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Normally, writing, for me, is a pretty fluid thing. Usually, as soon as I begin to type or put pen to paper, the words come. I’ll even hit a point that I will write and not always know what was said until I am done. Yet today, as I write this, my brain is mush. A thousand Ideas trapped, most of which unable to escape the exhaustion and fatigue that seems to be the constant state of my brain. I am always tired.
But, that late Saturday afternoon in June that I drove sweet Teagan to the hospital, a new kind of tired plagued my mind. We ended a great family day at the pool, arriving home to find Teag's have her first visible seizure. And, like with most things in our family, it wasn’t a small one. Over an hour later we had been triaged through Children’s ER and finally got it stopped. Thankfully, she was able to recover with little evidence that it affected her overall brain function. She has had varying mini seizures since, but it seems our new diagnosis of epilepsy is relatively managed for now. Now you would think with the way we live our life and everything that has gone on in our family and with our children that this would be a pretty par for the course deal. In March we had emergency brain surgery on the same kid and two weeks later had elbow surgery of another. My kids have been under the knife multiple times, the hospital is a regular place for us, as I have mentioned before, but this time I got a little rocked.
In the grand scheme of diagnosis, you wouldn’t think seizures would be anything more than par for the course. And in many ways, it really isn’t. It is really something that we can manage, that we knew could be coming, that should have come a long time before. But it changed things. We have lived in the reality of being a special needs family for the last many years. Yet somehow, this summer of growing as a special need’s family took hold. Movie theaters really not an option if we want to go with all 6 of us, restaurants we need to be more selective about. At one point this summer I was pulling Teagan’s chair while pushing a buggy through Ikea. We no longer have a special needs baby, we have a special needs child, a disabled child, and two typically developing children. It is good, it is sweet, it is hard. It’s hard for the kids to understand the world is difficult for everyone at some point no matter what their level of ability is. It is hard on Mark and I’s relationship, figuring out what time looks like, not only with 4 growing kids, but with a child, that although she is making huge strides is as dependent on us as though she were an infant. It is just hard.
And, as I sit here and write, I want you to know this isn’t the post I wanted to put on here. I have no problem sharing the trials of what we have gone through, but it hurts to admit that I am standing in a place for which there is no road map. No two families are the same, and no two special needs families are the same. It is hard to admit that I have felt so confused and tired and lost. I don’t like admitting that it hurts getting yelled at from the back of a theater. It is hard to help my kids learn compassion, not for others in our position, but for the people that stair and do the yelling. Teaching them what it looks like to learn walking in someone else’s shoes, when we are the example I am using. I hit a place this summer that I have always believed, but I have had to practice living out. A place in which I recognize that while we may be able to roll with our punches, we live in a world that can’t always. And that’s ok. I don’t expect the world to roll with our punches and I wouldn’t want it to, because it would take away what makes the world around us so unique.
God gave us an amazing gift. The gift of a world that even in its brokenness is full of grace, not because of anything we have done but because what happened one day over 2000 years ago on a cross.
The beautiful thing about our crazy messed up world and crazy messed up life, it that while I get frustrated and down and discouraged, I know I serve a God that doesn’t. The road that I am walking that feels so unfamiliar is all too familiar to the map maker.
The God that pieced together my beautiful family also prepared the way for His best in our life, which extends so far beyond my ideas. He prepared the way for the community that would surround us. He prepared the way for a curly haired 10-year-old girl to get to experience selflessly loving someone that a lot of the world would see as unlovable. He has prepared each beautiful, and what feels like to me, clumsy step in such a way that I could see and experience more of Him with each passing moment. And, once again, I have been reminded of my brokenness. That there was grace enough for even me and grace enough for our crazy broken life. And so once again, I stand in surrender. Then I press deep into the heart of the father, take a sip from my coffee, and pray. Pray for grace for today and thank Him for each measure of grace to come, because it is only in and through Him that there is grace enough.
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