. He should be smiling and cooing and interacting with us. While he is frequently bright-eyed and alert, his interaction level is extremely low for a baby of his age. Seeing pictures of all of my friend’s babies at this age – cooing, smiling, interacting – while it makes me happy – it also makes me profoundly sad and anxious.

And then – every time I turn on the news or look at Facebook, I am reminded that somehow, this election has turned into an abortion debate. At a time like this in my life, seeing these stories of late term abortions is so hard on this mother’s heart. It has made me realize that the world hates babies like James. Oh sure, everyone loves his pictures on Facebook. Everyone talks about our bravery and strength in the face of such challenges. Everyone roots for James.

Yet, doctors encourage abortions for babies just like him. As if because he is handicapped, he is somehow a lesser child, not worth as much as a “normal, healthy” baby.

Will James ever contribute anything significant to the world? He will never discover a branch of science. He will never be a doctor or an architect or an artist. He will never make a contribution that people will see as mattering. He will always be handicapped, always need support and care.

Yet, he contributes to our family. His sisters love him. They are learning to be gentle with him, to be kind, to accept that we are not all the same, to understand illness, to understand what it means to sacrifice yourself and your life to take care of someone else. I firmly believe that they will grow up kinder, more compassionate people – in a world that definitely needs more of those people. Further, he has taught me to be kinder, more patient and understanding, less prejudiced and judgmental.

In fact, I would argue that babies like James bring light into a dark world. I am a better person for knowing him. His sisters will be better for having loved him. He is not broken or imperfect. He is simply himself, and he doesn’t know that he is anything less than anyone else. Because he isn’t.

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10 thoughts on “Heavy heart

  1. What a beautiful post! James will make an impact in the world in a unique way. He has already begun. All life is precious including his. Blessings to you!

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  2. Bravo. And love to your sweetest boy who is just living his own greatest life with his family showing him all the sights.

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    1. My trisomy baby touched my heart and changed me for the good more than anyone else ever had before, or ever will. In her three hours in my arms, I was given a rare gift of seeing God…His love…feeling Him intimately….when I gazed on her face. She was a direct conduit to Him. I would argue that these babies are more special than “normal” babies. They contribute more to the hearts they touch than the rest of us could ever dream of doing. They make us better people, kinder, more patient, more loving. They bring us closer to God, and closer to the ideal of living out His love on earth.

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  3. I am a doula and met you, Jim, James, and your daughters briefly at the NICU. I have wondered about you and precious baby James and tonight I committed myself to finding your blog. You all are blessed to have James and he is blessed to have you. He has a beautiful soul and you’re so right, “he is simply himself”. How many of us strive for that but never achieve it? How many of us spend our energy conforming to social norms and keeping up with latest trends? James brings light just by being exactly who he is, no pretenses. And every day you wake up and give him exactly who you are and that is enough for him. Thank you for sharing your thoughts. I think of you frequently and wish you well.

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  4. My heart goes out to you and your family. Every human life is valuable and deserves the same treatment and consideration as any other. Who are we to judge another’s worth or right to be alive in this world. James is special, loved, and deserves be treated no differently than any other person. In the three months he has been here look at how many people he has already affected and the lives he has touched. He is very blessed to have such a wonderful family.

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  5. Yes! Every single life matters and makes ripples in the world. We may only see the ones closest to us because we are in the water too, but we don’t know how far they extend and how they make an impact. James is a fighter and a defier of odds.

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  6. While I may quibble about the statement “doctors encourage abortions for babies just like him,” as an overgeneralization, I could have written every other set of words myself as a parent of a little boy born with Trisomy 18. The world is not a kind place for a medically-fragile child with any disability like Trisomy 18 and that unites us with a community far larger than one genetic condition. I think we all have our eyes open and our hearts widened by our little ones — and feel some shame at first, knowing we too were part of that world that didn’t “see” these often invisible-to-society babies. So I stand with you dear — all their lives are precious to us and change us forever. It’s hard for those who have never stood in our shoes to know how deeply we feel these changes and how they reorganize everything that came before.

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  7. The choice you made, to bring James into this world, is a powerful one. I don’t know your entire story, what ultrasounds showed, or what doctors told you or how they advised you. I can say, from my own pregnancy and birth experience, that choosing to have my own child was wonderful. I have no regrets. I also want him to know that. That I chose to bring him into my life. I was not forced to. I can only imagine that our world would be a bit better if all children, all babies, sick or healthy, came into this world knowing that they were wanted, feeling loved and supported for however long they bless us with their presence. Thank you for sharing your story, so many of us are hoping for good news for James, knowing he is loved beyond measure in your home.

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  8. People with disabilities contribute more to society than any doctor, architect, or politician. Unfortunately, most are just to blind to see this fact. Those of us who do have these precious souls in our lives understand it beautifully. Who better to teach faith, compassion, patience, empathy, and unconditional love than a person with a disability? There is no better teacher. I view the disabled not as a burden to society, but as teachers. They teach us how to love, how to care, how to be patient, how to be kind. They give us the opportunity to grow as human beings. If every persons grew up with a sibling with a disability, thing of how that would change this world we live in, if everyone had compassion, love, and acceptance in their hearts. Getting rid of these children via abortion is society’s loss, not it’s gain. I wish more people would realize this.

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