Why I Stopped Saying 'Just as Long as It's Healthy'

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father kisses his son on the cheek After four boys, I get asked the famous question often: “Are you hoping for a girl this time?” It’s just a conversation starter, but for families that already hold four-of-a-kind in their family poker hand it’s kind of expected. And my usual response, like many others, has been, “Just as long as it’s healthy.”

But when one of my employees who knows my family poker hand asked me that question yesterday, that same-ol’ answer didn’t pop out as usual. Maybe because I was at work and I encourage my agents every day to think differently and to avoid the usual trite responses. I surprised myself with a new answer: “Just as long as it’s happy.” My agent, who is pregnant with her first child, smiled and replied, “Yeah, me too!”

Post-Cody, that other word means all the difference to me now. Cody is arguably healthy even though he has an extra 15th chromosome. Its symptoms affect us and others around him far more negatively than it seems to affect him because he is “happy.” Because even people who are perfectly healthy may not be happy. Yet many people in the final stages of life still manage to find happiness while they are far from healthy, and we’ve been privileged to witness the journeys of several. Good health is a little bit of luck by winning the genetic lottery and influenced by good mind/body maintenance. So which is better to wish for others and for yourself to find and possess — health or happiness?

Some people in the disability community get upset when people tell them, “God only gives special children to special parents” — like it’s a predestined thing they have to live up to. I’m not going to argue the existence of God, but aren’t we all given the choice to “do unto others” with hatred or goodness every minute of every day? I believe adversity, like change, is merely a catalyst that allows you to become closer to the person you are deep down inside — for better or worse. Choosing to be happy, or at least content, versus choosing to be nasty to others and ourselves has an enormous ripple effect. I know it’s made me a better parent and also a better manager of people too.

Cody is happy. And while happiness is not perfection nor does it put food on the table, it can allow you to dance in the rain, smile when there is one last cookie in the bottom of a box and be thankful you have someone to snuggle up with on a stormy night. Happiness allowed my grandfather to smile at his legacy of children, grandchildren and great-grandchildren while he could barely move and his body was wracked with cancer. Acceptance and gratitude are the parents of happiness.

We almost lost our youngest son, Tyler, a couple of times during Sara’s pregnancy with him. The amniocentesis went wrong and kept leaking, and she had a few other complications too. So far Tyler is a very typical, funny, dramatic little boy, but I wouldn’t say he’s happier than Cody, though genetically he is “healthier.” And what if this new baby keeps passing all the ultrasound tests and then after being born, “oops,” he has a missing or extra chromosome like Cody, because Cody passed all his ultrasound tests too? Then I hope we can manage the health symptom parts because I know we got the happy part down. If so, bring it on.

“Just as long as it’s happy.”

man and wife with three sons

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Who Got the Deal?

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In college, a friend at the time taught me an awful game called “Who Got the Deal?” where you basically judge couples solely on appearance and decide who between them got the deal.

(Awful, I know! Feel free to scorn my 19-year-old self; she deserves it.)

Anyway, we would sit in the plaza in between classes and judge people.

“He totally got the deal.”
“Oh man, she got the deal, how’d she manage that?”
“Does she know she got the deal?”
“Does he know she got the deal?” and on and on…

Sometimes we couldn’t decide who got the deal, and we considered those relationships a good match — they may even last! We also believed from the analysis of our research that the best possible relationship scenario is one in which both people think they got the deal.

“I’m so lucky to have you” + “I’m so lucky to have you” = Happy Couple
Wood, L., et al. (1999, May 5)

There is a common compliment given to parents of kids with special needs that goes something like: “I don’t know how you do it.” “I could not do it.” “God picked the right parents for Julia.” “God knew what he was doing when he made you her parents.” etc. …

These are all meant well. The intent is to encourage and express admiration — I understand that — but they make me very uncomfortable, and I know I am not the only special needs mom to feel this way.

They make us uncomfortable because what this type of compliment implies is that our child got the deal.

“Julia is so lucky to have you.” Julia got the deal.

We cannot just casually accept these compliments because nothing could feel further from the truth.

This little person came into my life and rocked my world — for the better. I was a little bit of an arrogant, ignorant, naive, judgmental (see story above), selfish control freak before Julia. And while I am still all of these flaws and more, I know I am getting better. And the turning point was Julia’s arrival.

She changed everything.

My awareness increased, my compassion increased, my tolerance increased, my faith increased, my hope increased, my joy increased, my patience increased, my confidence increased, my humility increased and my judgement decreased — because of her.

God knew what he was doing FOR ME when he sent Julia to me.

If anyone is “lucky” it is me.

So just to be clear — and in case appearances suggest otherwise — in this relationship, in every single possible way, I SO GOT THE DEAL.

mom holding daughter inside bounce house

This post originally appeared on I’m Julia’s Mom.

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When You Get a Special Needs Diagnosis, You Have a Choice To Make

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29558_10151246070858471_1590565023_n This morning my daughter Julia did something amazing. She linked two signs together to form a request.

Six years, three months, 30 days of life leading up to two signs:

More + glasses = I’d like my glasses, please, Mom!

My cup overflows, my heart is bursting with pride. Hugs and tears were shared, texts were sent, a Facebook status was updated and a blog was written. This was big. Two little signs rocked our world.

You get a diagnosis of “special needs,” and you have two choices — to measure everything by what she won’t do or to celebrate every single little tiny and yet humongous thing she does do. By the grace of God we were funneled into the latter option right from the beginning and as a result have basically been celebrating every single day since.

I’ve often felt really grateful that Julia’s diagnosis is “unique,” meaning no other cases like hers. It has allowed us to write our own story, follow her lead and drop every single expectation for what she will or will not be able to do. (I wish this for all of my parent friends; it’s so freeing.)

Will she walk? Well, we aren’t sure, guess we will see! But have you seen how fast she scoots?

Will she talk? I don’t know, but she sure does find ways to communicate!

Will she be okay? Oh, friend, she is already there.

Our parenting approach may have been different had there been 900 articles to read about what kids like her can or can’t do — we may have felt the pressure or responsibility to “help” her achieve a certain standard. We may have been sucked into agreeing to set goals for her to walk by 2 and talk by 3 and feed herself by 4 — but these would have been artificially set for our comfort. In reality we don’t know if God has made her to do any of these things or not — so we refuse to make unfair goals in the first place.

Instead we feel we’ve been given a gift as parents, the most amazing gift — to sit back and cheer our daughter on, all the while saying, “Who knows what she will be able to achieve, but let’s watch and see!”

Had you told me roughly six years, three months, and 30 days ago that I would have a 6-year-old who doesn’t walk, doesn’t talk and only knows three signs, I might have been devastated. I would have fixated on these BIG things she won’t be able do, and I wouldn’t have been able to imagine the little things that would make our hearts soar or dream of celebrations that would ensue over something like: “More glasses.”

You can miss the little things if your sights are set above them — but every ounce of my joy in my life comes from these subtle, tiny, easy-to-miss-if-you-aren’t-patient, yet amazingly huge and life-changing little things.

This post originally appeared on I’m Julia’s Mom.

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How a Father Helps His Son Escape Excruciating Pain

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John Dilgen wants nothing more than to help his son escape the pain.

IMG_0570 Every day he watches his 11-year-old, John Hudson (JH), battle Epidermolysis Bullosa (EB), a rare genetic tissue disorder that makes his skin prone to severe blisters and tears. Dilgen estimates that 60 to 70 percent of his son’s body has no skin on it at all. For the last year and a half, JH’s condition has made it impossible for him to attend school. It’s difficult for him to walk, and sometimes swallowing is a challenge. If JH wanted to spend his days sulking, his dad would certainly understand. But for the most part, despite the excruciating pain, he manages to keep his head up.

“He gets up and he’s able to joke around and smile,” Dilgen told The Mighty. “I don’t know how he handles all of this.”

When the condition becomes too much, when the pain makes him weak and depressed, JH turns to music — something his dad instilled in him. They sing together as much as possible and have been recording songs in their living room in Staten Island, N.Y.

“Singing takes his mind off EB. He’s not in pain at that point; he’s in the moment,” Dilgen told The Mighty. “When he sings, he is no longer a person with EB, he’s just this person singing.”

Watch a clip of this father-son duo in action:


When JH was born with EB, Dilgen didn’t know what to think.

“It was a very dark time,” he told The Mighty. “You’re going from this point of happiness and joy about a birth to complete devastation.”

Because EB is so rare and unknown, Dilgen  has spent the last 11 years doing his best to spread the word. His family actively supports the Jackson Gabriel Silver Foundation (JGSF), founded by Alex and Jamie Silver, whose 6-year-old son, Jackson, has EB.

“We can’t raise money for research unless people are aware of EB,” Dilgen told The Mighty. “We’re 150 percent behind JGSF.”

While he works to spread the word, Dilgen spends as much time with JH as possible. That’s what’s most important to him. In a few months, he hopes to take him to Manhattan to sing in an actual recording studio.

“He’s mentioned to me that he sometimes feels worthless,” Dilgen told The Mighty. “I’m showing him that he’s not, that there’s still a lot that he can do.”

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If you’re interested in making a contribution to the Jackson Gabriel Silver Foundation, head here. You can also visit JGSF’s Facebook page.

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Beautiful Portraits Show Cystic Fibrosis Is Not Just a Childhood Disease

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Ian Pettigrew sometimes thinks of himself as an interloper.

The portrait and fashion photographer based in Hamilton, Ontario, is a 45-year-old with cystic fibrosis (CF), a disease with a life expectancy of about 40, according to The CF Foundation Patient Registry. His symptoms are relatively mild, though, and he wasn’t diagnosed until he was 38.

“I follow many people [with CF] on Facebook and any problems I am having really pale in comparison,” Pettigrew told The Mighty in an email. So, as someone with relative health and a talent for photography, he felt an obligation to help raise CF awareness, particularly for adults with the disease.

“The general public regards CF as a ‘childhood’ thing,” Pettigrew told The Mighty. “It is also a disease where you don’t necessarily look ill.”

To change this, Pettigrew began a portrait series called “Just Breathe,” where adults with CF pose and then write about the unique experiences they have with the disease. Pettigrew says he knows a cure won’t come from his project, but he hopes it will inspire someone to sign up to be an organ donor.

“Probably a good 25 percent of the people that have reached out to me wanting to be part of this project are waiting for new lungs,” Pettigrew told The Mighty. “I am really doing this project to give those people more of a voice.”

So far, Pettigrew has only photographed a few subjects, but he has requests from all over the world. He’s focused on raising funds so he can travel to interview and photograph these people and eventually publish a book of the portraits. To follow his work, visit his website.

“CF hasn’t brought anything positive. It’s been shit. But… I think I can make a positive difference to other people’s lives. If maybe one person gets saved because this book influenced someone to sign their donor card that would qualify as uplifting.” — Ian Pettigrew

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“My double-lung transplant has given me a second chance to appreciate all that life has to offer.” — James, age 34

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Jeff, age 52 [Interview pending]

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If you’d like to make a donation to Pettigrew’s project, head here.

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To the Mother of the Adult Son With Down Syndrome in the Grocery Store Today

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Dear Mother,

I saw you as we were all on our way to check out. I noticed your son instantly. Big cowboy hat, American flag vest, short stature, almond-shaped eyes. Down syndrome. I almost followed you into your line, but that seemed like stalking, so I spied the lengths of the other lines first, only joining yours when it was the shortest.

I was alone, stopping for a few necessities on my way home from work. I thought about saying something to you. But I stopped myself. Your son is so much older. You’ve been on this road a long time. Maybe you’re tired of it all. Maybe you don’t want to engage with a fresh-faced newbie like me.

Worse, maybe you’re resentful of this life you are forced to lead. You are of retirement age. Your friends are probably snowbirds who get to travel at will while you stay behind caring for a child who, in other circumstances, would have left the nest years ago. Maybe you wish you had more freedom at this stage of your life. Maybe if I talked to you, I’d come away discouraged. I’m feeling a little raw right now. I’ve heard too many naysayers tell me how cute they are now, but just wait…

So I stayed quiet. And watched.

I saw your son point to the gum and say something to your husband, who seemed genuinely interested and continued the conversation before putting a protective arm around his shoulders. I watched as he smiled when he listened to him. I saw you laugh as you added your two cents to the conversation.

I decided then that maybe you were safe to approach, but I didn’t know how.

You smiled at me as I unloaded my cart, but still I didn’t know what to say.

When a woman talked to your son about his hat, I pounced.

“Is he a magnet for attention?” I asked you.

You smiled and responded that he is and that he fancies himself Tim McGraw. I grinned and mentioned that I, too, noticed his awesome hat.

Then I plunged ahead.

“I have two boys with Down syndrome, too. Five and four. They’re attention magnets, as well.”

You looked surprised and murmured, “How wonderful,” but then looked away like you were trying to decide if you’d really heard me. Looking up again you clarified, “You have two boys…?”

“With Down syndrome, yes,” I finished for you. “One homegrown and one adopted from Serbia.”

Then you smiled broadly, and said conspiratorially, “They’re really a lot of fun aren’t they?” Before I had a chance to respond, you turned to fill your husband and son in on all you’d learned about me.

We exchanged some other pleasantries as you finished your transaction and bid each other a good day.

I bumped into you again outside at the cart corral and I felt then, as I did inside, that our brief interlude was filled with pregnant pauses as we were each searching for what we really wanted to communicate in the confines of social pleasantries with a stranger.

I drove away thinking that I’d blown it.

Because if I could do it again, dear mother, I would not hesitate to thank you.

I would thank you for paving the road for my boys.

I am not the best judge of ages, but I imagine it’s safe to assume that when your son was born, at least one professional told you he’d be better off in an institution. It was a suggestion you clearly did not choose to follow. Thank you for that. Because of mothers like you, I didn’t have to fight that battle from my own hospital bed.

Thank you for being a warrior mom who learned to ignore the stares and whispers and who proudly shares her boy with the world. You are changing hearts and minds in your clear love and acceptance of him. He is changing hearts and minds just by being. Because of both of you, acceptance of my boys comes just a bit easier for others.

Thank you for letting him have his own style, for encouraging his passion, for letting him shine in his cowboy hat and rocking vest. He’s making people smile. And in so doing, without realizing it, he’s being an advocate for my boys, too.

Thank you for any part you played, no matter how small, in the enactment of, or amendments to, the Individuals with Disabilities Education Act. While we continue to fight for a quality education for our children at every IEP meeting, we don’t have to fight for them to be educated at all or to attend school in the first place because of parents like you.

Thank you for walking this road when you probably felt unbelievably alone, before the support of social media, before Google, before WebMD. Thank you for standing up for the rights of your child, for challenging the status quo, for following your mother’s heart.

In short, it sounds ridiculous to say, which is probably why I didn’t, but thank you for loving your son. In accepting, raising, being proud of and loving him, you not only paved the way for him, you paved the way for me.

I am grateful.

And yes, they really are a lot of fun!

two boys standing on a railing overlooking the beach

This post was originally published on Lakes’ personal blog, Simeon’s Trail.

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