Welcome to my blog!

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

Sunday, June 28, 2015

Update

Its been a while! I'm not even sure if I have any readers left!

We've been enjoying the heck out of summer so far! We went up north (northern MI) as a family which was so, so fun. We got to go to Mackinac Island, where Greg amd I had our honeymoon. My Ryan is conquering fears left and right and even jumped off the dock into the lake by himself. Lauren was a little to eager and almost turned swimming into drowning, which scared the crap out of everyone.

This week we had a carnival in our city and Ryan rode on all the rides, tried some hot pretzel and got a lot of exercise! We found out neither kid likes cotton candy, which is so foreign to me!

Lauren's just started her summer therapy program. She goes twice a week for 2.5 hours, its OT, speech and music therapy in a preschool type setting. She's been doing so well with speech lately we just felt it would behoove us to keep her in a classroom setting over the summer to prevent any regression.

We're all moved into our new house and adjusting well. It feels kind of like we'll never be done moving in or completing projects but I'm surprisingly totally okay with it. I am LOVING our new house and neighborhood. Its awesome being back where in grew up and I've already run into some old neighbors. This adventure is so, so fun and I'm really enjoying my dream house. I feel so thankful to be here.

Today at the carnival we had Lauren in her wheelchair. Its like a stroller on steroids! We came across a man with his friends, he was in a wheelchair too. He took one look at Lauren and said, "You're lucky, you have people pushing you!" I love when people aren't afraid to acknowledge a wheelchair, or Down syndrome or something different. That's something I really hope to reach my kids- different is more than okay! I want them to know it's a good thing to be different and to have friends that are different too.

I can't wait to see what the rest of the summer holds! We're having friends over for dinner this week and hosting a party of the 4th of July, both are sure to be so fun!

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.

Right?
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.