Category: uncertainty

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Middle school is coming… again.

As we ease into summer and begin to rest and recover from this past school year, I keep thinking about the next. A more typical school year for sure. And that makes my heart rejoice.

But it also makes it ache a bit.

As hard as the past 15 months have been, some things have been easier. I have had to worry less about many things. As the mom of a preteen with Down syndrome, it is no surprise that middle school can be the beginning of a hard season, as it is for many kids. Gone are the days of elementary school when everyone is together because, well, everyone is together. As it should, middle school brings growth in new ways and things change. And while he just finished 6th grade virtually, this fall will feel brand new. That makes me worry in a new way for my Ian.

Will he have a friend to walk with in the hallway? Someone who wants to walk with him? I am not concerned about him getting where he is going — I am worried about him getting there alone.

I think back to when Ian was just 24 hours old. A surprise birth diagnosis of Down syndrome, whisked off to the NICU, being diagnosed with a heart defect and being told he would need open heart surgery within weeks — all within 24 hours. After our visitors headed home for the day weary for us, we were left alone in the cool, dark corner of the NICU with curtains drawn around us with Ian on my chest. I whispered to Jason that if we could stay like this, the three of us tucked away in this little corner away from the world, we would be ok. I don’t think I had spoken a more pure truth in my entire life.

And I still feel this way during these times of transition when I am so scared for what comes next. If only we could be tucked away in the corner away from the rest of the world. Then we would be ok.

And even though we would be ok, that is all we would be — ok. Because that is pretty much what these past 15 months have been — us tucked away from the world. We were ok but not good. Or at least not as good as we would like to be.

Then, a perfectly time reminder today that I am not alone in all of this. I attended two sessions at the virtual National Down Syndrome Congress Convention. The incredible Terri Couwenhoven helping me navigate the world of dating and relationships as we support Ian having a life full of what we all want. Most importantly, giving him the dignity of a life of his own choosing. And a gentle reminder from her to have friendships in the inclusive world and also in our special needs community to make sure our kids have a big, safe place to land. So they are never alone.

Then wise words from Dr. Andrew McCormick on planning our kids’ transition into the adult world. Intentionally planning and empowering, but not doing it alone. That instead of using the word “disability” we should focus on diversity. That people with disabilities — and all of us — contribute to the diversity of the human condition. I love that because, at least to me, the word “disability” feels like a negative. Or maybe it is seen by others as a negative — that disability is synonymous with being seen as incapable.

He focused on bringing value. He shared how text messages were actually developed by the deaf community to support their ability to communicate. And that brought value to all of us. How we need to work together to help our kids get to an adulthood where who they are brings value to all of us.

Isn’t that how it should be? That each of us brings value to others?

Big emotions and ideas and dreams today — a meaningful adulthood, a partner, empowered to have the life he wants. It starts today, really. I know that. Day by day, month by month, year by year. But the mom in me wants to know that her boy will have friends to eat lunch with in the fall. That he will never feel like he does not belong. That he will never feel “less.”

And I know that being tucked in that corner is safer. That we would be ok. But I also know that that is all we would be — ok. And I want more than ok for Ian.

It will not be easy for Ian. It is not easy for many kids, or many of us really. But I think the difference when you have a child with Down syndrome is that you KNOW some things will be harder, that some things will be different. And gosh, how you wish it wasn’t so because your kid is simply one of the best people you know.

But part of the dignity of a life of Ian’s own choosing is navigating all of it, the good and bad. But never doing it alone. Middle school is coming again and I need to remind myself… I do not want ok. I want good. And that usually comes with some hard.

We will get there. Well, Ian is always ready. It’s me who needs to get there. But first, summer.

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I want her.

We’re settling in for a long winter around here. Creating new traditions and cozy spots. Embracing the slower pace of our pandemic lives. Knowing that this is how it has to be right now. Seeking new memories found in being… being home, being together. But it still feels like there is a lot of loss woven in.

I’ve written about loss before. Like everything nowadays, it feels like a long, winding road. One where you can’t see what’s around the bend. And because of that, you can’t prepare for it.

I’ve seen this most in how Ian has struggled with the loss of Sunny. He talks about missing her, hugs his Sunny pillow as he goes to bed and shares his favorite memories of her. Bedtime is hard because in the dark and quiet, it is so very hard to quiet your mind. Tonight he came downstairs after we put him to bed and simply said, “I want her.”

The loss of his sweet Sunny who loved him through everything. Loss and more loss. Sometimes we just have to sit with it. Feel it. But when I see my sweet boy missing his best girl on top of missing everything else, oh my heart. I want her too.

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My mom.

This year, 2020, has brought out a lot of things in all of us. Some good things. Growth. Inspiration. Gratitude. Togetherness. In equal measure, the opposite. Fear, anxiety. Longing, nostalgia. Anger, resignation. Exhaustion. A lot of hard. 

We know we can do hard things. But my mom? Well, she has always had to do hard things. Things she has no control over. But she never really sees it that way. Her perspective is who she is, and who she is is a gift. 

When I was a kid, I have these vague memories of something big happening in our house, with my mom. I don’t have any clear memories of when they told us, but I do remember standing in line at school holding a dictionary and looking it up. I held the dictionary up to my teacher and said my mom has this and pointed to the word “cancer.” That look on her face? I knew it was not good. Kind of a mix of shock and fear and sadness, feeling sorry for me, for what this meant. The year was 1983, before pink ribbons and hope. My mom had stage 3 breast cancer at the age of 36.  

She fought. For two years. Surgeries. Chemo every 3 weeks. She had this countdown of her chemo treatments from 18 to 0 on a piece of paper. It hung inside our kitchen cabinet until they remodeled the kitchen twenty years later. After each treatment, she crossed off a number. That last one, the zero, was really big. I knew we were going to make that zero a big smiley face when she got there. I now know that she wasn’t sure if she would get there. Stage 3 cancer in 1983 was especially scary.  

Well, she got there and decided not to stop. She had always wanted to be a teacher. So she did it. She went back to college in her late 30s, something unusual for those times. She became a teacher at 42. And even in the midst of all the good she was doing, she had more hard. Another cancer diagnosis when I was pregnant with Ian. She had another surgery and recovered. Then she would wake up every single day and drive to her radiation treatments and be in her classroom at the end of homeroom. Every single day for six weeks because in her words, “What am I going to do? Sit at home and think about it?” She retired at 66 and loved what she did. I think of how many hundreds of lives she impacted because she decided to take her hard and turn it into something really good.  

I didn’t know hard for a very long time. Honestly, it was not until I had Ian. Up to that point, my life was pretty smooth sailing. Bumps in the road that are typical of adolescence, none of it truly hard. Making my way through college and law school, working hard and getting things done. Not easy but not hard. But I thought it was. Perspective is a fickle thing. You only know what you know, and I thought I knew hard.  

Then came April 12th, 2009. The day we welcomed our second son. We had a plan. Two kids, about four years between them. Close enough for them to be close but far apart for us to really enjoy the stage they each were in. Foolish me, walking into the hospital thinking the only troubles awaiting me when I walked out were sleep deprivation and having to get Joey up and out to preschool. 

I gave birth to our Ian and the whispers of the nurses around him, that look of fear and despair on Jason’s face? For all my days, I will feel those first moments after Ian’s birth. My world was cracked right open.  

I remember our family streaming in and I wanted to tell everyone right away that Ian had Down syndrome. I didn’t want rejoicing and celebrating. I didn’t want them to feel like I had let them be happy too long before I took it all away. Oh, the shame I feel now, sitting here on this rainy Sunday morning as I look over at this precious soul… my Ian, my fellow early bird, enjoying some rare electronics time in the morning while I write. While I write about how I wept the day he was born.  

The juxtaposition of time and perspective. How the hard might crack your world right open just to fill it back up, because it was so very empty, but you didn’t even know it.  

In all those faces, I kept looking for my mom. I was holding Ian in my arms but I didn’t even feel him. I didn’t even feel myself. She came to my side and I blurted out, “They think he has Down syndrome.” I said it, let that truth out into the universe.  

I now knew hard.  

I looked up at my mom and pleaded with her, “What am I going to do?” She looked down at me and simply said, “You love him.” So I did. Ian has no greater cheerleader than my mom. She loves every ounce of who he is. To her, he has always been perfect.  

I was not on the same journey as my mom but many of my feelings after I had Ian were the same. All that uncertainty. I was a planner and all of a sudden, I couldn’t plan for anything. I couldn’t plan for the future, for what his childhood would look like. Would he have friends, a girlfriend? Would we ever travel again? Go out to eat? Would he smile at me? Call me “mom”? What would his life look like as an adult? When we were gone? I was consumed with grief and anxiety. Googling “Down syndrome” back then and finding no hope. I couldn’t help myself and wasn’t helping myself.  

And then there was my mom. Her advice, what she told herself when she had cancer when we were little kids, “You need to take it one day at a time.” She reminded me that all I could control was today and I could do this today. In the beginning it was like a prayer I would whisper when I was drowning, “One day at a time, one day at a time, one day at a time…” until it became my mantra. 

A little further along in my journey of being Ian’s mom it was time to do his assessments to see how he was developing. My baby was one-year-old and they were assessing him. I know why, but it just hurts so much. How many words can he can say? What sounds does he make? Does he stack two blocks, three blocks, four? If they fall down, does he put them back up? Can he roll over, sit up? Feed himself? Does he pass an object from one hand to the other? Important information for his development and crushing my mama heart, all at the same time. I got a list of his developmental “ages” for his gross motor, fine motor, speech, academic and social emotional skills. I called my mom when his teacher left our house because it was just so hard. It is soul-crushing to see your child on paper like that. (It still is.) And she told me, through my despair, “Listen to me. It is a privilege to be his mom. You need to remember that.” Oh, the balm for my soul. It IS a privilege to be his mom. She always knows what to say.  

Recently my mom has faced some new challenges. Another breast cancer diagnosis. This time, caught very early. She had surgery right before Covid. Then was recovering during Covid. Then had another surgery last week. And then this week, a bout of vomiting from the damage she had from her radiation treatment a decade ago. Can you imagine, vomiting while recovering from surgery? I cry when I have the plain old stomach bug. But what did my mom do? She just did it. Held on, knowing that this too shall pass. Sometimes it takes a little longer, but it always does. And when she comes out on the other side, she celebrates it. A text this morning telling me she woke up feeling so much better. Never complaining, never shouting “it’s not fair!” (Because it isn’t fair.) Never asking why. Just making her way through the hard. Because that’s what she does. She does everything with the same grace. 

Yesterday the boys and I went for haircuts for the first time in six months. Oh, how I worried. For weeks and weeks, and the morning of. I walked into that salon trying to control my breathing, with tears filling my eyes. What if, what if, what if? We have lived the past 156 days sheltering in place, but that takes a toll too. Balance. Figuring things out. But I was still so scared. 

Before I walked in, my mom texted me and asked me to send ‘before and after’ pictures of our haircuts. I texted her back, telling her I was so nervous.  The calm in the storm, she tells me, “Lots of people have done this. We have to start… so start.” I texted back that I wondered if I was taking an unnecessary risk. And she gently reminded me again, “Laura, you have to begin, so do it.” And I did.  

Here we still are. In the middle of a storm. And my mom is here too, again. In the middle of more than one storm. I celebrate her and share her. Here, in this space. Because of who she is, how she lives her life, how she weathers storms. Grace. Acceptance. Calm. Optimism. Always knowing stormy seas do calm, sometimes just not when we want them to. But when they do, we will all feel so much better. And be better for having gone through the hard. One day at a time.

I love you, mom.  

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This too will end.

I’ve really been struggling lately. I usually fall hard into summer. Embrace the break for the blessing it is. Live our adventures with our family and friends and welcome the change of pace. I emerge on the other side renewed and inspired and ready for the new year. September has always been my New Year.

And I know it’s a hard time to be a lot of things right about now. But it’s really a hard time to be an educator. As a teacher, I know so much has been written about what we are living through. It makes me ache, feel vulnerable. So many emotions and truth be told, not a lot of them fill my cup. I am just so tired.

As we inch closer to the start of school, I am feeling a slight shift. In “normal” years, I would be fighting it, hanging on to making summer memories, knowing that this summer won’t ever happen again. That this summer is one year closer to Joey going off into the world, our family of four forever changed. But this summer? Well, nothing is “normal” about this summer. So I guess it’s normal to feel the way I do.

Jason and I sat down last night and planned out what we think our school days will look like… what time we should get up and go to bed, what time to go for a walk or a run, scheduling playtime for the dogs and walks as a family, time for fresh air and sunshine, time away from a screen and sitting. Dreaming of new routines and rituals, the change of seasons. Crisp air, falling leaves, fires. Maybe even some football. A shift in more ways than one. Afterwards, I felt some of my unease ebb, a little less uncertainty I suppose.

Don’t get me wrong. I grieve hard for what we don’t have but I am also so excited for all the ways we will grow this school year. It isn’t ideal — none of this is ideal. But here we are. And I am not going to waste this time. I think we can simultaneously struggle and grow, right?

Because I am ready to keep growing in ways I wouldn’t have been able to — as a mom, a wife, an educator. As a woman who, soon enough, will have a life that doesn’t revolve around her children. Joey gone to college and if he has his way, Ian off to college too. The center of my universe will shift and I need to be ready for that.

A lot of growing. And a lot of reminding that this too will end. This too will end. This too will end.

And sometimes I have the gift of gentle reminders to nudge me onward and upward. Like this photo that popped up in my memories today. Of me singing to Ian while he was sedated and on a ventilator after his open heart surgery. Having to stop singing to him because his heart was racing and it needed to rest. Willing him to know that I was right there… that I will always be right there, even if he cannot hear me or see me or feel me.

A gentle reminder that that time of our life did, indeed, end. And that we are better for having walked that path. I would have never chosen it — open heart surgery in all its helplessness. But I am better for having walked through it.

Just like these times. None of us would have chosen this. But here we are. This too will end. And while we would have never chosen the path we’re on, we will all be better for it. Because there are some things you only learn when you live through the hard.