Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Saturday, July 29, 2017

Rebirth

September 26th, 2011.

This day will always be reflected upon as a day of rebirth for me. A day of growth, of expanded horizons. A day of changed expectations and the beginning of a future unknown. Embarking on a journey is always a gamble, but usually you can see where your feet might land. This day is my line in the sand, forever marking before and after.

I couldn't see the ground in front of me. I couldn't see even one minute in the future. This was a day that began a blind journey into an unknown land. Holland, if you will.

This is the day we found out our unborn baby had Down syndrome. It was so terrifying and a day of total unknowns. It marked the start of a journey that would lead us down a road full of both valleys and indescribable joy.

We could never have know where we'd land six years later. Or rather, that we'd never quite land. This journey is always evolving, always growing, and always teaching.

We could never have known she'd bring us such joy. Or that she'd be so full of love. We could've never guess she'd mend our family where we didn't even know we were broken. On this walk of life our valleys are deep. But our mountains are so, so high. We're often taken onto an unbeaten path where we might not quite know where we're headed, but it's probably going to be breathtaking.

She's changed me as a person. She's molded my outlook on life. Through her I've learned patience. Unconditional love. I have learned perseverance. I've learned that judging another person either for their behavior or their choices leaves no room for compassion or love. I've learned to accept help when it's offered and ask for it when it's needed. I've learned that the world won't end if I admit that I'm drowning (still a work in progress). I've met people both in person and through technology that I'd never have known otherwise. Because of her, I'm fortunate to work in a place that values diversity and celebrates the strength of each person individually.

Make no mistake, it is not easy. It can be hard to admit sometimes that this is hard. In all honesty, this is not a journey I would've chosen for myself. I don't believe that "God doesn't give you anything you can't handle". This life can be very hard sometimes and I don't think there is anything shameful in admitting it. It can be lonely. Exhausting. Frustrating. But the rewards are immeasurable. It is always worth it.

Her times of elopement, her tantrums that are far past chronologically age appropriate, her extremely stubborn nature, her impulsiveness. These would try the patience of a saint! But her unending I love you's, her enthusiastic thumbs up or thumbs down responses, her thirst for knowledge, her no quit attitude. Her squinty-eyed smile. Her hypotonia-induced, body-melting hugs. Her willingness to try. Knowing how hard she works for every small gain and seeing her take such pride in her accomplishments. These make everything so gratifying, so incredibly joyful.

This journey is hard. But so, so worth it.

This is Lauren Hope.


Wednesday, July 19, 2017

Therapy day

Wednesday is therapy day for both kids. Lauren's summer therapy program is Mondays and Wednesdays. Ryan gets feeding therapy on Wednesdays.

Ryan did awesome today! He tried vanilla greek yogurt (with orange food coloring). All of those things are crazy for him to try. He doesn't like vanilla. He doesn't like yogurt. And the only thing orange he eats are Cheez-Its! I'm super proud of him. He gets done an hour and a half before Lauren, so I took him through McDonald's for pancakes and then we went to the park! It was really a great day.

Lauren had a lot of fun at therapy. She colored a little booklet about dinosaurs. Each page was a different dinosaur that she scribbled with a different color crayon. She was so proud of this! She ran out of class, sat on the floor in front of Ryan and me and said, "Let me tell you!". Then we got home and she showed Greg. I asked if he liked it and she said, "He tell me good job!" It's so fun to see her so excited and engaged. She did elope briefly on our way out of therapy, she darted forward, was ducking under adult arms and dodging kids left and right. She stopped right before the parking lot. I didn't bring Monte because we had a long day (left the house at 11am and didn't get home until after 4). I'm thinking that was a mistake and I gave her a little too much freedom. Regardless, I call it a win.

I've been a little overwhelmed with life lately, so if you're the praying type I'd appreciate some prayers or kind thoughts. Greg is working a ton and I feel like I'm shouldering the entire burden of childcare, home stuff, medical stuff (for both Lauren and myself). Plus working full time. I. Am. Tired. I'm so thankful that Greg has a good job, and thankful he's able to work so much. But I need more hours in my day. More days in my week. Maybe I just need a wife?

Friday, July 14, 2017

Choosing grace

Lauren's biggest behavior struggle is her impulse control. She is super impulsive and it can cause her to be unkind when she really doesn't mean to be. It's worse when she's constipated, so that's an added layer.

We went to the grocery store tonight, just her and I (plus Monte of course). She was SO sweet and affectionate. She hugged me, kissed me, told me she loves me, held my hand, rubbed my head. I cherish those moments so much.

She also took a bite out of several plums, almost bit into a radish until I caught her face with my palm, hugged a basket of bagels, and knocked on my face (imagine knocking on a door...except for it was my face). She also grabbed my grocery list and threw it on the ground multiple times. She tossed my credit card onto the conveyer belt three times. She got to pick a candy for not eloping (she chose to hold onto Monte's back instead of using her tether and I'm trying to give her a little independence). She then changed her mind and threw the original choice on the floor and stomped on it. We bought smashed peanut butter M&M's 😂 This was all while I was trying to unload our groceries and pay the poor cashier. He was so incredibly nice and I tried to explain by saying ,"We're just having one of those days". He said thats okay, he sometimes has days too. Another woman I thought was judging me in the produce aisle actually approached me and said her adult daughter has Down syndrome and just wanted to say hi.

It's so incredibly nice when people see a family struggling and instead of judging choose offer grace and compassion. I can't put into words how much I appreciate it. It made the difference between laughing and crying for me, and the truth is I was on the cusp of both by the time we headed up to pay.

Tonight as I rocked her to sleep she told me, "I love you mommy. You kiss me mommy? I hug you mommy". And then she said, "I pull your hair please mommy". Uh, negative on the last one. But seriously, so sweet!

Today was not easy but it was a day I really saw her sweet personality behind her impulsive behavior. And she really is such a great kid. We took her for ice cream when I got home from work (Ryan got to go to a Tiger's game tonight with my dad, sister, and nephew). She thanked us multiple times and was so, so adorable. She was so chatty all day. She told us "Red means go, green means stop", and then cracked up because she knows that's not right. She then said, "That's silly! Green means go, red means stop!"

I am so thankful for this beautiful and complex child. As others choose grace with us, I have to remind myself to choose grace with her and today was a great reminder for me.

Wednesday, July 12, 2017

Truth

I'm afraid of jinxing it...but Lauren's behavior has been great! We still have the "I not love you" if things don't go her way. But she and I went grocery shopping alone (no Monte and no dad) and it went awesome. The next day we went to the ENT doctor (she needs her tonsils out and possibly tubes 😣). The next day I took both kids and Monte to Target and everybody was awesome.

The small successes all in a row feel like a huge win! I don't know if I've shared this here in the past, but I have anxiety and depression. Medication certainly helps but it doesn't make it go away. Some days it feels like I'm under water with life and I can't quite reach the top.  Some days it's like swimming upstream just to do normal, every day, adulting things. But the good days? Those are hard won victories I will cherish and take whenever I can get 'em.