June 3, 2009, 2 years ago, we received Nolan's Williams syndrome diagnosis. I'd known for a long time something was wrong which made the diagnosis somewhat of a relief. But, I won't lie, a little bit of me died that day, and that's not all necessarily bad. The Lord allows things in our life to change us, to shape us, to stretch us, and I'd never been so stretched in all my life....and it's ongoing. I believe one reason the Lord allowed this in my life specifically was to deepen my dependence on Him. I enjoy planning and having things in place...especially when I go to bed at night. Our house doesn't need to be clean, but for me, I need it picked up before I go to bed. I need toys put away, dishes in the dishwasher, and coffee loaded for the next morning. I get overwhelmed if I wake up in the morning to clutter, I need a clean slate. This is the only way to describe in a relate-able way, the first 2 years of Nolan's life...our life and family seemed to always been in a state of overwhelming clutter...a proverbial sink full of dirty dishes all the time, dusty wood floors, toys everywhere, and a constant state of disarray. No matter how much I pushed myself to "clean up" it never seemed to go away. I couldn't make it go away. And, I would wake up every morning to this. I would go to bed knowing I'd wake up to the "mess."
The only way to cope, really, would be to just try and not let the "mess" bother me. I'd try to focus on that day and what needed to be done, trying to cope with parts of the "mess" that were manageable. Let's be honest, no one ever died from a messy house, or piles of laundry. Some of the days weren't quite so good and the "mess" would really get to me. The side of Megan that could plan, plan, plan, and put everything in perfect order, and plan, plan, plan, and think about the future died 2 years ago on June 3rd. That side of Megan not only died, but, it truly could no longer exist. There's honestly no place for it in my life. I can't say, "in 5 years I'll be a nurse (where my passion is) and working 2 days a week while my kids are in school" because, well, I can't say that all my kids will be in school, on a full time basis without needed help from me. I can't say, "when my kids are grown and gone Brandon and I will travel" because, I don't know that all my kids will leave the nest. I can't say "when Nolan gets married" because it's unlikely he will marry.
My new, God given perspective and thought process is more like:
Lord, please allow Nolan to feel accepted and loved so that he doesn't experience what I read about most kids & adults with Williams do as they get older. Please spare him from ridicule and feelings of inadequacy so that he withdraws.
Lord, please protect the girls from feelings of resentment because sometimes our lives revolve around Nolan's needs and abilities.
Lord, if it be your will, would you allow Nolan's abilities to shatter the medical books so that his accomplishments could be far reaching for you...to show the world that Jesus can do anything.
Lord, when the mitral valve replacement becomes necessary, please protect Nolan.
Lord, so many children with WS die young as their little hearts just can't hold up or from other complications. I don't know Lord why you've allowed us to keep Nolan this long, but I ask Lord that you don't take him home to be with you until I've already passed as I don't know if I could withstand losing that little boy.
Thank you Lord Jesus for allowing us to have Nolan, that he is still here on this earth with us.
While some things in me died on June 3, 2009, many things came alive in me as well. A fresh, new, greater perspective began with the realization and true understanding that this life on earth is merely just a breath. This life can be hard, and some hands that are dealt are difficult, but, what do we do with that hand?
I want all of my children to have a deep fulfilling relationship with Jesus. The only relationship that will truly matter. The only relationship that will ever bring true peace and acceptance. The only relationship that will satisfy and never change.
Saturday brings about Nolan's 3rd birthday. 2 weeks ago we mourned a very sad day. But this week, we are celebrating so many of Nolan's accomplishments. His last session with his physical therapist, Karen, (who has been with Nolan since he was 5 months old) brought the realization that when she started with Nolan he was a limp baby that couldn't hold his head up. Now, Nolan the 3 year old, is running, jumping, climbing and just a half step behind his peers. This is a fact that brings all of us, including Karen, so much thankfulness.
I take great comfort in this passage,
Romans 8:31-39
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written:
“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”[j]
we are considered as sheep to be slaughtered.”[j]
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons,[k] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."
