There comes a point, where (big sigh), you're ready to talk. About a month ago, I was ready. We were having a Saturday night worship service at our church and people were asked that if they wanted to give a testimony, to let the organizer know. So, about a week before, I committed. Big step... As I prepared that week...man it was hard. Not hard talking about the actual events of Nolan's diagnosis, but rather, hard becuase I wanted to be clear about what God has been doing in me rather than the pain and thoughness of the situation.
We've been so blessed at our new church here, and, when you find a church that you want to commit to, it's also (I think) important to let people into your life so that you can be ministered to. Someone very wise said to me not too long ago, "Everyone has a time in their life where they need to be ministered to, and this is yours." You never want to be that person who's always got a crisis, or be that new someone who comes in and says, "alright here we are and here's all of our baggage." But, in some ways, that just so happened to be where we were at the time, and our church has loved on us and cared for us in a way that I won't ever forget. They've been SUCH a blessing.
And thus, I decided to share with the church family, where we were. I share this now with you, all of my blog readers, as a way of saying...here we are, look what God's done, how great is He!
When I first started putting this testimony down in words, I had a really hard time. I felt as though I was focusing too much on detail of the events that have brought is to this point, rather than what I was really wanting convey...how good God has been to us. My main focus is to share how we’ve seen the Lord through a trial in our lives and how He’s shown himself faithful to us.
First I have to start with some detail so that you know what I’m talking about, so here we go…
June 3, 2009 is a day that changed our family forever. We received news that a blood test for our Nolan came back positive for a chromosomal abnormality called Williams syndrome. My heart sank and cried, “no!” After a few minutes of getting the very basics from the doctor as well as an encouragement to call back once we had had some time to process it all, we hung up. It was nap time at our house and so it was quiet. Brandon and I sat in our living room in silence for a while and then reality set in. We went to the computer to research the syndrome some, and became very overwhelmed with the long term possible outcomes for Nolan bug. Along with any syndrome comes a laundry list of health and developmental problems. Some of these kids have stynosis, which means narrowing, of the arteries. They can also have kidney problems, a 75 % chance of some form of mental retardation, a lifelong delay of gross and fine motor skills, eye problems, etc, etc. Will he be able to go to a regular school? Will he be able to live independently as an adult? Brandon encouraged me to be informed, but at the same time not to dwell on what could be, because really doctors only can know so much. We set up a game plan to have Nolan seen by all the necessary specialists to insure that his body is healthy. Quite honestly, we’ve spent most of the summer seeing doctors and having tests run. Once we had a game plan, we decided this…nothing had changed. Nolan’s our boy, we are crazy in love with him, we’ll always do what’s best for him at all times, just like we do for the girls…it just might look a little different. I haven’t done any more research, in large part to protect myself, but also because I just can’t look at my Nolan all the time thinking about Williams. I don’t want this to define him as a person. Although at his age he should be crawling, Nolan doesn’t crawl yet because, well, he just hasn’t (Side note: How amazing is it that since I gave this testimony, Nolan bug is crawling!). When it’s his time, he’ll do it…not because he has Williams syndrome.
I’d be lying if I told you that those first few weeks after the diagnosis that I wasn’t angry. That I didn’t try to pinpoint a sin so great that God decided to discipline me for it by allowing me to give birth to a child with special needs. “I just don’t understand how this happens," came out of my mouth a lot. We have 2 perfectly healthy girls with no family history of anything like this…I just don’t get it! The odds of this happening are 1 in 20,000….and it’s us! Man! I just didn’t understand why God would allow us to conceive, only to allow us to watch our child struggle? I had never been so horribly sad in my life. I can’t do this Lord! You picked the wrong mom for Nolan! I just don’t understand…
Now I want to share what I’ve learned and where I am now.
First, Nolan is a complete blessing. He wakes happy, smiley and is generally always this way. He works hard during his 2 hours of therapy a week and is making wonderful progress, while not falling any further behind developmentally. How can I argue with that? Only by the grace of God, I can’t be sad, for many reasons, but especially because, he’s not. Through all this I’ve also learned that the only way you can explain the odds of 1 in 20,000, is God. Children are gifts from God, and that goes for Nolan too, even “flawed” by earthly standards. He gave Nolan to us specifically, intentionally; to not only teach us things, but also for God to use us for Him. I don’t know what that purpose is, and I may never know. One of my biggest concerns is watching Nolan struggle, or that fact that he’ll more than likely have a "hard life." But, what is normal? God is constantly changing my perspective on what’s “normal.” It’s easy to compare him to other kids his age and consider them as normal. But Nolan doesn’t seem to care that he’s not doing what they are doing quite yet. So, who’s attitude needs changed…mine, or Nolan’s?
If you ever need an earthly picture of unconditional love…watch our girls with Nolan. Their love and service for him is so perfectly childlike and innocent … it’s a daily reminder to me of how I should love and serve others. He’s their Nolan…nothing more nothing less. They don’t know he’s delayed or that he could be different than other kids. The compassion I see them developing for others is a blessing, one in which I wonder if they would have if it weren’t for Nolan.
I also know that God didn’t give us Nolan to punish us. He’s a loving God who wants what is best for his children, even if it means a hardship. He’s always working together for the good of those who love him. If I believe that, then I know that somehow God will turn all of this into good, because he’s promised that. If Nolan was a punishment, what does that say about Christ’s sacrifice on the cross? It would say that His dying covered most things, but not all things…and I know that’s not true. If you would have asked me 5 years ago what would be the worst thing that could happen to me, other than losing a child, it would have been this…a child with lifelong problems. Now, I can say it’s been a blessing and it’s taught me so much, just in 2 months .
Prior to June 3rd, the 2 previous years had been the hardest of my life. Our move here 2 years ago this December was incredibly difficult. We were officially on our own with the kids, no grandparents to help, no date nights, no friends, etc. Now I can see God moved us here in perfect timing to be close to Riley. God completely orchestrated that to ensure that we’d be close to all the right doctors. I knew from the moment Nolan was born something wasn’t quite right, and throughout the next year of wondering and waiting, it was borderline torture; sleepless nights, moments of sheer fear of possible outcomes. To finally have an answer, although tough to swallow, was somewhat of a relief. Ok, we have an answer…let’s move on already!
Some of my favorite song lyrics come from Bethany Dillon: the calmer of the sea, here in this room with me, so gently welcoming the weakest things in me. I’ve felt this a few times in the last few months. In my times of great despair and sadness, I’ve felt the Lord’s presence. Never in my life, as I’ve cried with a broken heart, have a felt such an overwhelming peace that I know only comes from the Lord. It’s so comforting to know that such a great and mighty God welcomes our weak moments, because it’s only in those moments where we fully learn to lean on Him by embracing His will I don’t want to be a “plastic person” with a fake smile, but rather I want to be able to say that it’s been hard, I’m broken, but man I can see the Lord in this.
Some dear friends of ours who counseled us after the news encouraged us to make a mission statement for our family. This is the legacy we want to teach and leave with our kids…Based on Romans 8, our family will choose to be thankful and “rejoice in our present sufferings (vs. 18).” “And we know that in all things God works for the good of those who love him, who have been called according to his purpose (vs. 28). “ Christ’s sacrifice on the cross was sufficient for all” and therefore we know Nolan Levi was not a mistake, chance, or luck of the draw, punishment, etc, but rather a gift and an opportunity to be “conformed to the likeness of His Son (vs. 29).” “Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword (vs. 35).” Christ loved us enough to die, we know that because of the cross. Nothing can separate us from Him. We will rejoice in our hardships because they are a reflection of His love.