Playing

Dear Wesley,

It is such a joy to be your mom!  Daddy and I had so much fun playing with you today.  You recently found Zach's little soccer ball, and you love it!  You start laughing as soon as we show it to you.  We think it's so funny that you love to put it on the floor and lay on it, rolling around on it.  You laugh and laugh as you're all curled up on top of it.

You also enjoy playing throw and catch with us.  We roll the ball to you, and then you throw it back to us.  Daddy's pretty proud of your throwing skills.  He insists that you already throw better than your big brother!  I think he's probably right - most of the time the ball goes in the direction you intend it to, and your form is pretty good considering your age. 

This week you've started kicking the ball around the house too.  You drop the ball down in front of you and then walk along kicking it as you go.  Eventually you are going to run into a wall since you watch the ball instead of watching where you are going, but you're pretty tough so you'll be OK.

 The soccer ball has been pretty good for your gross motor skills too.  As you walk around kicking the ball, you eventually lose your balance and fall.  Then, you keep chasing the ball around the house, laughing as soon as you reach it and then pushing it away so you can keep going.  The wonderful thing is that instead of army crawling when you're chasing it on the floor, you're regularly CRAWLING now!  And, your crawl is getting FAST.  You've picked up your big brother's trademark super speedy crawl.  This is exciting for Dad and I to watch, because you're strengthening your shoulders and your stomach muscles while you play.

 Since you were sick this morning, Daddy offered to stay home with you from church.  When I got home he told me about what fun he had watching your sign language video with you.  He had a big smile on his face as he talked about how much you laughed while watching it and how you kept moving your hands around as you saw the kids on the video signing.  It is such a joy for us to see you realizing that these people are communicating with their hands and starting to try to imitate them.  We are continuing to pray for you, that you'll start to pick up these signs and use them to let us know what you want.

Then tonight while wrestling with Daddy and Zach, you decided you wanted to tickle them.  You kept lifting up Daddy's shirt and tickling his tummy.  Your tickles have never been very effective before, but today you were actually making Daddy genuinely laugh.  (Daddy's pretty ticklish, so I was amazed that he kept lying there and letting you tickle him.  He must really love you!) You and Daddy and Zach had a blast tickling each other.  In case you didn’t know, you have a pretty awesome older brother.  He lay still for you and let you keep tickling him and poking him in the mouth and licking his forehead.  He laughed and giggled with you as we all enjoyed your belly laugh.

Wesley, you are such a delight and a blessing to our family.  Your laugh brightens our day!  I love you so much my sweet Wesley-poo!

Love,

Mama

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.

Autumn

The boys and I had a wonderful time playing in the leaves last week. Wesley doesn't usually prefer playing outside, but he LOVED the leaves and the thousands of acorns in our back yard.

Zach was my big helper - raking the leaves into big piles and then jumping in them.

Wesley wasn't a big fan of sitting in the pile of leaves, but he enjoyed wandering around the yard or sitting and inspecting the acorns.

This is so much fun mom! You should let me play with acorns more often!

**Check back soon for pictures of Zach in a tuxedo!

18 months

What an exciting month we have had over here! Wesley is walking everywhere now. He loves to pick up a toy in each hand and just wander through the house, exploring everything. He's also figured out that he doesn't just have to take the two top toys out of one of his toy boxes. Instead, he can dump all the contents out of all five of them, choosing to carry around the last two toys he finds. What fun that is for Zach and I as we get to clean up the mess!

Join with us in rejoicing and praising the Lord for the new things Wesley is learning to do!

• He said and signed "ada" (all done) last week (emphatically!) for the first time in months. While he hasn't done it again since, it is a reminder to us that he CAN do it. So we keep working with him, hoping that soon he will start signing and speaking more consistently.
• He is handing me picture cards to show me what he wants. He even went to get a picture card the other week to bring it to his speech therapist so she would turn on one of her toys. Also, most of the time, if I show him two cards, he will chose the one that he wants and give it to me. These are huge cognitive milestones. Our speech therapist was telling me that most kids she works with take months to figure this out. So, she thinks it shows that while his muscles in his mouth are so weak and uncoordinated that he finds it difficult to talk, he seems to understand what it means to communicate and is learning to do it when provided with the necessary tools. The most exciting part of this new development is that he LOVES to hand us picture cards. He is SO PROUD of himself. Whenever he gives us a card to show us what he wants, he gets a huge smile on his face and laughs. It is such a joy to watch my son be so happy that he can communicate to me what he wants.
• In the past two weeks, he has squatted down three times to pick up a toy and then stood back up without falling over. Considering how often he falls over and how much he struggles with balance, this is AMAZING! We are continuing to work with him, but are so excited as we see improvement in this area.
• He is now drinking thickened liquid (apple sauce and pureed Gerber 2nd fruits) from an open cup with minimal spilling. He is permitting us to hold the cup for him and support his jaw, which is a big step for him, especially since for a long time he did not want our hands anywhere near his face. He has even started putting one of his hands up to help me hold the cup, and sometimes he pulls my hand back under his jaw to indicate that he wants more. His swallowing is slowly improving, so hopefully soon we'll be able to introduce juice!
• He has started clapping! This is very important because bringing hands to midline is something Wesley has always struggled with. We think this might be one of the reasons he is not interested in sign language. He still claps to one side, holding one hand out and reaching over with his other hand to pat it. But, now that he has figured it out we can start working on moving it to the middle.
• Since he's started clapping, I have seen him sign "more" for two different therapists. He still won't sign for us, but I'm happy to see him starting to understand and try it for them.
• At speech therapy last week, he said "in" multiple times when working on a puzzle with his therapist. It was a transportation puzzle, and she would repeat the same phrase over and over again: "bus goes...", "car goes...", "truck goes...". After a while, Wesley figured it out and would say "in" for her when she paused. He also said "aaay" (yay) with us each time we cheered for him as he put the puzzle pieces in.
  
• Wesley's chewing is improving. His feeding therapist this morning informed that she is very happy with the way he is chewing and moving his tongue around while eating crackers. I think this is the first time I have ever heard a feeding therapist/speech therapist tell me that Wesley is doing anything well in the area of feeding. Wesley is still having a difficult time with textures and is refusing to even try most non-cracker, non-pureed foods. But, we love our new feeding therapist and are praying that the Lord will give her much wisdom as she seeks to help him improve in this area.

Momentary Afflictions

Wesley's diagnosis can at times be a heavy weight on my heart. When I think of what it will mean for him to live his entire life with a disability, it is difficult not to grieve.

But, God's word offers a different perspective on Wesley's life. In 2 Corinthians 4:17-18, it says "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal".

When I look at Wesley's life in light of these verses, I am filled with hope. In light of all eternity, his time here on earth is so short, and his disability is only a light and momentary affliction. If he trusts in Jesus as His Savior, he will be able to look back over his life here on earth and say that God used this trial in his life to prepare him for an eternal weight of glory beyond all comparison.

To paraphrase John Piper, "God cares about Wesley's body - big time. He simply didn’t come to fix all that in this age. He cares 10 million times more about Wesley’s soul and about his everlasting life and about the resurrection from the dead on the last day, when Wesley’s body will rise and be made new and He will wipe away every tear from Wesley’s eyes and death will be no more. Neither will there be mourning nor crying nor pain any more for the former things will have passed away. Oh, God cares about crying; He cares about tears; He cares about Wesley’s chromosomal abnormality. He cares about these things."

"But, He cares 10 million times more about what becomes of Wesley forever. We just have to keep these things balanced right. Wesley’s eternity is 10 million times more important than whether or not he gets well now. What matters is that Wesley gets well eventually and that he stays well forever, satisfied not mainly by God’s gifts but by Himself. “This is eternal life, that they might know you, the only God and the One that you have sent.” Oh, He cares, but in a certain order, both in priority and in time. He will make Wesley well, oh yes He will, in due time, if Wesley trusts in Him."

Lord, I pray that you will save my precious son Wesley, and that one day his tears will be wiped away as he sees you and worships you face to face.

Concentrating

I love watching Wesley play with his Wedgits. He just recently figured out how to stack toys, and he loves building towers and pulling them apart. This kid is definitely not a quitter. He still hasn't figured out that there is an order to where each piece goes, but he keeps working at it patiently each time until he figures it out. Instead of getting frustrated, he seems to enjoy the challenge.

God Exists

And without faith it is impossible to please him,

for whoever would draw near to God must believe that he exists

and that he rewards those who seek him.

Hebrews 11:6

So often I live as if God does not exist. I struggle through many days in my own strength, rushing from one doctor's appointment to another, hurrying home for the umpteenth therapy session of the week, squeezing in time to read a book to Zach before the next item on the schedule, feeding the boys, feeling remorse for the times I responded impatiently to Zach rather than patiently training and instructing him, and feeling guilty for all the things I should have done that day that I didn't get to (therapy with Wesley, preschool with Zach, play time with the boys, etc...). It's as if I believe that it is up to me to provide the best care for my children and that their success in life and eternal salvation is fully dependent on me. Praise the Lord that this is not true!

When I cut God out of the picture and attempt to do everything in my own strength, I often find myself fearful of the future, angry at my children, and overwhelmed by my circumstances. I am depriving myself of the joy of knowing God and fellowshipping with him. God has given me these children, and God will also give me the grace to raise them as they need to be raised. He WILL help me! He has promised that he will reward me if I cry out to him and diligently seek him.

Over the past 18 months, the Lord has already begun to give me a taste of his precious reward. The fellowship of knowing God and seeing more of who he is (his great love for us shown most clearly by the death of his Son for our sins & his sovereign care over every moment of our lives) as I have cried out to him and sought him in these trials, is a priceless and precious reward.

Glasses

This morning I started reading 2 Corinthians and was reading 1:1-11, which the Lord used to encourage my soul. He was so kind to remind me again that he is the Father of mercies and the God of all comfort who comforts me in my affliction. And, he is using these afflictions to make me rely not on myself but on God, who raises the dead. On Him I have set my hope, that He will deliver me again!

I was so grateful that the Lord led me to read these verses this morning, as I was in great need of his mercy and comfort at Wesley's ophthalmologist appointment today. (Zach handled himself wonderfully throughout the hour and a half appointment - which I know was a miracle and a gift to me from the Lord!) We found out that Wesley's vision has significantly deteriorated over the past year. He went from having normal vision last summer to only being able to see clearly up to 6 inches away now.

I realized as soon as I found out the news that my greatest concern was that Wesley would look even more different with glasses and get even more stares and questions and funny looks. It seems that the Lord is using this as yet another opportunity to peel away a layer of pride and teach me humility. I was again reminded that my hope is not in Wesley looking normal but in God, who raises the dead and who loves Wesley more than I ever could.

The Lord has helped me to see these glasses as a gift to help Wesley see better rather than just another thing that will make him look different. I am looking forward to how his improved vision will help him to develop in other areas as the whole world opens up before his very eyes.

Now we just have to hope that he will realize that it is his glasses that help him to see and let us keep them on his face!

17 months

My sweet Wesley is growing up so fast. It is hard to believe that my baby is almost a year and a half old now! Where has the time gone? Wesley is our little bundle of joy. He delights in life and loves to laugh. I regularly come into the room to find Zach performing comedic acts and Wesley laughing so hard his little belly is shaking.

He loves to play with things that can spin, like wheels on a truck. Whenever he comes across such a toy, he first inspects it with his hands, carefully spinning it around and watching it intently. Then he gets that look in his eye of pure delight, opens his mouth, sticks out his tongue, and enjoys the pure pleasure of having the wheel spin across his tongue.

I love watching how much Wesley enjoys being with people. If he comes into a room and sees one of us there, a smile will light up his face and he will come over to us as fast as he can, laughing all the way. He loves to give us hugs and kisses and play games such as "duck, duck, goose", throwing a ball back and forth, or any other game he might make up on the spot.

It has been very exciting to see him take a few big steps developmentally over the past two months.

• Due to sheer determination and an "I will not give up no matter how many times I fall down and no matter how much it hurts" attitude, Wesley started walking at 15 months. As evidenced by the black eye in the photos above, he still has balance issues and run-ins with inanimate objects. But, he is improving each day.
• He has started saying "dada" and "all done" (ada) and signing "all done".
• He comes when we say "Come to mama/dada" and obeys (most of the time) when we say "no"
• He has started giving us things when we say "Give it to mama/dada".
• He kisses us back when we kiss him.
• He lifts his arms up to show that he wants us to pick him up.
• He is learning how to use his pincer grasp.
• He is eating crackers and veggie straws & drinking out of a sippy cup all by himself.

We have been so encouraged as we have seen him grow in his receptive language and language comprehension. Thank you Lord for the work that you are doing in our precious son.

We love you Wesley! Your joy and laughter are contagious, and we love watching you grow up!

Milestones

As a mom of a special needs child, "milestones" is one of those words that I dread to hear. Any time Wesley is compared to a milestones chart, he always falls short. And as he grows older, he will only fall farther and farther behind when compared to an average child.

My first big run-in with the milestone chart was when Wesley turned one. When I think back to when Zach turned one, I think back on all the excitement of that first birthday. This is the monumental moment when a child goes from being a baby to being a toddler. They start walking, talking, eating table food at meals with the rest of the family, playing games, and so on.

When Wesley turned one, my response was very different. It hit me even harder than it ever had before that things are going to be different for Wesley. He was still drinking from a bottle and not even trying to hold it on his own, had just learned to sit up at 11 months (although he had been army crawling since 7 1/2 months), was refusing to eat any solid foods that were not Gerber 2nd baby foods, and was not even remotely close to talking, signing, or walking.

One day as I was grieving over the life that Wesley would never have, a dear friend shared with me that she had been praying for me and felt that the Lord had laid it on her heart to encourage me with the fact that Wesley may not be meeting the milestones in the time frame that an average child might meet them, but that doesn't matter. God has a perfect milestone chart for Wesley, and I can know with confidence that Wesley will meet every milestone on His chart at exactly the right time. This has been such a comfort for me to come back to time and time again. Whenever I am tempted to compare Wesley to other kids or be discouraged/worried about him because we have been working for what seems like forever on something and he's still not doing it, I go back to that and remember that Wesley will do everything that God has planned for him to do in exactly the time frame that God has planned for him to do it.

While I know it will still be hard for me every time Wesley's milestones are mapped to a chart, I rejoice that I can trust God's good and perfect plan for Wesley's life.

Psalm 139:13-16

¹³ For you created Wesley's inmost being;

you knit him together in my womb.

¹⁴ I praise you because Wesley is fearfully and wonderfully made;
your works are wonderful,
I know that full well.

¹⁵ Wesley's frame was not hidden from you
when he was made in the secret place.
When he was woven together in the depths of the earth,

¹⁶ your eyes saw Wesley's unformed body.
All the days ordained for him
were written in your book
before one of them came to be.

This Psalm has been such a comfort to my soul and a precious promise for me to cling to throughout the months since Wesley was born. God knit Wesley together, and he is fearfully and WONDERFULLY made! Wesley's frame is not hidden from the Lord, and all of his days were ordained before even one of them came to pass.

When I am tempted to fear the future or to worry about when Wesley will learn to walk without falling, talk, sign, or eat solid foods, I can cling to the promise that all of Wesley's milestones have been ordained too. They will come to pass in perfect accordance with God's wonderful plan for Wesley's life.

Psalm 13:6

"But I have trusted in your steadfast love; my heart shall rejoice in your salvation. I will sing to the Lord, because he has dealt bountifully with me." Psalm 13:6

Lord, please help me to trust in your steadfast love. Even when my circumstances seem to say that you have forgotten me, or that you are not dealing with me according to your love, please turn my eyes back to your Word and help me to believe the promises that I find there. Your steadfast love toward me and toward our family never ceases. You give me new mercy and new grace each morning to walk through the day that you have set out for me. Great is Your faithfulness!

O Lord, may my heart always rejoice in your salvation. Fill me with the joy that comes from knowing that you have provided for my greatest need in sending your Son to pay the penalty for my sins. Romans 8:32 says, "He who did not spare his own Son, but gave him up for us all, how will he not also with him graciously give us all things?" Since you gave up your Son to provide for my greatest need, how can I not trust in your steadfast love toward me? How can I not trust that you are working all of these things for my eternal good? How can I not believe that you will give me everything that I need as I seek to both care for Wesley and also try to effectively care for Zach, manage my household, and love & serve my husband? Lord, thank you for the promise that your grace is sufficient for me! May I cling to this promise every moment of every day.

Lord, you truly have dealt bountifully with me. Thank you for your abundant grace and mercy and love that you pour out on me each day. Thank you for the two wonderful boys and the wonderful husband that you have given to me. Thank you for the wonderful church that you have placed us in and for all care that we have received from friends at our church since Wesley has been born. Thank you most of all for saving me from my sin and for making me your child. You have blessed me beyond measure. Thank you Lord!

God's Perfect Plan - Part 2

Click here to read Part 1.

But yet, these past months have been long and difficult. And, I know they are only the beginning of a long and difficult path that the Lord has called us to walk. I still grieve often for my son and the life he will never live. I often feel alone and feel that the road the Lord has called me to walk is too hard. Sometimes I just want to give up. But in those moments, God is always faithful to lift my eyes off of myself and point them back to him. When I am looking at him, all the cares of this world seem so small in comparison. When I am reminded that he will never leave me or forsake me, I no longer feel alone. When I am reminded that he will uphold me with his righteous right hand, the road no longer seems so hard to walk. And, when I am reminded that my God also had a Son who was despised and rejected by men, I know that the God to whom I cry out is intimately acquainted with my grief. And then I am comforted, for my God knows my grief because of his great love for me. While I did not choose this path, he did. And he chose to allow his son to suffer and be rejected so that I might be saved. And so that Wesley might be saved.

My prayer at the beginning of 2009 was that if someone were to ask me what I was most thankful for, I would be able to answer “the gospel”. While I would not have chosen for the Lord to answer my prayers in this way, I am grateful that he has graciously used this trial to fill my heart with thankfulness to him for giving his life for me and for saving me from my sin. He has filled me with a joy in the gospel that I did not have before Wesley was born. And I know that as I continue to walk down the road that he has laid before me, only he will be able to sustain me and give me the strength to go on. This gives me great joy, for I know that as I lean on him for strength and cling to his promises, my love for my Savior will only grow deeper with each passing year. So, while I would never choose for Wesley to have a chromosomal abnormality, I also know that this is the way that the Lord has chosen to sanctify our family, to work in us for our good, and to give himself great glory.

God's Perfect Plan - Part 1

It has been eleven months since the birth of our second son, Wesley David. These months have not been at all as we would have imagined them. When he was born, we were overjoyed that God had given us a healthy, beautiful boy. But, soon after he was born we began to suspect that things were not as they ought to be. He had a very weak suck, and after 3 weeks of trying to help him nurse, we had to give up and switch to bottles. Nursing was something that was very important to me, and I had to give it to the Lord, trusting that this was not part of his perfect plan for Wesley's life. Little did I know that this would just be the first of many times I would have to release my tight grasp of my dreams for Wesley's life and hand them to the Lord.

As well as struggling to eat and gain weight, Wesley also had difficulty breathing. After many doctor trips and visits to specialists, he was diagnosed with laryngomalacia, where the trachea is weak and falls down over the airway, blocking it and making it difficult to breathe. It seemed that every time we turned around, we identified new potential health problems and visited more specialists. When he was one month old, we decided it would be wise to put him through genetic testing to make sure everything was OK. What I was not prepared for was the phone call I received two weeks later from our doctor. When he informed me that Wesley had a rare chromosomal abnormality, the weight of it was overwhelming.

In that moment I began the fight for faith that I will continue to fight the rest of my life. The fight to trust that the Lord's plan for Wesley is perfect. The fight to believe that here, even in this, God is working for our good. He is working this for the good of Mike & I, he is working for the good of our family & our marriage, and he is even working this for Wesley's good. The Lord has been so kind to remind me again and again of the truth in Romans 8:32, which says “He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?” I continue to cling to this promise and the hope and peace it provides. Because God gave his own Son for me, providing for my greatest need, how can I not believe that he will provide for all of my other needs? How can I not believe that he will give me every good thing?

The Beginning

As Julie Andrews says, the beginning is a very good place to start. Unfortunately for me, it seems that the beginning of my entrance to the blogging world should have occurred 11 months ago, with the birth of my second son Wesley. So, I shall attempt to retrace my steps and recall all that has happened in this season before forging ahead and blogging about the present.

My desire for this blog is to share how the Lord is at work in our family, and more specifically how the Lord is using the birth of Wesley to conform us to His image and to bring great glory to Himself.