Thursday, September 27, 2012

An Heirloom for Lily

Some background: when Joe and I first started buying toys for Lily, we decided that we wanted to invest in some heirloom-quality play furniture for her. We didn't want a ton of plastic stuff that we found aesthetically displeasing, and we also wanted quality items that we could pass down. Since her first Christmas, starting with a wooden kitchen, we have purchased, or asked others to purchase, high-quality wooden play furniture for her.

For her birthday this year, her Pap-pap got her a much-desired doll bed. And it was wonderful. There was only one problem-it needed bedding!

I had long ago sewed and embroidered a doll pillow for Lily, but I needed a blanket for the doll bed, and since at the time I was sewing and knitting several items in preparation for my friend Karen's baby shower, I decided to buy one.

That's where Emily and Brenda of Masterpiece Quilts came in. Soon after Daniel was born, I was searching Etsy for something unrelated one day when I happened to see a picture of a girl with Down syndrome (Emily) in one of the listings. Intrigued, I clicked on the link and it took me to the Masterpiece Quilts Etsy store.

I was amazed to read that Emily, Brenda's daughter, picks all of the fabrics for the quilts herself, designs the quilt, and helps her mother to piece together the fabric and sew the quilt. This was so inspiring to me, and reading about Emily was such a balm to my new mama's heart as we had recently learned that baby Daniel had Down syndrome as well. I really wanted to purchase a quilt from Emily. Not only did I need one, not only did I think the quilts were absolutely beautiful, I also got to support someone like my son by purchasing one. That meant so much to me.

One of the main things I worry about when it comes to baby Daniel is how his life will be when he becomes an adult. Will he be happy? Will he be able to do things that he loves and feel like he contributes to society and can be productive? Will our society support him and encourage him? What happens if they don't?

If this gorgeous doll quilt is any indication, as long as he has loved ones supporting him, just like Emily does, we have nothing to worry about. Thank you Brenda and Emily for creating this gift that I am sure Lily will cherish forever, and for showing me that with love, anything is possible. :-)

For you see your calling, brethren, that not many wise according to the flesh, not many mighty, not many noble, are called. 
 But God has chosen the foolish things of the world to put to shame the wise, and God has chosen the weak things of the world to put to shame the things which are mighty; 
and the base things of the world and the things which are despised God has chosen, and the things which are not, to bring to nothing the things that are,
that no flesh should glory in His presence. 
But of Him you are in Christ Jesus, who became for us wisdom from God—and righteousness and sanctification and redemption— 
that, as it is written, “He who glories, let him glory in the Lord.”
1 Corinthians 1:26-31

Monday, September 24, 2012

A Good Day

As some of you might know, last week was a hard week for me. From reading a few depressing news items about Down syndrome, to preparing for a friend's baby shower (which I was glad to do, but still stressful), to spending most of that baby shower missing my family who happened to be attending a beautiful wedding that  day up in Pennsylvania that I really, really wanted to go to. Unfortunately due to medical bills and the inadvisability of flying with an infant with a sensitive immune system, I didn't get to go. I have seen pictures, though. Everyone was beautiful!

And everyone at the baby shower was beautiful too. Probably the best one I've been to, but I'm biased as I was one of the hostesses. :-)

My gift for baby Parker...who I am now allowed to share is a BOY!!!
Today was much better. I felt more "me" than I have in a long time. It wasn't perfect. I didn't get dinner made (we improvised). I didn't get to clean the bathtubs. But it was good.

Lily got homeschooled while Daniel slept in this morning. We all took a long walk together after we were all dressed and fed, and I got an awesome workout pushing almost 70 lbs (Lily+Daniel+carseat+stroller) for over half an hour! I planted some stuff, and Lily got to play in the backyard for at least an hour.

Daniel loves floating in the bath. He floated for a few minutes at the beginning of Lily's bath this evening, and afterwards he received a full body massage.

Doing therapy on the couch for head/neck control, while Daniel is mesmerized by the ceiling fan!

Lily and I made pumpkin scones this evening.

While they baked I painted her toenails "red like Grandma's" at her request, and she demanded books as she waited for them to dry.

Father/son naptime. <3

Sometimes you just need a beautifully ordinary day to get you back on track. Thank you, God, for ordinary days.

I have a few blog entries planned this week that I am really excited to share. Here's an overview:

  • A few products/services offered by people with Down syndrome who inspire me so much.
  • Daniel's birth story, which I hope to share on Friday.
  • Daniel's diagnosis story, which I hope to share on Saturday.
  • Sharing the experience of our first Buddy Walk!

"First of all, then, I ask that supplications, prayers, petitions, and thanksgivings be offered for everyone,
for kings and for all in authority, that we may lead a quiet and tranquil life in all devotion and dignity."
1 Timothy 2:1-2

Sunday, September 16, 2012

She's Crafty

So I thought I'd change up this blog post a little bit from the norm. And maybe show off a little. :-)

As some of you may know I like to sew and knit. And with so many babies being born recently I've done a lot of sewing and knitting. So here are some of the items I've made in the past months for Daniel as well as some beloved friends' babies:

Going-home outfit for Daniel. I sewed the pants and embroidered the shirt

Wool diaper soaker I knit for Daniel. He stopped fitting it just about the time I found out cloth diapers weren't the best for him at the present time. I also knit him a grey one but I don't have a picture of it yet!

Pants for baby Ben.

Knit vest for baby Ben. I found the buttons at Walmart of all places after searching all of my hoity-toity knitting shops!
Pants for Daniel from my favorite fabric in the world.

Semi-matching pants for baby Parker :-) As you can tell I couldn't bear to part with more than just a little of the fabric!

 And this is just the stuff I have pictures of! I think I'd like to share my crafts with you all every few weeks because it is such a large part of my life and what makes me happy. :-) I'm a much better knitter than I am a sewer (as some of you experienced sewers may have noticed...) but I enjoy both very much.

She seeks out wool and flax
and weaves with skillful hands.
- Proverbs 31:13

Thursday, September 13, 2012

3 Months

Daniel was three months old on Monday. The old adage about the "fourth trimester" seems to be accurate in Daniel's case...he is really coming out of his shell this week! I took him to the lactation center to weigh him today: 13lbs 12 oz! I think he will have no trouble doubling his birth weight by 4 months.

He is also fitting into our family rhythm pretty well. Everything is getting easier. Honestly, the first week or so after we brought him home seemed a bit surreal for me. Suddenly I was a parent of a child with special needs. It seemed like a Lifetime movie or something that happens to someone else. The weirdest part was that he really didn't seem all that different than a normal baby!

But now...our life is just our life. I can honestly say we are all happier with Daniel here with us than we were before he was born. Daniel has taught us so much about unconditional love and opened our eyes to truths we had never understood before.

He is staring at his black and white picture board. :-)

So far the only delay in Daniel's development I've noticed so far is lack of head control compared to how Lily was at this age. His strength when he's on his belly is great, but when he's upright (like when being held) his head is still pretty wobbly. We're working on it, but honestly I'm fine with him where he is. In my eyes he doesn't get his worth as a human being based on his capabilities. I know he'll hold his head up well eventually.

He has an appointment with a developmental pediatrician (I think I mentioned this in a previous update about him) at the end of the month. They will evaluate him and give us a plan of action to support his development in the coming months. We are also working with our insurance to see if he can get approved for the RSV vaccine (Synagis). Since he has a heart defect and Ds, he's at higher risk for serious complications if he gets RSV (like pneumonia). We would appreciate any prayers that this gets approved!

My favorite thing about him at this age is how happy he is, as you can probably tell from these pictures. He's the happiest baby I've ever been around, seriously! He loves interacting with people, smiling, imitating sounds and mouth shapes that other people make (so far he has imitated a kissy mouth pretty well), and "talking" (baby talk)! I have a "conversation" with him almost every night that lasts almost half an hour! He especially seems to love talking to his Grandma (Elicia's mom). Something about her just brings out some super chattiness in him! It is so cute. We all love him so much.

For you were once darkness, but now you are light in the Lord. Live as children of light,
for light produces every kind of goodness and righteousness and truth.
Try to learn what is pleasing to the Lord.
Take no part in the fruitless works of darkness; rather expose them,
for it is shameful even to mention the things done by them in secret;
but everything exposed by the light becomes visible, 
for everything that becomes visible is light. Therefore, it says:
“Awake, O sleeper,
and arise from the dead,
and Christ will give you light."
-Ephesians 5:8-14

Monday, September 3, 2012

Little Girl, I love you.

There is something special about that first dance class. I was a little older than Lily when I took my very first, and I remember it pretty well. When you're a girl child, ballet seems to be the height of femininity and grace--and of course you feel like the most beautiful princess in that leotard and your ballerina slippers. It was an emotional experience watching Lillian Frances.

She had a "dress code"--pink tights, leotard, slippers, and hair up--but since she had such a selection thanks to her Aunt Jaci and Uncle Daniel, I let her pick out just which pink leotard she wanted to wear to that very first class. The one she picked was classic Lily: one with an attached flowing skirt, but embellished at the top with shiny metal studs. My girly-girl with some spunk.

She was so excited that sitting still for pictures did not happen. This was the best I got!
One thing about living so near family that I absolutely love is that when anyone has any sort of important life event, everyone shows up to support them. Other than myself, Lily had five other relatives come to observe her first ballet class and be there for that milestone. It makes me emotional every time. I am so grateful that our children are constantly reminded how very loved they are by so many people.

One awesome benefit for me was that I could just observe her class without having to worry about taking pictures! Such a gift, as I was wearing Daniel in the baby carrier and having to also take pictures would have been extremely stressful. My father-in-law Jack took all of the rest of the photos on this entry, including the one above. :-)

Of course I am slightly biased, as I feel that my daughter is the best, most talented little girl in the world, but I think she did a great job at her first class. No, she didn't do everything perfectly. But she tried hard, and I think she impressed the teacher a few times with what she could do. I have a feeling it won't take long for her to get used to this type of class and excel. But even if she doesn't, that's okay.

The important thing is, Lily got to feel like a ballerina princess. What girl could ask for anything more?