When granted a great miracle, it can be so easy to gloss over all of the “stuff” that comes along with it… the aftermath, the emotions (both good and bad), the guilt, the work, the weariness, the unknown. These are things no one talks about when a miracle takes place, when prayers are answered, when we’re standing on the mountaintop.
But, those things are there. Believe me, they’re there. Our family has been graced with the incredible gift of our Harper Lynn, the baby girl that was not expected to survive, much less thrive. We’ve gone through the pits of despair all the way up to the glorious mountaintop as God has enabled her to defeat the odds and become a living, breathing picture of His grace and power. As her mom, I’ve held her close and watched her blossom into this joy-filled, determined little person. I’ve heard the doctors and nurses tell me that she is amazing, that she is indeed a miracle.
Before I go any further, let me say that NOTHING diminishes that. Nothing that happens with her will ever be able to undermine the awesome power of our God and the miracles that He has shown us. Even if Harper were to never progress any further, His power and sovereignty would remain, and she would be a testimony of that. I do not doubt that for a minute, and I am constantly aware of how amazingly blessed I am to be her mom.
I have been in awe of how far Harper has come. She is so very smart, social, happy, and has an intense excitement for life. I cannot help but be encouraged and feel God’s presence when I’m with her. Yet for all of her progress, today the doctors had to sit me down and explain to me that we still aren’t quite there. Harper had her yearly developmental check at the NICU clinic here in Wilmington. It’s a great opportunity for us to meet with specialists and therapists and get our questions answered, and they spend time with Harper testing her on various areas of her development to see how she is progressing.
The visit itself tends to be emotionally draining on me as I sit down with the doctors who were there from the beginning and rehash Harper’s story. We have to go back over the experience, her issues, the diagnosis… and while it is painful, there is great joy in holding her in my arms as the doctors and specialists refer to her as an amazing miracle. Today, Dr. D. told me that while he doesn’t often remember a lot about all of the babies that come in, he always remembers Harper. He was there the day she was born, and he reminded me of how perfect she looked at birth despite all of the issues in her brain. Then he proceeded to tell me that reading her chart beyond that day is like reading a horror story, and he can’t believe she is the same baby… and all I can do in response is to say, “God is good and we are blessed.”
Harper’s testing seemed to go well today. Her growth is right on track, and she wowed them all with her infamous stink-face grin and mimicking everything they said. She was happy and cooperative, and I was told that cognitively-speaking she is very advanced. She thinks and understands and responds well beyond her age, and the testing actually took longer than usual because she was progressing several months ahead. However, there was a big gap between that and her motor skill development. Both her fine and gross motor skills measured well below what they should be. This was a blow to Mommy because we were actually hoping to be discharged from all services after today. The goal was for this to be the last appointment and for Harper to no longer require any therapies. But, based on today’s testing and the opinion of three different specialists, we will continue with occupational therapy on a weekly basis, add weekly physical therapy back to our routine (after having previously been discharged), and follow up with the clinic in another six months again.
While this is in no way “bad” news, I found myself discouraged a bit after sailing so high for so long. In my mind, we should be finished with this stuff. It’s behind us, Harper is great, and I’m ready to move on to “normalcy” (whatever that may be). I became selfish in wanting no more therapy or doctors, in wanting Harper to be considered “perfect” and “normal, ” in wanting things to go my way instead of God’s way. And, if I’m being completely honest, with all of this comes a lot of fear. There’s so much fear in loving and raising a child who has suffered neurological damage- there is so much to worry about, so much unknown ahead, so much that is unpredictable, so much that can go wrong so very quickly, and it can be terrifying. But in all of my wants and desires and fears, I forgot to recognize whose child she really is. I lost sight of whose life I’m really living. It isn’t about me. It isn’t about what I want or don’t want or know or don’t know. It isn’t even about Harper. It’s about God, and I need to align my will with His. His plans are right on time and for our good no matter what they are, and it took today to remind me that He has already blessed us far beyond what we could ever deserve. It’s time to embrace Him in the here and now, and live a life of praise and thanksgiving for who He is.
“Fear the Lord your God and serve Him. Hold fast to Him and take your oaths in His name. He is your praise; He is your God, who performed for you those great and awesome wonders you saw with your own eyes.”