Wesley's Life and God's Glory

After I wrote the post The Things I Can't Do Anything About, I received a question from a reader, asking if I ever feel like God's glory isn't enough to make up for these trials.  Do I ever feel like I would rather have Wesley happy and healthy and whole and not struggling than have God glorified?  Do I ever feel like God has enough glory and he doesn't need more?  God is glorious no matter what happens in our our lives, but Wesley only has this one life to live and why does it have to be so hard for him?  Why would God make a child miserable to bring himself glory?

In answering these questions, I first want to acknowledge that there is no easy, quick answer.  These are hard questions that have to be wrestled with.  In order to consider these questions rightly, I must first believe two things about God.

First, I must believe that God is good and that He is working all things together for my good (and for Wesley's good if he trusts in Him).  According to Romans 8:28, "And we know that for those who love God all things work together for good, for those who are called according to his purpose."  I recently read an excellent quote by R.C. Sproul on this verse that said,

"God, in his providence, has the power and the will to work all things together for good for his people. This does not mean that everything that happens to us is, in itself, good. Really bad things do happen to us. They are only proximately bad; they are never ultimately bad. That is, they are bad only in the short (proximate) term, never in the long term. Because of the triumph of God’s goodness in all things, he is able to bring good for us out of the bad. He turns our tragedies into supreme blessings."

 When I am tempted to question God's plan in creating Wesley with special needs, I can cling to the promise that while things will be more difficult for him and for us, God has promised to work this trial for our good.  He will turn the hardships that we have walked through and will continue to walk through into a supreme blessing!  And, when God works this trial for good in our lives, that is when He receives much glory.

Secondly, I must have an eternal perspective.  2 Corinthians 4:16-18 says, "So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.  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."

It is true that here on earth Wesley only has this one life to live, and that in his lifetime he will face many difficulties and suffer much.  But, praise the Lord, even if he were to suffer every moment of his life here on earth, it is a light and momentary affliction in comparison to the eternal weight of glory beyond all comparison that is awaiting him in heaven.  What I see - a little boy with a chromosomal abnormality who will struggle in this life and never accomplish much in the world's eyes - is transient.  But what I don't see - heaven, where Wesley, in his new and perfect body, will forever worship and sing praise to his creator and savior - is eternal.

When my eyes are opened to the transience of this world and I long for the day when I will see my Savior face to face and worship him forever, God receives much glory.

So, while I wouldn't say that God has made Wesley miserable (you have only to meet my sweet little boy to see that he is filled with joy), I would say that by God creating Wesley with a chromosomal abnormality, He has already received much glory because of how He has worked this trial for good in our lives.  God has used this trial to make me increasingly thankful for my Savior, who has provided for my greatest need by sending His Son to pay the penalty for my sins.  He has used Wesley's medical challenges to remind me that while I am not in control, I can trust Him, for He is upholding Wesley's life.  And He has given me a greater longing for heaven, when all things will be made right, and when I will see Him face to face.

Therapy

WARNING:  This post is long!  I considered  breaking it into five shorter posts, but it seemed fitting that the long, labor intensive task of therapy be summarized in one long post.

One of our greatest blessings and most time consuming tasks since Wesley's birth has been therapy. Currently, Wesley has therapy five times a week, seeing a speech therapist, feeding therapist, physical therapist, occupational therapist, and developmental therapist. In addition, we work with him each day on the things the therapists have shown us in their sessions.

Most of our therapies are in the home, but in September we switched to a feeding therapist at Easter Seals. Although we drive 45 minutes each way to see Judy, we are so grateful for her help. Wesley has low tone in his mouth, a very weak jaw, a poor suck, and a disinterest in trying new foods. He also dislikes it when we put our hands on his face to provide jaw support. So, things that we're working on are chewing, helping him to move his tongue without also moving his jaw, drinking from a cup, getting used to having our hands under his jaw, and transitioning from baby food to table food.

Since we've only been seeing Judy for a few months now, we are excited to be seeing significant improvements.  With all her hard work, he has gone from drinking only out of his sippy cup, to drinking thickened liquids out of an open cup (Gerber 2nd peaches or applesauce), to learning how to drink rice milk and apple juice from an open cup.  He is letting us put our hands under his chin to support him as he drinks, which is amazing given how much he used to hate us touching his face.

He has also gone from not sucking well at all, to sucking Gogurt out of  container, to learning how to suck from a straw.  He still has a long way to go with straw drinking, but with Judy's persistence she's helping him learn to keep his tongue in his mouth, put his lips around the straw, and strengthen his suck.

As I shared here, after eating Spaghetti-O's in therapy sessions in December, he also started eating them for us at home last week! This is a huge step for him.  We would love your prayers that Wesley would continue to allow Judy and I to introduce him to new foods and textures and help him with jaw support. In the past, this has been the area of therapy where he has fought us the most.

Wesley's other therapy sessions are usually much more enjoyable. Wesley loves his physical therapist, Becky. Because of his sensory issues, Wesley always wants to be moving. So, working with him on rolling, scooting, crawling, and walking has been fairly easy. On the other hand, Becky is always trying to find ways to work on stability with him. (He's usually not a big fan of stability exercises!) Because he over pronates and walks with his ankles turned out, Becky recommended that we get Sure Step orthotics for him. They have made such a big difference!  His balance has significantly improved with the orthotics, although he still does fall regularly.

Right now our big goals for Wesley are to teach him how to balance on one foot, play in a squatting position without falling over, stand up by himself without support, walk up the stairs with support, and crawl down the stairs by himself.

Becky has found such enjoyable ways for us to practice these things.  We play with his launch rocket, helping him to balance on one foot while he lifts his other foot to stomp on the launcher.  We also lay out a board and have him practice stepping over it - he thinks it's so funny to go back and forth, back and forth, and I love watching his concentrated expressions as he carefully lifts one leg over the board while using us or a chair for balance.  And of course, we regularly practice going up and down the stairs, which Wesley thinks is such a fun game!  He comes running every time he even hears the word "stairs" mentioned.

Christi used to be Wesley's speech and feeding therapist in the home, but recently switched to just providing speech therapy. That has made such a big difference.  Now Wesley looks forward to seeing her and enjoys their sessions rather than watching her with dread while waiting to see whether it will be a speech or feeding session.

Christi has done a fantastic job of helping us to teach Wesley to communicate, despite his lack of interest in speaking or signing. With her help we have created a picture board with pictures of his favorite toys, along with his sippy cup and several foods he eats. Now when we give him a choice of two different cards he is able to let us know which toy/food he wants.  He loves being able to communicate with us and always has a big smile on his face as he hands us his preferred card.

She also works with him on saying and signing "more" and "all done" along with playing games with him in hopes of helping him to start saying more consonants and words.  We play with bubbles while saying "pop, pop, pop"; we wind up wind-up toys and say "ready, set...." and wait for him to make an attempt at saying "go"; we play with farm animals, working on animal names and sounds they make; we put balls into a popper and say "in"; etc....  So far Wesley's only consistent words are "daddy" and "in", but we have heard him say "mama" a few times and "bubble" once.  So, we will keep working.

He still seems to have a disconnect, where he doesn't realize that he can use his mouth and hands to vocalize and communicate.  So, we would love your prayers that Wesley would understand the power of speech and start attempting to communicate with us.

Wesley's old occupational therapist, Donna, was a spectacular resource for us.  Her expertise and years of experience were such a blessing to us as she has helped us in so many areas.  Before we started seeing Judy, Donna helped us teach Wesley how to close his lips over his spoon rather than keeping his tongue out as we fed him baby food.  She also taught him how to hold his bottle by himself and how to drink out of a sippy cup.  For those things alone, we can never thank her enough!

Another thing Donna noticed was that Wesley's constant need for motion seemed to be a sensory issue.  So, she recommended a SPIO vest to provide him with proprioceptive input.  What a difference that has made!  While he still walks and runs around the house constantly, the vest has calmed him down significantly.  He is now able to sit still for longer periods of time and concentrate on other things rather than just his need for motion.  Since getting the vest, we have seen him make great strides in fine motor skills, feeding, and speech now that he is able to focus better.

Right now, the biggest things we are working on with Wesley are putting shapes into his shape sorter and coins into his piggy bank, working on the concepts of in & out and up & down, and learning to use his pointer and his pincer grasp on a consistent basis.

Wesley's newest therapist is Kiya, who provides him with developmental therapy.  Wesley ADORES Kiya.  The moment she arrives, he runs behind me and stands behind me while peeking around my legs to smile at her and giggle.  As she says hi to him, he starts laughing and will just laugh and laugh with her. Sometimes it is hard for her to get him to participate in activities, because all he wants to do is flirt with her and enjoy her presence.  It is such a joy for me to see the bond they have formed and watch the fun that they have together.

Kiya works with Wesley to help him grow developmentally in how he plays and interacts with others.  Right now our goals are to help him grow in participating in non-preferred activities rather than throwing temper tantrums.  As well, we're working on helping him learn to follow commands (which we - especially Zach - hope will help with learning to share too!),  learn how to imitate us, use his eyes and his hands together when interacting with people and toys rather than looking off elsewhere, and begin to communicate more (whether that be with signs, picture cards, verbal imitation, or words).

Kiya uses a lot of the same activities that we use for occupational therapy and speech therapy, seeking to incorporate the language, fine motor skills, and appropriate play skills all together into the activities we do.

We are so thankful for all of our therapists and for the ways they help us.  God has very clearly hand picked the perfect ladies to help Wesley to learn to the best of his abilities.  They have become a part of our family, and we will miss them greatly when Wesley ages out of Early Intervention.

School

After much anticipation, today was Zach's first day of preschool. He was so excited that he couldn't wait to get up this morning... literally!  He had his clothes all set out last night and was up and getting ready before 7 a.m.  (Normally we encourage him to stay in bed until 7, but today was a special occasion.)

On the way out the door, his smile was a mile wide as we grabbed his Lightning McQueen backpack and his lunch box.  He also made sure to bring the picture he colored for his teacher and the homemade envelope he had taped together to put it in.

Upon arriving at school, he was excited to find a coat hook especially for him.  It even had his name above it.  He proudly hung his coat up and then did a little dance in the hallway as I talked with his teacher.  She was so welcoming to Zach, and within two minutes she had him talking her ear off.

When I arrived to pick him up, I saw him laughing with the other boys at the lunch room table.  Then, when he saw me, his whole face brightened up.  He couldn't wait to finish lunch and show me the activities he had completed and the treat his teacher left in his cubby for him.

I thoroughly enjoyed listening to him this afternoon as he explained in great detail the instructions his teacher gave him for each activity and how he followed them.  He took the time to show me how on one of his papers he wrote his own name, because he told his teacher she didn't need to write it for him since he could write it himself.  Pacing back and forth in the kitchen, he spoke animatedly about the toys he played with and the  conversations he had with other kids in his class.

It was such a joy for me to watch my son have an amazing first day at school.  Thank you Lord for providing Zach with such a wonderful teacher and class.

Much Given...Much Required

Dear Zach,

When I watch your little mind at work, I am in awe.  The questions you ask and the vocabulary you use are constantly reflecting depth of the thoughts running through your little head.  When you use words like "ubiquitous" or "occupied" correctly in a sentence, my jaw drops.  Often, instead of answering your questions, I am asking you, "Where did you learn that?".  The other day, you informed me that you could count to 100.  Believing that you would count to 20 and then get stuck, I asked you to show me.  And you did!

You are reading so well, and you often pick out words that you can read when I am reading books or the Bible to you.  Then today, when I picked you up from Sunday School, I looked down at the picture you colored and my eyes went wide.  You didn't color very much, but your name was clearly written across the top of the picture, and not in your teacher's handwriting.  I asked you if your teacher had helped you write your name, and you said no.  You informed me that you told your teacher you could write your name all by yourself - and then you did it!

But Zach, when I see the mind that the Lord has blessed you with, I am reminded of the words that Jesus spoke in Luke 12:48.  "From everyone who has been given much, much will be required; and from the one who has been entrusted much, much more will be asked."  Zach, I don't know why the Lord gave you the mind that he gave you while giving Wesley the mind that He gave him.  But I do know that the Lord has given you much, and as one to whom the Lord has entrusted much, much will be required of you.

When I look at you and Wesley together, I often smile as I see God's wisdom in giving Wesley to you as a brother.  I pray that growing up with him, helping him, loving him, and seeing how hard it is for him to learn things will humble you.  I pray that God will use the difficulties that Wesley experiences to help you realize that everything you have is a GIFT from God.  I pray that you will never grow proud because of what you accomplish, but that you will thank God, knowing that He is the giver of all good gifts.

I pray for you each day, that you will trust in Jesus as your Savior and that you will love the Lord your God with all your heart, with all your soul, with all your mind, and with all your strength.  My heart will rejoice if one day I can say, "This is my son Zach, a man after God's own heart."  God has given you much Zach, and if you love your Savior and seek to follow Him all of your days, then you can use the gifts that He has given you to further His kingdom and to bring Him much glory.

Zach, I can already see that the task ahead of Daddy and I will be difficult as we seek to teach you and model for you humility and a love for our Savior.  But, I also rejoice as I see the Lord already at work in your heart, drawing you to Himself.

Love,

Mom

Bubbles

Dear Wesley,

Have I ever told you that your laughter is contagious?  Once you start laughing, it's hopeless for me to try to keep a straight face. And when Zach and Daddy are around too, you're sure to get a whole symphony of laughter going.

My favorite thing about your laughter is that you laugh with a purpose.  You don't just laugh because you think something is funny.  You laugh because not only are you enjoying something immensely, but you want EVERYONE around you to enjoy it just as much as you do.  If we don't start laughing right away, you come over and stand right in front of our faces and keep laughing until we join in with you.  (You would be thrilled to know that I am laughing right now just thinking about your enthusiastic laugh!)

We recently figured out that one sure way to get you laughing is for Daddy to blow bubbles while you and Zach run around trying to pop them.  To say that you love bubbles is an understatement. They have been a therapy tool for months as we have used them to work on lots of things you weren't interested in working on otherwise.  (You probably have no idea that we've been working on getting you to say your "p" sound as we say "pop, pop, pop", or that popping bubbles is practice with using your pointer finger, or that we were all thrilled beyond belief last week when you made the connection that signing "more" can be used not only to request more food, but also to request more bubbles!)

Anyway, back to my story.  Daddy and I have never seen you and Zach have as much fun laughing as you did the first night that Daddy pulled out the bubbles.  If you were expecting more therapy when you saw the bottle come out, you were in for a surprise!  Instead Daddy blew bubbles EVERYWHERE while you and Zach chased them.  (Really, Zach chased them while you laughed at his antics and ran around in excited circles.)  In fact, I think you thought watching Zach dive around popping bubbles that were almost out of his reach was way funnier than popping the bubbles that Daddy blew right to you.

Soon chasing bubbles turned into chasing brothers.  You started chasing Zach around while he squealed with laughter, enjoying watching you run after him while staying just out of your reach. You two laughed and laughed while you ran in circles around Daddy's lounge chair in the family room.  Eventually Zach let you catch him, and I think you thought that was the funniest thing EVER!  Zach fell to the floor and yelled, "Wesley, tackle!".  Then you ran over to him, looked at him and just cracked up, and reached out your arm to gently nudge him.  Zach threw himself exaggeratedly to the floor as you fell on top of him, squealing with delight.  You two kept chasing and wrestling until you eventually wore your big brother out.  You know, he can't run around 24-7 without getting tired the way you can.

Daddy and I even caught you standing up BY YOURSELF in the middle of the floor to chase Zach again rather than crawling over to the couch to pull yourself up.  And even better, you were so cute that I decided to take a video of you.  Amazingly, it was during this video that you decided to say "bubble" for the first time!  Daddy and I couldn't believe it!  We were so proud of you!

Wesley, you are such a delight and a blessing!  You bring so much laughter and joy into our home.  I love you so much, and I know your Daddy and big brother do too!

Love,
Mama

Standing Steadfastly - Part 2

Click here to read Part 1.

In my last post I wrote about how in the midst of this trial, God Himself is my way of escape.  When I take advantage of the means of escape that He has provided for me by calling out to Him and trusting in His faithfulness and goodness and sovereignty over my circumstances, then He lifts me up and causes me to stand up under the trial I am walking through rather than be weighed down by it.

But how do I remain steadfast in this trial, continuing to stand rather than slowly being weighed down over time until I am crushed underneath the weight of it all?

According to James 1:2-12, I am to count it all joy when I face trials of various kinds, because I know that the testing of my faith produces steadfastness.  This means that the trial the Lord has called me to walk through is being used to test me with the express purpose of strengthening my faith.  As my faith in God is strengthened, the result is steadfastness, which the ESV Study Bible defines as "a life of faithful endurance amid troubles and afflictions".

James goes on to say, "And let steadfastness have its full effect, that you may be perfect and complete, lacking nothing."  It is amazing to me that God has designed it so that the way that I am to grow in holiness is by walking through trials, counting it joy because I know that God is using these very trials to teach me how to faithfully endure by trusting in my faithful God.

God even addresses what I am to do when I begin to feel crushed by the weight of it all again - not knowing what to do, fearing the future, lacking wisdom for how I am to best care for Wesley while still caring for and loving the rest of my family.  God tells me that He WANTS me to ask Him whenever I lack wisdom.  And, He promises to give wisdom generously whenever I ask.  In fact, it glorifies Him when I seek His wisdom, trusting that He is good and will work all things for good.  I am so grateful for God's promise to generously give me wisdom as I trust in Him and call out to Him, that I might remain steadfast as I walk through this trial.

As I look to God as my way of escape and faithfully endure this trial while calling out to God for wisdom, I am trusting that He will continue to lift me up and cause me to stand up steadfastly under it.  I pray that one day God will receive much glory as it is said of me, "Blessed is Elisabeth, for she remained steadfast under trial.  She has stood the test, and she will now receive the crown of life, which God has promised for those who love him."

Success!

Today was a big day for us.  A huge day!

Wesley's feeding therapist has been working with him for months to get him to eat "big people food".  In December he started eating Spaghetti-O's with meatballs and mini ravioli with meatballs for her, but he refused to eat them for us at home.  He also started drinking juice or rice milk from an open cup for her, but again was refusing to drink from an open cup for us.

We talked with Wesley's therapist and concluded that this was yet another case of Wesley's motor planning issues.  He always insists on everything being done the same way by the same person in the same place.  So, we figured that he had associated eating non-baby food with his therapist and the therapy center.  He wasn't able to make the motor plan transition to permitting us to feed him at home in his high chair.  Yesterday at his feeding therapy session, his therapist worked on helping me to feed him and encouraging him to eat for me.  She even gave me an extra cup she had for assisting him with open cup drinking.  It was a spectacular success!  But we still had to transition his feeding home, and after so many failures, my expectations were quite low.

Surprise of all surprises, Wesley gobbled up his Spaghetti-O's and meatballs and drank 2 ounces of milk from his cup for lunch today!  Of course, I had to adhere to the strict structure of the meal to make it as similar to his therapy sessions as possible.  First we practiced chewing by taking bites of veggie straws on each side of his mouth.  Then he watched me pour the Spaghetti-O's into a bowl, which I put on his tray.  (I normally NEVER put bowls of food on his tray and in reach of his swiping hand!)  I gave him several bites with a spoon to acclimate him to the taste, texture and temperature.  Then we went in with the fork!  We went back and forth, putting bites of meatballs on each side and practicing chewing.  Wesley tolerated it amazingly!

After Wesley was full, we started practicing with open cup drinking.  He let me put one of my hands under his chin for support while I held his cup up to help him take sips.  He signed more between sips to let me know that he wanted to keep going.  He even laughed as I would bring his cup up to his mouth for more!  I couldn't believe it!

Thank you Lord for helping my son to start eating.  We have been praying for so long for a breakthrough, and it seems that today is the day You have chosen to answer our prayers!