When Someone Suggested It Would Have Been Better to Let My Daughter Die

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My wife, Jessica, and I have been to the hospital more times than we care to consider. All that has come with great cost, but great benefit, too. I’d like to impart something. Not wisdom — I wouldn’t assume that much hubris — but at least experience, and perhaps understanding…

My daughter, Namine, was diagnosed with a life-threatening condition. There are, of course, varying degrees of what classifies as “life-threatening” today. Modern medicine has improved much, even over the course of the six years since Namine was born. But Namine has such an incredibly rare combination of birth defects that doctors predicted that she would not survive.

Of course I can’t tell you, with any great certainly, all you might expect. Birth defects vary between children, and even in the respective support groups we belong to, Namine remains unique. But I can share our experiences, and hope that you might take something from them…

Paul eiche the mighty namine

If your child is diagnosed with a life-threatening condition, you need the hospital’s involvement. You need the doctors’ help. Pure and simple, without it, your child will likely not survive. I know for a fact that Namine would not have.

I am a Christian. I believe in a loving God. I also believe that this loving God, whom I worship and to whom I pray, let my daughter be afflicted with compounding birth defects. In case you’re wondering, to me that’s the opposite of a miracle…

But I also believe in a God that works miracles. People look at Namine and say, “It’s a miracle that she’s survived!” And it’s true, it is a miracle, but not one without human involvement. I believe that God has worked through my daughter’s doctors in order to stabilize her.

You might think that I’m contradicting myself, but hear me out. I believe that doctors — and modern medicine in general — are a great help, a blessing from God, and a miracle, even if they don’t know it.

Doctors often believe they have all the answers. At least, they would have you believe they do. But they don’t, and knowing that is crucial.

When Namine was in utero, Jessica and I attended visit after visit at the hospital. Scan after scan, week after week, they kept finding more things going wrong in Namine’s development. Her legs weren’t growing. She had club feet. Her hips were dislocated. Her jaw was regressed. Her heart wasn’t developing correctly. She had worsening scoliosis. On and on and on, the bad news kept piling up and we were met with despair.

Paul eiche the mighty namine

Then came assurance from the doctors. But this was not assurance of a positive note, but of the opposite — she was going to die. This was not “We, the doctors, believe she might die.” This was absolute, unwavering certainty: if we followed through with the delivery, she simply would not survive.

Several times it was not merely suggested to us, but encouraged: abort. Abort. Abort. Spare her the lifetime, however short, of pain and misery. Even if she did survive, she would be in constant agony. Spare her all of that. Terminate the pregnancy. It would be a mercy, nothing more.

Jessica and I refused. Whatever life we could give her, however short it might be, we would not kill her. We believed that we would love her for as long as God would let us have her.

Paul eiche the mighty namine

Namine did not die. Whatever awful fate her doctors had predicted, it did not come to pass. Whatever miserable existence she was expected to have, she has surpassed it…

A former coworker once said to me, upon hearing of Namine’s birth defects, “It would have been better to let her die.”

At the time, I felt a rage I cannot articulate. But despite his tactless words, it is unfortunately the opinion of many — including doctors at our own hospital. So, in a strange way, I am thankful that he was heedless in shooting off his mouth. It has given me the uncomfortable opportunity to confront this unfortunate viewpoint.

Paul eiche the mighty namine

Namine is severely disadvantaged, that much is certain. She has needed surgery more times than we can count — I’m serious, we really have lost track of the number — three of them alone on her heart. There are difficulties beyond measure, were we to measure them. But we don’t, because while they are there, they do not define us…

We chose the difficult road, the one not recommended, and it is one we love every day.

Paul eiche the mighty namine

This post is a shortened version of one that originally appeared on Eiche Fam.

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21 Words That Perfectly Describe My Daughter With Down Syndrome

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In honor of World Down Syndrome Day (March 21, to represent Trisomy 21), I’ve come up with 21 words that describe my daughter, Willow, who happens to have Down syndrome. You might notice these words could apply to anybody. Which just goes to show, Willow might have an extra chromosome, but she’s not that different from you and me.

1) Beautiful

2) Stubborn

3) Goofy

4) Curious

5) Outgoing

6) Flexible

7) Opinionated

8) Happy

9) Mischievous

10) Persevering

11) Thoughtful

12) Cuddly

13) Loving

14) Crafty

15) Mobile

16) Strong

17) Unique

18) Intuitive

19) Tender

20) Mighty

21) Loved

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This post originally appeared on The Mighty Willow.

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How Cerebral Palsy Helped Me Bypass Trying to Fit In

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ryancp A few weeks ago, my teenage nephews were talking with their mom about the pressure they felt to fit in at school. They felt the way they dressed wasn’t cool enough for their school friends.

I immediately thought of my teenage years and how I didn’t feel the pressure to fit in with the other kids. I’m thankful that having cerebral palsy allowed me to follow my own path.

For me, not trying to fit in also allowed the times I was teased about having CP to roll off my back. The teasing was done behind my back by people I didn’t even know, so it didn’t bother me. When I would hear about someone teasing me, I would focus on God, who I believe blessed me with CP. I’d focus on my family at home who didn’t view me differently than they did anyone else.

I’ve never been (or tried to be) popular. Whether this is due in some part to CP, I’m not entirely sure, but I know that all my life I’ve tried to live as positively and happily as I possibly could.

Living with CP can stink if you let it get you down, but I think if you have a great support system, in my case family, they allow you to focus on the positive and not the negative.

In closing, I say thank you, cerebral palsy, for being a huge blessing in my life. You’ve allowed me to see the big picture and live life on my own terms. These past 35 years have at some times been tough, but I wouldn’t trade them for anything in this world.

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Why I Can’t Hate Autism

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Dear Autism,

Although we were formally introduced only three years ago, I have lived with you for seven years. We are intimately involved every day, but I hardly know you. I’m still trying to process how I feel about you.

I don’t appreciate your mysterious nature or the havoc you wreak, and I am dismayed that you are a larger obstacle for my son than we originally thought, but I can’t hate you.

I can’t hate you because you and Conlan are so inextricably entwined that I don’t know exactly where one ends and the other begins. I can’t wish you away because Conlan wouldn’t be Conlan without you.

You influence every aspect of his life — how he learns, how he communicates, how he sees the world, how he moves. I see your signature in his play, his expressions of joy, his focused and obsessive interests, and even his sense of humor.

I am angry at you, Autism, because you play hide and seek with my son. You hide him behind impenetrable barriers and force me to seek, seek and seek. I cherish the occasions when you step aside for a moment and let us experience an authentic and meaningful interaction with Conlan — a moment or two without scripting or perseverating, a moment where he spontaneously connects to the conversation or situation we are actually in instead of the one occurring in his world.

I’m amazed when you allow us to peek inside the world you share with Conlan. A few months ago as we walked into a hotel room, Conlan stopped in the middle of the room, transfixed by the window. “Oh, look, it’s so beautiful!” he exclaimed in awe. I looked at the window and saw that yes, it really was. The gauzy curtains sinuously danced in the air blown from the cooler below while the spotlights outside on the roof illuminated them with a magical glow. I never would’ve noticed, but he saw something special, and he was able to share it with us.

I wanted to freeze time, so we could enjoy that moment for a little longer. But then he discovered that same window offered an unobstructed view of the cars speeding by on the interstate below, and he retreated back into your arms. You closed the door on me and held his hand as he jumped and flapped as the cars whizzed by.

Your very nature is a challenge. You are an invisible disability, so people judge Conlan’s behavior harshly and unfairly. You aren’t a disease. You can’t be cured or treated — and you won’t eventually kill him — so you are a chapter in our lives that never ends. Over time our friends and coworkers — and sometimes even family members — become less supportive and accepting of our needs and constraints as you continue to command our time and dictate our activities.

My family, Conlan included, has sacrificed so much to accommodate you — money, time, energy, plans, dreams, tears. My career is the latest casualty in this adventure, and while that makes me sad and even a little resentful, my only real comfort is that Conlan is worth it.

Conlan

I accept that you are a part of my son, and I respect your eccentricities and conditions. But I am angry at you for selfishly keeping him locked away so much of the time. I’m angry that you are interfering with his education and functional development.

Can’t you work with Conlan instead of against him? After accepting you as part of his life with such grace, he deserves better from you.

I acknowledge that you are responsible for his unique way of seeing things and you are the reason he has developed a remarkable work ethic. You encourage his passions and give him the focus to memorize information he wants to keep. But you also withhold his language skills, confuse his sensory system, and obstruct basic functional capabilities like zipping a coat, handwriting and using utensils.

Can we make a deal? Just let go enough for him to function in the real world. If you would stop holding his words hostage and untie his motor skills, I’ll get on board with the obsessions and start stimming right along with him. With the right motivation I can jump and flap with the best of them. I’ll memorize all the Cars and Planes movies so we can run the scripts together. I’ll learn to speak Minion so we beep and bop back and forth. I’ll even paint his bedroom to be an undersea whale paradise.

I always tell Conlan I love him while I’m tucking him into bed at night. And I always hope he will tell me he loves me too. If he responds at all, he usually says, “Yeah,” while he watches his fingers flutter like a dragonfly at the corner of his eye. One random night when I said “I love you Conlan,” the dragonfly stilled and Conlan looked me in the eye, put his hand to my cheek, and said, “I love you, too, Mom.”

For more of those moments, Autism, I will do just about anything. I know I have to share him with you, but you also have to share him with us — more than you have been. If we work together, we can give our boy a fulfilling, productive, happy life.

And if you can’t get on board with that, know this: I’ll never stop fighting for a better custody arrangement.

 For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why I’m Thankful for Parents Who Have Their Children Vaccinated

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I learned a million strange lessons in doctors’ offices and hospitals with my daughter, Sammi, in the years that spanned cardiac surgeries, gastroenterology drama and everything else her little body gave her to manage. This mastery I had over her health — the details only I could have described — has never gone away. I’m vigilant, I’m well-trained, I’m fast-twitch muscles and marathon endurance.

This is why I panic at the thought of unvaccinated children.

When Sammi was 18 months old, she was in childcare just a few hours per week. She was under 18 pounds, miserable to feed and deeply, deeply beloved. She’d had ear tubes, a bronchoscopy, surgery to slice open the extra, troublesome arch of her aorta that had been choking her, and had her esophagus dilated. She was on anti-reflux medication. Her trachea, despite the surgery designed to free it, was at best 35 percent open.

Whooping cough could have killed her.

OLYMPUS DIGITAL CAMERA One day, I dropped her off at childcare to spend three hours working, and I got a call several minutes later with the news of her fever — 101.3. I picked her up, took her to the doctor and learned one of those sneaky lessons that never goes away, regardless of the fact that I’ll never need it again:

When your pediatrician sends your feverish baby for a chest X-ray, worry.

When the radiologist sends you to the lab for a blood draw before your baby even has her shirt back on, worry.

When the blood lab turns you away at the door and says your pediatrician wants you back in her office immediately, worry a lot.

Sammi had pneumonia. Her fever barely broke for days, the antibiotics gave her a horrific diaper rash, and her lungs were so wet and her constitution so weak that she lay on my chest in a sling and beat it slowly with her cold, sweaty hand, limply crying mama, mama, mama. I was right there. She was out of her head.

She lived through that pneumonia and another case a few months later, disconcertingly in the same lobe of the same lung. If that had happened one more time, there would have been another bronchoscopy to find out what was wrong with that lung. Thankfully, she never got that third pneumonia.

If Sammi had brought pneumonia to a friend’s baby who had consequently died from it, I would have been devastated and felt horribly, life-alteringly guilty, but I would know I might not have been able to prevent it. If an unvaccinated baby, whose parents were within their rights to refuse vaccination, had brought my baby whooping cough, my child could have died.

Sammi had just over one-third of the airway of a normal child. You couldn’t tell by looking at her. On a good day, she probably had to work harder for air than most people.  I’m not questioning the right of parents to refuse vaccines for their children, but the fact remains that the consequences to babies like Sammi are real.

Is she one in a million? That I don’t know. She’s one in a hundred million million for me, the baby I fought for, kept alive under hideous circumstances, gave over to a surgeon to slice. It wasn’t easy to keep her alive. Vaccines? For me, there was never a doubt I would send her into the world with anything I thought might protect her.

There are things everywhere that endanger the lives of our children: bullying, gang violence, and, not least of all, communicable diseases. Would I throw my child in front of a bus to save yours? I must admit that I would not; the chances of her death would be too much for me. That’s too much risk. Would I teach her gentleness and kindness and generosity in a world that may, in the end, take advantage of her for it? Yes. That, I will do. That has a risk, but it’s smaller, hopefully, and falls in line with my values in a way I refuse to compromise.

That’s how I protect your children. That’s my thank you for keeping her alive, my thank you to the universe and to the other parents who cared for her and about her enough to wash their children’s hands, keep them away when they were sick, and yes, to vaccinate them. If there was a way for me to thank every single parent whose vaccinated children came in contact with Sammi in the years of her compromised airway, I would do it.

You helped me protect her. Thank you.

This post originally appeared on Swallow, My Sunshine.

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When March 21st Wasn’t a Happy Date for Me

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Everyone has at least one day in their lives that they could call “life-changing.” When applied to my life, there are a few moments that come to mind: high school graduation, my engagement and subsequent wedding, the night we found out we were expecting our first child, her birth, the day I found out we were expecting again. I can tell you the month, date and year all of those things occurred; they’re important moments, monumental moments, moments that changed the course of my and then my husband’s life. One thing they all have in common is the joy that came with them and the tears shed by me or others looking on with love and pride.

But there’s another moment, one that will be with me until the end of my days. It’s a moment I’m not proud of, a moment full of anger and hate and tears. Three years ago today, I was blissfully unaware that I was about to add another life-changing moment to my list. I had no idea that less than 24 hours from now, I would be given news that would expose my truest of feelings and leave me shaken, ashamed and confused.

When I think about it, I don’t really remember much about March 20, 2012; it wasn’t anymore special to me than any other day. I couldn’t tell you what I had for breakfast, lunch or dinner. I couldn’t tell you what I wore, if I was at work or home, if I did anything special with my spouse or daughter. I’m sure I was happy or as happy as a pregnant lady chasing a toddler could be. We had some scary news earlier in the pregnancy that had seemed to resolve itself, and although I knew the results for our amniocentesis would be in soon, I wasn’t too concerned.

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And then the next day came. I remember going to work and having a fairly pleasant day in triage. I chatted with friends; few knew we had an amnio, so it wasn’t on the forefront of my mind. As I was leaving I checked my voicemail, there was a message from our perinatologist to call him back; our results were in. So I did just that. I called him back, and then March 21st was added to my list of life-changing days. It wasn’t a happy occasion; the tears shed were not ones of pride, joy or love.

I can sometimes still feel the fear and confusion I felt after hearing the doctor utter two little words “Down syndrome.” I can still feel the tears that rushed down, soaking my steering wheel and t-shirt. I can still picture the confused look on the old man’s face, who tapped on my window to check on me. I can still hear the three words I shouted in anger at God as I pulled out of the parking lot: “I hate you.” And I can still hear the thoughts echoing in my head about my unborn son: “I don’t want you.”

As I said, it wasn’t a moment I remember proudly. My initial reactions left me feeling guilty and angry at myself.  I went home that night, kissed my sleeping daughter and changed into my pajamas. My in-laws came over to discuss our results. I ate cold Ramen noodles. I’d told my mother-in-law, “I like them cold,” when she urged me to eat them. I didn’t want to tell her I had no desire to eat anything. I cried some more and then went to sleep. And then it wasn’t the 21st anymore.

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Over the following weeks and months I learned as much as I could about life with a child with Down syndrome. I prayed. A lot.I forgave myself. My love for Gabe grew bigger and bigger, just like my belly, until it felt like my tummy and heart couldn’t expand any further. Then Gabe came and slipped seamlessly into our lives. Mommy, Daddy, daughter and son — our perfect family. I like to think of the days before Gabe as the days “Before Down Syndrome.”

Those were the days before words like “chromosomes,” “trisomy,” “low tone,” “therapy,” “advocacy” or “acceptance” were part of my everyday vocabulary. The days before I understood what it meant to use people-first language. They were the days before I felt like I understood the meaning of true and unconditional love. The days before I had friends, best friends that spanned the globe, before I had the confidence to stand up for my children’s needs and before I knew what it meant to take a timeline, throw it out the window and be OK with it. Those were the days before I fell in love with a blue-eyed boy, before I knew how wonderful, amazing, challenging and perfect it was to have a child with Down syndrome.

I wouldn’t give them up for anything, and even though sometimes I miss the simplicity of them, I wouldn’t give up a single day that has came After Down Syndrome either.

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This post originally appeared on Hand Me Downs.

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