The sibling question

One of the things I worried about immediately after Lina’s birth was the impact her diagnosis would have on Corin. He didn’t have a say in this; how would his life be different as the result of having a sister with Down syndrome? Would he feel shortchanged because of the extra attention and effort that would go into meeting her needs? Would he be embarrassed by her or resent her for making our family different? How would we explain Down syndrome to him, and would he understand? On the flip side, I felt instinctively that the net result would be a son who had a greater level of empathy and a strong connection with his sister. (As it turns out, research backs up that belief.)

I’m pretty sure these worries and hopes are common to most parents who have been or will be in our shoesIMG_8591. (In fact, research suggests concern for siblings is a big factor for women who choose to abort after receiving a prenatal Down syndrome diagnosis. See the above link.) I’ve been thinking about this subject today after replying to a question in an online forum about how to talk to siblings about Down syndrome.

Corin was 2 1/2 when Lina was born – much too young to understand that there was anything different about her arrival or her person. Lina was his baby sister, and he intermittently embraced or ignored her, as any toddler does with a new sibling. He proudly pushed her stroller and talked to strangers about her, and we encouraged their sibling bond in all the ways parents do.

I don’t know exactly when our first real conversation about Down syndrome happened, but I’m pretty sure it came up naturally as a result of a doctor or therapy visit. Corin was around three, and I talked to him about how no two people are exactly alike. “We’re all different in our own ways,” I told him. “Some kids are really fast runners. Some kids have a hard time reading but are really good at math. Some kids have red hair or brown hair, some kids have blond hair or black hair. Some kids need glasses to see well or maybe have trouble walking and need a wheelchair to get around. Some kids have something called Down syndrome. That’s what Lina has.” I told him Down syndrome meant13900190_10155098221844745_5088795064837644994_n that it might take Lina a little longer to learn some things, like how to walk and talk, and that she might have to work extra hard at things that would be easier for some other kids. But, I told him, she will learn and do pretty much everything you do, and very often, she will learn by watching you.

From then on, Down syndrome was part of an open and ongoing conversation. It’s unlikely Corin will remember one big talk. Instead, Down syndrome is just something he’s grown up with. It’s one part of who his sister is, and one small part of our family’s story. As he’s gotten older, we’ve talked a little about the basics of genetics and how Down syndrome happens. He has occasionally asked more detailed questions, and sometimes, we’ve had to clear up confusion. (For example, he seemed at one point to think there was a connection between Down syndrome and embryo donation. We had to make sure he understood that Lina came to our family as an embryo from a donor family, but that’s not why she has Down syndrome.) We haven’t always had the perfect answers or known exactly what to say, but we’ve worked through it together.

Now, at six years old, Corin notices people in public who have Down syndrome or another type of disability. It offers a lot of great opportunities to have conversations like, “Yeah, isn’t it awesome that that guy has a wheelchair to help him get around? I bet he likes to go fast!” or “Yes, I saw that girl using sign language. She may be deaf. Isn’t it cool there is a language for people who can’t hear?” Our conversations about Down syndrome have become part of a larger environment in which our family celebrates differences of all kinds. Discussions about disability, race, gender, politics and religious differences form an arc, a family theme of appreciating all kinds of people and understanding that we are all beloved children of God with our own special roles to play.

There are still a lot of years ahead of us and probably a lot more questions to answer and challenging situations to navigate. Have there been times when shuttling back and forth to therapy appointments has been wearisome for Corin? Sure, that’s happened. There have been times when he has acted out in a ploy for attention from therapists or doctors who were focused on Lina. But I strongly suspect that when he is old enough to look back, he will say hIMG_7474e thought nothing of those things, because it was simply how things were. This is our normal, and Corin loves his sister dearly.

In the end, I am incredibly thankful Corin has a life experience that makes lessons of acceptance and understanding so real. As a kid, I knew my dad was unusual to other people because he was blind. It was amazing to them that he could cook and read us stories and do so many of the things any dad does. To us, braille stories and reading pancake recipes out loud to dad on a Sunday morning were normal. Our family adapted and thrived. I learned that what seems strange or unfamiliar to me may be normal and even wonderful to someone else. I learned that what appears to others to be a disadvantage can in fact be a strength. I learned that people are people underneath all our differences. Now, Corin will live those same lessons through his grandpa and his sister.

What parent wouldn’t want that for their child?

Fourteen

Fourteen years and two hours ago, I married the boy I fell for my senior year of high school. We’ve had such a wacky schedule that our best bet on an anniversary date was this morning. So, we hired a babysitter and spent a Thursday morning at the art museum and then hit a fantastic lunch spot. (Chauhan Ale and Masala House deserves a mention, because it was delicious. I hear lunch is actually the time to go; dinner gets a lot pricier.) As dates go, it was a little weird and a lot fun.

So much has happened in fourteen years. We’re both pretty different people than we were when we started this adventure. We’ve had some tough times in there, even in this past year. But you know, I can honestly say these 14 years have been good, not because life has been perfect, but because I have shared them with someone who really gets me and who somehow makes it all a lot more fun. Marriage demands a lot of us, but when you boil it down, I’m pretty sure that’s what everybody hopes for.

So, here’s to fourteen more good years. I’m okay with growing old, as long as it happens with him.

13529035_10154949553114745_3078611367430539793_n

Jon says he looks like a guy whose wife made him take a selfie, which is, in fact, exactly what happened.

Longing, remembered and fulfilled

Last night, I tucked a five-year-old boy into bed for the last time. This morning, I woke a six-year-old up with the birthday song and made him scrambled eggs for breakfast. After he left with daddy to meet the bus, I sat down at this computer and pulled up the journal I kept for more than three years leading up to Corin’s birth. The first entry was dated December 28, 2006. I addressed the journal to our as-yet non-existent child.

It’s been a long time since I’ve looked at that journal and remembered what those years of infertility were like. I cried as I read back over the entries and remembered months upon months of delayed hopes and crushing disappointments, the endless prayers of longing and fear and hope and trust.

On July 28, 2009, I wrote:

I find myself feeling almost superstitious as I type this entry, as if by writing out the same hopes and dreams I’ve expressed so many times before, I might chase away the possibility of a different outcome. I’ll admit, I am scared. I have moments where I can hardly breathe for fear of the crushing disappointment that may wait just around the corner. But as I said, I have hope, too. And in those moments when emotions swell, I reach for my only true recourse: prayer. I know God continues to be with us, and I am determined to trust Him with my life – and yours, little one. I plead with Him to let me now be carrying our firstborn child, but I pray that above all, His will is done. What is faith if I only trust Him in smooth waters, when I can see what lies ahead? Faith becomes real in these uncertain moments.

The next morning, I went in to our local clinic for a blood beta pregnancy test. After so many times staring at a tiny window and wishing for a line that never appeared, I was too afraid to test at home before the official blood results. On July 31st, the nurse at the clinic in Maryland (where we had gone for the actual IVF cycle) called with the news that the test was positive. Jon and I jumped with joy and trembled and cried, and then we stopped to say a prayer of gratitude and to ask for God’s protection for the tiny life that was just beginning to form.

Today, I still pray over that life, no longer so tiny. I remember the little butt that was wedged for weeks under my ribs and the tiny hands and feet that rocked my belly, and I marvel to see those parts walking around, pieces of this marvelous, challenging, growing boy. That tiny life we longed and prayed for is my six-year-old son, who throws his arms around me and says he loves me several times a day. I look at him today, and I remember the longing of those years. I remember the baptism by fire of his newborn days, and I remember so many moments of joy and frustration and exhaustion and laughter since. There is no honor in my life – no accomplishment or goal met – that will ever equal the fulfillment of being this boy’s mother. He is my firstborn, the child of those many years of longing, God’s answer to innumerable prayers.

Happy birthday, Corin.

Newborn Corin

For the shared love of a girl

Back when I first started talking about the Buddy Walk, Laurie – you may remember being introduced to her family last August – contacted me to say they were thinking about making the trip to Tennessee to join us for the event this year. I was thrilled, and the planning commenced.

Unfortunately, their family has terrible luck with air travel. They got stranded in the airport for hours last year trying to get home, and this year, storms and horrible flooding swept through their area just as they prepared to leave and threw flight schedules into chaos. They finally arrived in Nashville 16 hours later than planned, meaning they were able to catch only the tail end of the Buddy Walk. The delay was very disappointing, but we honored their determination to get here by soaking everything we could from the too-short visit. That meant a couple fun outings, but mostly a lot of hanging out together.

This visit felt different than last time. We were more immediately comfortable with each other, and the kids are a year older and able to really play together. Watching them interact was the highlight for all of us, I think. I have wondered how they will relate to each other as they grow older. Andrew and Corin hit it off fantastically, and Claire and Lina adored each other.

There is no definition for the relationship our families have. This is the uncharted water we entered when we chose embryo donation as the path to our second child. In a sea of the unexpected, this relationship with Lina’s biological family is a gift. It probably sounds crazy to a lot of you, and it probably would have to an earlier version of myself. But now, Dan and Laurie and the kids are family, and we are so grateful to have them in our lives.

IMG_4662

Best we could do for a costume photo

IMG_4679  IMG_4681 IMG_4682  IMG_4683

IMG_4688

IMG_4704

IMG_4709

IMG_4713

IMG_4721

Bowling!

IMG_4725

IMG_4726  IMG_4727

IMG_4741

IMG_4742

IMG_4753

IMG_4761

IMG_4757

IMG_4771

Corin directing the ball after his roll

IMG_4775

IMG_4785

IMG_4789

Playing in the matching jammies requested and chosen ahead of time by Claire

IMG_4795

“Ring around the rosie…”

IMG_4836

IMG_4811

IMG_4850

IMG_4815

“We all fall down!”

IMG_4843

And time for a break, with the requisite hair rubbing and finger sucking

IMG_4847  IMG_4848

IMG_4853

IMG_4862

IMG_4871

0-6

In closing, I’d like to share what Laurie posted last night about our weekend together. Some of you have seen it already, but it seems important to have the other side of this experience represented here, as part of this family story.

Every time I tell this story of how Dan and I donated a frozen embryo to a couple in Tennessee, I hear “oh what a gift! That was so generous of you!” And I never understand why people would say that. It never felt like giving a gift. It felt like a terribly painful decision to do the responsible and ethical thing while pulling all my heartstrings out of my body across three states. It felt like tons of tears and therapy. It was sleepwalking for months, looking for a baby in my sleep that I was afraid I had forgotten to take care of. My proudest accomplishment is being a mommy and it went against everything inside me to think of a blonde munchkin being raised in another family. Jon and Jolene are the ones who gave us a gift. Peace of mind that we did the right thing. Their willingness to share their lives with us has made this a million times easier. And they gave Claire and Andrew a sister. Even if she’s a sister that lives with her own family, they still get it. Andrew has a new friend in Lina’s big brother. He was too busy playing with Corin to let me take many photos of him, so this weekend felt like a bonding of the sisters. When the girls were playing ring-around-the-rosies and Claire told Lina “you’re my baby sister,” it’s when I knew this was also a gift that would keep on giving. Forever.

What I’m Learning

I have hesitated to write this blog post for several reasons. One is I prefer to spend my time illustrating how typical our family is. I don’t spend a lot of time dwelling on how Lina – and by extension our family – is different, because in most ways, we’re not. Another reason is I don’t want to sound like I’m putting on a hero cape; I am no more a hero than any other parent of small kids. Also, I’m still kinda new at this whole “parent of a kid with special needs” thing. We’re still feeling our way along, learning as we go.

I do want to be real about the challenges we face. I mean this blog to be a glimpse into a real family that happens to have a child with Down syndrome. Sometimes there are things about that that are hard. There are things about being a family of any kind that are hard. But I’m also very lucky. Parenting a child with Down syndrome demands my best; it requires that I step up my game. I get to see the world from a little different angle, and that turns out to be a beautiful thing.

I see endless blog posts that purport to speak for whole groups of people. (“Ten Things Never to Say to People Who Pick Their Noses.” “Twenty Things Mermaids Wish You Knew About Life Under the Sea.” I obviously made those up.) I get it, and I suppose those lists have their place, but it’s way too presumptuous for me. I’m just going to share what I’ve taken from my experience thus far. Maybe it will mean something to you; maybe it will just help me clarify my own thoughts.

IMG_3449

Things I’m Learning as Lina’s Mom

1. A new language – TEIS, IFSP, IEP, OT, SLP, sensory diet, petechia, hypotonia, typically developing child, peer model, ABA… You get the picture. But I’ve also learned that no one starts out knowing it all. We all learn as we go. When I need to understand a new term or concept, I do. My new vocabulary has been accumulated step by step, and it represents how far we’ve come in the last two-and-a-half years. I have a much greater confidence in my ability to suit up and face the next thing, whatever that is.

2. To live in the moment – If I let it, the future can sometimes feel like a scary place. There are so many uncertainties that could be crippling if I allowed them to be my focus. Instead, I make a deliberate choice to embrace the present moment. Jon and I pour our energy into being the very best we can for both our kids today, doing everything we can right now to prepare them for the future we want for them. We celebrate today’s victories and look for ways to overcome today’s challenges. I am soaking in these days with little kids, because I know how quickly they are passing. Being Lina’s mom has required me to do better at what I should do, anyway: focus on what’s in front of me, and spend my energy on things I can actually control.

3. Real optimism – I’ve mentioned before that I struggled in the beginning with knowing how to find the right balance between realism and optimism when it came to Lina’s capabilities. With a little time, the right answer came. I’m going to choose optimism, every time. I am going to believe that my greatest hopes for her are possible, and then I will do everything I can to make it happen. I recently in my work learned an organizational change process called appreciative inquiry. One of its key tenets is the “anticipatory principle,” which suggests that what we believe about the future influences how we act today. It turns out that decision for optimism I made after Lina’s birth has solid roots in change theory research. This natural realist is no longer afraid of planning for the best possible future. Life today for young people with Down syndrome looks nothing like it did a generation ago. I believe that it can look very different again by the time Lina is striking out into the world. That belief shapes my actions right now.

4. To measure my children only against themselves – This is one we all know but sometimes have a hard time practicing. We watch another child master something our kid hasn’t even begun to tackle yet and worry: “Am I missing something? Should my kid be able to do that?” With Lina, this can go to a very hard place. Simply interacting with kids her age makes her delays apparent. Add to that the periodic assessments that measure in black-and-white the gaps between her and typically-developing kids, and suddenly those comparisons color how I see my daughter. I am learning to better keep all that in its place. I can be clear-eyed about the goals we need to work toward, but with the solid understanding that my child is not defined by how she compares to anyone else. She is fierce and independent and goofy and affectionate, and she is growing and learning new things every day. That perspective has also made it much easier to avoid comparing Corin to any other child, or myself to any other parent, for that matter. We are all works in progress, thanks to the grace of God.

5. How to live in the real world – Neither of my children is perfect. I’m not perfect. My husband’s not perfect. Our marriage is not perfect. Our faith is not perfect. Our life is not perfect. We live in a messy, imperfect, sometimes downright awful, sometimes dazzlingly gorgeous world. I know – and I want the world to remember – that Lina is not some aberration in an otherwise perfect universe. She is a beautifully imperfect kid in a world full of beautifully imperfect kids. We talk about “celebrating differences,” but do we, really? We congregate in increasingly homogenous churches, neighborhoods and towns. We seek out people who are like us, because – let’s face it – it’s just easier. Let me turn this into a challenge: Seek out people who are different from you, and look for opportunities to really hear their stories. If in your daily life, you’re never uncomfortable or challenged to see past your preconceptions, something’s missing. It may be a cliche, but God’s children are a kaleidoscope. We come from different backgrounds. We come in all shapes, sizes and colors. We talk and move and think differently, and we all have our own struggles. The most basic thing God asks of us, after loving Him, is to care for each other. If we’re not doing that, nothing else matters. If we’re spending our lives in a comfortable bubble, we’re not living the gospel. Having a child with special needs doesn’t make me immune to this problem, but it does help me to leave my comfort zone and to seek to really understand people who appear to be different. I’ll say it again: I challenge you to seek out and get to really know and love people who are not like you. That’s how God changes lives, starting with our own.

It’s not a pithy Top Ten, but there it is: the ongoing lessons of my daily life. Stay tuned; I guarantee there is more to come.

When you’re miles from normal

I remember just a few years ago being in the throes of fertility treatment hell and grieving the loss of the stereotypical family planning experience: have a lot of sex, wait a couple weeks, pee on a home test and watch the bright lines pop up. Hooray, we’re pregnant!

Instead, we waded through countless injections, complicated medical procedures, the agonizing wait for the blood tests and the phone calls from the nurse with the results. So many others have been there and know exactly what I mean, and many go through much worse. It was stressful, expensive, emotionally draining and – for me – physically taxing. Much of the emotional difficulty was coming to terms with how hard we had to work to get something that came so easily for many. I had a very bad relationship with home pregnancy tests.

Time has brought a new perspective. It was hard, and there have been a lot of hard times since then. And to be clear, feelings of loss are, well, normal. It’s just that now, with the luxury of time, I can look back and value what makes our story unique. I can recognize the incredible gifts that have come to us as a result of an off-the-beaten-path experience.

My dad is blind due to a biking accident in 1980. He wrote an article once called “Unusual Gifts.” In it, he explained why he believes his blindness is really a gift in disguise, allowing him experiences and purpose he would not have found otherwise. I realized recently that I feel very much the same about the unusual pieces of our experience. I wouldn’t have chosen them for myself, but that’s why I’m glad I’m not in control.

My daughter is the sunshine of my life. Truly, I can’t even explain how much joy she brings me. I sit and watch her, in awe of the beautiful little person she is. But someone prominent – I refuse to name him and provide further undeserved publicity – recently suggested that it would be immoral to knowingly bring someone like her into the world. She isn’t “normal,” and to a lot of people, that makes her unwanted. To me, she is priceless, perfect, a major part of the meaning in my every day. And thanks to the unusual path we took to her, we have a whole new branch of this crazy family tree to enjoy. Our lives would be poorer without those incredible people to love.

My son is four and growing up SO fast. He cracks me up with his wild flights of fancy, his funny observations of the world, his caution and bossiness, his need for his idea of order. (He recently organized the hangers in his closet by color.) He dazzles me with his adult vocabulary, his sweet affection, his curiosity and growing intellect. If it wasn’t for the hordes of doctors and nurses, the labs and procedures, he wouldn’t be here. Our firstborn would be someone else – equally loved, no doubt, but not this strawberry-blond boy walking around with my heart in his hands.

We have met so many amazing people through our experiences, and been able to share so many highs and lows with an incredible support system. We’ve had to learn faith of a truer kind, with nothing left to do but lean on the only One who knows the future. We’ve had to build a marriage that can withstand a pounding and another pounding, shuddering and rattling but holding firm. We are, without question, better people, because we’ve had to be; because that’s what God can do in the midst of the far-from-normal.

I’ve said this before, but it bears repeating: I do not mean to suggest God sends hardship. He is not the author of pain and heartache. We live in a messed-up world where things do not go according to God’s plan. There are some griefs that are far, far beyond explanation or reason, the senseless result of a broken, hurting planet. But God does have the ability to pick up the pieces and build them into something beautiful and good, something better than we could have chosen for ourselves, a monument to who He is and what He wants for His people.

I suppose none of this is really new; it’s more along the theme of this blog’s title. I guess I just want to say this: normal is overrated. In all the ways it has manifested in our family, the abnormal has become beautiful. If you find yourself miles from normal and wishing for something simpler, let me offer you hope that the path less traveled really can be breathtaking in all the right ways. Acknowledge pain, grieve loss, but then, look up. There really is joy ahead.