Wednesday, September 4, 2013

A Softened Heart in the Making

When I sit down to write, or even think about it sometimes, it's almost like falling in love, because I get swept up in the process of getting my thoughts out on paper, it's sort of a romance at times. It fills me up, while allowing me to empty the things that have weighed me down, and it's quite spiritual, even when the contents aren't particularly so (because my faith is very integral to the way I try to process things). It's pretty great. But I don't do it enough, if I'm honest.

Here's something that's been on my mind lately about our parenting journey so far (which you can probably gather from prior posts has been uniquely challenging). When I fearfully, but honestly shared with my husband several years ago, early in our marriage, that God had given me a special spot in my heart for people who have special needs or are "different," I also shared that I'd be open to parenting someone like that, if God called us to that.

It was scary, because I had never said anything like that out loud, and most people can't even imagine that reality, unless it becomes a reality that they have to learn to navigate. The special place in my heart is something that God planted in me at some point during high school or college, I think. I've seen such beauty in the uniqueness of those who are visibly or otherwise different, that points to how uniquely beautiful it is to be created by God, and I've seen such joy radiate from those individuals who have come to learn (as I strive to learn) that their value is in belonging to the Lord and having been created by Him. It often, in fact, brings me to tears with the worshipful response my heart has to God, when I get the joy of interacting with someone. They delight in what they are able to do, even when the list of things that they cannot do in the traditional way may be a long (or short) list. The world focuses on what that person may be missing due to their differences, and often responds with pity and/or ignorance, but I see the beauty of not being distracted by trying to keep up with the world, and walking in step with the leading of the Lord (whether walking itself is literal or only spiritual).

Fast-forward to the journey that we've been on these last 19 months or so, and over the last few weeks, through a couple of God-lead conversations, He reminded me of that conversation with my husband those years ago. He also revealed to me that the special place in my heart for the beauty of being "different" or having "special needs" was in fact Him preparing me to parent our sweet little guy. While there are no diagnoses at this point, beyond some (non-life-threatening) food allergies, his small stature and developmental delays remain a cause of concern and the need for regular therapy from occupational, physical and other therapists (who focus on sensory, gross and fine motors, and cognitive play) and some on going tests and follow up with a handful of specialists to see if a diagnosis can be found. His small stature has always been a topic of conversation, but if you met our respective families and looked at the size of our extended families' statures, you would not be surprised that he is small. However, he is now so small that he is no longer on the graph paper that the growth curve is on, so they are quite concerned at that. Their concern is fine, but can be exhausting, expensive and time-consuming at times to cross those things off the list of things to do.

When I thought about people who have special needs and those who parent them, I thought of beautiful communities of support and guidance from other parents who were navigating similar, related courses, even though none are identical from what I understand. Because we don't have a diagnosis, we don't really fit into one of those communities that I once imagined. God has been reminding me over the last few weeks that He wants to be in communion with me, with us, as we journey together to learn how to parent and care for our son. Perhaps the community that I imagined would have kept me from running to the Lord in our times of frustration, confusion and times that we wanted to quit this stuff of "eliminating major concerns," perhaps it wouldn't have. I don't know. What I do desire is to walk closely with God through this journey and to remember that we aren't supposed to have the strength, perseverance, unity in our marriage without His power, His Spirit at work in us, His leading.

Now what? I've scheduled the skin-testing for allergies and will be calling to schedule an MRI of his brain and a visit with the pediatric nutritionist at Children's. Sometime before the end of the year, we will likely meet with the geneticists at the U of M. The list goes on, but that's not the point. God's reminding me and teaching me to delight in my son and the joy that he brings to our lives. The other things are details that God has entrusted to my husband and I to do, as we're able. I'm also learning it's ok to take breaks from the testing and doctor visits, as long as we get to them within a reasonable period of time. It's ok to be done for a while, as long as I'm resting in the One who created all of us. And as long as I do get up and keep going after I've had a bit of rest.

The Lord has been teaching me a lot the last few weeks, but these are just a few of the things that He has been teaching me and He has really been softening my heart again towards all of the challenges we face, so that I'm able to enjoy the non-challenges so much more.

He is faithful. He has never left me to fend for myself. He has never left me unequipped to do what He has called me to do. Why should I think any of those things would be different now? I shouldn't, but sometimes in the middle of the most tiring days or scary tests, I forget for a moment. God has been so kind and consistent in reminding me of who He has created me to be and what He has equipped me to do (and will continue doing so). I also know it probably pales in comparison with the challenges and frustrations of families who parent or care for children with known diagnoses, because a diagnosis doesn't put an end to the doctors visits, medical bills, or pure exhaustion beyond "the norm" of parenting in general. My prayers have been increasing for those families I know who have challenges so much more extreme than ours, some even life-threatening, as God has brought this reality to me as well.

This has been a very refreshing couple of days indeed, and I needed it very much. On to the next adventures, appointments and beyond that - enjoying my family and giving them my full attention, love and joy that is from walking with the Lord. And I want to figure out how to better love and support people who are parenting kids who are "different," whether diagnosed with something, or still journeying to discovering if there's even a diagnosis to be found. And I hope that what God is teaching me might be an encouragement to them as well.