Sometimes It Just Hurts

Last night was hard.  We got together with a group of friends, most of whom have children around Wesley's age.  And while it should have been a special time of enjoying hanging out with friends and watching our kids play together, for me it was miserable. Whenever Wesley is around other kids his age, it is as if a spotlight is shining on him, showing off all of his differences for everyone to see.  While other kids are playing with toys in an age appropriate manner and running around together laughing, Wesley is not.  He would prefer to tap toys together, lick them, or try to hold a stack of them in one hand - all of this while walking in circles around a house.  Now that he has glasses, this also means that I need to follow him wherever he goes to make sure he doesn't take his glasses off, and more importantly, to make sure that his glasses don't get trampled when he takes them off.

I often wish that Wesley needed less supervision so that I could talk more with my friends.  But last night I realized I didn't actually want to be a part of the conversations that they were having.  It is hard to sit and listen to all the things their kids are doing, listen to the struggles that come with a normally developing toddler, and smile as they laugh about funny things that happened during their days. Sometimes I find that following Wesley around and watching him is much a much easier alternative.

Don't get me wrong, I love my friends.  I am grateful that they pursue me even when I try to hide.  I am so thankful to have friends that don't let me build walls up between us, but instead keep helping me tear them down, one brick at a time.  Last night I was so blessed to have a friend who saw that I was having a hard time, sought me out, followed Wesley and me from room to room, and cared for me.  She saw my ugly tears, heard my hurtful words, and still reached out to me and loved me.  And, the Lord used her caring words to change my heart.  The rest of the evening was still hard.  Seeing the other kids still hurt.  But, I was also able to see how the Lord has blessed our family so abundantly by providing us with friends who are committed to walking alongside us.

After getting home last night, the Lord brought the following verse to my mind, which helped me to regain perspective:

"The Lord is my chosen portion and my cup; you hold my lot.  The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance."  Psalm 16:5-6

The lines truly have fallen for me in pleasant places.  God has given me a wonderful husband, two precious sons, and dear friends who care about our entire family. But most importantly, God has shown his love for me by sending His Son to provide for my greatest need by dying on the cross so that I can spend eternity with Him.  What more could I ask for?  Indeed, I have a beautiful inheritance!

Christmas Cards

It seems like Christmas is sneaking up on me this year.  It's already time to start thinking about Christmas cards, and I don't think we even have one single picture of our family this year where all four of us are looking at the camera.

Thankfully, it looks like Shutterfly may come to the rescue.  They have these wonderful folded greeting cards, where I can pick a handful of individual pictures of us that give a story of our entire year rather than finding that perfect picture of the whole family.  I used this style of card for Wesley's birthday earlier this year, and I loved the way it turned out. 

In the past I have often used photo cards with one big picture, which are great when you have that one good picture of the family.  But, now that Wesley is old enough to try to squirm his way out of every picture, we'll have to see if this will work out for us or not.  I'm still crossing my fingers!!

I have been eyeing Shutterfly's thank you cards for years, but have never bought any.  I always remember them after I have already purchased generic ones on a grocery store run.  I know, shame on me!  Maybe this will be the year when I take the time to personalize our thank-yous.

Just looking at all these cards is getting me excited about ordering our own.  I guess I better pull out the camera, get my boys in some coordinating outfits, and start working on getting a good picture of the two of them together! 

Blogging friends, if you want 50 free cards of your own, follow the link!   http://bit.ly/sfly2010

Wesley Signing "More"

After getting his glasses on Friday, Wesley figured out how to sign "more" all by himself and is very excited about it.  Maybe actually SEEING our hands when we sign for him helped a bit with that.  It's more of a clap than a "more" sign, but hey, we'll take what we can get.

My favorite part about watching him sign is seeing how proud he is of himself.  He laughs and laughs, loving our praise and delighting in the fact that he's figured out how to communicate with us.  In fact, I think he's more excited about being able to tell us that he wants more than he is about actually getting more of what he wants.

Here he is showing off his new signing skills for the video camera:

I Can See!

We picked up Wesley's glasses on Friday morning, and so far they have been a huge success.  Wesley can definitely tell that his glasses are significantly improving his vision, so he rarely tries to take them off. He keeps looking around and smiling, or walking to the windows and just staring outside.  I'm sure it must be an amazing experience for him to be able to see everything around him rather than living in one big blur.

Check out my new awesome glasses!

This is so much fun!  I can see EVERYTHING!

I must admit though, my favorite part about Wesley's new glasses is that he will sit and watch TV now.  Ever since he started rolling over at two months old, Wesley hasn't stopped moving. His therapists have explained to me that he has sensory issues that seem to drive him to be in constant motion.  But now I wonder, did poor vision have anything to do with it?  He still walks around the house constantly, and it is rare to see him sit still for even a moment or two.  But twice now since getting his glasses, he has sat completely still in my lap for 25 minutes while watching the Baby Einstein "My First Signs" video!  I am amazed, since I never knew it was possible for him to get his wiggles out and sit still.  And more than that, I LOVE snuggling with my baby.  If I could, I'd watch that video several times a day just to have the opportunity to hold him close.  I love just breathing in his sweet baby smell and wrapping my arms around him and letting him rest his head against my shoulder.  And, I love that this is not the usual hug, where I realize Wesley's wanting to snuggle with me as he's already leaving, because he already got his half a second snuggle with mom that he was looking for.  Instead I get to hold him for a full 25 minutes!  Wow!  But yet, I'm still sad when the video comes to an end and he starts squirming to get down.  We'll watch the video again tomorrow, though.  And the day after that, and the day after that.  I'll make sure of it!  And, maybe he'll even learn a few signs along the way.

Happy Birthday

Dear Zach,

Happy Birthday, my firstborn son!  I can't believe you are four years old already.  I still remember praying that the Lord would give us another child after we lost your older sister Grace.  When we found out you were a boy, we named you Zachary, which means "the Lord will remember".  And, the Lord has remembered! You have been a wonderful blessing to us from the Lord.

It is so clear to us that you are the perfect older brother for Wesley.  He adores you (with good reason)!  You can get him to do things after just a few minutes that it takes Mommy and Daddy forever to get him to do.  For example, we've been working on getting him to put his lips together to say "baba" or "mama" since he was 12 months old.  Last weekend, you decided to play a game with him and started smacking your lips together.  He thought you were so funny that he started imitating you.  Within an hour you had him saying "baba" and "mama" and laughing about it so hard that he kept falling over.

We love watching you play so sweetly with Wesley.  Whenever you talk to him, you change your voice to this sweet little voice and you say things like "Wesley, would you like another goldfish? Say "more"...".  Then you wait a minute to see if he'll try it before you give him one.  You get so excited about working on his picture cards with him, showing him two cards and saying so sweetly, "Wesley, would you like your ball, or would you like the Itsy Bitsy Spider?"  You LOVE it when he picks the right picture card and you clap and say "Yay, Wesley" even louder and more jubilantly than I do.

Sometimes you help a bit too much with making sure Wesley's following the rules, but I am grateful that you are always faithful to make sure that he is NEVER licking ANYTHING!  I'm counting on you to keep a good eye on him now that he has his glasses and let me know any time he takes them off.

It is such a delight for me to watch your mind at work.  You LOVE anything to do with numbers.  When I read stories to you, you are always telling me what page number we are on and what page number comes next.  The other day you even surprised me with how well you are learning to tell time.  You came up to me and told me, "Right now it's eight fifty-seven.  Then it will be eight fifty-eight and then eight fifty-nine."  Thinking I could catch you, I asked you what time it would be after that.  You just smiled at me and stated rather matter of factly, "Nine o'clock".  You're starting to learn some math concepts too.  You regularly come up to me and say things like "Hey mom, guess what!  Three and four and three makes ten!"

We've enjoyed teaching you how to read this summer too.  I'm so glad I bought you the BOB books, since you have thoroughly loved reading.  Reading is like a puzzle to you, and your eyes light up each time you fit the letters together to make a word.  It has been fun to see how much this has opened up your world as you now try to read signs and everything else you see.  You also love to write out your own words on the bathtub and the fridge with your sponge letters and magnet letters.

You were so timid about learning to ride your tricycle at the beginning of the summer that I was surprised you were willing to try out your bicycle last month.  But with some extra coaxing from Dad, you finally tried it and were pleasantly surprised at how fun it is to ride a bike.  I am so proud of you for being brave and trying it even though you were scared of falling.  You have really grown in stepping out of your comfort zone, fighting your fear, and trying new things this year.  

Most of all Zach, it has been such a joy to teach you more about Jesus this year and watch as you have begun to understand the gospel.  Now that you realize I read the Bible before you get up each morning, you come into my room at seven and ask right away if I can read to you too.  So, you set up the pillows on Daddy's side of the bed and sit next to me while I read to you from the gospel of Mark.  As I explain to you what we read, it is such a joy to watch the connections you make in your mind.  Last week as I was explaining to you who the Pharisees were, you realized they were the same people who wanted to kill Jesus.  So, you were very excited to tell me that Jesus let those bad men kill him because he loves us so much.  Your prayers to Jesus are also so precious.  Just last night you thanked Jesus for taking the punishment that we deserve and dying on the cross for our sins because he loves us so much. I continue to pray that your knowledge of Christ's love for you will lead you to place your trust in your Savior.

I love you so much Zach!  I look forward to seeing what the Lord has in store for you in this upcoming year.

Love,

Mom

The Ring Bearer

We were thrilled to have my dad come up for a visit a week and a half ago.  With the way everything worked out, Wesley didn't get to spend much time with Grandpa,  but Zach and Grandpa had a WONDERFUL time together!

On Friday morning we went to Zach's gymnastics class, and he was excited to show off his new skills.  Grandpa used to be a gymnast in high school and college, so that made him being there extra special.  Then we went out for lunch and took Grandpa to the park.

Then on Saturday we went to my cousin Dan's wedding, where Zach was quite the handsome ring bearer.  Zach ADORES Stephanie and was overjoyed to be a part of their special day.  We usually have a difficult time getting him to smile for the camera, but he was all smiles for her.

He even smiled for a family picture! (Too bad his eyes are closed....)

After church on Sunday, Zach showed Grandpa some of the new things he learned how to do this summer.  He did his best to catch Grandpa on his bike, but Grandpa's still too fast for him!

Zach was particularly excited about reading to Grandpa.  He's started reading through the BOB books this summer and is really enjoying figuring out how to read.

Zach definitely loves his Grandpa.  We miss you Dad and look forward to seeing you soon!

partial Trisomy 4p21q

I often find myself struggling to explain Wesley's exact diagnosis, instead just stating that he has a rare chromosomal abnormality. I have found that if I use the exact medical terminology, I often get a blank stare and glazed over look in response.  But due to recent questions I have received, I thought I would take the time to explain his diagnosis in greater detail.  So, for those of you interested in the science behind the diagnosis, here it goes:

Whereas most people have 46 chromosomes, Wesley has 47. His karyotype (a picture of systematically arranged chromosomes) shows that he has an extra 21st chromosome. Usually triplication of the 21st chromosome would indicate that a person has Down syndrome, but this is not the case for Wesley.

Chromosomes are composed of 2 arms - a short arm (labeled "p") and a long arm (labeled "q"). In Wesley's extra 21st chromosome, the short arm is actually a piece of the 4th chromosome, NOT the 21st. As a result, instead of having Down syndrome, Wesley has the diagnosis of partial Trisomy 4p21q. This means that he has a partial trisomy of the 4th chromosome (4p) and a partial trisomy of the 21st chromosome (21q).

Because Wesley's chromosomal makeup is different from Trisomy 21, he does not have many of the visible attributes often associated with people with Down syndrome.  On the other hand, the fact that he has an extra piece of the 21st chromosome means that there are some similarities. Just like many children with Down syndrome, Wesley has hypotonia (low tone), particularly in his tongue and jaw. Because of that, he has many difficulties with with feeding and speech. His hypotonia also affects his walking and the strength of his ankles.

Since Wesley's chromosomal abnormality is so rare, doctors cannot give us any information as to what Wesley's long term capabilities may be. Our best guess is that they will be similar to that of a person diagnosed with Down syndrome.  But, as Psalm 139 says, the Lord knows what Wesley's future holds, and he has sovereignly and lovingly ordained all of Wesley's days.  We trust that the Lord has a wonderful plan for Wesley's life, and we look forward to seeing all that the Lord has in store for him.