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Finding a Fabulous Lip Gloss on A Snow Day

It’s a snow day. Not for actual snow though, we have just a dusting, but beneath it is a layer of ice.

A snow day would be great, we have a sledding hill about 40 feet out our door, but this? If you can make it 4 steps without landing on your tailbone it’s a success. There’s no way we can play outside in this.

I’m over it. This is the 4th snow day since Christmas break, and not one of them has been for actual snow, which we enjoy, but for bitter cold temps and ice.

In other words, we’ve been shut in together a bit too much this winter.

I wasn’t even going to get dressed. My bathrobe seemed to suffice, but I can’t quite manage to stay in jammies unless I’m sick, it’s a weird hangup. So up I went to get dressed, quite likely muttering under my breath as I went. It’s darn cold, so I opened my sweater drawer to grab a cardigan, and couldn’t find the one I was seeking, but low and behold, in my digging, this came up.

I have no idea how it got there, I don’t remember getting it, and I certainly have no recollection of burying it in my sweater drawer, but there it was. I snatched it from the drawer, threw on my clothes and went downstairs to the bathroom to try it on.

Next thing I knew, everything changed. You can’t wear lip color without mascara, and I added blush just for good measure. And low and behold, my attitude perked right up with my face. I’m not big on makeup, and since I work at home, my MO is to go with little or none, so I was surprised at the pick me up I got from a flattering lip gloss.

I took a deep breath and decided that my attitude should match my face, and got myself squared away.

Then I looked outside to see fat, juicy flakes of snow coming down hard and fast. Today is going to be a good day after all.

adoption · Down syndrome · special needs parenting

The Next Step in Pro-Life

This weekend marks the 45th anniversary of the landmark Roe v. Wade decision which legalized abortion nationally. I am not even going to attempt to discuss the law, rather, I’d like to examine the next step.

What happens after birth?

What happens when children are born with disabilities, and in an instant a parent becomes a caregiver?

What happens when a parent gets addicted to opioids or dies of an overdose?

What happens when parents hurt their children because of human frailty, or neglect, or substance abuse?

What happens when children have enormous medical challenges?

What about services and support for people living with mental illness?

And so much more.

Wouldn’t robust support of families caring for children with exceptional needs be pro-life? Would women be less likely to terminate a pregnancy with a child who has a prenatal diagnosis of disability if they knew that access to everything their child would need to thrive would be available and affordable?

Wouldn’t it be pro-life to fund research and resolution for opioid addition? And while we’re at it, there are record numbers of children in foster care at present, in large part related to opioid addition, being a foster parent is, in my humble opinion, the most stunningly beautiful example of pro-life imaginable.

Do you get what I’m saying here?

There are dozens of ways to embody a full-circle, lifelong pro-life stance without even bringing abortion into the conversation.

But it’s hard.

It’s easy to talk about changing a single law, and to carefully hand select politicians who have a certain box checked on their platform. But if that’s your stance, can you answer what should happen after the children are born?

Adoption.

But wait, is it right to separate a child from their ancestry for life? Biology is enormously important, and while infant adoption is sometimes necessary, far too often it’s a lifelong solution to a short term problem when better solutions for both the child and parents are available.

I don’t claim to have answers, in fact, it’s the questions that overwhelm me.

But as a person who has spent my adult life focused on the children who are already born, the ones with disabilities, the ones whose parents are addicted, the ones who have been orphaned, the ones with mental illness, the ones with so little support. I have come to believe that if everyone who made sure that they voted for the pro-life candidate took a step or two to care for the children once they’re born that it would transform everything. We have the ability and the obligation to fill in those vast gaps for the children who are already born.

introvert · special needs parenting

Has Social Media Changed The Meaning of The Word “Friend”?

I’ve always kept a tiny circle of friends. When I was younger I felt insecure about my relative unpopularity. It seems I’m somewhat of an acquired taste.

Add to that a family with complicated needs and working at home, and if I get out with a friend a few times a year I’m lucky.

If you look at my Facebook, though, it’s a whole different story. I have a hundred or so friends that I encountered through an adoption related discussion board about 12 years ago. I’ve actually met fewer than half of them, but I consider every one of them good friends, and some quite close.

Then I have a broad group of people who have some kind of connection to Down syndrome, special needs pare ting, or some type of disabilities with whom I’ve connected over the years. And, of course, childhood cancer connections.

Throw in people from high school and a few jobs, and my latest additions of fellow writers, and my list of Facebook friends belies my claim to be an introvert.

The funny thing is, with rare exception, I feel like I know these people well. In fact, when I have met the people with whom I’ve developed online friendships, the transition has been seamless.

Maybe this means that I spend too much time surfing social media, and I won’t argue that. I will say, though, that for the socially anxious introvert, the advent of socializing through my phone screen has been revolutionary.

Even before social media came along I demurred when invited to any gathering. If it is a large group or there’s alcohol involved, there’s not much chance of me attending a get together.

But now, especially through groups and private messaging, I am able to have meaningful discussions, connect with like minds, and enjoy a form of interaction that enriches my life without finding a non-existent babysitter or using up my energy on tedious small talk.

While many find social media a simple distraction or time killer, I suspect that many, like me, find a way to fill a void that had previously been insurmountable, and do so unapologetically.

Down syndrome · special needs parenting

You Just Had a Baby With Down Syndrome, What Now?

We opted not to have prenatal testing, so our son’s diagnosis of Down syndrome was first suggested by a neonatologist while my abdomen was still wide open on an operating table. I write this according to my own experience, and because it sure would’ve been nice to have it when I was recovering in the hospital and trying to understand what having a child with Down syndrome meant, both in the immediate future, and longer term.

Our son, Alex, was whisked away after only a brief introduction. He was born in distress and needed the support of the neonatal team in order to stabilize. By the time we got to see him again later that night he was on oxygen. This is common in newborns with Down syndrome, but it unnerved me. Learning to breathe takes a lot of energy for any newborn, and since people with Down syndrome are born with low muscle tone (hypotonia) breathing takes even more effort than average. The oxygen gave him a little boost until he became strong enough to get the hang of breathing on his own.

I spent my time in the recovery room wondering if my husband would still want to name our son after his grandfather and himself if he did actually have Down syndrome. I can smile about it now, knowing that there was no question about it, that we did make him a namesake and have never regretted it. But this is what went through my mind, and though it seems silly in hindsight, it was a legitimate fear at the time.

By the next morning a feeding tube had been placed in his nose, and a cardiologist had been called in to check his heart. This is all status quo as well. Over 50% of babies with Down syndrome are born with heart defects, and many go on to have open heart surgery. Alex had a small hole in the septum between the ventricles in his heart, but his did not require surgery. It closed on its own and after a year of appointments and echocardiograms he was given the all clear.

I was disappointed right off because I had breast fed my first child immediately after her birth and enjoyed nursing her for a full year. My son needed the benefits of breast milk even more, but because of his need for neonatal care, I wasn’t able to nurse him right away. I did start pumping immediately, and tried to get him to nurse. He was tired and floppy though, and just couldn’t latch. The lactation consultants at the hospital coached me along and helped ease my disappointment. Even though Alex couldn’t latch, the attempts to nurse gave us skin on skin bonding time, which is precious as well. Thankfully I had no problem producing milk, and before I knew it I had a stockpile of breast milk ready for him.

It took Alex about a week to get breathing and eating down pat so that we could bring him home. He had no medical complications other than the tiny hole in his heart, which gave him a big advantage. He was still in the hospital when we got the results of the genetic testing (called a karyotype) that gave him the official diagnosis of Down syndrome, but we knew before it even came that he did indeed have it.

Upon his discharge from the hospital, he got referred to Early Intervention services, and within a week an Occupational Therapist called to set up a meeting, which occurred right at home. Our OT was kind and professional, and a huge help in learning about things like hypotonia and gave us tips on helping Alex become strong and capable. She continued to see him until he turned three and started school and she became a family friend.

The Early Intervention team eventually included a teacher and speech therapist (SLP). Some kids also see a physical therapist, but that was not the case for Alex.

I eventually gave up on nursing him, and focused on stockpiling enough breast milk to feed Alex until he was about 6 months old. I was pretty cranky about pumping, which took a half hour, and feeding Alex took about the same amount of time, and we fed and pumped every 2.5 hours around the clock, doctor’s orders. I felt like I had no time for anything, and had just had it, when my husband suggested trying to nurse Alex just one more time. It had been a couple of weeks since I’d tried, and I did it out of pure spite. How dare he, the one with useless nipples, tell me I should try to get our son to latch. I might have even told him it would be about as useful as him getting Alex to latch. But I did try, and Alex did latch. He was 6 weeks old, and from that day forward he nursed exclusively. This experience is more of an exception than the rule, but I think it warrants inclusion in the story, because it taught me to never underestimate the power of trying just one more time.

Alex had the very typical experience of having sinus and ear infections, and went through about a dozen sets of ear tubes as well as tonsils and adenoid removal, but has been otherwise healthy.

I fell into a mindset when he was tiny that my child with Down syndrome would be high functioning, which would make everything okay. For a couple of years I clung to this notion, before realizing that my son was okay no matter what. He was and is precious and worthy, no matter what his IQ, which is just about average for a person with Down syndrome.

We’ve learned a lot in the almost 16 years since, but most importantly that Alex is a good human being. His bonus chromosome doesn’t make him an angel, more precious or wonderful, and it doesn’t make him less than anyone else. He is who he is, and that is a witty, goofy teenage boy with more than a little attitude and a whole lot of fun.

cancer · family · grief · parenting · special needs parenting

The Price of Deeper Thoughts

It was on the wall in my mother’s bedroom, a poem written by her grandmother. I loved it as a child, even though I possessed only a superficial understanding of it at the time.

My great-grandmother was a gardener and a writer; I’d like to think we’d get along famously, as kindred spirits. I wonder if she had any idea what the words she put down on paper those years ago would mean to me.

The hot house flowers are beauties,

They have grown without a pain.

Somehow I’d like to set them out

And let them feel the rain.

With just a dash of wind in it,

Though t’would break a leaf or two.

I know they’d smell much sweeter

If they felt a Summer’s dew.

My daughter is a darling,

And of culture has her share,

But I hope some day to see her

Grieved enough to she’d a tear

For something she can never help

No matter how she tries.

T’would steal some joy, but deeper thoughts

Would peep from out her eyes.

I never got a chance to raise a hot house flower. I couldn’t have sheltered my children, because the storm came right into their home.

And when the winds raged and the storms came again and again, my hope against hope was in my great-grandmother’s words. That my one and only truly typical child would some day have those deeper thoughts peep from out her eyes. That building her strength in the storm would bring resilience and splendor that cannot be gained in any other fashion.

And I pushed back the fear that the torrent would destroy her.

She has had more than her share of joy stolen, but she is reaping the deeper thoughts. They aren’t always pleasant, and sometimes downright frightening, but they’re hard earned and stunning to behold.

cancer · grief

Yes Think, Certainly Pray, but Also DO!

It’s been eight years since Ben was diagnosed with cancer. Much of that time has become hazy in my recollection. Sleepless nights combined with fear and grief has blurred those days into a giant blob of yuck in my mind.

But what I do remember is crystal clear.

I remember every single person who ever stepped foot in his hospital room to visit us.

I remember every kind soul who knocked on our door with a meal.

I’ll never forget even those who took the time to mail a card.

Some people went above and beyond, like my husband’s co-worker who made us meals every week for months, or his cousin who made projects of eBaying memorabilia and sent us the proceeds, she did that for years. And she made it sound like we did her a favor by giving her such a fun and rewarding project.

The doers.

No matter how small or big, I remember the doers.

I know that many people prayed for us. I know that time was not wasted, that praying is valuable, precious even.

But the ones who took the next step and took the initiative to be a part of the answer to the prayers, they’re the ones God is using.

I have always been a procrastinator. I have stellar intentons and mediocre follow through, so I have let that ship sail more than once.

But follow through matters.

Follow through can be as simple as a text or email or as creative as making beaucoup bucks on eBay and sending it off in the mail.

It needn’t be a burden if you lack time or resources.

But if you really want someone to know that their suffering matters, take the next step. Think or pray, then do.

running

A Not Running Runner

Hi, my name is Lee, and I am a not running runner. My knee is funky and my thyroid is wonky and running just isn’t in the cards lately.

I don’t know how many runners you know, but when a person transforms into a runner, truly a runner, it’s like getting a factory reset. It’s an identity change, which transcends everything. Being a runner changed the way I eat, sleep, drink, and think. It gave me community and a vision of myself that shifted my paradigm.

But mostly, running keeps my head on straight.

It doesn’t matter how long my to-do list, how frustrating my circumstances, how chaotic my environment, and how upheaved my emotions, if I can bang out a few miles on the pavement or trails, and especially if I can squeeze in a 10+ miler at some point, I can hold it together, no matter what life throws at me.

And when I’m not running, the opposite is true.

Just as my shoes sit in this disheveled pile, gathering dust and cobwebs, my mind stagnates for need of a run.

I wonder what the doctor would (will) say if (when) I tell him that I would let him sell a kidney on the black market if he can get me going again. I suspect that the sports medicine doctor has heard it all, the endocrinologist might be a bit appalled.

I try not to whine, I know it doesn’t help but I just want to run! When can I run again? Will someone please tell me?

Please tell me this condition isn’t terminal!