Milestones and Mistaken Expectations

My son hit his milestones on time for the first time since his birth. It was an exciting day. First, his preschool teacher came and did an evaluation; he was right where he needed to be socially and emotionally (even if he doesn't know how to play with other little children his age), developmentally, he was doing just what he should be doing. Yeah!

Then, we saw his physical therapist and his speech therapist; they both agreed that the problems we were seeing weren't significant enough to require ongoing treatment. He was discharged. The orthotist refitted his DAFOs and scheduled a recheck for three months - he may be done with those soon, as well.

All these milestones are very exciting! It is wonderfully delightful to see my son running around, imitating words and phrases, harassing his sisters and telling me "NO!"; in short, to see him being a "normal" little boy. It has been a long time in coming, and (as I've come to realize) by no means guaranteed.

When we began this journey (was it just eighteen months ago?!), I couldn't see past the seemingly endless number of medical appointments, visits to specialists, and therapy sessions. The list of tasks to practice seemed overwhelming, made even more complicated by the struggles and challenges of his older sister (who remains in OT and speech). For some reason (i.e. my innocence and ignorance?) I thought that when all those appointments were done, life would be easier, maybe even simple.

I was sorely mistaken.

Life is not simple. It is easier, because we aren't spending hours in therapy every week, and we understand how to manage many of the issues that drove us to therapy in the first place. But it is not "easy," at all. The issues remain; we just understand how to manage them better. His Cerebral Palsy, however mild, still impacts his life every day. His sensory issues (probably secondary to the CP) cause tears and trauma multiple times through out each day. Even something as simple as changing his clothes causes far too many tears. 

It is exhausting.

This isn't like a cold or the flu; he won't ever get "over it." He will continue to improve, and as the specialist who first diagnosed the CP said, he will do whatever he sets his mind to. But, it will never be easy. It will probably never even be simple. And that, like so many other aspects of special needs parenting, is a reality I wasn't prepared for. This journey has taught me many  unexpected lessons, and I've made so many mistakes along the way (and I'll undoubtedly make more, many more), but I'm definitely learning - lots!

Ultimately, I love my son, and I'm so thrilled with how he is doing. 

Even though I've made lots of mistakes, I'm going to celebrate his milestones, 

and thereby meet some of my own. 

Appearances can be Deceiving

Yes, this is the laundry pile, affectionately known as Mt. Foldmore.

My life is not picture-perfect; far from it, actually. Every day, in my home, you can find things in places where they do not belong. You can see evidence of poor choices. I make mistakes; I say, do, and think the wrong things. I don't look beautiful, I'm not skinny, I don't manage my time right, and my house isn't perfectly decorated.

It is easy to compare myself with others and feel like I don't measure up. Honestly, I do it all the time. I believe the lies that everyone else's house is cleaner than mine, that everyone else's kids are smarter and better behaved, that everyone cooks better than I do, that somewhere someone is doing what I'm trying to do, and they are doing it right.

This belief has been reinforced by the disapproval of others. Whether letting my kids play in the dirt or nursing a toddler in public or homeschooling or having eight kids, I have (or haven't) done what someone somewhere thinks I should (or shouldn't) do. And I make mistakes, often.

Isn't she cute, even under all that dirt?

Recently, though, God has given me opportunity to see things from a different perspective. Instead of comparing the inside of me to the outside of others, He has helped me understand how He looks at me.1 Samuel 16:7 says "...man looks at the outward appearance, but God looks at the heart. " (Marchauna's revised version). I have certainly experienced man looking at my outward appearance and being less than impressed. It doesn't feel good, and even though I know God loves me, I still don't like it.

It has been interesting, lately, though. People I have approved of, people others have approved of, people who look good (at least on the outside), people I have admired as having it all together, have demonstrated that they don't. In each case, specific details were different, but the end was the same; they were living in a house of cards and it fell down around them.

Far from reveling in their downfall, my heart aches as I watch them struggle with the consequences of choices nobody could see they were making. Sometimes, they didn't even realize what they were doing themselves. They had the approval of others because of their outward appearance, but God knew, and what He said is true; you really do reap what you sow.

A dear friend recently told me that I can't compare the inside of me with the outside of other people, because appearances can be deceiving. Until recently, I didn't know how true that statement was. We are quick to compare our insides with everyone else's outside, usually coming away from the experience a loser. The world definitely looks at the outward appearance, and the world can be a brutal judge of what they can see. But, the really important part of a person is his or her heart. Only God can judge that, and He doesn't get deceived by how pretty the person is on the outside. 

To many, this thought is a bit less than comforting. But, when you realize that God already knows what we look like on the inside, He knows how broken and "untogether" we really are, and He loves us anyway, that is helpful. When you realize that He not only knows how broken we are, but that He made a provision for fixing up that brokenness, life gets downright exciting!

Kitty Litter and Ah-Ha Moments

Having learned very little about home management as a child, I have always struggled to keep up with chores. Spending several hours each week taking kids to medical and therapy appointments, as well as striving to teach kids in five different grades, plus Kindergarden and preschool, has challenged my weak domestic skills even further. This has reality has left in its wake many unfinished projects and a increasingly messy house.

Increasingly irritated with my children, I began to wonder why they didn't seem to care about the clutter and chaos that seemed to be taking over our home?! Didn't they see the things laying around, the dishes by the couch in the basement, the laundry overflowing the hamper in the hallway?!

Then, sweeping up yet another mess of kitty litter (thanks to my not-quite-two-year old son), the light bulb went on; my kids DIDN'T see the mess!! They didn't notice the irritating and annoying things I noticed, because they are so used to seeing things that way! Ahhh!!! This is all my fault!

The remedy, I've decided, is not to become Super Woman and leap tall piles of laundry in a single bound, nor will my problems be solved by twitching my nose or pulling special tools out of a magic carpet bag or snapping fingers at toys scattered all over the toy room.

The remedy is much less glamorous than all that. I simply have to set a different standard. Yes, it will be difficult, given my a fore mentioned handicaps and current limitations. But, by changing my attitude and expectations (that word, again...), I can change the standard. Simply by recognizing that I've set a standard I don't like, I have the power to change it! It will not be easy, change will not happen overnight. But I am excited about the possibilities! Or at least right now. As soon as I

The End of the Story

I love a good suspense movie, where you are on the edge of your seat, wondering what is going to happen, trying to piece together the details and figure out what took place. It is fun, in the comfort of a familiar location, to watch a story play out. I do not, however, enjoy experiencing the story. I want to know what the end is before beginning an adventure. It makes it easier, and much less scary that way.

Life has a way of not showing its hand, however, leaving very deserving people without an answer or knowing what to expect in the coming hours or days. And, in spite of our view of history (knowing the outcome from the beginning), it has always been that way.

Such has been my contemplation lately, as I've considered great Bible heroes. Men like Abraham, Joseph, David, Jeremiah, Daniel, or those men in the fiery furnace. Women like Sarah, Rahab, Esther, even Ruth, and especially Mary; they didn't know what was going to happen when their adventures began. And yet, they walked with great faith, trusting the God they served to handle the final details.

It is so much easier to look back on what God has done in the past than it is to look forward to what He promises to do in the future. Yet, the same God who was so faithful to provide and care for heroes of old provides and cares for us today. Their struggles were no easier, their fears no less overwhelming, their frustrations and disappointments no less real. Yet it is easy to discount their struggles because we are so far removed from them, and we know how the story ended. We read of Abraham's experience in a matter of verses, easily forgetting that he waited 25 years for Isaac's arrival. Twenty-five years. That is more than half my lifetime. I've never waited that long for anything!! And David had been crowned king of Israel, but spent years running from King Saul. He so feared God that when he had the opportunity to eliminate the usurper who refused to yield the throne, he would not do it, trusting God to keep His promise.

And Mary, when she submitted to the Lord in carrying Jesus, must have known that she would face difficulty. She understood her culture and knew Scripture well enough to recognize that she was literally laying her life in God's hands, because if God didn't come through for her, she would quickly find herself under a pile of stones, dead. Yet, without hesitation, she responded willingly to God's call.  And we applaud her for doing so.

But let's make this personal. What is God calling you to?  Is He asking you to take a step of faith and trust Him with your future?  Is He asking you to start something, or to leave something, or maybe (like Abraham) is He asking you to sacrifice something more precious to you than life?  We can't see the end of our stories. We don't know if God will miraculously intervene to avert tragedy, or if He will help us pick up the pieces after our world falls apart. And that is a very difficult position to be in. It can be easy to question God's goodness, character, and faithfulness; very easy, because I have done exactly that.

We can't see the end of the story, and we can look around to see where God has not behaved in a way that gives us confidence. We can think of people He didn't heal, accidents He didn't prevent, tragedies He didn't avert. And we experience fear. Yet, John said in his first epistle that those who fear don't understand love, because perfect love casts out fear. He goes on to say that those who fear have not been perfected in love. It doesn't really make sense to me yet, but maybe because I still experience fear, so I haven't been perfected in love. What I do know, after years of experience (including some great heartaches and disappointments) is that God is good and I can trust Him. Recently, after a particularly difficult day when I was emotionally drained and physically exhausted, I was ready to quit. Life was too hard, the struggles too much,  when (as an act of sheer desperation) I cried out to God "Though You slay me, yet will I trust You." Nothing changed, no miraculous provision came to make my life easy, but suddenly it wasn't so hard to take the next step. Turning my eyes to Jesus in my desperation transformed my day, or what was left of it. And I could praise God.

Job was the first person in recorded history to have uttered those words, but he most definitely won't be the last. I know I will repeat that phrase again, perhaps even through tears. With a confidence that I can't explain, I know that God loves me and He can be trusted. Maybe I am one step closer to overcoming fear and that desperate desire to know the end of the story, one step closer to leaving it all in the hands of the One who does.

Steep Learning Curve

As the mother of seven other children, I figured I was pretty well prepared to teach my youngest son how to eat. Little did I know I had no clue.

My youngest son has low muscle tone, secondary to mild Cerebral Palsy. Because of his low muscle tone, he has issues with reflux, among other things. He also has trouble with eating (who knew you needed such strong muscles around your mouth?). Kids have been tried to be picky and our SPD daughter's food choices are limited by what is overwhelming to her sense of taste, but none of the other seven kids ever had trouble with the technical side of eating.

Thus begins my education.

Because our son was diagnosed early (thanks to great doctors and specialists), we were able to begin services shortly after his first birthday. The speech therapist (who also works with our daughter) has been wonderful, giving me tips and tricks, and educating me about what is wrong with how my little man eats and what I need to do differently.

We've been working on this stuff for almost a year now, and I thought we were doing better. At least until  I gave my young son a hot dog (very carefully cut into strips so he wouldn't choke). He took great bites, and before I knew it, his hot dog was gone. Only it wasn't.  When I changed his clothes, I discovered that he'd done a great job biting the hot dog, but the chewing and swallowing left a little to be desired. And, once he got done with the part he could accomplish, he just spit the rest out on his shirt.

So continues my education.