Wednesday, June 3, will be a day we will never forget. Our dev. ped. from Riley called to inform us that Nolan's blood work came back positive for one of his "hunches." Not what we were expecting. Sweet baby boy has a genetic syndrome (the actual name we are choosing to keep between us for now). What does this mean? ... that's usually the first thing we are asked. Well, for starters, it's a rare (1 in 20,000) chromosomal "mess up" that happened at conception. It is not terminal. We know what possible long-term effects (providing that he's a "worst case" scenario) will be and it's scary. There could also be a few other "health conditions" that can accompany this syndrome. We currently have 4 other specialist appointments lined up to have these checked out and hopefully cleared.
Ok, there, I said it, it's out, breathe...
I won't lie, we cried for darn near 3 straight days. Why us? Why Nolan? Why our baby? Those odds, 1 in 20,000...and it's us? Is this really happening? I think we both woke Monday with a little more perspective, and here is how we are going to approach this situation. Really, nothing has changed. He's our baby and we love him...a deep, crazy, abundant love. He's a joy to have around. We, even though circumstances are a little different, will still do exactly what we have done with raising the girls, and that's to always do what's best for each of them. Will Nolan's life be hard? Probably. Will he always be delayed? Probably. Do we love him any less? NO WAY! I can't sit here and honestly tell you that I am ok with all this quite yet. That I don't ache when I think about it. That there isn't still fear, grief, and sadness. Even, that I can see the Lord in all this...because I would be lying if I said I did. However, I can say that I know in my head that He's in control. That He made Nolan perfect in His eyes, and that He's given him to us for a reason. I don't know what that reason is, and maybe I'll never know. I believe what the Bible says, and I believe in the promises the Lord gives. I believe He loves our family. It's hard to really, truly feel that right now, but I know it. I would imagine that as time moves on, I will be able to feel it as well.
We've spoken with the dev. ped. this week. We said, "Ok, we've cried, we're ready to get a game plan, and move on." Life doesn't stop, you deal and you move on. So, with that, he's booking other specialists for us to see and we're setting up the appropriate therapies Nolan will need. And like that, we move on. We treat Nolan that same as the other 2, and we expect him to do all the same things, just maybe not in our time. He's our baby...nothing has changed.
In Matthew 8 Jesus and his disciples are out on a boat and a great storm comes, but Jesus sleeps. They come to him and beg for him to save them. Jesus says, "You have little faith, why are you so afraid." Jesus immediately calmed the storm. Jesus was able to sleep on the boat because he had no fear, knowing He was in control. He wanted the disciples to have faith in Him...perhaps, testing their faith? Please know that I don't think for a moment that Jesus is sleeping right now when it comes to our situation because He's abandoned us. But, rather, maybe he's sleeping and at peace because He's in control, and He wants us to have faith in Him, like He wanted from the disciples. For the last year, I've prayed, "Jesus, heal our baby! " In essence, like the disciples, "save us!" Clearly, that wasn't His plan. I need to sit back, have faith in my Creator, and wait. Jesus is calmly sleeping, I want to also.
We feel the prayers of all of you who are praying...please continue. We are ok, really, we're ok. We're going to choose to embrace this trail as the Lord would have us, because it honestly is a choice. We can either wallow and be miserable, or we can embrace this (the good days and the bad days), and we enjoy our life with these precious babies.
A sweet, dear friend told me when I shared our story with her, "God's will will never take you where His grace and mercy are not." And with that, I'll end.