Down syndrome

Today I’m grateful for Down syndrome.

 I’ve been really sad. Sad that my only daughter isn’t going to live the life I had dreamed of for her. But mostly sad for me. Very selfishly sad. The “me monster” as my sister describes it came out and  I took some time to feed it for a while.                                                                                   

The more you feed the Me Monster, the bigger it gets. The more food it needs. The more space it takes up in your life. It crowds out Grateful. I’m not sure what kind of creature Grateful is, but, like the Me Monster, it also needs to be fed.  Also like the Me Monster, it can show up at the most unexpected times.

Abby’s been really sick. Her fevers have been high and she’s had trouble keeping food down. Her breathing has been too fast. When she’s like this I stay awake just to watch her sleep. Just to worry. To feed the Me Monster. The other night at about 2 am I was throwing everything I could at the Me Monster. I was mad that my dad had to die.  I could only imagine what kind of support my dad would have been. He loved me so much, we had a special bond from day one. I could only dream of how much he’d love Abby if he were here.

{I should mention that I really do think Dad had something to do with Abby being here. Before he passed away he told me that he would do what he could to be able to check in on me from time to time. That he wanted to be my guardian angel. He said that he knew he had work in Heaven to do, but that he’d do whatever he took to be with me. I think Abby is the conduit. He needed me to have a spirit (or two) who didn’t have the veil between Earth and Heaven- a way to be able to be here with me…I’m not making much sense, but it’s comforting to me. So even though I don’t get to hear him say how much he loves me that he misses me, too, I know that he does. I feel him here}

So then I started thumbing through my Brain Rolodex of trials I’ve been through. Looking for more stuff to feed the Me Monster. I began to see that all of the things that I’ve been through weren’t because I’m supposed to have a life with many trials. It’s because I’ve needed to learn. To prepare. Each thing I went through has prepared me for the next. Watching Dad get cancer and be so sick for so long prepared me for when he passed away.  Having Casey have special needs has prepared me for Abby. Everything has made me stronger. And everything has come with a mountain of blessings. See? Gratitude snuck in.

And it’s stuck around. I’m grateful for Down syndrome. I’m still sad that her life is going to be different, and I don’t know if I’ve truly come to that nice place of “Acceptance”, but I’m starting to see more and more what a blessing Abby having Down syndrome is in my life. I’ll tell you some of these blessings:

I’ve always been a fast paced person. For a class in College we had to write our life story. If you can’t read it, the professor wrote on mine: “What a whirlwind of a life- slow down and think things through. You are such a special girl with a great future but don’t rush through it!” so what did I do? I got married a couple of months later- and just a couple of months after my 19th birthday. Had my first child when I was 20, my second when I was 21 and third when I was 23.  I’ve always been anxious for the next step. Down syndrome is teaching me how to slow down. To be grateful for each and every day. I thought I’d learned that lesson with Casey. Because with Casey, too, everything has to be taught. So that when he reached milestones, it was a much bigger deal because we had to fight to get there. But with Abby, everything has slowed down even more. She’s nine months old and still is small. She’s not sitting up on her own and has just barely begun to feed herself a little. She’s the same weight and ‘developmental’ age that Carter was when he was 4 months old. It’s like Down syndrome has taken her infancy- and she’s my last child so I want it to go on forever- and stretched it out. When I was keeping the Me Monster satiated, I used this is as food. But now I see how lucky I am to get to have a baby who stays a baby a lot longer. And then when milestones are reached- what a party it is!

This week for the first time Abby was able to grasp food in her hand and bring it to her mouth.

Down syndrome has shown me how wonderful people are. I’ve never felt so loved in my entire life. I’ve never been so grateful for friends who are still friends with me even though they know that I’m going to force them to carry my burden from time to time.

Down syndrome has shown me especially how lucky I am to have the family I have. This week I posted an entire menu of things I was frustrated and sad about on my family’s website. Everyone came back with love and support. No one judged me for being ungrateful and lacking faith. I spent a long time on the phone with my older brother, Travis. He listened to me cry and be all sorts of wimpy and then told me how strong he thought I was. That he knew that I could handle the load I’ve been given. It means so much coming from him. When we found out that my dad was going to die one of the first things Travis told me was that he was going to be there for me. And he has been. He’s been the closest thing to a father figure I’ve had since then. So when he says he’s proud of me, it means as much as if it were coming from my dad. His voice sounds more and more like my dad these days, too.  I think about the lines from my favorite Mumford and Sons song:

…and you are not alone in this. As brother’s we will stand and we’ll hold your hand…hold your hand”

And of course, my own family. Down syndrome has made me grateful for the laughter that Peyton brings into my life. For the kind of kid Carter is. Carter is proof alone that God has his hand in my life. He’s the perfect oldest child for the siblings he has. It’s made me grateful for Casey and the journey we’ve had with him. But most of all, it’s made me so grateful for my husband. Who’s never looked any differently at our kids with special needs and the ones who do not. He just loves them without reservations. And me, too. He’s my rock. He’s my best friend. Many days, he’s my spine. He’s the best gift I’ve ever been given.

Down syndrome has also thrown me in the world of other parents who have (or will have soon) Down syndrome kids. I’ve met the most amazing people. People who make me want to be better, stronger (faster?) just because I know them. Like Melissa. And even though I don’t personally know her, like Kelle Hampton. Parents who have shown me that life is so beautiful BECAUSE we have children with special needs. It also puts me in the world with the kids who have Down syndrome. These kids have the most amazing spirits about them. You’ve felt it around Abby? Can you imagine the power in being with a bunch of them? I’m so lucky! Check out this page on Kelle’s site and tell me you don’t think I’m truly blessed to be able to associate with such amazing spirits: It makes me cry tears of joy just looking at them.

Down syndrome has also taught me how to cry. I want to say that I’ve been a rock my entire life, but that’s not true. But in recent years I feel like I’ve hardened up a bunch. I stopped crying. It was just a side effect of the prozac, either. But these days, the tears live just right under the surface. I feel more. Good and bad. And I’m grateful for that.

Wow. The cheese in this post is so tasty.

I think Grateful likes the taste of it, too.

17 thoughts on “Today I’m grateful for Down syndrome.

  1. This post totally made me cry! Instead of writing an incredibly long comment, I will email you…if I remember! Your family is amazing!

  2. All I can say to that is…I love you, and I am thankful I get to call you my friend. Thank you for teaching me so many important things.

  3. Lexi you never cease to amaze me and I love every one of your posts for their honesty. And I just can't get over that picture of Carter holding Abby–what a sweet and special moment.

  4. maybe abby doesn't feed herself because you feed her disgusting crap. what is that, like a rice cake? give her a snickers or something.i also love that picture of carter and abby. carter is special to me. i'm glad we get to basket cases together at this time in our lives. makes me love you more. i'm proud of you too.

  5. The "me monster"….I'm glad you gave it a name. I have one of those two, and today was one of those days that I was scrounging for crap to feed it. And I have to say, it was actually Peyton who snapped me out of it! Lance and the boys were sitting by us in church, on the chairs at the back. Peyton REALLY, REALLY wanted Sean to, like, switch place with him so he could play with Patrick, smootch on Maren, whatever. Lance kept moving him back over and over. Anyhow, at one point I got up to bounce the baby at the back and was watching as Sean got up just enough to reach waaaayyy over into the diaper bag for something Kennedy wanted. His butt had been off the seat like .3 seconds and Peyton slide in there on Sean's chair. Of course, Sean without looking moved right back onto his chair….pretty much on top of P. (I'm dying laughing all over again about this….event though you probably had to be there…) and Peyton just says, "Dude, I just want to sit by Patrick. Don't sit on me, okay?"Anyway, I dyed laughing and still am and somehow in there forgot to keep the me monster fed for long enough that is shut up for today. We all need Peyton for that apparently.

  6. I just wrote a super awesome comment for this, and when I submitted it, Google screwed up and lost it. What's my problem with technology, I wonder?So, I'll try again. I want you to know how much I NEEDED to read this tonight. What a huge blessing that you shared this about your life. Basically all I've done today is cry (could have something to do with the 2 hours of sleep I got last night). I think the closer I get to this baby being born, the more freaked-out I get about the reality of it all. I mostly think that, sure, his heart can be fixed, and so can his feet, but the Down syndrome? That can't be fixed, no matter how many different therapies he gets. But you made me see (hopefully for always, but at least till tomorrow, when I start to panic again) that maybe it doesn't NEED to be fixed. You, the mom of a girl w/ DS, saying it's a blessing, was a huge smack in the face with reality. I'm so glad you shared that, because I think if I'd had to figure it out myself, it would have taken a long time. You're SO right–my fears and sadness are all a product of me worrying about me. So, anyway, maybe it's late and I'm hormonal and tired and I'm talking like a drunk person here, but, I love you, man. I'm so, so glad Heavenly Father dropped you into my life when He did, cuz I need your perspective and your wisdom.

  7. What a beautiful post. It got me all teary eyed too. What you wrote about your dad really resonated with me as I feel my dad had something to do with my Miss K being here with us. I think she is his connection to me.

  8. Wow Lexi! I have to say that I rarely get on facebook but this morning after working out I did. I fee like it is a blessing from Heavenly Father. Even though I cried my eyes out while reading your post (and can still hardly see through the tears) I am so grateful. Grateful for your strength and your friendship. Grateful for your honesty and opening your heart and sharing. I I think we feel so many things in life but for some reason don't share them. It is a blessing that you have and maybe we should more often. It is a blessing because it helps me not feel so alone. I know that we need to rely on our Heavenly Father and Jesus Christ, but it is nice to have people right here who help to give us strength. It is a blessing because I feel like lately my emotions are so full they might explode, and yesterday they did as I cried through Relief Society, and I tried not to show it. I know I have so many blessings and so much to be grateful for it is a good reminder to focus on the positive. I know that I don't see you much these days, but what in the world am I going to do when you go to DC for a year? I love you and you are a true blessing in my life!

  9. This post brought tears to my eyes. You are so very, very lovely Miss Lexi … and your honesty is unbelievably refreshing … and those little Spirits you've been sent are so lucky to have you.

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