Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Julie

Dear Julie,

Back when Ellie was a baby, we did not get off to a very good start with our in-home daycare experience.  Very thankfully, only months into her life, fate and a bunch of awesome family/friend connections brought us to you.

We know that  Ellie was a (generally pleasant) handful and you loved her for it.  I so appreciated having a friendship with you – my commute home was always a little longer than expected because we would chatter about the day while Ellie s l o w l y put her shoes on her little feet.

When Tessa was diagnosed, we were afraid of so many things.  One of our fears was that you might not be able to care for her.  We didn’t know how she would be, what her needs would be, or how you felt about the extra responsibilities of a child with special needs.  We ripped the bandaid off quickly, telling you almost right away about Down syndrome.

Of everyone we told, you had the best reaction of all.

Without even a second’s hesitation, you told us that you would love her just like you love all of the children you care for.  That was that.  And we couldn’t be more grateful for how you lived that statement for the rest of our time living in that area.

Our girls miss you.  They love going to Mimi’s house for daycare, but Ellie still talks all about her friends at Miss Julie’s house and how she is going to marry Aiden.  She even still takes care of her Michael’s stuffed animal.  She adored him!!!  I love seeing your family grow on Facebook.  You gave our girls such a wonderful start while John and I worked.  Thanks so much for being their daycare mommy.  We are so blessed to have been able to send our girls to you – thank you for just loving on Tessa like you do all the others.

Lots of love,

Maggie

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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In which we begin again

Another school year begins tomorrow. That blissful stretch of open road that lay before me back in May has now reached a dead end. Or maybe one of those intersections where you have to turn left or right into a hectic routine. You can’t continue on the open road of summer forever… not in this house.

In two separate and totally unrelated incidences, my mom and father-and-law turned to me as I was playing with Tessa and said the exact same thing: “You’re really going to miss her this year, aren’t you?” This statement has given me pause because it isn’t something that anyone has said to me before in regards to either of my children. Not when I returned after maternity leave, not at the end of any other summer break… not ever. I adore all of my family members, even my husband ;), so I’m trying to put my finger on what exactly it is about this child that makes the separation more intense.

Basically, it’s because I’m a control freak. I mean, there is that sweet smile that sends us all over the moon (especially me), but let’s be honest here. In seven and a half months, I have missed exactly one doctor appointment and 1.5 therapy sessions out of a zillion. This school year, Tessa will have both OT and Speech at daycare without me. I may have to miss a doctor appointment here and there. And I’m not done training John on how to best keep track of information for me! It’s a forced transition into letting go just a little bit. That’s good for me and my child.

To be frank, my brain needs a break from Google. I spend every spare moment networking, researching, reading about Down syndrome. It makes me a little bit insane. It’s unneccesary. It doesn’t do any of us any good. I am determined to provide Tessa with a quality life with many choices. I don’t want to “cure” her or to change her, but instead hope to create an environment in which she can thrive. I can do that best by giving my brain a break and the best way I can do that is to begin the school year again. So off we go!

And now, cuteness:

Tessa helped us get the room clean in the best way she knows how…

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I just love this picture that my sister took…

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Ellie and Tessa, hanging out as sisters do…

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And finally, Tessa’s first toenail polish…

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Normalcy?? I hope not.

Well, we thoroughly sucked at this week.

This was the first week since before Tessa that both John and I have been working.  I’m sitting at my kitchen table, surveying the disaster that has been created by the tornado of our life.  Strewn across the surface of our table are the remnants of not one, not two, but three McDonalds Happy Meals… there are empty Chinese cartons, a Chili’s To Go bag, a couple of squeaky styrofoam boxes from our favorite sushi restaurant…  and I haven’t touched my weight watchers app in seven days (thanks for sending me the lovely reminders, Weight Watchers App.  No, I haven’t tracked my weight lately, I know.  I don’t even want to know where that number stands after this week).

I often measure the stress level of our week by the number of meals we eat as a family, at our table.  We shoot for five.  This week, we were at one.  I think.  Then again, that may have been last week.   

After a weekend full of way-past-your-bedtime events, Ellie was in a funk.  There were lots of tears and sulking by the door to our garage, waiting for Daddy to come home to save her from Lord knows what.  Me, I guess.  One day, she spent 45 minutes carrying on about how she had no toys anywhere and how she wasn’t going to play ever again.  One night, there was vomit.  That was awesome.

If you are an unmarried reader… my unsolicited advice to you is that you find the partner who will laugh through the 1 AM, 2 AM, 3 AM vomiting toddler/hungry infant extravaganza and will thank you for being awake with him (as if there were really a choice).

There were meetings that ran long, a  list of school events to supervise, two therapy sessions, several hours of crying toddler to survive, a house to clean…

I actually broke down and called for an estimate on how much it would cost to have my house cleaned by professionals.  Sooooo not in the budget.  

In any case, we have learned the importance this week of my monthly meal plan (which was not in place this week… hence, the struggle… or so I tell myself) and our shared iPhone calendar.  While I don’t think that we will ever not be busy, we will get better at the adjustment to two in the working world, two in daycare.

Right?

Before I forget to record them, there were some fabulous bright spots to our week.  And I mean fabulous.

1. Tessa took almost all of her feedings today in an upright position.  HOLY Guacamole!!!!  Yes, yes, yes, THIS is what we have been praying for most.  

2. Ellie took a bath with zero tears.  I haven’t written much about this (it’s a “coming soon” post), but suffice it to say that bathtime has been a terrible experience for quite some time and we are finally getting our little fish back.

3. Tessa figured out how to roll from back to belly today.  She’s been on her side and aaaaaaalmost over for a little bit, but she finally got her shoulder to cooperate.  I’m SO proud of her… and SO terrified to walk into her room and see her sleeping on her belly.  I’m not ready for that!

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A lack of productivity

I am two weeks-ish away from the end of my maternity leave.

For the record, I don’t think time has flown by.

However, I am also in denial about actually working again. It has been so long since I was in front of my classes. Especially considering that no one (and I mean no one) could have imagined the birth of my girl would be what, and when, it was.

I’m looking around my home tonight at my half-finished projects, wondering what exactly I accomplished in the last three months.

Back in September, the big conversation in our house was ‘should I take 6 weeks or 12?’ I really like to work. I was afraid that I would be bored at home. I wanted six weeks, we compromised on nine. And as my nine-week mark passed this week, I have to swallow my pride and say that John was right on this one and I’m so thankful that I was able to be home with Tessa for 14 weeks total. (I hate to be wrong. I cried tears of joy when they told me Ellie was a girl simply because I was right and everyone else was wrong.)

When we decided on nine weeks, I made myself a list. I had big plans to get some serious work done around the house. I had books to read. There was even a Pinterest board created called “my lonely leave,” filled with crafts and projects to keep me busy.

And after nine weeks, I still have Christmas presents to be put away.

But I have accomplished so much… learned so much… grown so much. I’m comfortable going back now, though we haven’t come as far with Tessa’s feeding as I hoped. Still, it is enough.

My house might not ever be clean again, but it is enough.

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