thoughts

Thanks y'all for all of the sweet comments on yesterday's post. Cate said that she wished she had a time machine to go back and hug us and let us know how things were going to turn out. All of us, all the new mamas.

I wish I could do that for the new mamas that are finding out right now. The ones getting shocked at birth. The ones getting unexpected test results. I wish I could tell them that it's going to be fine. Your child will rock. Your family will stretch and grow. Your world will get bigger and better in ways you never imagined. It won't be easy, but it will be good.

But, I think that it's a road you just have to travel for yourself. You have to be the one thinking: "Well, I'll just have the superstar kid with Down syndrome." "We'll get all the therapies! She'll be fine!"

And then realizing that your child rocks because they just do. Not because of when they hit milestones, or when they speak, or when they potty train. Not because of how closely they mirror their "typical" counterparts. Just because they ARE.

I think part of my guilt around Kira's birth centers on the fact that I totally discounted a huge chunk of society. And I didn't even know I was doing it. I just didn't see kids with different abilities, I mean really see them. Sure I thought, "I don't think I could handle that" and "those are some really awesome parents" when I saw kids who obviously had challenges. But I didn't see the value in the kids, themselves.

Now, when I tell a mom of a newborn baby with Ds, "Congratulations!" I mean it. Because that's a new life right there. Full of possibilities. Full of promise. A whole new journey.

And for the mama? It's not a detour. It's not a roadblock. It's a wider path. And when you're ready, and you look around, it's full of amazing people walking it with you.

And it rocks. Thank y'all.

The bubble

I don't know if I'll ever write down Kira's birth story. That was a tough 24 hours. I don't like to think about it, although I often do. Her birthday is always bittersweet for me. It gets easier every year, thankfully.

What I do want to write down is a remembrance of the 4 days after her birth. Kira was jaundiced and had a tough time keeping her temperature up at first. She had to stay in the hospital for those first few days. We were lucky that, at the time, my mom worked at the hospital. We were able to use a hospital room all day with Kira and it was such a gift.

My mom would get to the hospital really early to hold Kira. She would call me and say, "This girl is hungry! Are you on your way?" I'd be in the car, or in the parking lot, or running into the hospital. Kira and I would struggle through nursing for a bit, then I'd pump to get like an ounce or two of milk for a bottle feeding.

Derek and Jackson would arrive shortly thereafter and Mom would head home for some rest. We'd spend the day holding Kira under the light, trying to breastfeed, pumping, and seeing friends and family who would come to see Kira, entertain Jackson, and feed us.

Jackson would fall asleep for a nap on the hospital bed at some point. We'd all stay until late, then head home for the night. We'd do the whole thing again the next day.

I am so thankful for that time. It was like we were all safely tucked inside a bubble, figuring out who our little family was now. It gave me time to get used to the new reality. It gave me time to realize that, more than anything, I just wanted to take my baby girl home. I didn't care about Down syndrome. I just wanted her to be healthy and home.

The nurses at the hospital were so awesome. They took such good care of us. I never thanked them properly, and I feel bad about that.

I don't think my Mom knows how much those days meant to me, either. That little bubble of time was a precious gift. Mom, it's the best present you've ever given me. Thank you.

Big Kids

Yesterday got away from me before I blogged. I guess it'll be 30 for 21 for me.

We've had a crazy week around here. After a healthy summer, the kids, of course, managed to come down with a nasty virus three weeks into school starting. Jackson started running fever last Saturday. Kira started on Monday. I took them both to the doctor for strep tests. Not strep.

On Wednesday night, Jackson was still running fever and it got up to 104.4. So, back to the dr we headed on Thursday. Not mono. Not flu. Headed to the children's hospital for xrays. Not pneumonia.

On Thursday, Jackson's fever broke. I've found that his illnesses require a sacrifice of expensive medical testing before they'll go.

Kira ran fever for over five days, too. Though she never ran that high. It's funny because people assume that she's our medically fragile one. I always mention that she started crawling a week and a half after heart surgery. She's a tough chick.

And speaking of her heart surgery...we got the all clear from her cardiologist last month!! She only needs to see Kira on an "as needed" basis from now on!! Kira was born with a PDA and an ASD. Her cardiologist attempted to close the PDA with a device that essentially plugs it up, but Kira's was ginourmous and the device pulled right through it. So, on Feb 14, 2008, she had surgery to close it. They went in through her side and deflated her lung to get to it.

We thought she would just have to live with the ASD, luckily it was small. But when she had her echo done last month, there was no sign of the ASD!! Woo-hoo!!

I am so thankful that we have Cook Children's Hospital. My kids feel right at home there, and I'm thankful. I know that's kind of a weird thing to be thankful for, but when Jackson has needed to go in for xrays or whatever, he's not scared. He loves going there. Kira is understandably not thrilled to go for blood draws, but she isn't scared of the hospital. And y'all, she was SUCH a big girl during her testing last month. Sat up straight and tall during the EKG, kept it together, even though she wasn't entirely sure what was coming next. Tough chick.

We always eat lunch in the cafeteria when we're there. Last time, I looked down and realized that no one was in a stroller. They were both sticking close to me while we waited for our food. They stayed in line with me. We walked to our table together. They entertained one another while I went to get napkins and straws and stuff. I had to take a sec and recognize that here we were in the next stage, together. Two big kids and their mom enjoying lunch. They're still my babies, though.

Hug your babies, y'all!

Love, W.

P.S. While I was looking for a pic to put in this post, I remembered something else I wanted to say. When Kira started saying "Mama", I wasn't sure if she was really saying it, or just practicing her "muh" sound. After the failed attempt to plug the PDA, when they brought her too me right after she came out from under anesthesia, she snuggled into my arms, looked me straight in the eye, and breathed "Mama" with a sigh of relief. It was perfect.

The Twins

Of her many, many baby dolls, Kira has two in particular that she loves. They've had hard lives. They never have clothes on. One is covered in pen marks. But, they are loved, loved, loved.

I often find them nestled into giant pull-ups on my bed. Or tucked gently into Kira's bed.

The other day, I went to use the computer and found them again. It looked like they were all tuckered out after watching something on Netflix.

I love finding evidence of pretend play that was going on while I was busy somewhere else. I love that she thought to give them a pillow and that she went to the linen closet to get them each a washcloth blanket. I love that she's such a good mama. My biggest wish is that, if she wants it to be, mothering will somehow be in her future. Sky's the limit.

aaaaaaaaaannnnddd we're back! (31 for 21)

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31 for 21, y'all. 31 posts in 31 days in honor of my girl's 21st chromosome. And a great chance for a lazy blogger to get her mojo working again.

So, let's see. Where were we?

Kids are in school. Kira for a 1/2 day and Jackson in all day Kindergarten. Jackson had a bit of a rough start, but now absolutely adores school. Adores it in a way that is sure to get his ass kicked at some point in the future. Bless him.

Kira returned to school like the princess she is. Beauty queen waving like she was on the back of a convertible all the way down the hall.

I'm in full on PTA mode. PTA doesn't play, y'all. Serious business.

ummm....what else? Oh, we have a cat. Her name is Lulu. She rocks. She'll get her own post or two this month.

I'll leave you with first day of school pics. And a promise to do my best to blog every day. And maybe even talk about Down syndrome.

Missed y'all.

Love, W.

(Jackson showing "5" and helping Kira show "3", so I'll remember when this was!)

jacksonism

I don't want to forget this one.

Jackson decided that he wanted to take his lunch to school on Thursday. He, of course, decided this on Wednesday, so I wasn't sure what I'd have to put in his lunch.

Me: Ok, it's all packed! You have a peanut butter and jelly sandwich, cantaloupe, watermelon, carrots and celery. So, you're good to go!

Jackson: Actually Mom, I'd like to be GREAT to go. Could you put some peaches in there, too?

Happy Friday, y'all!

Having a busy (and fun!) summer - back to regular blogging soon. Promise. I had to share this song, though. LOVE it.