There really is no way to tell a physician about the fear and pangs of loneliness I felt every day as I sat by Aiden's bedside in the NICU. There is no way to explain that he was all I did other than parent Sophie, he was all I worried about for months before and after his birth. I remember recapping for her the way that NICU experience was, that Aiden stopped breathing so many times, but that he Apnea'd and Bradycardia'd so many times I lost count. I was so terribly frightened that he wouldn't come home. ever... AND NOW LOOK at him! Aiden has defied the odds ((the doctors all said, "Don't be surprised if he never walks, or never talks")), and has blessed me with two of the richest and most exciting years of my life! And, after looking back over the information in preparation for this office visit, I reflected the anguish of that period of our life, but also I was deeply thrilled that I get to spend these wonderful moments with him. I get to enjoy his smiles, his hugs and even his sometimes nasty two-year-old attitude! I didn't expect that we'd ever be able to say that he's developing relatively normally at this age! I'm overwhelmed with gratitude for the health of my children right now.
So, after reliving one of the most terrible memories of my life, I did recall one thing that stuck out through all the hard stuff... I remember that every day, no matter how bad it got, I would lean on God and pray. I remember sitting by Aiden's isolette singing, "Jesus loves me, this I know, for the Bible tells me so, little ones to him belong, they are weak..." and I would always lose it right at that point and cry. I just didn't know what the light at the end of the tunnel would look like. So many questions lingered... He was SO weak.
I also remember so many sleepless nights where I would have to wake up every two hours to pump or to call the NICU nurses for a "status check" on Aiden. I would sit at my bathroom sink, in a fog of sleepiness and think, "Jesus, draw me close, closer Lord to you, let the world around me fade away" and I would worship him as I repeated this stanza in my head. I would tell him to give me peace as I learned more about Aiden's ongoing problems, and possible future diagnoses. I was thankful that I had God to lean on then, and I am thankful now, too.
Please remember that, no matter what you are facing, that God is there. Just close your eyes and ask him to draw you close, and he will. Trust me. He heard my raw cries and my anger filled rants and saw me through them... As I remembered this last night, it dawned on me... God doesn't do things that are bad to punish us, that's what the whole new covenant thing is about with Jesus' death and resurrection. He sent his son to live and die and rise again so that we would no longer have to bear our sin or our grief. There is no greater love in the universe than the love that God has for me. None!
And, when we got the news about Histiocytosis in January and though I didn't know how we'd get through that, I knew we would. And, as long as we just take things one day at a time, I know that we'll be okay. Aiden's Epilepsy isn't going to go away unfortunately, and Sophie will have to live with Histiocytosis for the rest of her life, but as for us, we will be okay. My mom gave me this little ceramic worm that sits on my mantle by the clock one week when things were especially trying. It has a saying attached that says "Inch by inch it's a cinch!" That's so true. If we take things one inch at a time, and we look at things with a little perspective, everything is a little easier to swallow. It's easy to get overwhelmed by life, but God GUARANTEES, that if we lean on him, we will find comfort and that he can see us through ANYTHING. Things may not always turn out like we had planned them to, but in my life, I'm glad that they haven't!
People have asked me, "How do you do it? How do you manage two sick kids?". Granted, there are challenges, but there are challenges with healthy kids and EVERYONE deals with SOMETHING. We just take it one day at a time and lean on God EVERY day!
Have a great day friends!