Expectations

Isn't it funny how disappointment is often linked to how we expect a situation to turn out, or how we expect life to turn out. Many misunderstandings, heartache, and pain are over a disappointment in expectations. We expected to have a healthy baby when we had Toby. I may expect my husband to respond in a certain way and he doesn't, then I'm angry or frustrated. Just since May we have experienced the sudden death of my grandmother and step-grandfather, a weird yearly unexplained rash on my hands, arms, neck and face that caused my eye to swell shut, a broken arm, unexplained mold on the back of hanging pictures in the boys' bedroom, and a broken dryer.

When I called my husband to explain the broken dryer, that just so happened to stop working on the day he was flying to Atlanta.

"Don't you think enough bad has happened to us recently, can't we get a break?"

His response:

"No, that's life, Carrie."

And you know what, he's right. One thing God has been teaching me lately is how comfort and ease of life is a false god in my life, and especially in the lives of American Christians. On my very very worst day, it's still better than someone else's best day. So, then I began to wonder should I just expect everything to go wrong and then be surprised if it goes right? Do I need to change my expectations? Instead of expecting life to be easy, comfortable, less chaotic, and organized - do I expect it to be the opposite and maybe I won't be half as surprised or grieved when curve balls are thrown my way. It seems a gloomy way to look at life - glass half empty instead of glass half full.

I DO NOT believe we should live without hope or look at life negatively, but the Bible does instruct us NOT to be surprised when bad things happen.

Peter talked about this,  in I Peter 4:12 "Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you."

Jesus said in John 16:33, "These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world."

In this world you have tribulation, and we will. Don't be surprised when the fiery trial comes, yet so often we are. I have been currently reading through a book called Teaching From Rest: A Homeschooler's Guide to Unshakeable Peace by Sarah McKenzie, and it's message (Biblically based) has been teaching me not only how to home school from a state of rest, but how to life life from a state of rest even in the midst of absolute chaos.  Even if you aren't a home schooling mom, I highly recommend the book (she has a new edition coming out in August) because what she talks about is so applicable to LIFE. In the chapter The Cake Under the Couch, she relates all of those little daily things that happen to us - the broken dryer, the toddler tantrum, the car breaking down, etc. and says, (these were my list - she listed different things)

"Can you hit the pause button on your frustration long enough to realize that people rank infinitely higher than anything else on the list? Have you considered that God may have scooted these people into view for the very purpose of slowing you down? (p.23)

Whatever is getting in the way of your plan for the day,...whatever that intrusion into your grand plan for the day is, it's also an opportunity to enter into rest. (p.24)

and now a quote from C.S.Lewis

The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's 'own' or 'real' life. The truth is of course that what one calls the interruptions are precisely one's real life - the life God is sending one day by day; what one calls ones' 'real life' is a phantom of one's own imagination. 

-C.S. Lewis (McKenzie, A Homeschooler's Guide to Unshakeable Peace, p.23-24)

I laughed when I read this because this is ME. I lament the juice spilled on the floor, or the broken dryer (did I mention our dryer is broken - just in case you missed that), the little inconveniences of every day life because they interrupt my plans. They interrupt my comfort. I just want them to be over with so I can get on and live my "real life". Yet, that is life. These interruptions should also be driving us to interact with the people in our lives to take the time to get on eye level with that child and say, "It's okay, let's clean this up together." instead of ranting and raving how their mistake interrupted plans for the day. (I am so guilty of this).

But, what about the BIG things? Death, diagnosis, disease, health issues - those aren't small things. How do we live from rest in the big things? The same was with the small - taking time to trust, rest, pray, and live connected with the One who knows and has experienced life as we know it.

Hebrews 2:17-18

Therefore he had to be made like his brothers in every respect, so that he might become a merciful and faithful high priest in the service of God, to make propitiation for the sins of the people. For because he himself has suffered when tempted, he is able to help those who are being tempted. 

Hebrews 4:15-16

Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need. 

Our pastor preached on these scriptures last Sunday and pointed out that Jesus is the only God of all the religions of the world - the God of all gods who came to earth to be like His people. He left the glory of heaven to experience life and suffering, ultimately to die a death for sins he did not commit so we could have a relationship with him. He doesn't ask for us to be perfect, to follow a set of rules, but to lay aside our sin and follow Him.

He experienced so many things as a man on earth:

*financial hardship (but the Son of Man has now where to lay his head, Luke 9:58), 

*emotional suffering (Father, if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done, Luke 22:58), 

*loss of relationship (He was betrayed by Judas)
*physical suffering (beaten, crown of thorns, cat of nine tails, crucified)
*persecution and mocking (And Herod with his solders treated him with contempt and mocked him, Luke 23:11)
*betrayal and denial (by Judas and Peter)
*temptation (Matthew 4)

Yet, through it all, the writer of Hebrews says we do not have a high priest who is unable to sympathize with our weaknesses. He knows suffering. He wept when Lazarus died, even though He knew He would raise him to life again. He experienced hard things and can sympathize with us in our weakness because He isn't the God in heaven so far removed from us, but He is Emmanuel - God With Us.

I want to fall on my knees and worship and cry, "Holy, Holy, Holy."

As a result I can go on and have new expectations, not that life is going to be easy or that life isn't going to be....."life", but that He is with me. He will never leave me. He is faithful. He is merciful. His love is never ending. The more I live connected with Him, the more I bring my petitions before Him, my weaknesses, my failures - the more His Holy Spirit empowers me to face circumstances that are beyond my control and I can have peace in all circumstances, joy in trials, faith in hardships.Whatever we face, with Christ, there is always hope, and I can put all my expectations in Him because He never fails.

Toby's Summer Update

No news is always good news where Toby is concerned. Although, we have had some things going on, it’s been hard to find the time to sit down long enough to let you know how he’s doing. Overall, he’s doing well. We have gone four months without a hospital stay and that is always a success in my book, and I’m truly thankful for the downtime.

He has had a lot of appointments in recent weeks/months. He was fitted for compression socks to help with his circulation because of his legs/feet turning purple. I will say that it has improved. It’s also Murphy’s Law – as soon as we get the socks, his circulation gets better and he doesn’t really need to wear them as often. I think the warmer weather helps too.

Three weeks ago, we picked up a pair of knee splints, which are braces Toby will wear at night to help stretch out his knees so they will straighten. They are pretty tight.

Which leads me to….spinal cord detethering surgery.

The neurosurgeon and I have been doing this dance for about a year of getting to know each other and him getting to know Toby. He was new to NCH last April. He is also very conservative when it comes to surgery, and I’m thankful for that, but it’s very possible Toby need his spinal cord untethered again. It’s been quite a struggle because his left hip is so tight and barely abducts anymore. It’s causing some skin issues, issues with dressing, cleanliness, etc. It’s really tough – really tough. All of this tightness in his legs, knees, and now his left foot – which now turns up and in, considerably – are in my mind pointing to his needing surgery. Last week we went to see the orthopedic surgeon about the hip, and he said there really isn’t much he can do for him either.  The neurosurgeon wanted to see if the knee splints would help improve his knees, etc.

It’s hard to think about him having this surgery – we’ve kind of gotten used to him being so tight and drawn up together, but it’s really starting to prevent him from doing ADL’s or activities of daily living like getting dressed. His legs will draw together and you can barely pry them apart. We still help him a lot with dressing his lower body because it’s so difficult. It would take him 15 minutes to get shorts on.  Even sitting in a chair is difficult because his legs curl up underneath him. I’m amazed when I think back to just about three years ago when he was so loose, he could go from lying on his stomach to sitting, while moving his legs into a splits position. It’s hard to explain, but he just seems too young to have so many difficulties.

June 17^th, Toby got his second set of Botox injections in his hips. I thought for sure that he would need detethering surgery right away, but the Botox has bought us some more time. We saw neurosurgery last Friday and had a long discussion about it. He basically said if he did the surgery, it would be very aggressive. He would find the point where his function is lost on the spine and cut the spine right there. Of course this made me cringe. It seems so permanent and what happens if there’s a new medical development that allows him to walk later in life, but yet we made the choice to sever his spinal cord. His thinking is to minimize having to go in and detether again. The more you do it the more scar tissue you create and the more you have to do it. He said, “It’s crazy that kids like him at eight years old are in here with 30 surgeries.” I agree. He did ask if things got worse after every lengthening surgery. I can’t say that it happens each time, but over the past two years he has gotten progressively worse. The neurosurgeon is going to pow-wow with the orthopedic surgeon, and they will get back with me. We just aren’t sure what to do. A month ago before Botox I was already for the surgery because of the issues we are having. Currently, the Botox has helped a lot, his hips and knee contractures have improved – especially with wearing the knee braces at night.

August 7^th, Toby will be having surgery #30. This time he is getting a new set of VEPTR rods because he’s outgrown this set. It should be pretty routine; he’ll be in a few days. It won’t be quite as invasive as the full insertion he had about 18 months ago because the hooks stay and the rods detach and then are reattached. He does have one hook coming through his bone in his right hip, so we will know in a few weeks if they will have to fix that piece.

I apologize again for the delay in updates. We have been incredibly busy. I will definitely post updates when he has surgery in August or after we hear back from neurosurgery on what’s next.