After putting our adoption story out there for the world, as well as our daughter’s diagnosis of GA-1, we received tons of emails, texts and phone calls. The outpouring of love was amazing and Rob and I were truly touched by it all.
So many people had those initial feelings that Rob and I did of, “this is not fair” and “why is this happening to you guys after all you’ve been through?” Rob and I put the video and blog out when we were ready…I told him, “we’re going to end up consoling people b/c they are going to have the same feelings we had initially…” b/c it’s a shock. However, there were more sentiments of “you guys are so faithful…what a testimony, God is using you, we are blessed to call you friends, we can’t wait to see Reagan’s story unfold.”
I definitely feel like God is using us…I don’t know quite in what way (lean not on your own understanding), but I get that he’s handpicked Reagan and us for something special. Rob and I were talking, and we agreed that it’s weird for people to call us faithful. Many times in the past few weeks, we’ve felt totally faithless.
For instance, sometimes I want Reagan to be two years old…b/c if you can get through the first two years without any major health scares with this disorder, it’s a huge hurdle overcome, reason being is that in the first two years, there’s so much development happening cognitively as well as physically, emotionally, and socially.
And then I want Reagan to be five or six and starting school. B/c once you’re that age, you will have a better idea what, if any effects, the disorder will or has had. By school age, the culmination of her social and motor skills, and all skills needed to attend school will be present. We’ll be able to see our deck of cards more clearly.
I’ve also caught myself looking online at stories from families who have a child with this disorder and it makes me so upset. While most children can fight an ear infection, cold, virus or fever on their own…they can spell disaster for Reagan. The reason we have to be vigilant at the first sign of sickness is b/c when you get sick, your body starts to break down proteins…well, she can’t break them down like everyone else and instead, acid will begin to build up and it can attack the brain. Everyone’s story is different and Rob reminds me that the stories I read online are not our story…we only have Reagan’s story and it’s still unfolding.
But what is her story? What is the outcome? I want to know.
The video I made was done with the purpose to tell the beginning of her story, but it’s also to remind me of those verses, it’s just as helpful for me to watch it…it’s like my very own pep talk to myself.
Even though I want a full disclosure from God and I want it now, I’m not going to get it. I can’t control everything…a life lesson I am learning at every corner. Only God is in control of her story, and I pray that her story is a beacon of light.
A little secret I’ll share with you…during the first two weeks Reagan was home, when we kept this diagnosis close to the vest, several things happened. Our photographer posted online about a local family in Central Florida who went in for a 36-week ultrasound, and the heartbeat was gone. I couldn’t even imagine. The day we arrived at the hospital for Reagan’s birth, I had so much anticipation for the monitors to be hooked up to our birthmom. I’d never heard Reagan’s heartbeat, until the day she was born. It was such a HUGE relief, and an even bigger relief when she cried. She was carried nine months in the womb of a stranger whose world God selected to collide with ours.
Not only did I read this woman’s blog of her infant loss, I’d heard of another woman that gave birth at a local hospital whose baby never took a breath. Heartbreaking, again.
But, there’s a third story; from a friend of mine I went to college with. She entered my life for only a season and made a HUGE impact on my life back in 2001. She is one of the few people that God used to totally change the trajectory of my life. I can think of a handful of people that God placed around me in college to pull me close to him and draw me away from the life I was living.
My friend was nine months pregnant and I remember looking at her FB page and seeing all the encouraging posts, “we can’t wait until she gets here!” and “you’re doing great!”…
A few days go by, and I go back to check her page out and it is filled with condolences; she lost the baby. She gave birth at home to a 10 lb baby, but the baby wasn’t breathing. My friend had also lost a lot of blood and both mom and baby were rushed to the hospital. The baby never made it.
How could this happen three times in the course of two weeks and I hear about each of these stories? In those first raw moments of digesting Reagan’s diagnosis and going through emotions I never thought existed, I would see these stories on social media (among other stories of suffering from people I don’t know that would, seemingly randomly, appear on my wall). Seeing other people’s suffering and comparing it to mine, I felt like our deck of cards was not so bad.
But why did I need to compare our deck to someone else’s?
What I began to realize in those first two weeks is that we all have suffering…that’s part of the deal when you’re on this side of Heaven. We live in an imperfect world. Instead of worrying about “what are people going to think” I just started to lean on God…not on my own understanding. What else can you do when you can’t understand the plan? It’s not my plan, it’s God’s plan, and I’m just walking along.
I know that might be construed as faithfulness, but like I said, there were times I just wanted to fast forward to the future, or hit the rewind button b/c I felt like we were living a nightmare. When I look online at other stories from children with GA-1, those nightmare feelings re-surface…I have fear, so much fear for the future. And then I remember that FEAR is a LIAR.
Instead of giving in to the fear, Rob and I make conscious decisions to enjoy what God has given and blessed us with, right now. Even though I want glimpses of the future, I want to enjoy and savor this stage. It’s a dichotomy. She’s the cutest teeniest tiny baby…and I know this stage goes by so fast and everyone says to savor it, so we are. We love those big eyes looking right up at ours when we feed her and change her…and we love watching her sleep…and in the light of day, we even love the midnight feedings, or 3 a.m., 4 a.m. and 5 a.m. (aren’t you full yet?) feedings.
We both try not to think about the disorder and I feel like we’re getting into our groove as parents. I say that as if we’re pros…we’re just a month in.
Rob and I truly appreciate your prayers, texts, calls, FB messages, etc. We are taking things one day at a time…one test result to the next and trying to rely on God for each moment.
*Praise Report – Reagan’s first test results came back after being on the diet and her Lysine levels were low. This is good, they prefer them to be low vs. high…but b/c they are low, the dietician is upping her protein intake. It’s way too early to say, but maybe Reagan will be more tolerant of proteins as she gets older. In addition, ALL of her amino acid levels were perfect!