Welcome to my blog!

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

Saturday, May 2, 2015

Lots of news

We have had a LOT going on.

We sold our house! We should (fingers crossed) close on our new house this week. We're staying with my in-laws for the time being. We never expected to sell our house so quickly!

Lauren had her ballet recital today! It was so much fun. She took some major prompting to actually dance, but she did it. It just also included fruit snacks, her stuffed lamb and mommy all on stage with her!

The real star of today was Ryan. He was so sweet all day! He shared ice cream with Lauren after her recital with no prompting. Then we went to target and the kids were thirsty. I bought a bottle of water, planning to pour some into Lauren's sippy cup once I returned our cart.

While I was returning the cart he shared the water with her and helped her drink out of the bottle. She didn't have a drop on her clothes. Can you imagine the care that must've taken? For a five year old? Swoon. He is one amazing big brother.

Friday, March 13, 2015

Deciding to be done

I have agonized over the decision to have another child for the past three years. Greg has always wanted two children. I had always wanted three.

I hated the thought of Lauren having Down syndrome having any part in our decision. Because I would choose her over and over again. And I would welcome another child with Down syndrome happily.

But I also know how to protect myself and my heart. We are at a greater risk for a baby with any chromosomal disorder, not just Down syndrome. Sometimes I feel like I barely came out alive after Lauren's hospitalization, illness and surgery. I'm a totally different person than I was before we had her. I'm still not totally sure if I like myself better then or now, but the result remains the same. I am different. Anyone with a child who has been critically ill will likely tell you the same.

I'm not one to live my life based on "what if", truly I'm not. But I do feel that I've come to a point where I need to protect myself.

When we found out Lauren had Down syndrome we were offered termination. I immediately and angrily refused and demanded it not be brought up again. I could never choose that.

I hate the question mark that follows that word. I hate that its become a question for me.

And here is where the "what if" comes in. What if my next pregnancy resulted in a chromosomal diagnosis considered "not compatible with life"? Of course I want to think I would never terminate. But I have lived through the pain of not knowing if my baby would make it. Not knowing if I would bury her in the outfit I chose for her to wear home from the hospital. Not knowing if I would ever again hold her with a beating heart after handing her to the surgical team. I have lived through the self-loathing that comes with the failure to bond with a baby I wasn't sure I'd get to keep. And I know I can't ever put myself through it again.

I felt guilty for wanting another child- like people would think Lauren wasn't enough. And I felt guilty for not wanting another child- like people would think I was too afraid to have another child like her.

There are no guarantees in life. I know this to be true. I thank God every single day for the amazing, beautiful, healthy and PERFECT children he has blessed me with. They are my world.I am content.

I am protecting my heart with a fierce sense of self-preservation that I no longer feel like I need to apologize for. This new woman I have become since Lauren changed my life is more confident, independent, and I can now trust that the Lord has awesome things in store for our family as we are.

I am healing.

Wednesday, March 11, 2015

Meeting friends!

One of the very best parts of our Down syndrome journey is all of the friends we've made. We literally have friends all over the world who also enjoy their lives with chromosomally enhanced children. We've received gifts and cards from friemds- and most importantly for me as a mom, I know there are women everywhere who "get it".

Most recently we got a postcard from friends all the way in Indonesia!!!

I love this journey.

Saturday, March 7, 2015

Talk it up

Lauren's speech has really taken off in the past couple of weeks. It's amazing!! She will repeat anything- provided she feels like it.

Her new phrases are Let's go! and Come on!

Can you tell patience is not the strong point for a three year old?!

I am loving this. I worried if she'd ever be verbal. Obviously she is way behind her typical peers, but well, she isn't typical. I'm thrilled with her progress.

I took her out to dinner yesterday with friends and the restaurant has a ton of TVs. One of them had baseball, which apparently Lauren loves! She was shouting "Yaaaaayyy" and clapping. She also said "baseball" about ten times! Once the baseball game was over I had to get out my phone and find baseball on YouTube for her to watch. It was a riot! She ate French fries, dipping each fry in ranch dressing. She also insisted on kissing each French fry for a while, her love knows no bounds.

While we waited for our table she borrowed my chapstick and made both of us apply it multiple times. Once we (finally) got seated, she waved to the rest of the hungry and waiting crowd like Miss America and told them all, "Bye!"

She says Mom, Dad, Pa, Grandma, Tio, 'Sus (for Jesus, her cousin), Mel (for Melanie), Ry, Mar (for Martha). She can say the names of several more family members.

She had her end-of-the-year progress report sent home. She's doing really well with her IEP goals! She's met several of her speech goals. She's doing pretty good with her physical therapy goals but still needs work. She has days where she's really steady on her feet and days she falls a lot. Not too shabby for a kid who just started walking 6 months ago! She has a tiny issue with stealing her classmates' seats when they get up, which cracked me up. I can so picture her doing that! Her teachers and therapists are recommending she repeat the 3 year old class next year with continued speech and physical therapy. That is exactly what we wanted! She started early at 2.5, so we assumed she'd do two years in the 3 year old class.

Overall, life is great. And so, so different than I expected. When we found out Lauren had Down syndrome when I was pregnant I could not (or would not allow myself) to see this far into the future. She is truly a joy to parent!

Ryan's parent teacher conference went AWESOME! They said he's totally ready for kindergarten in the fall. He's really excited. I am so excited for him, yet so sad that he'll be away from me all day. It's once step closer to both of them being at school all day and I feel like I'll fall apart when that happens. Thank God we get a couple more years of half-days for Lauren.

Spring is thinking about arriving in the Midwest. Next week it's supposed to be in the 40's for a couple of days!! I can't wait to air my house out and deep clean take naps while the birds sing!

Wednesday, February 25, 2015

Smarty Pants!!

Lauren Hope is the smartest kid ever!

No, seriously! We were talking about going to Target today and she grabbed her shoes and SAID "I want to go bye bye!" My mom and dad were over and both heard it!

What?! She also said "purple" and "baby" today. She's been repeating (or trying) everything lately. This is my favorite time of toddler-hood! She asks us what everything is lately by pointing and saying "that!"

And once we got to Target she refused to pick out a toy and insisted on a book that we already have. So I let her read the book in the cart all the way through Target and quickly got rid of it before we paid. Grandma distracted her with chips and cookies! (We are so those people.)

Never in a million years did I ever expect when we got Laurens diagnosis that she would make me so proud. She is amazing. She tries so hard and accomplishes everything she sets out to do- even if her timeline and mine don't always match up.

Monday, February 9, 2015

Three year well-visit

Lauren had her three year old checkup last week, with a new pediatrician! We had to switch doctors (and to a new health system) due to our health insurance changing. I was nervous.

It went great! The doctor is a man in his mid-fifties, and Lauren was at first unimpressed. She did end up giving him a high-five which is all that can be expected since he did listen to her heart.

And the best news? Her CBC was NORMAL!!!! Over the summer she had two separate draws that were concerning enough for hematology/oncology to be consulted. So this was such a relief!

Today at school Lauren's bff (a fellow heart warrior who has her third OHS coming up soon) gave lauren a present. Its a beautiful blanket embroidered with Lauren's name and surgery date on it. Something to be treasured for sure! Lauren loves it and is napping with it at this very moment!

We are blessed.

Friday, January 30, 2015

Growing up

Just in the last few weeks, I feel like my little girl is growing up so fast. I wish I could slow it down, didn't I just have her a few months ago? She's going to be three years old in just two weeks.

She's lost her baby looks and she doesn't even really look like a toddler all that much now. She's a little girl. A beautiful, smart, healthy and perfect little girl.

When I think of how many babies with Down syndrome are aborted, I can't help but wonder. Who wouldn't choose her? Who wouldn't want her? I would choose her again, and again, and again. She is such a joy to raise. It's hard when she misbehaves (which is a lot, she is almost 3!) because she looks so incredibly cute that it just feels wrong to discipline her. Even my tough-as-nails husband agrees. He's better at the discipline than I am, thankfully. Ryan will yell at anyone who dares to be mean to his sister (including when I tell her not to do something. He just told me recently, "She can do what she wants!")

She's growing up. She's getting (marginally) better about having her hair brushed. She tries to put her shoes on by herself. She repeats everything she hears, even if it's almost impossible to understand some of it (unless you're grandma!). She loves to be read to, especially Does a Kangaroo Have a Mother, Too? by Eric Carle. She loves to dance, she loves to sing, she still loves dogs and cats more than most people like humans. She has a great sense of humor and is surprisingly clever. She has friends, she loves babies, she colors at church in Sunday school.

But my favorite thing about Lauren Hope? Her ability to love. Unashamedly, unabashedly, truly, deeply, unconditionally love. We recently had a death in the family. Greg's uncle Carl passed away. He was such a great person, he loved the Lord, loved his family and thought Lauren was the best thing since sliced bread. When everyone gathered at family's homes in the days surround his death and funeral, I'd swear Lauren was the balm to open wounds. She hugged, she kissed, she smiled, she laughed, she loved.

I'd be lying if I said Lauren's future doesn't scare me. I get panicky when I think about Kindergarten, which is more than two years away. I worry about her being teased in elementary school, being accepted in high school. I think about her getting older and needing me to encourage independence when I know for a fact I'll want her with me always.

But one thing I never worry about is her capability to love. I know that long after we've left this earth, Lauren is leaving a legacy of love that few have done before her. Lauren brings out the best in people. She meets new friends at the grocery store, can charm even the most sullen cashier out of a sticker. I don't know if she will be "main streamed" in school, if she'll graduate high school with a regular diploma, attend college or hold a steady job. I don't know if she'll get married, though I hope she gets to experience the joy of  romantic love. But I do know that she is changing her world. Maybe not the whole world, but her world, in the most positive way. We are so blessed to be her family.