'Tis So Sweet

As I look back on everything our little family has been through, I am just blown away by the goodness and faithfulness of God. He has protected us through and from so many things. He has specifically protected R from major complications as a result of surgery. He has provided for us in so many ways, and I am (almost) speechless as I consider His care for us.

This picture was taken almost exactly three years ago at UW Hospital in Madison. I honestly thought that we might never really get to stay away from the hospital for very long because Christmas, 2006 was in the middle of a 8 month in and out of the hospital cycle. The revolving front door of the hospital seemed to turn endless for us both welcoming us (again!) and sending us back home again to worry and wait and pray. I honestly could not have made it through without knowing without a shadow of a doubt that Jesus was Someone I could trust with my long-awaited, precious, and very sick little boy.

We are coming up on almost three years since R has his last surgery (well, February, 2010, will be three years), and I am reminded of the hymn I sang to him as a baby. I would sit beside his little crib and sing late at night when I knew we were moving from Tennessee to Wisconsin, but I had no idea that the move to the midwest was really the least of the "hardships" we would be going through.

It truly is so sweet to trust in Jesus.

'Tis so sweet to trust in Jesus, just to take Him at His word.

Just to rest upon His promise; just to know, "Thus saith the Lord."

Jesus, Jesus, how I trust Him! How I've proved Him o'er and o'er!

Jesus, Jesus, precious Jesus! O for grace to trust Him more!

I'm so glad I learned to trust Him, Precious Jesus, Savior, Friend;

And I know that Thou art with me, Will be with me to the end.

Jesus, Jesus, how I trust Him! How I've proved Him o'er and o'er!

Jesus, Jesus, precious Jesus! O for grace to trust Him more!

(And yes, for those of you who are purists, I only put vs. 1 and 4 in this note because those are the two verses I seem to know from memory and, therefore, would sing to R.)

Adorenaments

One Advent season tradition we have as a family is our Adorenament ornaments that we hang throughout the month. Every night or two, we take one out of the box, read about it, talk about it, then hang it on the tree. These simple board book style cardboard ornaments each have a picture representing a name of Jesus on the outside with a verse and short description of His name on the inside. Family Life used to produce these, but I can't seem to find them anywhere anymore. I say this because I don't want you all to think this is a plug for something I'd recommend you go buy because I could only find one new set on Amazon, retailing for over $150 dollars!!

But, I digress....

These Adorenaments are one of our favorite family traditions, and I love that each year we are reminded of the names and therefore the nature of Jesus. I love that we are reminded of who He is and why He came.

We have allowed R to pick the "ornaments" in whatever order he chose to this point. He has some that he is wanting to save to the end, for whatever reason. Anyway, the other night he picked two...The Vine and The Shepherd.

The ornaments all open up like a little board book with a description of each. So, The Vine talked about Jesus being The True Vine and we His branches (John 15:5). We talked about how branches need to stay connected to the vine to live and produce grapes. Then, we talked about Jesus as The Good Shepherd and we are His sheep (John 10:11). We talked about how Jesus cares for us as a shepherd cares for his sheep, even if one wanders away.

Then R blew me away when he stated what took over 25 years for me to learn...

Well, mom, I guess our job is just to stay close to our shepherd or our vine, Jesus. We are just supposed to stay close to Him and let Him take care of the rest, right?

Yes, right, my son. (choked up tears!)

Thank you, God, that you are already teaching R about You and what it means to depend on You.

Low Tone and Low Temperatures

Personally, I have always deep-down dreaded winter. Those who know me know that I am a moments notcie from packing up and moving south. I'm not a fan of snow, ice, or dark evenings. I am especially not a fan of cold, heavy coats, and my cold hands. Winters in Tennessee were bearable because the snow was limited and the winters were short, but winters in Wisconsin are just so long...and dark...and cold. But, who am I to complain? Just as I started feeling sorry for myself that we are beginning yet another winter in Wisconsin, my son...

As many know, R has low muscle tone (hypotonia) as a result of his hydrocephalus. I have been told that his muscles have to work twice as hard to accomplish the same things as those without low tone. Metaphorically, he constantly feels as though he is "moving through mud" as he walks and runs through life. Honestly, R never complains about this, and I am so very proud of him. Summers are especially hard on him as the heat seems exhaust him, but I forget just how hard the summers are for him until winter comes.


Winter officially came this last week, and R seemed to come alive. His energy has been through the roof since the temperature dropped. Truly, through the roof! His therapists have told me in the past that the cold gives his muscles a little extra tone and tightening, but this winter we have seen it the most. The following are simply a sampling of comments we have heard since the temperature dropped...


"Feel my muscles; I am so strong."

"I LOVE winter, mom! Why don't you love winter?"

"Let's go outside and play!" (it was 6 degrees when he said this)

"Why do you say it is too cold to play outside?"

"No, I'm not cold...I'm strong!"

"The snow is brilliant!"

"I hope it stays winter forever."


So, God obviously did have yet another reason to move us north to the bitterly cold midwest. He has shown me so many reasons that R and his health are better off in the midwest, I guess I need to just embrace the weather. In honor of this new goal for myself, I voluntarily got out in the snow with him to play and build our best snow fort yet.


Remind me of this newfound positive attitude come below zero weather in February when the daffodils are blooming in Tennessee, please. Remind me of this a little bit louder and more forcefully in March when Wisconsin still has many, many inches of snow still on the ground and many cold weeks ahead while Tennessee has dogwoods and tulips blooming. Yes, seriously, please.

Making Friends

As most of you know, R started Kindergarten this year at yet another school. He is presently attending his third school since moving to the Milwaukee, WI area, and I feel just horrible about it. Finding the right school fit has been quite difficult for us, and R is constantly having to make new friends each fall. (I won't bore you with the whole story on why the three schools.) Thankfully, R makes friends rather easily, but the process does still take a bit of time. This year is no exception...

R is presently one of only two new kids in his Kindergarten class as everyone else went to this school last year for what we Wisconsonites call 4K (preschool or nursery school for you Southerners!). R is very outgoing and friendly, and he is getting to know the people in his class, but apparently he thinks that the process is not happening quickly enough. So, he decided to attract friends with something that most every boy loves, especially in the fall....

No, not food (this time!)

A football!

R has had four home addresses in his five years of life. He's had countless hours of therapy (the physical kind) with a total of nine therapists. He's been in three schools and has had somewhere in the neighborhood of 12 brain surgeries. He sounds like he should be a very troubled kid with alot of problems, doesn't he? Well, somewhere along the way, he has learned to cope, adapt, make friends, and be very creative in his problem solving. But, I digress...

R has watched me for five years now treat (err...bribe) our new neighbors and possible friends with baked goods at least a couple of times each year. He has figured out that gifting those around you will result in a bigger gift to you in the long run - friendship. So, R noticed that one 5th grade boy in his school carried a football in his backpack to school every day, and R decided to do the same. The first day, he had reportedly 9 boys from the two Kindergarten classes playing football with him during recess.

The irony...R doesn't even like football to watch or to play.

But, he does REALLY like having friends, and he knows his friends do like football. So, he chooses to be the football guy because he knows that simple little nerf ball will attract friends, and he longs to speed up the process on friendship. He and I have talked about the fact that his ball could get lost at school or that the foam could get holes in it, but he doesn't care. He just wants friends.

I will happily find him a new football is something happens to this one because I just love his attitude. He doesn't complain about having to transition to another new school. He doesn't complain about not having friends. He just looks around and figures out what to do about his current situation.

Makes me think, what are little things I could be doing to be more connective with others an "speed up the process" on friendship instead of complaining??

I learn so much from my little guy...

Believe it or not, He suggested the ride

At Family Camp this summer, one tiny little sentence and one tiny little statement from our teacher totally changed my thinking about a major thing I think about. I cannot get this tiny little sentence out of my mind, so this is what I choose to start blogging (again) about.

Jesus suggested the ride.

What? (you say)

Give me a minute to explain and give some background. First the explanation and then how it changed me...

Mark 4: 35-41

That day when evening came, he said to his disciples, "Let us go over to the other side." Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, "Teacher, don't you care if we drown?" He got up, rebuked the wind and said to the waves, "Quiet! Be still!" Then the wind died down and it was completely calm. He said to his disciples, "Why are you so afraid? Do you still have no faith?" They were terrified and asked each other, "Who is this? Even the wind and the waves obey him!"

I have read the above passage many, many times throughout my life, and this passage of Scripture has always pointed me to lessons on faith, the power of God, or the diety of Christ. But, now, I cannot believe that I had never seen this lesson before. (If you are wondering what I am talking about, I put it in bold type for you above.)

Jesus SUGGESTED the ride in the boat!!! He knew that a storm was coming and that it would be horriffic. He knew that their boat would be NEARLY swamped. But, not only was Jesus with them through the storm, He suggested they get on the boat headed straight for the storm that would rock the world of the disciples.

So, why did this little statement change me so proufoundly?

You know, by know, that R has a condition called hydrocephalus. As a result of this condition, his first five years of life have been filled with surgeries, therapies, doctor's appointments, MRIs, and lots and lots of both heartache and prayer. I have felt like the disciples many times when they asked Him "Teacher, don't you care if we drown?" I have felt like I was drowning more than once on this journey this far. Hydrocephalus is just a crappy condition as it is treated, rather than cured. For this reason, the dreaded increase in spinal fluid pressure can raise its ugly head at any moment (pun very much intended). Yes, there have been many reasons to celebrate along the way and numerous blessings and answered prayers. I have written about many of these in the emails I sent out when R was in and out of the hospital and in previous blogs. But, I have felt many times like this hydro storm was both unplanned and allowed by God...but I never EVER thought that He actually suggested this ride.

He did. He suggested the ride when we finally were able to conceive a child after almost five years of trying. He suggested the ride when we were oblivious new parents who didn't see anything coming. He suggested the ride that has included some of the hardest circumstances and decisions for our precious child that I could ever imagine. He suggested the ride that would result in us having one son, not three to four kiddos as I originally had hoped and planned for. He suggested (or rather demanded) this ride for me, for David, and for R.

I never doubted that He has been with me in the storm because His presence has been so plainly obvious to me. I never doubted that He chose to calm the storm to a drizzle when the last surgery worked over two years ago. I never doubted Him (crazy as that may sound to some of you). But, I did believe that while God allowed R to have hydrocephalus, it was not necessarily something that was planned.

I find such comfort in knowing that He suggested the ride. Why? It means, to me, that this is a journey of purpose (for me and for R). It is a renewed promise for me that God is using this journey in some way in the lives of me, R, and others that is above and beyond what I can see or have knowledge of. It is such a reminder that nothing that happens that is outside His control or foreknowledge, and I am just called to follow Him into the boat -- and hang on tight!

All glory and honor to Him who sits on The Throne and who rides with me in the boat headed in the direction of His choosing...

Writer's Block

There's much going on here right now, but I seem to have little to say. I've been pondering my next blog post, with little inspiration. Hmmm. I guess you all just get to enjoy the silence from my end!

The above three sentences were penned back in early summer and saved in my "drafts", for I just haven't had the inclinication to write. Well, I think that may be about to change as I have been thinking about blog posts the last few days, and one particular thing keeps coming to mind that I want to write about. There have been many, many things, but I have been too busy soaking it all in to take time to write...

• Rob started kindergarten - as a 5yo, not a 6yo, as we originally thought he would have to do.


• Rob started kindergarten WITHOUT an IEP, as we originaly thought he would have to do.


• Rob started kindergarten about 1 week after he was discharged (i.e. graduated) from his final therapy (speech and language therapy) because he gained three "developmental years" in the last year.


• Rob started kindergarten, and he is so thrilled/happy/excited that it is impossible to be (very) sad or (very) lonely.


• The above picture is, obviously, Rob on the first day of kindergarten. We were waiting for the bus which forgot him, but we had a great time anticipating and being excited...before rushing to the car for a quick drive to school!

But, believe it or not, Rob starting kindergarten is not what I feel pressed to write about...more later this weekend. I feel like I have missed documenting so many things in this blog, but I have to remind myself that I really write this blog for me...when I feel the need to write. I am so prone to guilt trips that I refuse to feel guilty about the holes and lapses in this little 'ole blog, just so you know.

R Says...

Recently, I badly sprained my ankle. The doctor thought there might be a small fracture, so he asked me to use crutches and stay off my feet as much as possible over the weekend until the radiaologist could look at the x-rays on Monday. R was with me at this appointment, and he was intently listening to the doctor as he explained that I should keep my ankle wrapped, use the crutches, take ibuprofen, etc. The doctor asked if I had any questions, and I said no. R, however, interjected...

R (in his most serious voice)- "I have a few questions, doctor."
Doctor (with humor clearly in his eyes)- "yes?"

R- "Can my mom still take a shower?"
Doctor - "yes, yes, she can"

R- "Can my mom still change her pants? You have to stand on one foot to put your leg into your pants, you know."
Doctor - "Yes, I realize that. Yes, she can still change her pants."

R- "Can she still drive a car? We drove here today in our car."
Doctor - "Well, yes, she can drive you all home today."

R- "Can my mom cook this weekend?"
Doctor - "Well, I was hoping that your mom would stay off her feet this weekend, so no. No, your mom should not be up on her feet cooking this weekend."
R (with a slight tone of panic)- Oh, no. That is not good.

Yes, we did survive the weekend quite well. David and R did a great job taking care of me.