DOWN SYNDROME AWARENESS MONTH // more alike than different

Since yesterday I ended the month posting about Halloween, I thought I would wrap up Down syndrome awareness month with one more post on the first of November. And it's kind of fitting really because Down syndrome awareness doesn't really stop on the 31st of October, especially now in our home. We plan to make it a life-long endeavor.

The day Lindie was born God rocked our world. Since then, he has taught us to trust him, to let go of control and to savor each day as it unfolds. In some ways, Lindie is different than you in me in that she has a little bit more DNA in each of those cells and that she may require more doctors appointments and therapy visits.

But it most ways she is really just alike you and me. She is just as much a person as the rest of us. She giggles sweetly, smiles brightly and loves fully. I am excited to see her grow more into her personality. I can't wait to know her favorite color, her first word and the things that make her heart burst.

Really we're #morealikethandifferent.

...

Even though I don't plan to blog daily going forward, I do plan on blogging regularly- still sharing our family moments and important thoughts in our journey. I hope you still join us as I do!

Happy November 1st! We're starting the Christmas tunes in this hiz-ouse!

Halloween 2017

Lindie as Mr. Dinkles & Eliza as Princess Poppy (from Trolls)

So much fun was had in the Swift Abode this Halloween. 
We decorated pumpkins with friends,
dressed up for Eliza's dance class Halloween party,
went to HallowZOOeen for year three, 
went to our church's fall festival,
carved pumpkins,
ate scary pancakes at IHOP
and (of course) Trick-or-Treated around the neighborhood.

Eliza's favorite parts were coordinating costumes for her and Lindie, seeing the Disney princesses at the zoo and passing out candy to all the Trick-or-Treaters Halloween night!
 I think it was a pretty sweet Halloween, indeed!

DOWN SYNDROME AWARENESS MONTH // to an expectant mother

According to research, 70% of babies in the United States that are diagnosed with Down syndrome prenatally are aborted. 70%. And in some countries this rate is even higher. (Iceland is known for having a 100% Down syndrome abortion rate).

I've written about how I wish I would have done genetic testing with Lindie so we could have known ahead of time that she has Down syndrome. I would have wanted to know so that we could prepare more and also so that we could have saved the drama of the emergency room.

Another reason I wish we could have known prenatally is so I could have chosen little Lindie. Instead, she came into the world with a bang and was thrust on me as a diagnosis first, rather than my child first. I imagine if I had found out ahead of time I would have had more time to make my peace with her diagnosis and be ready to welcome her as my baby girl first, rather than a diagnosis first.

But on this Monday morning I've been thinking so much about this alarming abortion rate, and I've been thinking about my own reaction to my daughter's diagnosis on her birthday, and I can't get it out of my mind. 70% is so high! (And that rate is supposedly down from years before).

I can't help but think that a great deal of those that choose to get abortions do so out of fear (having a baby with Down syndrome is scary!) and a lack of knowledge (unless you know someone who has Down syndrome, you probably have a lot of learning to do!). But I also assume that a lot of mamas choose to abort their babies who have Down syndrome because they, like me, only know what culture tells us Down syndrome is and don't actually have a clue what having a child with Down syndrome is really like (it's a lot more normal than you think!).

I get it though. I'm still a newbie. My babe isn't even a year yet. But even so, I have so much good news to share!

Mamas, Expectant mamas. Future mamas. Maybe mamas that aren't even mamas yet but will someday be mamas: I want you to know that despite all the scary and challenging things you think it is to raise a child with Down syndrome, I want you to know that it is really, really good too. There are hard things. Yes. Those are the things we all hear about. And there are hard things that happen with any child, Down syndrome or not. But there are beautiful and joyous and life-changingly good things too.

I love the way my daughter's eyes light up when I go into her room after a nap. I love the way she babbles in the morning when she thinks she's alone in the room. I love the way she folds into my neck when I hold her on my shoulder and how she plays with my hair. I love the way she giggles and smiles with her whole face and is comforted by my touch.

I just love her. And had she not been born I would have missed out on all that beauty.

I didn't get to choose Lindie, but everyday I tell her I would.  Mamas who are there. That crazy, awful, unique scenario. You have a choice. You do get to choose. You have a unique opportunity to rise to an incredible occasion.

You are not alone. You do have a choice. Your life is not over. It's going to be beautiful. Messy and beautiful and real and hard and all of those things. But it is going to be good,too.

DOWN SYNDROME AWARENESS MONTH // seventh generation


I was selected to receive a sample of the new Seventh Generation Coconut Care moisture lotion AND Free & Clear diapers with new unbleached cotton quilted liner, for free as part of the Generation Good community. 

We are big seventh generation fans, especially since Miss Lindie arrived. She had such crazy sensitive skin! Seven generation is the only brand that doesn’t make her break out in a rash. We 💛 them! 

Check out the new cute diaper prints!

DOWN SYNDROME AWARENESS MONTH // be kind

Be kind.
Even more than that:
Be kinder than necessary.
It's so easy to be a jerk these days.
Don't be a jerk.
Be kind.

DOWN SYNDROME AWARENESS MONTH // the helmet

(this is tired Lindie Fern)

I have had a number of people ask me why Lindie has a helmet, so I thought today I would answer that question---

I had a feeling Lindie girl would need a helmet pretty early on. I remember asking the nurses about her head in her first week of life, knowing she would be laying on her back due to being in her NICU bed.

Then after coming home from the hospital she had (and still has) such a hard time with tummy time and rolling over, she would usually end up on her back in her play yard. Those things, combined with countless hours g-tubing on her back and even more hours sleeping, led to some definite flatness of the 'ole head.

At her four month appointment I asked the pediatrician if she thought she needed a helmet. And at six months we got the referral to be evaluated for it. After the evaluation we were basically told that Lindie has a square head shape and that it was just on the beginning of the moderate helmet-needing-spectrum (I'm sure there's a technical name for that!)- which means a helmet is recommended. Thankfully for Lindie the need for the helmet is cosmetic, but we thought it would be worth it. And insurance is amazing and paid for it, so bonus!

She has had it now for over a month. She could have it for another 6 months. I'm hoping it's gone by Christmas. (Fingers crossed)! She wears it 23 hours a day. We take it off once a day to clean while she gets a bath or (as Chris likes to all it) a salon treatment (washing her head at the sink). I can do everything I normally do with her in the helmet, things just get trickier- like changing a onesie. I even wear her in my Maya wrap with the helmet. Not a problem at all!

I told Chris that when all is said and done I want to frame it in a little glass box and put in on a shelf above her bed. (#Helmetgoals)

So that's why Lindie has a helmet. Although, I like to think it's protection for when she rides her motorcycle...

DOWN SYNDROME AWARENESS MONTH // sisters

The day Lindie was born we grieved for a few reasons. One of the reasons was for Eliza. We grieved the relationship we had expected our daughters would have. Even thinking about it now, it's silly really. The dreams I had for my daughters, regardless of their genetics. Because regardless of genetics we have no control over our daughters lives and relationships and future. We are not guaranteed tomorrow.

Even so, we grieved.
And yet there has also been so much beauty in watching their relationship flourish.

No, their relationship will not be what I expected it would look like twenty or thirty years from now, but their relationship right now is beautiful and rich. And I have no doubt that twenty or thirty years from now (God-willing) their relationship will continue to be beautiful and rich in different ways.
There are things I see in my girls that make me believe that the Lord gifted them to fit each other perfectly. Eliza is compassionate, outgoing and so inclusive. Those qualities will make her a great big sister for Lindie. Lindie is joyous and easy-going and her face lights up when she hears or sees her sister. Those qualities will make her a great younger sister.

Eliza will be a better Eliza for having Lindie as a sister. And Lindie will be a better Lindie for having Eliza as a sister. I am positive of that.
It's also interesting to me that according to research the majority of siblings to individuals with Down syndrome are proud of their siblings and would not choose to change them if they could. That's hopeful.

My prayer for them is that they both love each other fiercely and that one day they spur one another on in their love for the Lord. Because at the end of the day, that's the goal for our children- that they would know and love the Lord and help others to know and love the Lord.

Here's a few of my #rosieandfern favorites:
Thank you Jesus for both of my girls.

Parents or siblings ahead of me in the journey-- any thoughts or words of encouragement on this topic? I'd love to hear!
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