5 Things I’ve Learned About Down Syndrome

Today is World Down Syndrome Day.

We are with William while he competes in the Special Olympic State Basketball Tournament. It’s the perfect place to be on a such a day as this.

I couldn’t go the day, though, without sharing a few words. What better day to share words about something that is so close to my heart. In a form of a list, since that is so close to my heart too.

1. They are a part of me

When William was born in my state of shock and confusion he looked like an alien to me. I had not worked up the courage to tell my parents that my first baby “probably had Down syndrome,” since those were the words everyone was telling us. My parents kept calling to check on us, I’m sure sensing something wasn’t quite right, and in those phone calls were always questions about who he looked like. I didn’t know how to answer. My eyes had not adjusted and all I saw was this alien baby. It sounds sad, now, but it was necessary in my healing, I think.

It didn’t take took long for my eyes to adjust and to see that he was the most beautiful baby in the world. By the time Mary came along I had come to that realization that just because they have extra chromosomes doesn’t change the fact that they still have pieces of me. They still have genes and traits that came straight from me. Straight from us.

2. Different is wonderful

When my children were younger I just wanted others to see how similar they were to every other child. And it’s true, they are. They have definite likes and dislikes. They have moods, high and low. They have humor. They have desires. They play, they resist sleep. The similarities are too many to number.

Now I find myself getting a little uncomfortable, though, when parents are preaching “more alike than different.” The fact of the matter is they are different. They have Down syndrome and that makes them different. That difference is important. That difference has shaped us and pushed us to become better. That difference has changed me.

It’s the differences they have that draw people to them. People notice them. They notice how cute she is and how determined he is. I think with all their extras they also have an extra light in them that those around them can’t help but see. Can’t help but feel. That difference is a very good difference. It’s that difference that is changing people.

3. It’s not a matter of “if” but “when”

As a mom of two children of Down syndrome I quickly learned that getting discouraged because they weren’t doing something yet just wouldn’t do. My thinking changed sometime in William’s first year. I cam to realize that it wasn’t if he’ll walk, it was when. Not if she’ll ever sit up, it’s when. Not if he’ll write his name, but when. Not if she’ll ever be potty trained, but when. Not if he’ll read, but when. Not if they’ll talk clearly, but when.

Making those lists of things they probably won’t do is pretty much useless.

4. Sometimes it can be hard

The older my kids are getting the more I’m coming to find that sometimes I have to acknowledge this to myself. Especially at times when I feel like others in similar situations are only speaking of rainbows and butterflies. But I’m coming to realize that it’s ok if I think it’s hard sometimes. The fact that it’s hard doesn’t change the road we’re on, it doesn’t change our progress. If anything it makes me push harder. I think of one of my favorite movie quotes,

It’s supposed to be hard. If it wasn’t hard, everyone would do it. The hard is what makes it great.

Lately I’ve been trying to shift my thinking. For most of their lives I’ve been thinking about how their diagnosis affects me. And it does. But this isn’t just about me. It’s about them. They have these extra challenges to live with and work through. This is their diagnosis. And it is hard. It’s hard for him to have to work so hard to communicate. It was hard for her to work up those muscles to finally walk on her own. It’s hard work. But it’s that hard work that makes them great.

5. If you’re happy…

A few weeks ago we were at a small basketball tournaments with William. Turning the team event they pass the ball around and then the last person shoots. They each got a couple of turns at the basket but just had one chance to get it in. Sometimes he gets in a hurry and when he does he often misses so I was holding my breath when he was standing under that basket and the ball was passed to him. He put it up and in it went. We cheered. He jumped in the air with excitement and without skipping a beat ran to his dad to share in that excitement. Watching him is the stuff of chills. He was happy for and with himself. And he had to share it.

I could go on and on about how they can find contentment and happiness when I can’t see it, my eyes are still adjusting. But I think the bottom line is, if you’re happy show it.

And when possible, jump in the air.

Bike Riding

We are currently in the throws of Spring Break.

As history has taught us I’m usually unable to really accomplish much during this break. It’s like life comes to a stand still and someone hit pause on all the motivation I had summoned. Instead of fighting it, I’m just going with it.

Yesterday was a go with it day. I’ve been battling allergies, and loosing, the past few days. And so I’m a lot a little on the grouchy side. And so I’m not much in the mood for anything.

But then yesterday happened.

Yesterday this girl joined the ranks of two-wheel riders. It makes me giddy for her. Even more so, since a week ago I was fairly certain that her riding her bike, sans “false confidence” wheels, was not ever going to happen. Never. Ever. Going. To. Happen.

Let me tell you the story.

The story of how MT taught herself to ride a bike.

For some time she has expressed the desire to really learn how to ride a bike. She’s had her bike for a couple of years. And since that time has used the little extra wheels that came with it. On this side of her learning I’m convinced that “training wheels” don’t train anyone to do anything.  It’s like the giving the man a fish instead of teaching him to fish concept. But maybe that’s just me.

A year or so ago we tried taking them off but had no luck, so back on they went. In the past months she has continued to talk about wanting to learn so a week ago we took them off again. I would stand behind her holding on and we’d start out. Everything I told her to do her body would react in the opposite direction. She would blame the bike. Not believing me that she was in control and the bike was doing her bidding. It quickly became a spectacle of both of our lacking the patience to listen to the other person.

I thought there had to be something I was missing. So I did what any self-respecting mother does. I took to Pinterest. I quickly learned about a balance bike, and how I could turn hers into one in minutes. It took lowering her seat and taking off her pedals. Lowering her seat was a non-issue but I did have to You Tube how to take the pedals off, but once I got that figured out it was easy peasy.

It allowed her to walk her bike, get some momentum, then she’d bend her legs up and just glide. This allowed her to get the feel of balancing the bike with the ability to easily put her feet on the ground if she lost her balance. It also meant that I was removed from the “learning to ride a bike” equation. So she took to our circle practicing. Initially all she would do is walk her bike around so I of course had to call out “pointers.” But that ended up in me frustrated and her in tears so I had to walk away and she had to come in and have her “moment.”

Eventually she went back out and about 20 minutes later she came in saying she was ready for the pedals. I told her “no.” I felt like she needed to practice balancing for a few days before we tried it with the pedals. And eventually, she accepted that. It worked out better for us for me to not even watch. My need for sharing “pointers” was too great while I watched her. Which didn’t really help either of us.

Yesterday she went out in the morning to ride her bike. I stood at the window watching her. I just felt the urge to see what she could do if we put the pedals back on. So I went out and called her up to put her pedals back on. Then she walked her bike back down to the circle, while I stood at the top of the driveway.

And then. She took off. All on her own. Without my help. Without my pointers. All I could do was laugh. I was so excited for her and so proud of her. It was just incredible, in a word.

We quickly had to then ride/walk to Granny’s house, to show off her new skill. Especially since Dad was there. As we got close The Boy took off ahead of us, while I was staying behind with LM “riding” a tricycle and MT still working out the kinks of the various terrains while on two wheels. When The Boy walked in to Granny’s house without anyone else it sent Granny, and Dad, into heart failure for the minute it took us to catch up. Which was funny to me but not as much to them. All of that was dispelled, though, when I got them outside and MT rode by on her bike. Without help, without anything but two wheels.

So yesterday, the go with it day, turned out to be pretty epic.

Monday Musings

• This morning everyone was keenly feeling the affects of the time change. Just getting out of bed was a challenge and a chore. The littlest one felt it the hardest, I think. She struggled all morning with the fact that she had to be up and dressed. But we did finally make it out the door for school, on time even. Everyone got a high-five on the way to the car.
• Saturday MT announced she was going to paint her nails. Not long later the three came running to me and the littlest one was saying, “Look! Look!” Big sister had painted her nails. Then they left and came back a while later. MT had painted her toes and her left hand. Big brother stepped up and painted her right hand. He can be the coolest big brother when he wants.
• Today the temperature is supposed to be in the lower 70s. My windows are open and ready and waiting. I’m so very tired of the cold. So very ready for it to be green outside.
• This doesn’t always happen, so when it does I feel like I need to share. I had a Pinterest success yesterday. Tried this with my hair and it totally worked.
• Saturday I made donuts. Been feeling like it for a few days and finally had that motivation to get it done. By the time they were done it kind of ended up as “donuts for dinner.” No one really complained, though. They were tasty.

• Last week was parent/teacher conferences. I’m always a little nervous, I don’t know why. All three had great conferences. But it got me thinking about summer time. With no big trip plans like last year I feel like I need to get us into a good schedule and routine that includes some “summer learning.” I took to Pinterest with a wild abandon. I also asked MT to help me come up with a schedule so she has some input. Fingers crossed for all of us.
• With the anticipation of spring I’m feeling the itch to do some house projects. Finally getting some things upon walls. I found an inspiration picture for our bedroom a few weeks ago. I’ve hesitated showing it to David, since he almost always has opinions on things that in my mind make no sense that has those opinions but whatever. So I finally showed it to him the other day and miracle of miracles he was all over it. I know it will take a while to get it done, it will be a process of a little bit at a time. But I’m excited, just the same.

image source

Happy Monday, friends!

Monday Musings

There are gobs of things I should/could be doing. But it’s Monday morning. It’s a school day Monday morning. It’s the first time I’ve had quiet in 72 hours (everyone was home on Friday). So I’m taking that time to drink my hot chocolate in front of the computer. What better time to do some musings.

• This morning, when I woke up, it was -2* outside. Um, hello, that’s colder than cold.
• We had a little snow the other day, they were talking like it was going to be more. I’m sure it was someplace but here, just an inch or so. Add to that this negative degree business and you get some slick roads.
• This morning I’m grateful for a vehicle that handles well in negative-degree-weather-slick-roads
• On Friday we took kids to the Dollar Theater. The boys saw Thor and the girls saw Cloudy With a Chance of Meatballs 2. I didn’t really want to see Cloudy but there was no other movie I could ensure the girls would sit through. They loved it. So even though I spent some of the movie looking at my phone I’m still giving myself parenting points for it.
• They other day I went to Hobby Lobby. They had Valentine’s things on sale for 90% off. I couldn’t help myself. What choice did I have? They were practically give it away!
• I have a few big projects in the planning stages. Read: I can’t stop thinking about them/collecting things for them but I have yet to get busy and get to working on them. The kids have a couple of days off of school this week I’m thinking about making them my minions and putting them to work.
• Let’s be real, they already are my minions.

Happy Monday, folks!

 

Here’s an icy picture for you, cheers!

Valentine’s Day

Since our very first Valentine’s together, before we were even married, we have alternated years. Whosever year it is, that person is in charge of dinner. As we’ve had kids instead of making the day just about us we’ve included them. So it’s morphed, for me, into a day that really just celebrates the fact that we have love in our family.

I am kind of in love with it.

In addition to getting me flowers David has now gotten into the habit of getting each of the girls a flower. I kind of love that too.

I did help set the table.

Although I did have a little help.

So here it is. The dinner. Six courses that took blood, sweat and tears. Ok maybe not the blood.

1. Starter: Welsh rarebit and a spinach salad

2. Soup: crab and corn chowder (don’t get too excited it did come from a can)

3. Vegetable: Steamed asparagus and squash

4. Fish: Rainbow trout and shrimp (Never had rainbow trout before, it was so good! Probably my favorite thing of the whole meal)

5. Main: Cornish Pasties (so I did help with this one, made and rolled out the dough. He took care of the rest)

6: Dessert: key lime pie and a chocolate covered crème puff

And there you have it. He was so proud and I have to say so was I. He plated and served each of our dishes. We all had a lot of fun just being together and spreading the love.

He has set the bar high. I better start planning for next year!

Monday Musings

Just a few things today.

• Valentines Day was delightful!
• David cooked a 6 course meal! I’m going to try hard to write about it this week.
• We’ve recovered nicely from all the snow days and I’m happy that the white stuff is melting away. Not to say it won’t come back but I’m just going to be content with the melting.
• William’s glasses broke a couple weeks ago. As in the bridge snapped in half. We’ve ordered new glasses but they’re taking forever. I didn’t realize how much he and I depended on them until they were gone. Hopefully that situation improves this week.
• I got myself a laminator. It makes me so happy. I’ve converted MT to the laminating dark side. As soon as she saw it she set out to make something to laminate.
• I’m still attempting/trying/sometimes failing to get LM out of the pull-ups. Some days she doesn’t phenomenally well and other days, not so much. I’m so bad at potty training. Trying hard to stick with it.
• I’m learning that lesson lately that I can’t do it all. Not matter how much I want to. And it’s not just because I know my limits. But mainly because I have to share. I have to allow others opportunities to serve, to grow and to stretch. I have to allow others to use there talents, even though they’ll do things different that I would. I feel like I’m learning more about grace in the process. Applying grace to myself and others. It’s crazy how good about it all I feel.
• And finally my list of things to do around the house is growing to be about the length of my arm. They’re big jobs too. Which means I’ve got to work up that whole motivation thing. And fit it all in between the gobs of other things I’m trying to do. The good news is that the messes always wait!

Happy Monday, folks!

Snow Days

This week we’ve had two days of snow days and two days of two hour delays.

Until now I didn’t realize all the two’s and all the rhyming.

Last Saturday we had a little baby snow. I went out to shovel and the kids couldn’t contain themselves so they joined me.

Then on Tuesday we had a giant mama snow.

So. Much. Snow.

It’s so funny to watch their personalities when they play out in the snow.

The Boy would come and go. Play for a while then run inside and watch us from the window.

Then all the sudden he would come out to join us. With open arms.

LM would play for a while. She loved the sledding.

But once she was done, she was done and there was no coming back.

Then this girl.

She’d probably live in if I let her.

I loved watching these two work together.

They had quite a system worked out.

When did they get so big?

This was the day of the big snow. Like I said. So. Much. Snow. MT had decided that she needed to dig a path for sister.

Because, well, it was so deep she couldn’t really walk in it. She didn’t last long. As opposed to her sister who once again I had to force to come inside.

We did put some of the snow to good use and make ice cream. We do have our priorities.

Happy Birthday

To my mother…

yesterday.

I won’t tell you how old she is…

Love you so!

Broken Bones

When I was 5 I broke my arm. Or maybe I was 4.

When I was in Kindergarten I broke my arm.

It was all kinds of traumatic. I was at school, on the playground playing on the bars. Then I fell off. And then there was screaming. I remember lots and lots of screaming. I remember people gathering around. Then I remember teachers there trying to give me space.

The story of how I broke my arm has been told and retold countless times. So much so that things I heard later, I started incorporating them into my own memories. While there are things I know I remember other things I’m not sure if I remember them or if I was told them later. I say this because in that crowd of kids was my brother. Just a couple of grades a head of me. Somehow he learned that it was me and was trying to get to me but the teachers kept him from coming to me. And so I screamed.

I can only imagine how that must have been. I imagine my own children in that situation. I think the other ones would be just as heartbroken if their younger sibling was hurt, and traumatized, and mom and dad weren’t around and they were kept away. Breaks my heart a little.

Back to the screaming. Somehow they got me into the office and placed a pillow under my arm. I continued to scream for everything my five year old brain could think of. My mom, my dad, my Nana, my blanket. The list went on. While I screamed the school was desperately trying to get in touch with one of my parents. It was a few years before cell phones made people so easy to find.

As some kind of tender mercy, or blessing in disguise, my mom wasn’t at home when they called. Now I love my mother dearly but she wouldn’t even come into the bathroom if we were sick. She’d stand outside the door and ask if we were ok then tell us to splash our face with water and rinse our mouth out. Had she come in she would have joined in on the sickness. She knows her limits. I think having to take a screaming me with a broken arm to the hospital might have been more than she could handle in that moment. That’s just my speculation and so I call it a tender mercy.

They were finally able to get a hold of my grandmother who quickly came to get me. Somehow my dad was also reached and he met us at the hospital. From there things are a little less clear. Perhaps I was exhausted from all the screaming, perhaps I was finally in shock or perhaps the pain took over and my memory has wiped it away. Maybe a little bit of all of it.

My dad tells the story this way, that once they determined where the break was they gave us two options. Hold her down and they will set it or sedate her and we would be there over night. My dad says he and I talked it over and we agreed that if he held me down I would let them set it. Now, having had five year olds I can kind of picture how that discussion went. Nevertheless that is how it went. And they wrapped me up with an enormous cast. That I kept on much longer than was necessary because the saw they wanted to use to take it off was as big as my head and I remember screaming, “don’t kill me!”

School pictures with the cast. I remember distinctly that I wouldn’t let anyone sign it for the longest time. Finally I relented. And my little brother did this little scribbling thing that set me over the edge.

Why it sent me into a ranting and raging lunatic I don’t know. It just did. Funny the things we remember.

So with all the trauma, and drama, surround my first broken bone I’ve been getting the sense for some time that someone is going to break something. I’ve been mentally preparing having to pick up a screaming child from the school and rushing them to the hospital. I’ve thought about who I would call since David never answers his phone, if I needed help. There are so many mental preparations you can make for something that may never happen.

Imagine my surprise, then, when the first broken bone came with much much less trauma and a little less drama.

Towards the end of our Christmas vacation I started to notice LM favoring her right shoulder. She would cry when anyone picked her up, which is so unlike her. She would even cry when I would barely lift her onto the toilet. My “mom sense” started to notice it more and more and I had that feeling. That one where you know something isn’t quite right. After we got home I made an appointment to take her to the doctor. The morning of she started to act a little more normal. Once we got there and the doctor started moving her arm around she started crying. I then told her, our doctor, that a few years ago I broke my collar bone and had walked around with it for a week before I went and had it looked at. As she felt around her collar bone she looked at me and said, “you know, I think that might be what the problem is.”

We went downstairs for an x-ray then headed home while we waited for the report. It didn’t take long. The doctor called that afternoon to tell us she has a tiny fracture on her collar bone. All I could do is wait and let it heal. We could have gotten a sling for her to wear but that wasn’t a battle I wanted to fight. She was very cautious of using that arm/shoulder that I didn’t think a sling would be even necessary. It was amazing, actually, to watch her. She knew what her limits were and she accepted them, but she also didn’t really let them stop her from doing what she wanted. I’m relieved to say that now, a few weeks later, she is doing so much better. She hardly ever favors her arm now, although I still try to be conscience of it.

So while her story is a tad bit less traumatic than mine, in the broken bone department, it still matters. Because it’s hers.

Musings On Monday

• This weekend Ruth got up Saturday morning and decided to make brownies in her cupcake maker. She used a mix and added the eggs and water but didn’t know what oil was so she left that out. Then she had trouble getting them out. So things got messy. Being creative she shoved them all into a container, topped it with frosting and called it a cake. We had some after dinner last night. David and I gave each other lots of parent points afterwards.

• I made scones. The kind my mom used to make growing up. They tasted just like they were supposed to.
• On Saturday I gave the kids the job of cleaning the downstairs 1/2 bath and their upstairs bathroom. It took them close to 2 hours. Not because they were fighting or being resistant. They were just being very through. At one point The Boy put his swim suit on. I had to walk away.
• LM is struggling with sleep. Not a new thing, it’s been going on for months. I’m taking her to our favorite ENT on Friday. Crossing my fingers for some direction.
• The Boy has started basketball again. This year we’re being a little more brave and not staying around for practices. I think he likes the independence. Practice usually starts at 12 and he is usually read to go by 8. Makes for a fun morning.
• This week MT has a dentist appointment that could involving things like numbness and drilling and otherwise unpleasant stuff. I’m practicing some deep breathing exercises to get us through it.
• I had to give the dentist our insurance information. When I gave them the social security number it didn’t sound right when I was saying it but I brushed it off. They just called to say they couldn’t find us in the system that’s when I realized I combined David’s and my number. What does that say about my brain?
• Yesterday our ward was split. We are officially a branch. It was an incredible experience, one I hope to remember. The meeting was spiritual, refreshing and hopeful. We will now be meeting from 2 until 5 each Sunday. It sounds bad but we’ve decided to embrace the sleeping in and the almost bedtime by the time we get home.

One Fine Day

While we were out in California visiting my parents we were having such a lovely time we decided to stay a couple of extra days. During one of those days we took off on a little adventure. First we went and got donuts from my hometown. It’s THE donut shop. It’s the standard to which I judge all other donuts. It’s an institution, really.

Then we were in search of some really good clam chowder. We drove out to the coast to a place that was recommended to us. Spud Point Crab Co., Bodega Bay.

My, oh, my it was lovely.

We found this girl some crab too. She’s a fan. Big big fan.

From there we drove a little ways up the coast to find a spot where we could get some sand for our sand collection and get our feet a little wet.

We found the perfect spot. Yes the water was chilly, but the sky was clear and the weather was delightful.

That’s my son right there, hiking his pants up as high as they can go.

Of course when the wave finally came in he was out of there.

LM, on the other hand, embraced the clothes getting wet thing. A few times she “fell” while we were running in from the waves. Considering how hard she was laughing I think the fall might have been on purpose.

We found lots of shells. Sand dollars mostly. More than we could carry.

She’s saying, “Here, daddy.” When she wants something she puts her hands out and says, “here.” As in, give it here, right now. She’s ready to get back in the water.

He has a hard time saying no to her sometimes.

One of her “falls.”

And then a wave came and took out the two others.

They were not prepared. And it was hilarious. I know, I know we’re bad parents for laughing at our children. But you would have laughed too. It was that funny.

She got over it. The Boy took a little bit longer but he came around eventually.

See?

We found a huge rock covered in muscles. Much like the rest of the day, it was incredible.

I took a lot of pictures. If you couldn’t already tell.

Congratulations! You made it through.

After all the fun we had playing at the beach the kids were soaked and covered in sand. We made them strip down in the parking lot. We shielded them of course. One in our ranks had major issues, though. Which just made me pat myself on the back for all my “modesty teachings.”

We took a different route home than what we came. The drive was beautiful. Full of tall redwood trees and wineries. David and I just kept looking at each other saying, “that was a really good day.”

It really really was.