World Down Syndrome Day

Today is World Down Syndrome Day. It is celebrated on 3/21 because people with Down Syndrome have 3 copies (instead of 2) of the 21st chromosome. It is a day to promote awareness and celebrate the lives of all our friends with Down Syndrome.

A year ago, I was still having a hard time accepting it all and didn't even know this day existed. But today...today it is a happy day! I celebrate our sweet baby girl--who she is and all that she has brought to our family.

We were given a poem when Jayne was born that I'm sure most parents of children with Down Syndrome are familiar with. It has taken on new meaning lately so I thought I would share it...

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never go away... because the loss of that dream is a very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

Since I can remember, tulips have always been my favorite. To me they are the perfect flower--simple and beautiful.

It wasn't until Don brought these flowers home last week that I remembered this poem and that tulips are from Holland. Maybe I was always supposed to go to Holland... Sometimes life takes you places that you never expected but it ends up being the best place for you. It's definitely not what I planned for, but now that we're here, we're taking it all in.

We have learned so much since sweet baby Jayne came to our family. She has brought so much joy to our home and makes us smile everyday. I have been able to connect, through blogs, with some amazing families that we never would have been able to, were it not for Jayne. They have inspired me and help me to appreciate all the beauty of this new world we are a part of. There really are some very special, very lovely things about Holland...

We love you baby Jayne!

15 months old and 1st Teeth!

I took Jayne to her 15-month old check up this week. We were so happy to find out that she has grown 3 pounds in 3 months. We were worried for a while because at her 1-year-old appointment she weighed less than when she was 6 months old. After running some tests, we found out she was severely iron deficient and got her started on an iron supplement right away. It has helped her so much! Now she has gained weight, is eating more and is so much more active!

The other suprise--Jayne has two top molars! I didn't think she had any teeth yet because I kept waiting to see her front top or bottom teeth come in. I've never heard of molars coming in first. But we've learned to throw out all those "rules" of how and when things will come with Jayne. She does things her own way!

They are pretty hard to see, but they are there!

Leprechaun Fun

Elle and Easton were so excited for St. Patrick's Day! It is one of those holidays that we didn't really do much for before, but with kids, every holiday is a big deal and that's what makes it fun!

Green pancakes and green eggs for breakfast!

One cute little leprechaun!

Jayne loves her sister! Elle can always make her smile and laugh!

Easton colored this leprechaun in preschool. He was so excited all day! I came upstairs and saw him getting into something and asked what he was doing. He said, "I'm just making mischief mom. I'm getting some cookies!" I guess he thought that as long as he said he was getting into "mischief," then he couldn't get in trouble. He is so funny!

Easton worked all day on setting a trap for "Lucy the Leprechaun." He was determined to catch her. It was so cute!

The trap is set, with a 4-leaf clover coin to lure her in. He was so proud of himself. There was string all over the family room.

Lucy finally came when Elle got home from school. She made mischief downstairs and left a big mess for the kids and the first clue for a treasure hunt!

Finding clues together

The last clue led them to the playhouse and their treasure! They were so excited!

I got ready for St. Patrick's Day with a 5k run with Tanna and Jill in the Leprechaun Lope by Memory Grove. It was a lot of fun to run and see all the people dressed up in their leprechaun attire. We were "lucky" too because it snowed an hour after the run!

The BEST days are totally unproductive!

Life seems to get more and more busy! I have a list in my head everyday of all the things I think I need to get done. By the end of the day, I usually only have about half of it done. The funny thing is that when I forget about it all and just play with my kids, I realize that I don't really "need" to get all those things done. The best days can be totally unproductive! Laundry, dishes and picking up can wait, because this time with my kids won't!

One of our perfectly unproductive days this week...

Easton said, "Mom I have the best idea!" Even though there was still snow on the ground, there was sun, so he wanted to put on his swimsuit and have a picnic outside. It was sunny but still way too cold for a swimsuit (I stayed in my fleece), but Easton loved it and wasn't the least bit cold! We sat on his towel that he laid out and had our lunch and talked. I loved every second of it! It really was the best idea! Thanks little E!

After lunch, he wanted to "get the fence" with snowballs. It was the funniest thing seeing him in his swimsuit throwing snowballs.

When Jayne woke up from her nap, we played and played...

And did lots of puzzles!

When Elle got home, she joined in the fun. Easton wants to do everything Elle does...everything. He thought he was so funny dancing around in a tutu.

Don says this one is going on his wedding video.

Elle's First Piano Recital

Elle had her first piano recital last weekend and did so great! She just started taking lessons in January but has caught on really quick and is already learning to read the notes without finger numbers. She played B-I-N-G-O for her recital piece and her teacher accompanied her. Elle was the first one to play and she wasn't even nervous. I was so shy at her age. But, she loves to perform and definitely doesn't lack confidence! We are so proud of her!

Playing with her teacher for her recital at the Piano Gallery

Elle and Grandma Diane playing B-I-N-G-O at her house

Childhood Magic

The other night, Don and I put the kids to bed and Elle asked if I would lay by her for a minute. We laid there in the dark and talked about her day-- what her favorite thing she did was, something nice she did that day for someone else and something that made her laugh. Elle said that one thing that made her laugh was when she pulled her own tooth out. It was so loose and had been dangling in her mouth for a few days but she insisted that she wanted to be the one to pull it out and she did!

Then, of course we got talking about the tooth fairy. This is a major topic of discussion at our house right now, with Elle losing teeth left and right. She asked if I had ever seen the tooth fairy and I said I hadn't. Then she went on to say that one of her friends doesn't believe in anything but the tooth fairy. I said "What? That's silly! What about Santa Claus?" Then Elle said, "Well, she does believe in Santa Claus too. But that's it! She doesn't believe in 'Lucy the Leprechaun' or the Easter Bunny. She thinks the Easter Bunny is just someone dressed up in a bunny suit!" At this point, I started to panic a little bit, because I can't bear the thought of Elle not "believing" yet. I know it is bound to happen someday soon, but I am not looking forward to when she finds out the "truth" and the magic is gone. Then Elle said the cutest thing! She said, "And guess what else mom? She doesn't even believe that we are princesses! I told her that we are all princesses and princes because we are all children of God. I told her to just ask her mom and dad because they will tell her." She said it so "matter-of-factly" that I knew she believed it. I couldn't help but smile and be grateful that Elle knows who she is and who we all are. I just hope Elle can always hold on to that very important truth!

So later that night, I was telling Don what Elle said. We were laying in bed talking and saying, how we always do, that our kids are getting too big and that we just want them to stay little forever. I don't want them to grow up and move away. I already miss them when I think about it...

Then we sort of laughed and said that there is the possibility that Jayne won't move away. We might get to keep her with us. We hope and pray everyday that Jayne will be really high functioning and will be able to do everything that she wants to do, just like our other children. But, if for some reason she is not able to live on her own, at least that means that we get to spend more time with her. Then Don and I both smiled to think that Jayne may not have to lose that "magic" that children have and maybe that isn't a bad thing. She might still believe in Santa Claus when she is 15 and, in some ways, that is pretty lucky! We could all use a little more magic in our lives...

Some of my favorite moments this week...

Elle reading to Jayne and Easton

Jayne's new favorite thing is playing Peek-a-boo. If I am holding her facing me, she takes her blanket, covers my face, and then slowly uncovers it and gets so excited when I say "Peek-a-boo!" It is the cutest thing!

Finally, a snow storm to make a snow man

Sisters

Silly little kids wearing silly hats

The "Firstest" and "Bestest"

"You will amaze us. We will applaud. You don't have to be first...You don't have to be best...You are our firstest and bestest! There is something so very precious about you--maybe it is angel dust sprinkled by your grandma and grandpa great when you left their arms in heaven. Whatever you do, we will cheer! Whoever you become, we will adore! I wonder if you were sent to stretch us...to see things we didn't know to look for before. Angels among us--teach us to smile, to slow down, to savor, to adjust our sad definition of perfection to something we can reach...and hug."

I LOVE this so I had to post it. It is actually a comment from Nella's grandpa written on her blog after she rolled over for the first time, but I love what he wrote. I have already been "stretched" and see things a little bit different than I used to, thanks to Jayne and this new little world we are a part of.

I went to a Down Syndrome play group a week and a half ago and I am SO glad that I went! It was so fun to see all the kids and visit with their moms. I was really nervous to go because I haven't really done anything with other families that have children with Down Syndrome. It was a big step for me. I didn't know if I was ready to really become a part of the "club." The first 9 months of Jayne's life, she was really on track with her development so I think Don and I were both in denial a little bit. Deep down, we hoped that the chromosome test was wrong and that Jayne would do everything our other kids did. Over the past few months though, her development slowed down quite a bit and it was really hard. Reality set in. I still have really hard days, where I worry about the future. But now, I know that Jayne still will do everything that Elle and Easton do, it just might be at a slower pace. Like Nella's poppa says, she is teaching us to slow down and savor each moment. I have realized that she doesn't have to be the first or the best. She will be Jayne and we will cheer her on in whatever she does. We will always love and adore her! I can't wait to see who she will become!

For the record, this little "club" couldn't be any cuter!!! They are all SO adorable!

Jay's Birthday

Last Saturday was Jay's birthday! He would have been 42 years old. We went and visited his grave and took some balloons. Cute Elle and Easton colored pictures for Uncle Jay and we tied them to the flower pot on his grave. It was bittersweet. Happy Birthday Jay! We miss you and can't wait to be with you again one day!






Sweet little Ashley is buried close by so when Elle found out we were going to Jay's grave, she wanted to visit Ashley's too. Ashley passed away just a few months before Jay at the young age of 5. Elle still talks about her and remembers things they used to do together. She probably always will. Ashley and Elle became friends, all on their own, at the gym, before they were 2. Ashley was Elle's first real friend--her first best friend. She made a whole pile of pictures and crafts for her and tied them to her grave. We miss you too Ashley!

Sledding

We took the kids sledding by Donut Falls. It was SO much fun!

Elle is pretty cautious. She loves to go sledding but starts about 2/3 of the way down the hill so there isn't very far to go. She won't go with Don or me because she is worried we will go to fast. She has fun though!

Easton, on the other hand, is a little daredevil! He wants to go really fast and loves to go on the jumps! A few times, he fell off the sled and didn't mind. He said he likes getting "white washed!" Funny little guy!

Sweet little Jayne just loves to be held and watch the kids! She waves constantly at us and keeps us all smiling!

Blog Therapy

Last week, while Don was gone late one night, I spent the evening poring over the blogs of different families that have children with Down Syndrome. The tears kept coming as I read the stories and saw pictures of these amazing families. I went through a lot of different emotions--happiness, sadness, empathy, gratitude, blessed, excitement, etc. It sounds funny, but it really was very therapeutic.

I couldn't help but smile as I read of the neat experiences and the blessing of having a child with Down Syndrome. I was reminded again of the sweetness Jayne brings to our family and all that we have learned from her. I love seeing her grow and learn each day and get so excited when she learns something new. Her little personality is coming out more and we love it! She waves at everyone, is starting to blow kisses and is even doing some signs.

One blog, in particular, really captured my attention and I couldn't stop reading. It tells about this sweet little baby's birth and one mom's journey as she comes to accept that her daughter has Down Syndrome. Because her baby is only a month and a half old, the emotions and feelings are still pretty new. In a way, there really is a mourning for that baby you thought you were going to have and fear for what the future will bring. It is hard to have this sweet little baby placed in your arms and then to hear only minutes later of all the problems and life-long challenges they could possibly have because of Down Syndrome. It is unfortunate because, as a friend wrote on her blog, your baby gets a label before you even get a chance to really bond with them. It took me right back to just over a year ago when Jayne was born and my heart ached for this little family. It made me appreciate just how far we've come, how much we've grown and all that we have learned in one short year. I wish I knew then the incredible joy that was just around the corner.

I had no idea that reading other people's blogs could be so healing. It is nice to know that we are not alone and that there are other families who have the same feelings and worries that we have. Don and I haven't had a lot of interaction with anyone that has Down Syndrome so we didn't know what to expect when we had Jayne. Reading other people's blogs has helped me so much and has given me hope. They help me to know that Jayne will be ok and that there is so much to look forward to. Sure, there will be challenges, but there are for all children. Jayne is just Jayne and she is ours! We love her so much and are so grateful for all that she has brought to our family already!

I absolutely ADORE our sweet little baby Jayne and can't get enough of this little face!

(If you ever want to read an really neat blog, check out the blog link at the bottom called, Enjoying the Small Things. She will inspire you, make you cry, laugh and smile all at the same time, plus it has the cutest photos.)

Three-year-olds are so funny!

I love having a three-year old! Easton is SO expressive, SO full of energy, and SO funny! He makes us laugh every day! He loves to entertain us with his "funny" jokes about eyeballs and his cute little funny faces. I really, really don't want him to grow up!

A few funny Easton moments...

The other night we went to Don's parents' house for dinner. Easton was wearing his much loved "Spiderman" shirt with his Old Navy fleece on top. The second we got in the door, he said, "Grandma, guess who I am?" She said, "Um, Easton." He said, "No, I'm not Easton." "Are you Old Navy?" because it was written on his fleece. He gave her the funniest look and said, "I'm not an old lady! I'm a superhero! Look on my shirt!" Then she said, "Oh, you are Spiderman." At dinner, I heard him whisper to his cousin Nate about his plan to web uncle Ken.

We were at the gym and Easton went up to one of my friends who has a little boy his age and said, "You better watch out! I'm a naughty pirate!" She said, "You are?" "Yep, and Im gonna make you walk the plank!" Luckily, she just laughed. I don't know where he gets this stuff.

I've decided either Easton thinks that he is really clever or that I am really clueless. The other day, I was getting in the shower so I let him play his Diego computer game to keep him busy so he didn't run out the front door or get into trouble. I came out just in time to see him putting something back into the freezer. I asked him what he was doing and of course, he said nothing. Then I said, "Did you get something to eat?" "No, I didn't eat anything." At this point, he must think I am pretty clueless because there is a chair pulled over to the cupboard and it is open and there is a bowl and spoon on the counter with something melted and white in it. I said, "Easton, you aren't in trouble. I just want to know what you got out of the freezer." "Mom, I promise that I didn't eat anything." Under my breath, I couldn't help but laugh but I told him to sit in time out because I just wanted him to tell me the truth. He sat there for a few minutes and then he must have been so tuckered out from opening the ice cream, scraping out a bowl full with a small spoon and eating it, that he fell asleep. I didn't even know he liked plain vanilla ice cream. Our kids usually stick to popsicles. He must have figured it was in the same place, so it must be good!

The evidence

Asleep in time out