A Little Food For Thought

Some days it gets to me, I won't lie. Spina Bifida is going to be with her forever. There is nothing I can do to "bring back" the feeling she's never had. Nothing I can do to take away the daily rituals she will have to do so she can eliminate waste.  Nothing I can do to ever change the fact that there is a tiny machine in her brain, making a little bump behind her ear...a machine whose only job is to keep her here with us. None of this goes on vacation.  Nobody here lives a day without making changes to adapt to the demands of our new normal. This isn't a disease. It won't go away, though we sure do take lots of medicine. The doctors we see are nice, but they don't usually "get it".  She's not a medical puzzle or a list of hypothetical "if this, then do that" scenarios.  There is never a perfect answer.  We understand now why its called "practicing" medicine. We all do the best we can. I know a lot of my Christian friends thought that the fact that we had faith she would be OK means that everything would be perfect eventually. That these issues would just disappear.  And who doesn't want their problems to disappear like dandelion fluff in the afternoon breeze?

But we were never promised perfect. And faith does not take away every challenge, or frustration or legitimate problem.  Faith just gives you the ability to walk forward and not run off  just because things are tough. I'm beginning to understand that humans aren't really designed for happily ever after. We think we want it but we don't know what to do when we get it.  We stagnate. We fester. Just look at the people who have the finances to do what most off us only dream about.  Most of them use that money in ways that creates problems.  Drugs, thrills, risks.  Its only in challenge that we thrive. Its only when we are pushed that we go forward. We chase happily every after, but like the dog chasing the minivan, we have no plan for what to do if we actually catch it.

 I understand that there are some people who will not stick with me as I go through the daily motions of our particular family challenge.  They will get tired of hearing about E's latest UTI or seizure or this or that. They will wonder why we haven't gotten over it, got the best of it, "won".  They will want to ignore the fact that some challenges just don't go away. That there are some thorns that are never dislodged. Maybe because their own challenges are more easily hidden.  Maybe because they want to believe that we are "doing it wrong" and if they "do it right" they can have their happily ever after without any struggle. Without paying any price. And you know what, I won't blame them. I won't even be offended. Its human nature. But I also know its human nature to stand by what you love. And that the people that love me, BJ and BG, will continue to stand by us as Evangeline grows. Will continue to cheer her on, no matter how many setbacks.


I've said all that to say this..... the people in your life who love you- they will stand by you too when you struggle with your own challenges.  They will cry when you are sad, and be happy when you find success. When your stress and struggle pushes you to stretch yourself, they will cheer you forward.  Don't settle for less. Some people in the Church will give up on you if you don't "act perfectly" after a little while. I'm sorry they are so hard on themselves and you. You won't always find that you can be perfect. Faith doesn't guarantee that. Faith pushes you to try and do your best- and not run when things get tough. BG has taught me that when you make a mis step in life and fall, just keep picking yourself up. You improve each time as long as you don't stop striving. Don't let people bad mouth you for not "winning" at everything. For having something you still struggle with.  God is the only one who doesn't make mistakes.  He didn't make a mistake with you. you aren't a bad person because you struggle. Everybody has struggles.  Some are just more hidden than others. Don't give up. Whatever YOUR struggle, keep trying to overcome.  Let the negative people walk out of your life. Keep moving on.