My Christmas Gift

I wanted for Justin to be able to sit up on his own for my Christmas present. It wasn't really all that impossible, but I still really hoped it could happen. He was doing SO well, but I couldn't get a picture for fear he would fall when I was looking through the camera. And then I got this picture:




He's kind of leaning on the toy, but not really. He is doing FANTASTIC! Don't ask him to watch you move an object over his head because then he falls for sure, but if he just sits, he's good. And it's not just balance until he falls. When I am holding him to practice, I can feel his muscles "firing" (a favorite therapist word!) to correct himself when he begins to fall. It's very cool! I am not sure what the exact time limits would be to claim sitting, but he is darn close! And he almost has the second tooth in front too! Sitting AND two front teeth! Who can't claim a Christmas miracle?

And here's the boys Christmas Eve, on the hearth. There are some pictures of them looking at the camera, but I thought this one was better. It kind of looks like they are plotting to catch Santa Claus! (Did I mention that Justin LOVES his thumb??)

A Different Kind of Christmas

Since the boys are sick and we don't want to infect anyone else, we had a low-key Christmas at home. It was the first time in a long time that I haven't been with at least some other family, even if it was just nearby family. I wasn't sure what to expect, but it was really nice. Travis went CRAZY when we finally let him open presents. It is fortunate that there weren't many other presents under the tree because Travis didn't take much time to read the names on the presents. And Justin didn't seem to mind the help to have his presents opened. It took us a while to open everything because we had to take time out to play with each thing as it was opened. It's probably a good thing that there weren't more people here. They might have lost interest after a while!

Of course, here are the expected pictures from the holiday:

This is one of Travis's favorite gifts. It is meant to be an outside toy because he always wants to take his trucks outside. This one can take the abuse. But, it turns out that it can also be used to open other presents...

Justin got into the fun a little, although he couldn't really rip the paper. He got his first car...

And it was tasty!

In fact, most of his presents were tasty...

Travis got a BUNCH of tools. He loves them. Daddy taught him how to use the battery operated drill to drill his wooden screws into the workbench. Great. And now I hear things like, "Mommy, I am cutting the table!" Great. And he has learned what a reciprocating saw and jigsaw look like. Great.

(It's ROOT BEER thank you very much!!)

Travis got a tractor that I thought was for outdoor use, until I read the box. I am breaking the rules. Tavis is enjoying it, but his feet don't quite touch the pedals all the way around. The story of my life.

And of course, a tractor with a trailer and a baby means...

Haul the baby! (With adult supervision of course!)

It seems we had quite the vehicle Christmas. Justin also received a rocking horse. The little support circle is the perfect size and shape to keep him on. He seems to like it.

It tastes good anyway...

Randy and Travis took a long nap together in the afternoon. And Justin and I delivered the food we had cooked to our family who was gathering without us. I can contain Justin enough to prevent the spread of germs. Travis, not so much. The day went by quickly, and now the 2 youngest are in bed. Being the only healthy one, a lot of chores have fallen on me and I think I am ready to fall myself. It will be an early night tonight, but a happy and fulfilled one.

Justin and I took a walk when the other 2 were sleeping and there were several neighbors out walking as their children and grandchildren played with their new scooters and bicycles. It is such a joy to see everyone together. All the cars were parked in front of other homes, instead of at grocery stores and office buildings. I like that. It doesn't happen often, but it's nice that it happens on Christmas. Even if it's not always for the right reasons. God can work anywhere, anytime. I like that.

Christmas Blessings

I have been thinking this week about the babies who will be born in the US this year with DS. There will be about 5,000 of them. That breaks down to about 14 per day. Given that very few of those diagnosed prenatally continue with the pregnancy, there are about 12-13 whose parents have no clue that their child has DS until he/she is born. Each day. Including tomorrow, Christmas day. There will be about 13 babies born on the day that we celebrate as Jesus' birthday whose parents will have their lives turned upside down. The day that they planned and anticipated for months. I am sure they will be excited as they head to the hospital, or maybe are already there. They know their child will have a special birthday, but they don't know how special their child will truly be. I have been praying for these 13 families. I pray that they find out in a good way. That they are strong and that this diagnosis draws them closer as a couple and as a family. That they would not think they did something wrong or blame themselves. That they would not doubt God's love or his plan. That their family would embrace them and their new baby and celebrate. That the family wouldn't say, "It's okay, don't worry." That God's love would shine in each of those labor and delivery rooms. That they experience the joy that everyone should feel welcoming a new baby into their families. That they feel the true blessing of Christmas.

It Doesn't Even Matter

I prayed before I looked in each store for something to wear for the Christmas/Not-Christmas family picture. It seems silly I guess, but God says to pray for everything, so I do (I try anyway...). And nothing. No shirts, and I was getting frustrated! Then, last night:

We were up cleaning, etc. late last night and 30 mins. after we went to bed Justin woke up coughing. That horrible, croup-like cough. Fortunately (?) Travis had woken up with a fever from nap yesterday, so I had already made doctor's apts. for them BOTH this morning. So it turns out after no sleep last night, Justin and Travis have an RSV-type virus. Of course it's contagious, so that rules out Christmas and the picture too. So, God really did take care of me when he urged every other person to buy all the red shirts sized 9 mo. and 3T. Now I don't have to return them.

Failure

I have given up on sleep. Mine, that is. Naps aren't any better after my sleep intervention, but Justin has been good at therapy so I think I will just stick it out for another what, 3 years? 4? I think the tooth may have been part of our problem. So now we only have 15 more to go, and then molars? Whoo, hoo!

And we have been working on Travis and his numbers so he knows when to get up in the morning. We spray shaving cream on the wall in the bath for him to practice writing numbers.

But still all he does is open the door and yell, "Is it 6-3-0 yet?" And if I say no, he goes back in and cries until I say it is. He won't even play with his toys! BUT, I just got an e-mail from a fellow mom who has heard of my plight and she recommended this. OH MY GOSH! I am SO on the waiting list for this!

Tagged

So, apparently you have to read your friends' blogs to find out when you get tagged! So sorry about that! It's Christmas time, that will be my excuse!

First, from D'Lyn: 8 Things...

8 Shows I watch:

1. Cold Case
2. Amazing Race

3. Heroes

4. Lost

5. 24

6. ER

7. Numbers

8. Higgletown Heroes

8 Favorite Restaurants (How can they ALL be favorites??)

1. Chick-Fil-A (Good food AND a play place)

2. The Melting Pot

3. Chili's

4. Papa John's

5. ANYTHING Chinese

6. Sorry, we don't eat out very much...

7.

8.

8 Things That Happened to Me Today

1. 9 Loads of Laundry

2. Justin's Therapy Evaluation

3. I went to the GYM! So great!!

4. Travis had a potty accident 5 minutes after the last load of laundry went into the washer.

5. I talked my neighbor through HER day- 6 phone calls

6. I tried to find something to wear for a family picture Friday: something red, black, or white that is NOT Christmasy. For me and the boys. Does not exist in my price range.

7. I grilled hamburgers for dinner. Outside. In December.

8. I saw my sister in her wedding dress for the first time. She looks beautiful!

8 Thing I Look Forward To

1. All my kids' "firsts", and a few of their "lasts" (the last time I get peed on comes to mind particularly...)

2. Randy's return from work each day

3. Being wrapped in God's arms

4. Our 50th wedding anniversary

5. Seeing the boys grow up and their relationship form

6. Sundays and seeing my church family

7. Having the time to read

8. Snuggling with my boys

8 Things I Wish:

1. That my parents would not have gotten divorced

2. That my kids wouldn't wake up until 6:30 am (okay, maybe just after 6 am!)

3. That I lived closer to my grandmother

4. That I was a better witness for Christ

5. Can you believe that it took me until now even to think to wish that Justin didn't have DS?

6. That I trusted God more

7. That my sister and her fiance would decide ONCE AND FOR ALL to move to Texas, and then do it!

8. That Patrick Stewart could dance...this goes back to college...right, April?

And here is Erin H.: Decorations

You have already seen our tree:

And here's our front door:

But I refuse to show you our mantle because...well, then you would know I am a bad parent. We have 4 stockings (good!), but they do not match (bad). I believe that Christmas stocking were meant to point right, but ours point left, because one of them has an "M" on the other side. "Why?" You may ask, because NONE of our names start with an M. Well, that would be for my sister, who spent Christmas with us one year, and I bought her a stocking to hang on our mantle. So how could I buy a stocking for her, and not buy one for MY OWN CHILDREN?! Well, that would be the bad parent part. I REALLY want nice matching stockings with our names on them, so I went to look on line, and I could not find any that had 4 that looked like they were meant for our family that weren't sold out, so NEXT YEAR, I PROMISE, will be better! I will start looking in October...

A Sweet Gift

I was an exchange student in Mexico during high school. I made lots of friends and I still have one friend in particular with whom I continue to exchange "snail mail". She is a graphic designer and she does a lot of print ads for conventions and other programs. She always sends me post cards and other things of her work, especially at Christmas. I received a letter yesterday and she included another Christmas present for me. It is two little notebooks with each of the boys' pictures on them! The one she still has from when Travis was first born. I cannot believe that she still has that picture, and that she thought to do something like that for me! She is so thoughtful! Travis is on the left, and Justin the right. It is hard to see in the picture, but the border of each picture is baby items: bottles, safety pins, a stork, etc. It is so cute and oh, so sweet!

Luncheon

Today we went to a Christmas luncheon at the place where both Travis and Justin were born. It was a fun time to be able to see the precious women who were with us when Justin was born. One of our favorite people who we were able to see is the doula who was at the birth. She has a son named Justin too, so we joke about our two Justins. It was nice to be in an environment with other moms who were just excited to show off their sweet babies. That is what I like to do best!

This is the wonderful woman who helped Justin "be born" (Travis' words).

Do you think this should be the background for next year's Christmas picture?

Our wonderful doula! Justin has a connection with another Justin mom!

We Have a Tooth!

I told you we would have a tooth soon, and today it finally broke through! This morning we were at speech therapy so we were messing around in his mouth, and nothing, but by lunchtime I was playing with him and he bit me! With his new tooth! Yeah! I wanted to get a picture, but it's hard enough to feel the tooth given Justin's tendency to have his tongue out. It just would have been a picture of Justin smiling with his tongue out and you would have had to take my word for it anyway.

It seems silly, but dental problems are a potential issue with DS. I have read that it is very common for teeth to come in late, and in a random/uncommon order. Justin's tooth is one of the bottom front, just like it "should" be, so that is wonderful! Travis got his teeth on the early side of the curve, so I didn't know what to expect with Justin. The books tell you all the things to watch for, but it seems to me that the other 22 pairs of genes ought to have some impact on things. And Randy has terrible teeth, so I hope that doesn't doom both boys!

He Even Does Floors

Monday is typically cleaning day at our house. Travis loves to clean, and he has his own bottle (of water) that he uses to clean. By now, he knows which things he is allowed to clean, usually just the doors. He is so funny about cleaning! I told him it was time to clean the kitchen, so he asked me for a cloth, and he cleaned HIS kitchen!

And then I was cleaning the floor, and he asked for a mop and a bucket of pretend water.

But don't worry, Daddy, as soon as he finished the floor the mop morphed into a trimmer and he "edged" the bathroom and the living room while I "mowed" (vacuumed).

Baking Cookies

We made COOKIES on Friday. Lots and lots of cookies. We made 9 different varieties of cookies and candy. It didn't take as long as I thought it might, and it actually was fun. It was Randy's day off, and we had my mom to help, so with three adults and two kids we managed to stay ahead of the curve. We were making them to give to all of Justin's therapists and our neighbors, so we also packed them up and they are ready to go.

We also got a picture of Randy and Justin "flying". This is what I mean when I say that Justin's arms are out all the time. This is how he is when we carry him, but really, he is getting better. It looks very cute here though, so I don't mind.

And then we finished out the day getting our Christmas picture taken. We have adopted the tradition of taking our picture in front of other people's Christmas trees, since after one picture our tree will always look the same. This year we had to call a last minute audible because the child of our original choice came home sick from school, and we didn't want to expose Justin. But never fear...she recommended a replacement who was more than willing to open her home and be our photographer. It was so much fun! Travis is in an anti-picture phase, so we didn't know how the picture would go. But we had help from our friend's teenage daughter. She did a wonderful job of making him smile!

I love the picture cards that are available because I love seeing pictures of all my friends who are far away. The only problem is of course that they often send pictures of only their children! I love seeing the children, but I also like to see my friends, which is why I love the picture cards with spaces for multiple pictures! So you will see a family picture and a picture of the kids on all of our Christmas cards. In front of someone else's Chrismas tree. Which is why you will never receive our cards the day after Thanksgiving because we must wait for people to decorate their tree before we can request to be photographed in front of it. I wasn't certain how I was going to prop Justin to get a picture of the boys, but again, no problem. A sofa cushion came to the rescue. This is the boy's picture. I think you have seen enough of us lately!

The Little Things

Justin's progress has included some little things that aren't milestones by any stretch, but they are exciting advances for me:

He is really starting to hold himself up on his legs by himself. I never thought we would get past the phase of him scrunching his legs all up when he is held up. I am SO relieved!

He is moving his tongue around his mouth and actually starting to bite down (like he needs to do for eating). He does better on his left side, not so well on the right.

He is holding on when I carry him. Not really "holding", but at least curling his arms in when I hold him on my hip. This may not seem all that important, but it is if you ever want to walk through a doorway without pulling all limbs in for safe passage. I do love that he throws his arms way out, but it works much better for getting hugs than anything else.

And my biggest thrill...I think he is getting a tooth!!! No, really! I thought maybe he was a few weeks ago, but this is the real thing! It may take a long time, but I promise, it's there. And it's one of the middle bottom, just like it's supposed to be. It's hard to see it because his tongue is usually covering it, but I know it's there!

Snow in Houston

We had SNOW today! Yes, you read correctly. It started out as sleet and then it became SNOW! Fortunately we were home and both boys were awake so we got pictures. It was beautiful, especially since I know there is not enough that I would ever have to shovel it. I have lots of memories shoveling snow in WI from when I was younger. The best part was the hot chocolate at the end. I think we may just skip to that part today!

This is probably as close to a white Christmas as we will get, but who knows?!

Our Story

I am writing a story for the DSAH newsletter. One of the first questions we always ask each other is, "How did you find out about your child's DS? Did you know before he/she was born?" There is a section of the newsletter that has people's real stories of finding out and the resulting turmoil of emotions. We are good candidates since we are so close to that emotion. So this week I have been reliving the experience of telling everyone about Justin: the audible gasps, the uncomfortable silences, the tearful faces, the confused sputterings, the encouraging e-mails, the hugs, and the words of support. I will never forget some of the faces. I will never forget the words of hope.

Our story is a marked contrast to most stories. I have heard stories of women giving birth and the atmosphere in the delivery room changing from calm to one of confusion and near mayhem. "Trisomy 21!!" And doctors entering and listing off the myriad of health problems the baby has and then ending with, "Oh, and we think your baby has Down syndrome." Some people say they felt robbed of the joy of having a baby. No one congratulated them. Instead it was a somber, "I am so sorry." One woman said the doctor told her, "The good news is that you have a baby boy. The bad news is that he has DS." She said, "The bad news is that he has a heart defect. The good news is that he has DS." First of all, it's about the baby. It's just not right that news like that has to be discovered and delivered when a woman's hormones are crazy already, but it takes away the joy of the moment. Of a new life emerging. Of a family member being added. Of God's plan in action.

I am so blessed that I only have happy memories of April Fool's Day 2008. I am so glad that we didn't find out that day. I am so grateful that he didn't have any urgent health problems. That day is only the beginning. We are not defined by that moment in time. Our story is still in the very first chapter, and I think we have a long winding adventure ahead of us.

Picture with Santa

I took the boys to see Santa today. Justin was fine, but I wasn't sure Travis would go for it. He wanted me to be in the picture too. So I dressed for it, and at the last minute Travis agreed to go it alone, with Justin. Yeah!

The Buddy Walk

Today was the Buddy Walk. The weather was a bit chilly, but it was sunny and overall very beautiful. We had to bundle everyone up. Justin rode in the snuggly pouch, so we didn't put his t-shirt on him. I had to find an alternative outfit. I thought this was appropriate. The shoes make the outfit.

And this was how we walked. Well, I walked, Justin slept.

There ended up being over 2000 walkers, the most they have ever had! Our team was super! We had 41 people walking, plus a bunch of people who donated. This is our entire team.

We walked around the theater district and the Bayou. It really was lovely weather. The kids had so much fun running around. Our team came in last, since we stopped to take a picture. This is our team coming down the hill. Justin spent some time talking with the team. Actually, he just sucked his thumb and was passed around.

All in all, it was a really good day. We plan on making it an annual event. It meant a lot to us to have so many people come out and support Justin and our family. We have many, many years ahead of us, and I am overwhelmed looking at the picture of our team. So many people walking with us, today and always. They had signs along the route with facts about DS, including the prevelance of DS. There are about 5,000 babies born with DS in the US each year. Justin is one of the 5,000 for 2008. Someone off-handedly mentioned that we ended up being one of the families with this, one of the "lucky" ones. Today, I felt VERY lucky indeed.

Justin's Progress

Justin was weighed this week and he is up to 13 pounds, 10 ounces and 25 inches. So good! (And Travis is now at 29 lbs. 2 ozs. and 37 ins.) He is eating well and getting heavier.

He can clap his hands. His trunk muscles are getting stronger and while he cannot quite hold himself up while sitting, he is close! When he falls down, it is a slow, controlled fall. When I showed his PT, Penny, this week, she was very impressed. And I was so proud! Penny has been working on standing just to get the muscles to start working. She holds his feet and legs and I get his attention to lift his head up. After she holds him like that for a few minutes, she tries to get him to try to support himself (weight bearing on his legs). He always does much better right then because his muscles are remembering the feeling. (Like holding his mouth closed after eating since he has just been using those muscles.) I really like Penny, and I hope Justin does too.

Since I have all my teeth, and the economy is in the state it is, I have decided that all I want for Christmas is for Justin to sit up on his own. I have been told it is a lofty, but attainable goal. We have less than 3 weeks, but we are working on it!

Ten Years, Eleven Weeks

We have always tried to make our anniversary special, just because I think it is important to celebrate love and the commitment we made. Especially these days when long marriages are becoming fewer and farther between. We always take a picture too, and I display it in a sweet frame that a friend bought us for our first anniversary. I want our children to know that Mommy and Daddy love each other. We have taken our picture on Diamond Head in Hawaii, on Sulfur Mountain in Banff, and in front of the Spirit of Washington Dinner train in Seattle. This year: in front of our staircase in our house, with Travis' sunglasses in the background. It may not seem much cause to celebrate, but lately everything is becoming a celebration for us.

Some friends gave us a gift card for Babbin's Seafood Restaurant, so we ate a fabulous dinner there, on Black Friday. I kind of thought if would be really crowded because it was Friday night, and after everyone shopped, they would "drop" at a restaurant for dinner. Nope, it was fairly empty, and we had great service. Then we hurried home to feed Justin and then we went to see the new James Bond movie. Not the big trip we usually take, but we had fun, and we were together. And we didn't even have to find a supply closet in the hospital to duck into!

Oh, Christmas Tree

We managed to put up our Christmas tree. Travis helped. He wanted as many ornanments as he could carry and then he would take and put them all on the same branch. We tried to get him to separate them, but we couldn't quite make it happen every time. He didn't want anyone else putting ornaments on the tree. Fortunately, we put some on before he woke up, otherwise there might only be decoration on the bottom foot of the tree. (My son is short!) Then the boys pushed the tree back into the corner. I love this shot! Travis is such a good helper!

And here's the whole tree. Justin was sleeping or he would have been in the picture too. I wanted a close up of Travis too, but he was singing Jingle Bells and dancing and shaking an ornament that has bells on it.

Full of Thanksgiving

There is a song by Caedmon's Call called Thankful (I think. Ask anyone, I am horrible at remembering names of songs/bands!) The chorus goes something like this, "I'm so thankful, that I'm incapable of doing any good on my own." Every time I think of being thankful, I come back to that song. I am so very thankful that I cannot do ANYTHING on my own. Certainly nothing good. When I try to go it alone, I often crash and burn. Or other times I am just not content. It's not comfortable being outside of God's circle.


Last night when Randy came home with our new car (it's pretty, by the way, and NOT a firetruck...) all I could think about was how thankful I am that we have the resources to buy a car when we "need" it. I am thankful for all of the usual things: family, my home, life, health. But this morning I woke up to change Travis' sheets when he pee-peed in bed and I couldn't go back to sleep. I started thinking about the things that I usually brush over and assume will always be there: my husband, his job, clothes, electricity, the ability to do nearly whatever I want whenever I want. This year it seems like there is so much more for which to be thankful, but it truly is the same as always. God had made himself visible in new ways. But he is the same as he has always been. It is ME who is different. I am so thankful.

Face Time with Daddy

Randy has been working a lot and since the hurricane, traffic has been so bad that he has to leave by 6 am in the morning to make it to work by the time he needs to be there. And some days he doesn't get home before the boys, especially Justin, go to bed. When he is home, Travis is all over him, but he doesn't often get much time alone with Justin. So today, they talked.

They made faces.

And then Justin got tired and needed to rest.

And we bought a car today! Well, Randy bought it. I actually haven't seen it yet. When I told Travis that Daddy couldn't kiss him goodnight because he was buying a car, he asked excitedly if he could buy a firetruck with a siren (and made a siren noise) so he could drive it, and Mommy and Daddy too, and go up the ladder and spray water. He was SO excited that I had to close the door to his room so he would stop talking! I am almost scared to show him the car we DID buy. Because while I haven't seen it, I am pretty sure it's not a firetruck...

Buddy Walk Preview

We will be participating in the Buddy Walk in about 10 days. It is a fundraiser for our chapter of the Down Syndrome Association, and this is a national event is led by the National Down Syndrome Association. This is the blurb on our web site about the Buddy Walk:

There are over 270 Buddy Walks nationwide in which tens of thousands of people from coast to coast, and across the world, participate each year. The goal of the Buddy Walk is to bring about education, acceptance and awareness of Down syndrome, and to create camaraderie within our own community - making the connection between community and individuals with Down syndrome. The Buddy Walk's vision is to create an environment in which individuals with Down syndrome are welcomed with fairness, enthusiasm and encouragement.

The event was originally scheduled for September, so we didn't plan on being able to participate this year because it would be during Justin's recovery. But, thanks to Hurricane Ike, it was rescheduled for December, and now we can walk! I am really looking forward to this because Randy hasn't been able to attend any of the events at the Down Syndrome Association of Houston (DSAH). I want him to be able to meet some of the people I have been talking with and talking about so he can put names with faces. Plus, I am hoping he can meet some dads to make some connections. I have no vision of him making friends like I have, because that is SO a girl thing, but at least he can see what I have been doing.

I picked up our t-shirts yesterday and they are so cool! Justin (and all the people with DS) have blue shirts, and the rest of us have plain white shirts. I think that is really nice. Here's my picture of the boys with their shirts. Justin's might be more appropriately called a dress! I will take lots of pictures during the Walk and post them after the event. You can check out the web site too. Our team is called "Justin's Jaywalkers". Isn't that fun?