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New territory: Having an adult child with Down syndrome

Posted in Life with Down syndrome, tagged , , , , , , , on August 24, 2016| Leave a Comment »

Over 18 years ago, I found out through a blood test and amniocentesis that my second child had Down syndrome. Back then, there wasn’t much in the way of the Web, so I went to the library. I found one book that talked a bit about children with DS and had a few pictures that weren’t really flattering. I didn’t feel I had much to turn to in the way of sweet stories, adorable photos of adorable kids and babies, support systems, etc.

That did start changing when I had her. I found out about Band of Angels, which at the time was creating gorgeous calendars featuring models with DS shot in lovely settings. We were officially entered into “early intervention” programs where we lived and she got help with physical and occupational and speech therapy and so on. I got involved in a local Arc.

But for so long, my daughter was little, a child. She was cute, she was the poster girl for the UCP Center’s yearly fundraising campaign. She was a doll, just lovable and outgoing and friendly.

And it’s kinda funny, because for a while now, there’s been more online awareness of younger children with Down syndrome. There are plenty of groups and cute photos that circle social media. But not a whole lot in the way of adults getting attention. (But now there is the A&E reality show “Born This Way,” that follows young adults with DS living their lives, so that is cool progress.)

In short, it was relatively “easy” to have a child with DS. It wasn’t a whole lot different than raising my other children.

She had a great time this spring playing in a local softball league for people with disabilities. SO cool.

She had a great time this spring playing in a local softball league for people with disabilities. SO cool.

What started a change was her adolescence. She hit 14 and started puberty. She got a period. She learned about wearing pads (and not to talk about them all the time in public). She became a teenager. The moodiness that’s hard to talk through, as I have done with my other teen girls; the periods; the observations about cute boys or about seeing her sister or friends at school dating or holding hands or kissing … it wasn’t something I was really prepared for. It wasn’t so “cute” a time as when the DS kids are younger and still sporting the adorableness of babies and preschoolers. So there’s not as many pictures, not as many inspirational stories circulating Facebook and the like. For me, my new situation parenting a DS teen was kind of uncharted territory.

And that’s become even more so now that she is 18. She’s legally an adult today. But unlike my older adult daughter, she doesn’t have a driver’s license, can’t help out driving herself and younger sisters around; doesn’t run errands for me; doesn’t babysit. She needs a bit of babysitting/supervision herself still. She’s emotionally and mentally really more like a 7- or 8-year-old in a lot of respects. But she’s bigger and developed and has a menstrual cycle. It’s harder to discipline her. She’s moody and just mumbles loudly or trounces off to her room and slams the door if I try to tell her, gently and kindly, that she should be nicer in how she speaks to her 9-year-old sister, for instance. I can’t really talk her through things.

In short, it’s not so cute anymore. It’s NOT not that different from parenting my other children, like when she was little. Don’t get me wrong: she is bright in many ways and really helpful and can be incredibly sweet. She’s pretty great. But it’s now really evident that she’s different. She has Down syndrome, and it’s obvious.

We’re getting her a state official I.D., not a driver’s license. We’re talking about some programs that she can do post-high school, next year. We’re starting to think more about what kinds of things she may be good at, what she will enjoy, for work-type opportunities, for socializing, for living arrangements. This is a whole new ballgame.

That story a parent wrote a few decades ago about embracing a new reality called “Welcome to Holland” seems to be hitting me now. The writer compared having a child with a disability as planning (during a pregnancy) on going on a “fabulous trip to Italy.” But then the new reality hits, and you’re going to Holland instead. In the past 18 years, especially, I’d say, the first 12 or 14, I was kind of going to Holland with Marissa, but I still had plenty of experience in Italy, with my other three children, for sure. And then with Marissa, I was kind of in Little Italy in Holland. Now, though, that feeling of visiting Italy at least through restaurants or guidebooks or seeing pictures on the Internet has dropped away. It’s hit me that I’m really in Holland.

It’s OK, just as the story goes. But I didn’t see it coming. Or I kind of did but now it’s hitting me. And I’m going through another adjustment period. And there’s not a lot in the way of cool or cutesy memes or stories or photos going around online — but, like I said, there is “Born This Way,” so that’s a good step in the right direction. Maybe I’ll start seeing more of that. And my sharing my experiences will prompt others to share. Or I’ll just start finding others’ stories more, seeing them amongst all the other stuff that’s online.

So here I am, my cruise ship permanently docked in Holland, at least with one of my children. I’ve got ships in Italy with the other three. It can be jarring a lot of the time to switch between the two countries. But I’ll make it work, and it’s a new adventure.

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Taking care of myself? Tougher than tough

Posted in Full life, Home life, Light life, tagged , , , , , , , , , , on April 13, 2016| Leave a Comment »

My last blog post was about my goal to take better care of my health, with a multi-pronged approach. I did well for a few weeks. And then I didn’t.

The catalyst for getting completely foiled, at least for the past month, was my grandmother’s death. It was expected; she was 99, and my family and I had had a good visit with her a few months before, as we knew she was declining after a long and full life. But the day she died, I got drained, emotionally and physically, and I just had to step out of the Atkins diet that seems to work for me, at least scale-wise.

Since then, I’ve wanted to get back into focusing on my eating and doing all the other things necessary to take better care of my whole self. How well have I done? Crappy. That’s what.

Here’s the deal: I’m a mom. I have a husband and four daughters, and they are all in vital stages of their lives. Parenting them now is in a way more demanding than it was when they were little; then it was mainly sleep deprivation and not being able to catch much alone time. Life was just a lot simpler then. Now, there’s so much more of a mental game to it than just being the taxi driver. I’m there. I’m on call. I’m helping figure out all kinds of important things for the next week, the next month, the next year: their LIVES. Even my oldest, who is married and “on her own,” still needs me, and I am still there for her whenever I can be. Even more, our relationship has a new dynamic and dimension, one we’re still trying to adjust to, I think, almost a year on.

Add to my momhood my personal leaning toward taking care of other people all the time, and my own self gets left in the dust. This past month or so has been a pressure-cooker, a meat-grinder, of calendaring and coordinating activities and appointments; responsibilities, obligations, big questions, long to-do lists, and hardly having a moment to breathe and just think about myself. Granted, I know from sad experience (over and over and over again) that is a recipe for disaster, but after all these years, I’m still trying to figure out how to cut the recipe in half or something.

So I sit here again and contemplate how to take care of myself physically: eat better overall, less sugar, more fruits and vegetables (which I do really love and eat probably more of than the average person, but still)… all that jazz. Figure out how to decrease emotional eating (THAT’s a biggie). Mix up my exercise (I’ve been dedicated to working out for 25-plus years and I really enjoy it and how it makes me feel), do some more fun and different things. The pressure cooker of the past month or two is likely to be turned down a few notches for the near future. Maybe I can make some strides on me.

What I know is this: appropriate self-care can take a lifetime of practice.

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How much of life do we ‘sign up for’?

Posted in Full life, tagged , , , , , , , , , , on September 3, 2015| Leave a Comment »

It’s difficult for me as a mother, period, and as a fellow mother of a daughter with Down syndrome, to read the words of Hallie Levine, who says she would have aborted her daughter during her pregnancy if she’d had the diagnosis then. Sure, she says now she’s grateful she didn’t, but she asserts she should have been able to and that others should be able to do so as well. Aside from all my other feelings on the subject (and I have many), I’m going to focus on one phrase she used: “I never signed up for this.”

Having heard a man whose wife is now paralyzed from the midsection down say the same thing in regards to being married, and other people in tough situations make the same remark, it strikes me that we live in a society where we really feel we should only face things we’ve agreed to. We’re so focused on freedom of choice, on contracts, on knowing so much about outcomes and possibilities, that we feel we can and do control our lives.

Assuming some equal opportunity (and that’s a topic for another blog post as well), let’s say we all get to choose the level of education we attain and what we study. We get to choose our line of work. We choose our marriage partner, if we marry. We choose how many children we have and how to raise them. We plan for and choose when to retire, and what to do in retirement.

We “sign up for” these things. We sign on the dotted line for many of them. Life is a series of contracts that we choose to accept or deny. And we’ve written escape clauses into the contracts. Many of us spend years choosing whom to marry, and when to do it, but even a few years into the contractual relationship, divorce is readily available to let us out of that signup. Pregnancy? We can avert it with birth control, we can terminate with abortion.

But how about we step back a moment and consider that life is not really within our control. It’s not just one contract after another. And when events in our era are finalized in this manner, stamped with a legal seal of approval, they often get boiled down to simple terms that don’t fully encapsulate the “real deal.”

Life is messy. It’s complicated. It involves all kinds of unpleasant surprises that we tend to think of as happening to “other people.” Even aging and death seem distant to us today, that somehow they’ll never happen to us. But they do. And the older we get, the more we experience, the more we realize that death will happen. Aging will happen. We’ll get sick, we’ll be limited in some way physically. These same things will happen to our spouses, and eventually our children.

Levine says she wouldn’t want to see someone else “forced into” her situation. But simply being alive forces us into all kinds of situations we’d rather ignore or pretend don’t exist or won’t happen to us. Choosing to get married leads us down a path in which we may very well have to care for a spouse who becomes disabled physically or loses his memory, among a host of other scary possibilities. Choosing to have children leads us down a path in which we may care for a child with a physical or intellectual disability or mental illness or any number of possibilities we never envisioned for ourselves. But those paths are real.

I don’t deny that it can be overwhelming at times to parent a child with Down syndrome. That’s just one of those “scary possibilities” I know firsthand about. I grieved for a few days when I received the results of my amniocentesis. It was an experience I didn’t count on. It was a loss, the loss of a “typical” child-rearing experience I had counted on. But life presented me this path, and I’m on it.

I don’t have any idea what other challenges lie ahead of me on life’s path, as a person, as a wife, as a mother. I won’t deny that I’ll grieve, be scared, be overwhelmed, be frustrated … any number of normal reactions. And I definitely won’t “sign up for” any of these challenges. But that’s life. And we’re all in it together. We can’t (and, yes, while many disagree with me, I heartily say “shouldn’t” when it comes to aborting in most cases) prevent these difficulties. We can learn from them, do our best to deal with them, and support each other through them. I hate to see others go through tough times, but I’ll eagerly “sign up” to lend a shoulder to cry on, a hand to help.

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I still believe in ‘traditional’ marriage

Posted in Faithful life, Home life, tagged , , , , , , , , , , , , on June 26, 2015| Leave a Comment »

I believe in what’s now referred to as “traditional” marriage. I strongly believe it should be between a man and a woman. And I believe this because of my faith.

So I am not celebrating today’s Supreme Court ruling.

I realize that many are, and that this is now the law of the land. I respect others’ choices and strong beliefs that go opposite of my own, and I DO NOT HATE them. I have never been unkind to friends and acquaintances or strangers who are homosexual. I do not believe in hate speech. But I do believe I have a right to disagree, respectfully, and not have my personal belief labeled “bigotry” or “hate speech.” I also feel it is now important for me to explain briefly why I believe the way I do.

Contrary to what some may expect, I am not a “traditionalist.” I don’t believe AT ALL that anything should continue just because “that’s the way it’s always been.” Many, many negative behaviors, beliefs, practices and laws have been perpetuated because too many people did not have the courage to change them to what would be better, or just plain right.

I do believe that if something is right, it should be supported. I could make all the arguments about why I believe that changing the definition of marriage is not going to be good for society or for children. But those have been made in many places and I do not need (or have space) to repeat them here. Besides, those are arguments, and there are many arguments that go the opposite way. We could all (and certainly have been) go around in circles, debating and arguing and ramping up the anger. I do not like that idea at all.

I support marriage between a man and a woman because I believe what my church teaches. And here’s where it gets radical: my church doesn’t teach this doctrine because of some references in the Bible or some somewhat vague ideas on what Jesus may have taught about the practice of homosexuality. My church teaches this doctrine because we believe that revelation happens today. I read and learn from the Bible. But The Church of Jesus Christ of Latter-day Saints was founded two centuries ago on a foundation of being the restored church that Jesus founded two millennia ago. That means we have a president who is a prophet, a designation that means all that has meant historically. He has two “assistants,” called counselors, and there is a group of 12 apostles, just as in ancient days. And these people aren’t just “called” apostles and prophets. They truly receive inspiration, revelation, PROPHECY from Jesus Christ. It’s His church, and it’s led by Him. He directs it on the Earth through his mortal leaders.

The LDS Church has made very clear through these people we call prophets and apostles that the doctrine of marriage is an eternal one, that marriage between a man and a woman is not only made for us here in this period of mortal life, but is meant to continue after this life: forever.

The church has also stood behind and continued to promote strongly the document revealed and agreed upon by all these apostles 20 years ago called the Proclamation on the Family. We believe it is an inspired and vital document that proclaims basic truths about the family, about marriage, parents and children, that are now being changed and disputed by others.

My 40-plus years of life have shown me time and again that faith is a crucial part of life. It’s one of the big reasons we are here in this existence of mortality. We lived before and we will live after. Here, now, we are meant to learn faith, to believe in a God we cannot see right now and to cultivate taking things on faith that might not always “make sense.” I have had my faith affirmed time and again, and I hold it dear. It guides my life and has blessed me a great deal. I KNOW things to be true because of my faith.

I know that prophets speak today and have affirmed the importance of marriage in the “traditional” sense. I recognize and respect the beliefs of others that contrast so much with my own; I also recognize that some others, friends I admire greatly, who are even members of my church, have differing opinions on this issue. I have and will continue to hope we can simply agree to disagree on this topic and continue to enjoy our friendships for all the fun reasons we are friends.

I simply ask that my strong beliefs on this topic can be respected and that I will not be called a bigot. I do not know the “whys” of many, many things. I like to search out answers, but sometimes answers cannot be found in this life, or for a long time. So far, I do not know “why” some experience same-sex attraction. Science still has no answers for that. I do know that sometimes we must act on faith, and I ask for respect for my faith. I will respect the law and others who disagree with me. But we can certainly all be civil; we can be kind; we can get along.

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Perfectly imperfect mothering

Posted in Home life, tagged , , , , , , , , , on May 10, 2015| Leave a Comment »

So it’s another Mother’s Day. This year is my 19th as a mom myself, so I’ve become accustomed to my children (and husband) scurrying around trying to figure out how to show me particular love and gratitude on my official day. But this year is the first for me to contemplate the reality of my own daughters becoming mothers: my oldest is getting married in two weeks, and somewhere down the line she will become a mother herself.

I could write a book (well, I have, actually, years ago when my oldest was little and I was just discovering truths more experienced women already knew) about mothering, but today I’ll try to share just a few words about my feelings this day, this week, this month.

I’ve realized even more than before that two opposite truths can coexist perfectly fine, and usually do: I can feel I’m doing an amazing job as a mom and I can feel I’m doing a terrible job as a mom. And while those generally go back and forth, sometimes I can feel both at once. And they’re kind of both true. I’m a person of faith, a Christian, and I believe I’m the daughter of a Heavenly Father and that I have a Savior, Jesus, who taught vital truths for me to follow, set an example, and most importantly suffered and died for my sins and weaknesses and general mortal-ness. So I can feel in that very weak mortal-ness that I’m not doing nearly as well as I’d like to be, being like that perfect example that was set. But if I just try to remember that I’m not expected to be doing great, not expected to be perfect, that the whole point of Jesus atoning was to make up for my huge insufficiencies, I feel a lot better.

This applies so well to the daunting job of mothering. I like to speak to reality, to the challenging, painful, imperfect realities that we all experience day to day. And it’s true that I can lose my temper, that I can get annoyed with my kids, that I can say things I wish I hadn’t and not say or do things I wish I had but just couldn’t summon up the energy to do. I think everyone today is painfully aware of our realities, of the ways we fall short, of the ways we don’t at all seem to fit in the glowy, pink, Hallmark Mother’s Day Mother role. So I’ve seen a lot of friends or others speak to this reality, this feeling that we just simply don’t measure up. And that’s true. We don’t. We’re not perfect, we’re not all the same, in the same Mother mold. Our own mothers weren’t, and we aren’t as mothers ourselves.

But it’s also absolutely true that we were born to be mothers. God created us to be mothers, and He knew we wouldn’t be perfect as people all-around or as mothers, specifically. And He was OK with that. He allowed us to have this experience of motherhood in part so we could become better through the crucible that it is, and that all of us interesting, different, unique souls could rub up against each other in all our roughness and smooth out our edges together. Most importantly, our Heavenly Father didn’t send us to Earth to do smoothing without any help. I firmly believe He is heavily involved in our lives and that if we turn to Him and the Savior, we will be lifted and all the stupid things we do will be made better somehow.

So this Mother’s Day, I honor my mom not because she was perfect or I grew up in the perfect home, but because she was herself and did a great job of it. Her mothering was what I needed. I feel good about my strengths and how I’ve put those to good use day in and day out with my four daughters. When it comes to my many weaknesses, I will try a little harder not just to be better but, even more than that, to remember that I am not expected to be perfect, that God will fill in the holes. I will try to remind my daughters above all that God is aware of them and that they have a Savior, and He will be there with them in everything they do, no matter how imperfectly they do it. I think I’ve done a good job teaching my oldest to turn to her Heavenly Father for help, day in and day out, especially for the times when maybe I wasn’t the best of help as her mom. So today, I feel confident that my daughter, with all her amazing strengths and, yes, her not-strengths, will be a great mom. She’ll struggle, she’ll flail around a bit, but she will be awesome. She’ll have moments of that high when mothering seems truly like a gift from God and her little ones almost like angels, and she’ll have days that are blurry from lack of sleep and dark from feelings of inadequacy.

In short, she’ll feel like mothers everywhere. And I thank God for that.

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Measles outbreak a sadly necessary wake-up call

Posted in Full life, tagged , , , , , , , , , , , on February 2, 2015| Leave a Comment »

My husband, who doesn’t follow news as closely as I do, has been commenting frequently this past week or two on the measles outbreak. It’s on his radar as much as it is on the radars of many other Americans who might not have realized how many people have been choosing not to vaccinate their children. Now, after measles has infected 102 people in 14 states just during the month of January, as the CDC says, the issue has been covered frequently in every kind of news outlet. Not a day has gone by that I haven’t seen at least one article on the topic just in my local paper.

Here’s what I have told my husband: Maybe it’s a good thing this has happened. Because, unfortunately, it usually takes a crisis to alert people to a problem. The problem is this: when a high enough percentage of the population isn’t vaccinated (a threshold we have reached now in the U.S.), diseases that used to be practically wiped out can pop right back up and infect — and kill — people.

I realize we are trying to tread a tricky line between individuals’ rights and government authority to compel people to do things. This is particularly challenging when those rights are ones that spring from religious beliefs. I am all too aware of how many religious beliefs have been trampled of late, but I think when it comes to the issue of vaccinations, the vast majority of those parents who are choosing not to vaccinate are not doing so because of religious beliefs. And their choice isn’t harming their own children; it is now actually killing others. That is when their right to choose ends: when it takes away someone else’s health or life. It’s as simple as that.

On ImmunityI reviewed a fascinating book fairly recently, On Immunity, a look at the history of vaccinations and the new class inequality created by those generally more upper-middle-class parents who are choosing not to vaccinate. It is a short book but one many more might want to check out now that the inevitable has occurred.

Some articles I’ve read most recently have indicated that some doctors are not accepting patients whose parents choose not to vaccinate or are having parents who had chosen not to vaccinate change their minds. That’s encouraging. I hope that this dangerous trend can be reversed before the situation gets worse.

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A little can go a long way toward helping others

Posted in Full life, tagged , , , , , , , , , , , , , , on January 15, 2015| Leave a Comment »

Path AppearsI’ve written before about how I wish I could do more to give to others, whether it’s money or time. So many worthy charitable organizations exist to address all kinds of needs, and so many individuals and families need all kinds of things. So I was heartened and inspired by a fantastic book I read last week, A Path Appears: Transforming Lives, Creating Opportunity, by husband-and-wife writers Nicholas Kristof and Sheryl WuDunn. In short, this couple wrote that they often long to give and help those in need around the world but have been unsure of the best ways to help and the best organizations to give to or through. So they’ve “done their research” and created a book that shares what they have learned.

Their conclusions: giving not only benefits others, but it is a source of great satisfaction and fulfillment for those who give. And, even better, just a small donation of time or money really can make an impact, more than we imagine. Then the authors give specific tips on finding a charity to hone in on: 1) “Find an issue that draws you in and research it. … Choose one that speaks to you.” Then do some research yourself to find “ratings, reviews, and critiques” of the charity. 2) “Volunteer, get involved, or do something more than just writing checks.” Use your talents and skills in a place where they will fit and can be “put to good use.” 3) “Use your voice to spread the word or advocate for those who are voiceless.” Kristof and WuDunn write that this step is often overlooked or given short shrift, but it is vital to not only “talk up” what we know and do some “PR” but also to “hold governments — our own and others — accountable for doing their share.”

Not only do they give tips on how best to get involved, but they share a list of “useful organizations” that “do strong work in education, crime and violence prevention, family planning, public health, and quite a bit more.” They emphasize that this isn’t a “screened list” but just groups they have seen personally doing “impressive work.” It’s a few pages long and certainly a nice place to start.

I wrote quite a bit about the book on my book review site, Rated Reads, so you can read more details there. I just can’t say enough about how inspiring this book is. The more of us who get inspired to help and figure out the best ways that we can make a difference, the better for the whole world!

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